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Exceptional Parent Magazine 4/5/89 [OA 4423]
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Exceptional Parent Magazine 4/5/89 [OA 4423]
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Records of the White House Office of Speechwriting (George H. W. Bush Administration)
Mary Kate Grant Subject Files
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This is not a textual record. This is used as an
administrative marker by the George Bush Presidential
Library Staff.
Record Group/Collection:
George H.W. Bush Presidential Records
Collection/Office of Origin:
Speechwriting, White House Office of
Series:
Grant, Mary Kate, Files
Subseries:
Subject File, 1988-1991
OA/ID Number:
13880
Folder ID Number:
13880-006
Folder Title:
Exceptional Parent Magazine, 4/5/89
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19
2
7
5
NO
"call
April 5, 1989
PROPOSED PRESIDENTIAL ARTICLE
"EXCEPTIONAL PARENT" MAGAZINE
I am writing in response to your editorial letter "Dear Mr.
President" which appeared in the March 1989 issue of Exceptional
Parent. You have clearly stated my commitment to those of our
citizens with disabilities and appropriately highlighted the
progress our country has made in integrating people with
disabilities into the mainstream of American life. I wish to
take this opportunity to highlight those issues on which my
Administration will continue to focus its efforts and to
reiterate the commitment of this Administration to those with
disabilities.
Today, many individuals with mental and physical
disabilities are active participants in typical school, work and
community activities. They share in the ordinary routines of
learning and living essential for all. Yet, the challenge
remains to help all people with disabilities, including those
with the most challenging needs, to beomce integral parts of
their communities. To accomplish this goal, we must encourage
the belief and understanding that people with disabilities are
enthusiastic, valuable members of our society who want to
contribute to their country and to make choices about their
lives.
Educating disabled children in the least restrictive
environment possible is one way to achieve this foundation and it
2
is the mandate of the Education of Handicapped Children Act (PL
94-142) Educational and economic opportunity is the foundation
for success that will make all disabled Americans vibrant threads
in the fabric of their communities. This nation is committed to
the notion that schools are for everybody and should be measured
by their success in serving all students, including those with
which
disabilities.
The qualities and practices necessary to make
qualities
integration work for students with disabilities are the same
practices?
qualities and practices that characterize effective schools for
x
all children.
America's schools are responsible for preparing students for
a productive, satisfying future. For the typical student,
success is measured in outcomes such as meaningful work, a
healthy, safe place to live, and personal fulfillment, which
includes a a social network of family and friends. These goals
are equally valid for students with disabilities. Education in
an integrated environment assists in preparing students to live
in integrated communities as adults.
However, our efforts to insure integration of persons with
disabilities into our communities will remain unfinished as long
as there are talented, determined unemployed disabled Americans.
They want to be a part of the economic mainstream because work
enhances self-esteem and contributes to the overall quality of
life. We want to continue the emphasis on preparing special
education students for transition from school to employment.
Young people with disabilities continue to experience high levels
3
of unemployment despite increased educational opportunities
available to them under P.L. 94-142. At the local level, school
systems and adult service systems must continue to work with
young people, parents, and employers to develop appropriate
transition plans and services for each student that support their
entry into the work world.
To expand employment opportunities for those with severe
diabilities, we are encouraged by the success of
supported
ok to put
employment
nationally. Through supported employemnt, persons
quote
marks?
with disabilities so severe that they have never been able to
work in competitive employment, are placed into real work
settings, trained at the job site, and provided long-term support
services. Thousands of people, a few years ago considered
unemployable because of their disabilities, now hold paying jobs.
Research and practice show that supported employment is feasible,
desirable, and cost-effective. Companies throughout the country
that rely on a diminishing supply of younger workers for their
work force are hiring individuals through the supported
employments in increasing numbers. Programs like these, which
put the productive capacity of persons with disabilities in the
American economy must be encouraged
and expanded.
can
we
this?
say
But as important as government and community help is to
integrating those with disabilities into American life, the
family still remains at the heart of the solution. People with
disabilities need to participate in the same settings as others
and support and involvement are especially critical for those
or will this raise
funding questions?
4
with disabilities. The positive contributions of individuals
with disabilities to their families must be underscored.
Strategies for supporting families should enhance the dignity of
individuals with disabilities by recognizingg their positive
contributions. Indeed, many of our policies and regulations need
to be examined to assure incentives for family cohesiveness. The
key is to support not supplant the family.
As we move into the 1990s, significant challenges and
opportunities face our country in regard to those with
disabilities. While some people may have special needs and
present special challenges in integrating them into the
community. they are, first and foremost, human beings with human
needs. They need a decent place to live, meaningful activities,
relationships with other people -- and most of all, respect and
dignity. I pledge strong leadership as we move forward to make
these mutual goals a reality.
# # #
FINAL
PRESIDENTIAL RESPONSE
"EXCEPTIONAL PARENT" MAGAZINE
I am writing in response to your editorial "Dear Mr.
President" which appeared in the March 1989 issue of Exceptional
Parent. You have clearly stated my commitment to those of our
citizens with disabilities and appropriately highlighted the
progress our country has made in integrating people with
disabilities into the mainstream of American life. I wish to
take this opportunity to highlight those issues on which my
Administration will continue to focus its efforts and to repeat
my dedication to those with disabilities.
Today, many individuals with mental and physical
disabilities are active participants in typical school, work and
community activities. They share in the ordinary routines of
learning and living essential for all. Yet, the challenge
remains to help all people with disabilities, including those
with the most challenging needs, to become integral parts of
their communities. To accomplish this goal, we must encourage
the belief and understanding that people with disabilities are
valuable members of our society who want to contribute to their
country and to make choices about their lives.
Educating children with disabilities in the least
restrictive environment possible is one way to achieve this
foundation and it is the mandate of the Education for All
Handicapped Children Act (PL 94-142). Educational and economic
opportunity is the foundation for success that will make all
2
Americans with disabilities vibrant threads in the fabric of
their communities. This nation is committed to the notion that
schools are for everybody and should be measured by their success
in serving all students, including those with disabilities.
America's schools are responsible for preparing students for
a productive, satisfying future. For the typical student,
success is measured in outcomes such as meaningful work, a
healthy, safe place to live, and personal fulfillment, which
includes a social network of family and friends. These goals are
equally valid for students with disabilities. Education in an
integrated environment assists in preparing students to live in
integrated communities as adults.
However, our efforts to ensure integration of persons with
disabilities into our communities is unfinished as long as
Americans who are disabled remain unemployed. They want to be a
part of the economic mainstream because work enhances self-
esteem, because they want to contribute to their country's
productivity and global competitiveness, and because they
recognize that their talents are needed. We want to continue the
emphasis on preparing special education students for transition
from school to employment. Young people with disabilities
continue to experience high levels of unemployment despite
increased educational opportunities available to them under P.L.
94-142. At the local level, school systems and adult service
systems must continue to work with young people, parents, and
3
employers to develop appropriate transition plans and services
for each student that support entry into the work world.
To expand employment opportunities for those with severe
diabilities, we are encouraged by the success of supported
employment programs nationally. Through supported employment,
persons with disabilities so severe that they have never been
able to work in competitive employment, are placed into real work
settings, trained at the job site, and provided long-term support
services. Thousands of people, a few years ago considered
unemployable because of their disabilities, now hold paying jobs.
Research and practice show that supported employment is feasible,
desirable, and cost-effective. Companies throughout the country
that rely on a diminishing supply of younger workers for their
work force are hiring individuals through supported employment in
increasing numbers. Programs like these, which put the
productive capacity of persons with disabilities into the
American economy must be encouraged and continued.
But as important as government and community help is to
integrating those with disabilities into American life, the
family still remains in the center. People with disabilities
need to participate in the same settings as others and support
and involvement are especially critical for those with
disabilities. Strategies for supporting families should enhance
the dignity of individuals with disabilities by recognizing their
contributions. Indeed, many of our policies and regulations need
4
to be examined to ensure incentives for family cohesiveness. The
key is to support -- not supplant -- the family.
As we move into the 1990s, significant challenges and
opportunities face our country in regard to those with
disabilities. While some people may have special needs and
present special challenges in integrating themselves into the
community, they are, first and foremost, human beings with human
needs. They need a decent place to live, meaningful activities,
relationships with other people -- and most of all, respect and
dignity. I pledge strong leadership as we move forward to make
these mutual goals a reality.
###
EXCEPTIONAL
PARENT
Stariley D. Klein, Ph.D.
Editor
February 28, 1989
Parenting your child
Mr. M. Fitzwater
with a disabilità
Office of the Press Secretary
1170 Commonwealth Avenue
The White House
Boston, Massachusetts 02134
1600 Pennsylvania Avenue
(617) 730-5800
Washington, D.C. 20500
Dear Mr. Fitzwater:
I have enclosed a copy of the editorial, "Dear Mr. President,"
which will appear in our March issue (scheduled to appear in a few
days), because we would be honored to receive a response from the
President in time for our April issue. We will even settle for our
May issue since we are well aware that your office is a busy one.
EXCEPTONAL PARENT is a consumer education magazine for
parents of children with disabilities. We distribute 45,000 copies of
each issue throughout the USA. Based on survey data, we estimate
that 230,000 people read each issue of our magazine. I have taken
the liberty of enclosing recent copies and some other materials about
the magazine for your review--including the October issue in which
we published the candidates' statements noted in the current
editorial.
It is clear to me, as well as to others I have spoken with, that
President Bush's specific mentioning of people with disabilities has
already had a significant impact on children and adults with
disabilités and their families. That is why we have written this
editorial and why we would be pleased to have an official response.
As soon as we receive our first copies of the March issue, I will
send you some copies for your review. Thank you.
Sincerely yours,
Stanley D. Klan
Stanley D. Klein, Ph.D., Editor
sdk/s; enc
OK/Y
Maxwell J. Schleifer, Ph. D.
Stanley D. Klein, Ph.D.
Exceptional Parent
1170 Commonwealth Avenue, Third Floor
Boston, Massachusetts 02134
Dear Mr. Schleifer and Mr. Klein:
I am writing to thank you for your editorial addressed to me in the
March 1989 issue of Exceptional Parent and for your thoughtful
letter. I am pleased to learn that my public concern for the
problems of children and adults with disabilities has already made
an impact on them and on their families. I will certainly continue
to speak out on these issues in the future.
Having listened to many people with disabilities over the past
several years, I share their desire to do more to bring them into
regular school, work, and community activities-- particularly the
most severely disabled. It is to everyone's advantage that these
young people move into the economic mainstream and prove to the
next generation what their currently employed counterparts have
already proven: that disabilities can often become incentives to
greater efficiency and more notable achievement.
I also want to see more programs and policies that give all people
with disabilities access to every activity in our society--to the
mainstream educational system, to public accomodations, to public
transportation. As you and your readers know, much has already
been done in these areas, but much work yet remains.
Since these are matters on which there is considerable bipartisan
agreement, I look forward to cooperating with Congress in exploring
ways in which the Federal government can help to initiate further
progress. I am hopeful that we will all be working together to
achieve the common goals we clearly share.
Thank you again for your editorial and for your letter.
See P. 12
I BOTH Letters
OR ONLY ONE?
1 BUURB?
MEMORANDUM
OF CALL
Previous editions usable
TO:
M.K.
YOU WERE CALLED BY-
YOU WERE VISITED BY--
OF (Organization)
Rogu Education Murphy
PLEASE PHONE
FTS
AUTOVON
732-4574
WILL CALL AGAIN
IS WAITING TO SEE YOU
MARCH 14, 1989
RETURNED YOUR CALL
WISHES AN APPOINTMENT
MESSAGE
- an Assistant sec. Will
TO:
DAVE DEMAREST
call later to help
FROM:
MARLIN FITZWATER
1265
Patty Smith 732-1439
FOR ACTION.
RECEIVED BY
DATE
TIME
63-110 NSN 7540-00-634-4018 STANDARD FORM 63 (Rev. 8-81)
Prescribed by GSA
*U.S.GPO:1987-0-196-343/79063
FPMR (41 CFR) 101-11.6
Patty Smith
office of Spec Ed & Rehab Serv.
330 C St SW
Room 3006
FAX. 732-1252
EXCEPTIONAL
PARENT
Parenting your child
with a disability
From the Desk of
Stanley D. Klein, Ph.D.
Editor
Dear Me Flywider
Here is the magazine
with our letter to the
President on page 9.
We look forward to receiving
b response
Chank you
See p.9
Stan Men
1170 Commonwealth Avenue, Boston, MA 02134 (617) 730-5800
THE WHITE HOUSE
WASHINGTON
Sarah Niemczycki
617-730-5800
Exceptional Parent nag.
deadline
end of Dris
week - Absolute
latest: Next week (end of)
office of Special Edue
EXCEPTIONAL
PARENT®
Stanley D. Klein, Ph.D.
Editor
February 28, 1989
Parenting your child
Mr. M. Fitzwater
with a disability
Office of the Press Secretary
1170 Commonwealth Avenue
The White House
Boston, Massachusetts 02134
1600 Pennsylvania Avenue
(617) 730-5800
Washington, D.C. 20500
Dear Mr. Fitzwater:
I have enclosed a copy of the editorial, "Dear Mr. President,"
which will appear in our March issue (scheduled to appear in a few
days), because we would be honored to receive a response from the
President in time for our April issue. We will even settle for our
May issue since we are well aware that your office is a busy one.
EXCEPTONAL PARENT is a consumer education magazine for
parents of children with disabilities. We distribute 45,000 copies of
each issue throughout the USA. Based on survey data, we estimate
that 230,000 people read each issue of our magazine. I have taken
the liberty of enclosing recent copies and some other materials about
the magazine for your review--including the October issue in which
we published the candidates' statements noted in the current
editorial.
It is clear to me, as well as to others I have spoken with, that
President Bush's specific mentioning of people with disabilities has
already had a significant impact on children and adults with
disabilites and their families. That is why we have written this
editorial and why we would be pleased to have an official response.
As soon as we receive our first copies of the March issue, I will
send you some copies for your review. Thank you.
Sincerely yours,
Stanley D Klan
Stanley D. Klein, Ph.D., Editor
sdk/s; enc
EDITORIAL
Dear Mr. President,
During your campaign, you demonstrated a keen
function more independently through the provision of
awareness of the issues confronting children and adults
assistance, technology, devices, and services.
with disabilities and their families.
Federal legislation (P.L. 99-506), passed in 1986,
In your statement as a candidate published in
ensures technological access for all persons with
October's EXCEPTIONAL PARENT you wrote that
disabilities to computers and other electronic office
"without aggressive public and private support, people
equipment in places of Federal employment. This
with disabilities will not be able to achieve their highest
program can serve as a model for employers in the
priority, namely the independence necessary to achieve
private sector.
control over their own lives and integration into the
Two important pieces of legislation that need to be
mainstream of American life."
acted upon by the Congress already have considerable
You also noted that "we must include people with
bipartisan support. The "Medicaid Community Quality
disabilities and their parents in the process (of providing
Services Act" proposes the use of Medicaid to fund
meaningful access to all aspects of society) to ensure that
community and family support services as an alternative
their real needs are addressed." Further, you pledged to
to the institutionalization of children and adults with
"expand the number of persons with disabilities and
disabilities. This bill also supports job training, respite
parents of persons with disabilities to key positions in
care and other programs that help citizens with
my administration."
developmental disabilities to live in their own
You made it clear that these are not radical goals.
communities. The "Americans with Disabilities Act"
In the campaign you directly addressed the concerns of
was introduced in Congress in 1988 with the intent of
people with disabilities in your acceptance speech at the
prohibiting all discrimination on the basis of disabilities.
Republican National Convention and during the second
Federal laws already enacted and those proposed
Presidential debate. You demonstrated that you are
cannot succeed without strong leadership by the
willing to remind all of our citizens that meeting the
Executive branch of government. You know that each
needs of everyone with disabilities is an important part
law requires adequate funding and consistent Federal
of our national agenda. After the election, you
monitoring so that the expanding opportunities can be
continued to demonstrate your personal interest and
available to citizens with disabilities of all ages wherever
concern when you spoke at Gallaudet College using a
they and their families reside. Your administrative
sign language interpreter and when you appointed a
appointees to the critical Federal offices that develop
committee to assure access to the Inaugural events for all
and support the various Federal programs and services
Americans.
need your consistent support and leadership so they can
Now, as President, you can provide dynamic
carry out your policy commitments to people with
leadership needed to move our country towards the
disabilities and their families.
goals you support.
We look forward to your Administration taking the
Since 1975, the Federal government has played a
initiative to see to it that the American values of
significant role in dramatically improving the lives of
individual freedom of choice and involvement in the
children and adults with disabilities and their families.
social, political and economic mainstream are applied to
The Education of All Handicapped Children Act (P.L. 94-
programs for individuals with disabilities. We believe
142) has revolutionized the opportunities for youngsters
that the gains our society has already made provide you
to grow to become self-sufficient adults. Today, after
and your Administration with the unique opportunity to
more than a decade of implementation of that law, child-
complete this long overdue task.
ren and young adults with disabilities are involved at all
We are prepared to work with you towards these
levels of the educational systems. The benefits of educa-
goals by continuing to inform our readers of the activi-
tional programs for children with disabilities and their
ties of the relevant Federal government agencies and
families are now being extended to the preschool years.
programs and by encouraging our readers participation
At the other end of the educational spectrum,
in the democratic process. We wish you well.
Federal leadership has also encouraged the growth of
programs that help youngsters make the transition from
school to the adult world of work.
Manual I Schleiter
Last year, important new legislation - the
Technology Related Assistance for Individuals with
Disabilities Law of 1988 (P.L. 100-1407) was passed
Stanley D.Kein
and will be implemented in the current year. This law
can enable individuals of all ages with disabilities to
Founders and Editors of EXCEPTIONAL PARENT
EXCEPTIONAL PARENT
MARCH 1989
9
PRESIDENTI CANDIDATES OUT
T
he vast majority of the 36 million Americans with
We must remember that we are addressing a large and
disabilities believe that their lives have improved in the
significant percentage of Americans. The Harris survey
past decade. Attitudes toward people with disabilities
established that over 36 million Americans have disabilities;
are changing in a positive direction and more people with
nine million of these Americans are under the age of 16. Forty
disabilities than ever before are being educated. These are
percent of all adults with disabilities did not finish high school
some of the findings of the first comprehensive survey of
-- three times more than non-disabled individuals. In 1984, 50
people with disabilities, conducted by Lou
percent of all adults with disabilities had
Harris and Associates and released in
household incomes of $15,000 or less.
1986. But I firmly believe, and the survey
Among non-disabled persons, only 25
also indicated, that without aggressive
percent had household incomes in this wage
public and private support, people with
bracket. With respect to employment, only
disabilities will not be able to achieve their
one in four persons with disabilities works
highest priority, namely, the indepen-
full time, another 10 percent work part time.
dence necessary to achieve control over
There are at least eight million unemployed
their own lives and integration into the
individuals with disabilities who want to
mainstream of American life.
work but need help finding employment.
By speaking with experts, with
The statistics consistently demonstrate that
people with disabilities, and with parents
people with disabilities are the poorest, least
of children with disabilities from around
educated and the largest minority in
the country, I have learned much more
America.
about the needs of disabled individuals. I
We must develop programs and policies
understand what people with disabilities
that promote independence, freedom of
strive for -- independence, control of their
choice and productive involvement in the
own lives, and integration into society.
social and economic mainstream. This does
Many of the disabled I have met with
not merely mean employment. It also means
have major responsibilities in local and
access to the mainstream educational system,
national organizations such as The
to public accommodations, to public
National Council on Independent Living,
transportation - in other words, meaningful
National Parent CHAIN,
access to all aspects of society.
Capitol People First of
Further, we must include
Sacramento and the Assoc.
"We must develop programs and
people with disabilities and
on Handicapped Student
Service Programs in Post-
policies that promote independence
their parents in the process to
ensure that their real needs
secondary Education,
freedom of choice and productive
are addressed.
which are all run by and
involvement in the social and economic
The stakes are enormous.
for people with disabilities.
mainstream."
On the cost side, the National
I am proud that from the
Council on the Handicapped
start I have been able to
states that current spending
speak directly with people
George H. Bush
on disability benefits and
with disabilities and the
programs exceeds $60 billion
parents of children with
annually. Excluding the
disabilities, bypassing the intermediaries.
millions of disabled who want to work from the employment
These individuals made it very clear that those in the
ranks costs society literally billions of dollars annually in
disability rights movement have two critical goals: the right of
support payments and lost income tax revenues. On the
people with disabilities to control their own lives and make
benefit side, the United States is now beginning to face labor
meaningful choices; and, the right to be integrated into all
shortages as the baby boomers move through the work force.
aspects of society. As far as education, the Republican
People with disabilities offer a pool of talented workers whom
Platform includes a commitment to protect the rights
we simply cannot afford to ignore, especially in connection
established under the Education for All Handicapped Children
with the high tech growth industries of the future.
Act, which mandates a free, appropriate public education for
During the past six years, I have advocated the
all children with disabilities.
appointment of persons with disabilities and parents of
These goals may sound revolutionary in regard to the
persons with disabilities to major posts in the federal
treatment of people with disabilities; but they are not radical in
government. As president, I will expand the number of
relation to the American values of individual freedom of
persons with disabilities and parents of persons with
choice and involvement in the social, political and economic
disabilities appointed to key positions in my administration.
mainstream. Although children and adults with disabilities
Moreover, I pledge that my administration will do away
have made many gains in the last decade, the stark fact
with "Hire the Handicapped Week" and replace it with federal
remains that unnecessary segregation and exclusion of people
legislation that gives people with disabilities the same
with disabilities continues. As a result, disabled adults and
protection in private employment that is now enjoyed by
families with disabled children suffer from stress, dependency
women and minorities.
and isolation.
Bush continued p. 14
EXCEPTIONAL PARENT / OCTOBER 1988
13
PRESIDENTIAL CANDIDATES SPEAK OUT
MICHAEL S. DUKAKIS
GEORGE H. BUSH
personal assistance services to support personal independence,
In order to assume that every American who wants a
sustain the integrity of families and open avenues of employ-
productive job in the private sector has a job, I will continue to
ment. We can identify new and effective ways to reach out to
support initiatives to:
persons with the most severe disabilities so that they too can
Ask the private sector to work more aggressively in
enjoy the participation.
hiring people with disabilities, using my office
I have further supported the principle of self-determi-
to educate employers about the statistics showing
nation of people with disabilities to leadership positions in key
clearly that, other things being equal, disabled
state agencies. I will continue to support the development of a
employees perform above average.
strong national network of independent living centers. I will
Train people with disabilities for jobs that really exist
actively recruit people who have disabilities into all levels of
where they live.
government and public policy making.
Work with Congress to eliminate disincentives that
For children with disabilities, their families are the major
discourage disabled persons who wish to work from
source of financial and emotional support. Families need and
working.
deserve far more assistance - respite care, parent training and
Improve transportation and work place accessibility
help in accessing and coordinating services.
for existing facilities and insist on accessibility for all
People in need should be able to count on the federal aid
new construction.
to which they are entitled. The current administration tried to
Support independent-living centers to help disabled
throw hundreds of thousands of people with disabilities off the
persons with the transition to independence.
Social Security rolls without due process. In Massachusetts, I
Urge private insurers to find ways to include, not
ordered a moratorium on these cuts and created a process that
exclude workers with disabilities in their programs.
became the model for national legislation to prevent recurrence
Individuals with disabilities are not a small, uniform
of this grave injustice.
minority with narrow interests. The disabled community
Together, we can build a new future for American citizens
includes every race, culture, age, sex and economic class.
with disabilities: a future of dignity, security and equal
Membership is open to all and most of us who live our full life
opportunity -- a future that will demonstrate that citizens
span will join this community sooner or later.
with disabilities are full partners in society and equal partners
in building a foundation of equality for all.
" so we talked about how her
daughter could live in the dorm and
still use her TDD. I said AT&T made
a portable one she could take with her.
she thought it was a great solution!"
Listen
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AT&T SPECIAL NEEDS CENTER
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The right choice.
14
EXCEPTIONAL PARENT / OCTOBER 1988
Maxwell J. Schleifer, Ph. D.
Stanley D. Klein, Ph.D.
Exceptional Parent
1170 Commonwealth Avenue, Third Floor
Boston, Massachusetts 02134
Dear Mr. Schleifer and Mr. Klein:
I am writing to thank you for your editorial addressed to me in the
March 1989 issue of Exceptional Parent and for your thoughtful
letter. I am pleased to learn that my public concern for the
problems of children and adults with disabilities has already made
an impact on them and on their families. I will certainly continue
to speak out on these issues in the future.
Having listened to many people with disabilities over the past
several years, I share their desire that we do more to bring them
into regular school, work, and community activities-- particularly
the most severely disabled. It is to everyone's advantage that
these young people move into the economic mainstream and prove to
the next generation what their currently employed counterparts have
already proven: that disabilities can often become incentives to
greater efficiency and more notable achievement.
I also want to see more programs and policies that give all people
with disabilities access to every activity in our society--to the
mainstream educational system, to public accommodations, to public
transportation. As you and your readers know, much has already
been done in these areas, but much work yet remains.
Since these are matters on which there is considerable bipartisan
agreement, I look forward to cooperating with Congress in exploring
ways in which the Federal government can help to initiate further
progress. I am hopeful that we will all be working together to
achieve the common goals we clearly share.
Thank you again for your editorial and for your letter.
EXCEPTIONAL
PARENT®
®
Parenting your child
with a disability
Volume 18, Number 7
October 1988
$3.50
Bush &
Dukakis
SPEAK OUT
SIXTH
ANNUAL
TECHNOLOGY
ISSUE
10
0
7447074152
7
Introducing
The Chrysler Motors
Physically-Challenged
Assistance Program
(P-CAP)
Customer Benefits:
Cash allowance in addition to existing
corporate incentive programs.
Up to a maximum of $50000 on adaptive
driving aids installed in 1987 or 1988 cars
and trucks.*
Physically-Challenged Resource Center
information network.
*
Fleet rebates are not eligible to participate.
For more information, consult your dealer
representative or contact the Chrysler Motors
Physically-Challenged Resource Center at
1-800-255-9877.
VPSI, INC.
SUBSIDIARY OF
CHRYSLER
MOTORS
THE
LITTLE CHAIR
THAT DOES
Safety
A LOT.
Safet
Pluz
Today the right choice in strollers is the
Safety Plus 501. Meeting the positioning and
transportation needs of the one-to-five year
old child, the Safety Plus Model 501 is small
in size but big on features. More than a
stroller, this multi-purpose unit not only
positions properly, but also functions as a
removable positioning unit and a high chair.
Easy as 1-2-3, the adjustments make the
Safety Plus Model 501 easy to convert for
each purpose.
The seat and back cushions provide comfort
while the non-absorbent vinyl upholstery
resists stains and is simple to keep clean.
A turn of a knob and the seat-to-back angle
is changed from 90° to a maximum of 125°.
The angle in space crank tilts the seating unit
from 90° to a maximum angle of 120°.
This angle can be maintained in the stroller
and high chair position.
Adjustable height arms and individual
footplates allow the best positioning possible.
The sunscreen mesh canopy keeps the strong
rays of the sun from reaching the child,
while permitting air to flow through.
For more information call:
(800) 421-3349 Outside Ohio
The durable birchwood tray aids in positioning as well as
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feeding, communication and play time.
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The benefits of 16 standard features makes this chair the right
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SAFETY REHAB
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When calling, ask for "The Chair with the Safety Bear."
EDITORS' DESK
EXCEPTIONAL
PARENT
H
ere is our Sixth Annual Technology issue complete with
Editor in Chief: Maxwell J. Schleifer, Ph.D.,
an up-to-date resource directory. The contributions of
Professor of Psychology, University of Mass.
technology no longer seem as unbelievable as they did
Editor: Stanley D. Klein, Ph.D., Professor of Psychology,
six years ago. Technology is changing the present and the
New England College of Optometry
Book Editor: Cory Moore
future as well as our viewpoints from the past about active
Managing Editor: Melissa Urann
community participation by children and adults with dis-
Editorial Assistants: Sarah J. Niemczycki, Bob Hermansen
Design Consultant: Andrea Golden
abilities and their families. We congratulate Apple Computer,
Mechanical Artist: Al Bertelsen
Inc. and IBM as well as the other high-tech companies who
Circulation: Ann E. Foote, Dir., Nancy Bliss
Business: Ann E. Foote, Mgr.
have committed resources to the needs of people.
Special Projects: David Jones, Dir.
Advertising Assistant: Corinne F. Levin
Advertising Department:
PRESIDENTIAL CANDIDATES
NATIONAL SALES OFFICES: Edie Shack, Dir.
P.O. Box 657, Kenmore Station,
Boston, Mass. 02215, (617) 536-8961
This is the fifth time that we are publishing statements of
WEST COAST SALES OFFICES: Aniko Ann Klein, Mgr.
584 N. Beachwood Drive
the Presidential candidates. In 1972, when we first published
Los Angeles, Calif. 90004 (213) 469-6497
statements by the major candidates for President, most
candidates for public office were unprepared to address
issues of concern to parents, professionals and people with
disabilities. And only a few courageous parents,
Senator Gerard
professionals and people with disabilities believed that they
D'Amico Award
1986
For an outstanding contribution
had a right to approach candidates. While this has changed,
to Early Childhood Intervention
MEDIA AWARD
by The Mass
THE PRESIDENT'S COMMITTEE ON
there is still much to be done.
Early Intervention Consortium
EMPLOYMENT OF THE HANDICAPPED
1984
The excitement and fireworks of Presidential politics
often overshadows the local political campaigns of candidates
who can play critical roles in the day-to-day lives of children
and families. However, it is these local candidates who, when
elected, actually make the day-to-day decisions about the
Editorial Advisory Board
allocation of local educational, recreational and other
HAROLD S. BARBOUR, ED.D., President Emeritus, The
Woods Schools, Langhorne, Pa.
T.
BERRY BRAZELTON,
resources. Each election year, we have an opportunity to
M.D., Clincal Professor of Pediatrics, Harvard Medical
educate and reeducate our friends and neighbors who are
School
FRANCES P. CONNER, ED.D., Professor Emeritus,
Special Education, Columbia University
ALLEN C.
candidates. We also have the opportunity to help those
CROCKER, M.D., Director, Developmental Evaluation Clinic,
candidates who support the specific needs of our children. In
Children's Hospital, Boston
ELI FACTOR, D.M.D.,
President, Wheelchair Motorcycle Association, Brockton,
that way, each of us can really make a difference in the lives
Mass.
MURRAY FEINGOLD, M.D., Physician-in-Chief,
of children and families -- including our own.
National Birth Defects Center, Kennedy Memorial Hospital,
Brighton, Mass.
SANDRA B. FLEISHMAN, Parent,
Administrative Assistant, Pelham Public Schools, Pelham,
RESPITE CARE SURVEY
N.Y.
BRUCE M. GANS, M.D., Associate Professor of
Rehabilitation Medicine, Tufts University School of
Medicine, Boston
SOL GORDON, Ph.D., Professor
Every regular subscriber has received a respite care
Emeritus, Child and Family Studies, Syracuse University
HERBERT J. GROSSMAN, M.D., Professor, Pediatrics,
survey questionnaire with this issue. We are pleased to be
Neurology, and Psychiatry, University of Michigan Medical
collaborating with the Human Services Group (Cambridge,
School, Ann Arbor, Mich.
GOODWIN D. KATZEN,
Executive Director, Rockland County Center for the
Mass.) to identify respite care needs of families and then
Physically Handicapped, New City, N.Y.
EDWIN W.
propose strategies to meet them at the local level. We need
MARTIN, Ph. D., President, Human Resources Center,
Albertson, N.Y.
JEAN D. McGREW, Ph.D., Superintendent,
your participation. By completing and returning the
Glenbrook School District #225, Glenview, III.
EDWARD
questionnaire in the postage paid reply envelope, each reader
NEWMAN, Ph.D., Director, Temple University
Developmental Disabilities Center, Philadelphia
BETTY
can have personal input in this important project. We look
PENDLER, M.S., Member, New York State Developmental
forward to reporting the findings of the survey in the spring.
Disabilities Planning Council
HARVEY PRESSMAN,
President, Corporation for Opportunity Expansion, Newton,
Please return the survey as soon as possible. Thank you.
Ma.
JEROME ROSNER, O.D., Professor of Pediatric
Optometry, University of Houston
HARILYN ROUSSO,
A.C.S.W., Director, Disabilities Unlimited, New York, N.Y.
NEW BOOK
BARBARA J. SEABURY, M.A., Director, Activities Services,
Rhode Island Hospital, Providence
HOWARD SHANE,
Ph.D., Director, Communications Enhancement Clinic,
After school programs for children can provide respite
Children's Hospital, Boston
SUSAN K. SHUSTER, Ph.D.,
for parents. We are pleased that Exceptional Parent Press'
Professor of Special Education, Indiana University at
Bloomington
CAROL TINGEY, Ph.D., Parent, Associate
new book, School-Age Children with Special Needs: What do
Professor, Developmental Center for Handicapped Persons,
they do when they're not in school? by Dale Fink, is now
Utah State University, Logan, Utah
HAROLD TURNER,
D.D.S., Associate Professor, Retired, School of Graduate
available.
Dentistry, Boston University
IRVING KENNETH ZOLA,
Ph.D., Professor and Chairman, Department of Sociology,
Brandeis University, Waltham, Mass.
2 EXCEPTIONAL PARENT / OCTOBER 1988
EXCEPTIONAL
PARENT®
Parenting your child
with a disability
Volume 18, Number 7
October 1988
6TH ANNUAL TECHNOLOGY ISSUE
FEATURE ARTICLES
12 Presidential
16 A Song for David
22 Electronic
28
Establishing an
Candidates Speak Out
By Charlotte Forbes
Communication Aids:
Assistive Device
Michael S. Dukakis and
Creating ways to
Questions & Answers
George H. Bush address
communicate with a child
Lending Library
issues of concern to parents.
who is nonverbal.
by Iris Fishman
by Douglas Haynes
Understanding electronic
How to improve services in
communication aids will
your local library.
48
52
help you make the right
The National
No Longer "Just a
choice.
56 Online Help
Special Education
Parent"
from IBM
Alliance
by Lisa Cohn and
by Jack Moore
by Peter Green
Peter Green
Access special needs services
An update on the NSEA.
The role of parents in the
through your home
NSEA.
computer.
DEPARTMENTS
4
Family Forum
34
Resource Section
62 Family Album
63 Fun Stuff
Letters to the Editors
Become an Informed
by Robert Rutland-Brown
by D.J. Orr
Parents Search
Consumer.
Randy and Robert
Family Learning
Parents Respond
Annual Technology
Opportunities: In your
Resource Directory.
child's room.
64 From the
67
What's
70
Family Life
Bookshelf:
Happening
"Jim and I have different
Journey Through Grief
ways of handling money."
Cover Photo: "A Song for David" is the story of David Forbes and his family's efforts to help him communicate. Page 16.
Photo by Cheryl Cullen
EXCEPTIONAL PARENT / OCTOBER 1988
3
FAMILY FORUM
LETTERS TO THE EDITORS
independently, tells everyone how
terrific she is doing her own thing.
At the same time, Paul, now a
We welcome all contributions to
agreed, whereupon he inveigled her
doctoral student in psychology,
Letters to the Editors. Please send
to give him her share of the baseball
delights in educating his friends
your questions, ideas and responses to:
cards. I would wryly say to him,
with Lisa's many accomplishments.
EXCEPTIONAL PARENT,
"See, sometimes it is OK to have a
And I enjoy the special values that
P.O. Box 657, Kenmore Station,
sister you can manipulate."
each of them give to me.
Boston, Mass. 02215.
However, I did succeed in
showing Paul that Lisa indeed had
Betty Pendler
ZEPPY, DARWIN AND CALEB
her own special values. I owe this
New York, New York
to the television show Lassie with
When I finished reading
that wonderful dog. One night
AUNT DOROTHY AND
"Darwin and Caleb" as well as
Paul, Lisa and I were watching
MEREDITH
"Insights from Zeppy, a Father's
when the little boy asked his
Essay" in the July/August issue I
mother, "Can Lassie catch beavers?"
What a lift I got from reading
was struck by the common theme
His mother responded "no," and the
the article "Aunt Dorothy and
that people with special needs have
little boy looked crestfallen. But
Meredith" in your July/August
in their own way "special qualities."
then the mother quickly responded,
issue. While my son doesn't have
It is indeed a question of setting
"But Lassie can do many other
an apparent genetic basis to his
our values straight as Sal Biondello
things -- she has her own special
mental retardation, and we will
points out in "Insights from Zeppy."
values." I quickly picked up on that
probably never know the cause, I
And I was touched by Susanne
and said to Paul, "You see, you have
have often wished I could somehow
Carter's presentation of her two
asked me several times why Lisa
find out more about our family
children and her sense of
talks funny, but Lisa, like Lassie, has
background to see whether anyone
appreciation of the level of
her own special values."
back in our family ever had
development for each of them.
I wasn't sure Paul fully
something similar. But with hardly
These two articles reminded me
understood this. He was only five
any family around, this isn't
of a favorite story I often repeat
years old at that time. But that
possible for us.
when I address parents of children
summer when we went away to a
How wonderful, then, for the
with special needs that I call "Lassie
family camp in the country, I
Shears to have had the opportunity
and her own special values."
overheard a little boy say to Paul
to meet Aunt Dorothy and listen to
Like Susanne Carter, my first
"your sister talks funny." Then he
her story of her little brother, to feel
child, Lisa, was born with Down
stamped his little foot and
that extra link to the past and yet
syndrome. Two years later along
responded proudly, "So what, she is
derive some comfort in hearing
came Paul; I too had to work on the
like Lassie; she has her own special
first-hand just how times have
communication gap and create
values."
changed for the better for children
positive thinking about having a
This phrase has helped all of us
with disabilities.
person who is mentally retarded in
along the road. When Lisa used to
And, as I looked at the family
the family.
come home from school and sadly
picture, it appeared to me that the
I knew that it was important to
tell me that someone on the street
delightful little girl on whom the
show to Paul what Susanne Carter
made fun of her, I would retort
article was based just might be the
stated so well: "not all normal
promptly, "Don't feel badly he
same Meredith who was on my
patterns of behavior are necessarily
doesn't know that you have your
son's special tee-ball league team
positive and not all abnormal
own special values."
two years ago!
behavior are necessarily negative."
Indeed, I found this philosophy
So at every occasion I tried to pick
helped me tremendously in dealing
Geralyn Jacobs
out the positive qualities for Paul to
with the sibling situation, in dealing
Commack, New York
see in Lisa. When Paul was at the
with giving Lisa a good image of
age where he was collecting
herself, and in dealing with
CLOTHING ALTERATIONS
baseball cards that he got when
redefining my own values just as Sal
purchasing bubble gum, he would
Biondello points out.
I am writing to share a clothing
often say to Lisa, with an endearing
I am pleased to report that this
alteration idea with fellow readers.
smile on his face, "Lisa, you want
attitude has had a positive result
As a parent of a child who is
bubble gum, don't you?" In her
because Lisa, now age 33 and living
profoundly mentally retarded and
eagerness to please she always
in a group home, quite
severely physically disabled, I have
4 EXCEPTIONAL PARENT / OCTOBER 1988
Introducing the
revolutionary new Dynamic Posture Chair
from Ortho-Kinetics.
While better postural alignment and control in
The economically-priced Dynamic Posture Chair
involved children is often achieved in therapy, it
is designed for children with varying degrees and
has always been difficult to carry this control over
types of involvement, and it's easily adjustable
into everyday activities.
from child to child. Which makes it ideal for home
Until now. Now therapists have a valuable
or school applications.
new ally to enhance the carryover of physical,
The Dynamic Posture Chair. It's making health
occupational and speech therapy goals into func-
care professionals everywhere sit up and take notice.
tional activity. The Dynamic Posture Chair
For more information, call 1-800-558-7786.
from Ortho-Kinetics.
In Wisconsin, 1-800-522-0992.
This unique new adaptive chair employs the same
concepts therapists use in treatment to obtain active
trunk and lower body control. By elevating the
pelvis higher than the knees in sitting, and tilting
it forward 5 to 10 degrees, the trunk is required to
Ortho-Kinetics, Inc.
maintain a more upright posture. And weight bear-
P.O. Box 1647, Waukesha, WI 53187
ing is improved by bringing the center of gravity
Phone: 1-800-558-7786
forward and elevating the hips.
(In Wisconsin, 1-800-522-0992)
© 1988, Ortho-Kinetics, Inc.
FAMILY FORUM
found selecting appropriate clothing
move. It can be tucked in along the
information with other parents.
to sometimes be a challenge. Winter
sides and around her legs, while her
Since I have enjoyed being a
coats were a particular problem.
back is kept warm against the vinyl
subscriber for nearly all of my
My daughter is confined to a wheel-
of the wheelchair. And it looks like
daughter's 15 years, I felt your
chair and needs several support
a perfectly normal coat.
magazine may be an avenue to
systems (lateral supports, seat belt,
As for the actual mechanics of
accomplish this.
front yoke harness, knee abductor,
this, it is very simple. Depending
and foot rest straps) to maintain
on the type of support system, you
Ruth A. Settle
positioning.
probably need a coat somewhat
Library, Pa.
Removing these, standing her
larger than the child's normal size. I
to put on a coat, repositioning her in
have found a coat with raglan
the wheelchair and readjusting all
sleeves works best.
the straps and supports every time
Somewhere near the side seam
we went "out" was very time
-- depending on how much fabric
consuming and tiring for both of us.
you want to wrap around the body
And of course, this process had to
-- I cut up the length of the coat on
be done in reverse every time we
both sides continuing up the sleeve
went "in" so she did not become
seam to about two inches from the
overheated. You can imagine what
neckline. I then leave a triangular-
a day with several appointments
shaped piece along the neckline that
was like -- an all around nuisance.
is used to tuck behind her back.
cut line
So I came up with an idea for
I have expanded this idea to all
an alteration that has worked
her coats and jackets, including a
wonderfully. I removed the back of
rain slicker.
her coat. This allows for the coat to
I am writing this letter because
be slipped on from the front over all
so many people have encouraged
coat back
her supports without her having to
me to find some way to share this
THE EXCEPTIONAL PARENT (ISSN 0046-9157) is
published 8 times a year (Jan, Mar, Apr, May, July, Sept, Oct,
Nov) for $16 per year to individuals; $24 per year to
organizations, libraries, schools and agencies by the Psy-Ed
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Including the Erhardt Developmental
Arbor, Mich. 48106.
Vision Assessment (EDVA) ©
Annotated and Indexed by the ERIC Clearinghouse on
by Rhoda P. Erhardt, MS, OTR, FAOTA
Handicapped and Gifted Children for publication in the
monthly print index Current Index to Journals in Education
occupational therapists
infant stimulation specialists
(CIJE) and the quarterly index, Exceptional Child Education
Resources (ECER).
For:
physical therapists
teachers of visually impaired children
Libraries: No claims accepted prior to 45 days after issue
speech pathologists
psychologists
mailing date (first day of cover month). No claims honored
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Case studies of three children with cerebral palsy (mild, moderate, and severe) are
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© 1988 by Psy-Ed Corporation. All Rights reserved.
Nothing may be reprinted in whole or in part without
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ment and management of developmental visual dysfunction.
photocopy items for internal or personal use, or the internal
or personal use of specific clients, is granted by Psy-Ed
Simplified instructions, more than 300 illustrations, and three completed
Corporation for users registered with the Copyright
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provided that the base fee of $1 per copy, plus $.50 per page
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is paid directly to CCC, 27 Congress St., Salem, Mass. 01970.
For the organizations that have been granted a photocopy
bility with re-evaluation. Treatment programs and models for integrating visual
license by CCC, a separate system of payment has been
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arranged. The fee code for users of the Transactional
Reporting Services is: 046 9157/87/$1.00+.50.
sample assessments.
Editorial Information: Contact Sarah Niemczycki,
Available Winter 1988
For more information, write to:
EXCEPTIONAL PARENT, P.O. Box 657, Kenmore Station,
Boston, Mass. 02215. Return postage must accompany all
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are to be returned. Publisher assumes no responsibility for
unsolicited material. Sample copies are $5.00 each prepaid.
6 EXCEPTIONAL PARENT /OCTOBER 1988
FAMILY FORUM
This was the most difficult, painful
PARENTS SEARCH
and heartbreaking decision we have
had to make, and we desperately
EXCEPTIONAL PARENT will
problem. He is still on oxygen all
need to hear from other parents
publish letters from readers searching
the time and has become very
who have had to make this decision.
for parents with similar experiences,
mobile in the last year. We would
We love Jimmy so very much,
information about specific problems,
love to "network" with other
but things were becoming so tense
and other resource information.
families who have older children
in our home that it was no longer in
Subscribers may publish one letter a
with similar problems and are on
Jimmy's best interest to keep him
year in Parents Search without cost.
oxygen.
there. Jimmy is eight years old and
Anyone who wishes to reply to a letter
The portable oxygen systems
is one of those children with
in Parents Search should write to:
that we have found available are not
varying "labels."
EXCEPTIONAL PARENT, P.O. Box
the best we feel should be available.
We have been told by the
657, Kenmore Station, Boston, Mass.
We would like to find a small,
professionals that he is develop-
02215. Please indicate in which issue
lightweight, well-functioning
mentally delayed, educably men-
the letter was printed when addressing
portable unit for our son. Please
tally retarded and autistic-like. We
your reply. All replies will be
write if you have any suggestions.
have been told that he has a neuro-
forwarded and may be published in our
He is presently on a 50-foot tubing,
developmental disorder, a pervasive
Parents Respond column.
which can be rather cumbersome.
developmental disorder and an at-
tention deficit disorder. No matter
S. D. & L..D.
what label, Jimmy just became a
PORTABLE OXYGEN SYSTEMS
Holden, Mass.
tyrant in our home (that was partly
our fault). He needed a break from
We have a five-year-old son
GROUP HOME PLACEMENT
us, and we from him. So the choice
who was a 25-week preemie and
was made to place him in what we
has bronchopulmonary dysplasia
My husband and I just placed
hope and pray will be the loving
(BPD) as his major
our son Jimmy in a group home.
group home it appears to be.
Tadd and his friend Seth enjoy spending time
together in the school library.
Tadd operates the film strip
machine with help from the
ABLENET
CONTROL SYSTEM.
Sharing activities with friends is one of the
many ways Tadd uses his ABLENET Control
Unit and Switch 100 to actively participate
in the events of daily living.
ABLENET offers products and services for
persons with severe disabilities. Our focus
is on simple technology and on services
which promote its effective use.
With the help of parents, teachers,
caregivers, and therapists, we are working
together to help others achieve.
Call us today at (612) 331-5958 or write
to ABLENET, 360 Hoover Street N.E.,
Minneapolis, MN 55413 for our new
1988-89 catalog.
EXCEPTIONAL PARENT / OCTOBER 1988 7
FAMILY FORUM
We were also forced to make
virtually unknown genetic disorder
motor skills developed quickly, as
this decision because of the lack of
named Partial Trisomy 10. From
did her general interest in her
support from family, friends,
what we understand from our
surroundings. Since the age of 20
neighbors and professionals. Not
doctor, she has an extra "piece"
months we have been trying to
one child in our neighborhood has
stuck onto chromosome number
eliminate the feeding tube, but it is
ever made an attempt to befriend
ten. The various researchers have
still necessary to give her one meal
Jimmy. His Saturday special
not been able to discover what the
with it (in the evening) in order to
recreation program was discon-
"piece" is. No one can tell us what
supplement her intake.
tinued by the county. We are living
to expect in the future.
Today, at the age of two years,
in a school district that thinks
While still in the hospital,
her verbal skills are non-existent,
nothing of moving disabled children
feeding problems arose. She was
but she does understand simple
from school to school each year,
tube fed for two weeks until we
sentences having to do with
thereby preventing them from
managed to feed her orally. Until
everyday life. She will be receiving
making long-standing friendships.
the age of 14 months she was under-
speech therapy soon.
So much has been left unsaid in
eating and underweight. Along
We would be very interested in
this letter. We feel defeated. We
with the feeding problems, Rivka
hearing if anyone who has any
feel helpless. We feel angry. We
was very hypotonic (she still is, but
information about this disorder, or
feel bitter. We feel guilty. We feel
less so). She started physical
any disorder with similar sounding
alone, so very alone. Are we?
therapy at the age of five months.
symptoms, and what kind of treat-
After long debates, we agreed
ment or programs are being used.
C.C.&S.C.
with the doctors that a feeding tube
We would also be interested in
Concord, Calif.
was the only solution. My husband
hearing from anyone who has
and I learned how to insert the tube
experience in eliminating a feeding
PARTIAL TRISOMY 10
through her nose. From 14 to 20
tube that was in use for a long time.
months, she ate almost solely from a
Thank you for your help.
Our daughter Rivka, who is
tube. The nutrition definitely
two years old, was born with a
helped. Her gross motor and fine
H.L.
Jerusalem, Israel
LOOKING FOR SOFTWARE
Put Laureate's award winning
I am hoping that someone can
software to work for your child.
help me locate software for my 16-
year-old, learning disabled son who
Computers are powerful tools. Effectively harnessed, they
must pass regents competency tests
to obtain his high school diploma.
can open new worlds for your child.
Software, such as Math Blaster,
But quality software is essential. You need programs
is wonderful but not for my son,
designed by people who understand children with special needs.
because it doesn't explain how to
Programs that are easy-to-use, exciting, flexible, and
reach the correct answer.
effective.
I have been in touch with Link
Laureate offers the quality you need.
Resources, but their database lists
software prohibitive in cost.
To learn how your child can benefit from
In line with the above, we can
Laureate's special education
no longer deduct the cost of soft-
software, write or call. Ask
ware or other materials to help our
for our free catalog.
disabled children, unless there are
also unfortunate high medical
expenses. Perhaps we can all write
to our legislators asking for a special
amendment to the tax reform bill for
Laureate Learning Systems, Inc.
our special needs children.
Dept. E-7
The media is filled with items
110 East Spring Street
Winooski, VT 05404
about the national disgrace of our
schools. If the mainstream can't
(802) 655-4755
succeed, how can our children?
8 EXCEPTIONAL PARENT OCTOBER 1988
FAMILY FORUM
Of course, the parents of gifted
enzyme deficiency called propionic
He is very small for his age,
children will want the same for their
acidemia. He also has seizures.
below the third percentile, and is
children, but gifted children manage
We would like to hear from
fed via a gastrostomy tube. Our son
to do well in spite of the educational
anyone who has a child with this
has had a tracheostomy in place
systems.
illness.
since he was a month old because he
has laryngomalacia.
R.A.
C.S. & D.S.
Presently, he is on two
Brooklyn, N.Y.
Rochester, N.Y.
medications: Phenobarb for a
seizure disorder and Captopril for
RURAL COMMUNITY
ABSENCE OF THE CORPUS
hypertension. He has been on many
COLLOSUM
different medications over the past
We are the parents of a 23-year-
year and a half.
old man, who has a seizure disorder
We are the parents of a happy
We really are in the dark as far
and a developmental disability. He
one-and-a-half-year-old boy who is
as what to expect in the future for
wishes to start a rural community
mentally and physically disabled. A
out son. If there are any parents
for teens and young adults.
problem we face is that his
who have children with one or more
We would like to hear from
symptoms do not fit into any known
of the above conditions, we would
parents with an interest in such an
syndrome.
appreciate hearing from you. Your
effort.
He has a congenital, structural,
information may shed some light on
central-nervous system abnormality
the problems of a very special child.
L.W.
consisting of, among other things,
Brooklyn, N.Y.
absence of the corpus collosum. His
B.M.& B.M.
development is markedly delayed,
Forestburg, Alberta
POLAND SYNDROME
and he has microcephaly (small
Canada
head), club feet, underdeveloped
My six-month-old grandson
thumbs and radial bones and is
was born with Poland syndrome.
diagnosed as being cortically blind.
His disabilities are a smaller right
hand, webbed fingers, a shorter arm
Has someone ever needed help in
and absence of the pectoralis major
muscle of the chest.
an emergency and you could not
This is evidently a rather rare
hear them calling you?
condition, and we are not aware of
the cause. There seems to be a
Med-A-Call eliminates the fear & panic which
difference of opinion as to whether
can occur if a life threatening
it is genetic or not.
situation arises and you aren't
I am interested in contacting
within calling distance.
other parents and grandparents
who share this same problem. We
are told nothing can be done except
surgery for the sadactly of the
"Med-A-Call"
:o!
fingers.
If someone who has
experienced Poland's syndrome
We realize the amount of work involved in the daily care for the special
could share ideas and suggestions
needs patient. Time just isn't sufficient to accomplish all of the
as to what to expect long term, I
household activities, while caring for someone. Med-A-Call will allow
you some free time; to garden, cook meals, or to take a much needed
would be very appreciative.
rest while still feeling secure in the fact that you can easily be reached.
(Med-A-Call has an effected range of 100 feet.) Whether it's for an
C.B.
emergency or a needed glass of water, Med-A-Call will alert you. With
Baltimore, Md.
Med-A-Call help is only a pushbutton away.
For More Information on this Low-Cost "Alerting System"
ENZYME DEFICIENCY
contact your local Medical Supply Company or
Write or Phone: Silent Call Corporation
Our son is eight and a half
Voice - (313) 391-1710 or T.D.D. - (313) 391-1799
P.O. Box 16348
years old. He was born with a rare
Clarkston, Michigan 48016-6348
Silent Call - a better way to stay in touch
EXCEPTIONAL PARENT / OCTOBER 1988 9
FAMILY FORUM
PARENTS RESPOND
basic symptoms of CLF, such as a
poor memory, inappropriate social
behavior (i.e. too immature). Her
In response to L.N. and D.N. who
where our pediatric neurologist is
basic skills are also poor abstract
requested information about
associated.
infantile neuronal ceriod-
thinking, descriptive language -- in
Because her cellular involve-
the low range. The best we can do
lipofussinoses (Parents Search,
ment is still at a low level, her
is to maintain the skills she has and
July/August 1988).
diagnosis is being reserved.
keep plugging along, keep her
Apparently, when 50 out of 110 red
thinking, keep her doing
Editor's Note: This condition is also
blood cells are involved, then a
We look constantly for signs of
refered to as Battens disease or Batten-
conclusive diagnosis will be issued.
regression or mental loss beyond
Vogt syndrome.
At this moment, she has only 20
the poor memory. We try to keep
blood cells showing the debris.
her physically active. We watch her
You cannot imagine how
They also believe we inadver-
daily food intake (cheating only
surprised I was to see your letter in
tently helped her by researching the
when absolutely necessary) and we
EXCEPTIONAL PARENT
condition and devising a sort of
religiously give her her medications.
magazine. I have periodically
"meal plan" of our own. We
I cannot offer you any novel
considered writing just such a note.
immediately put her on 200 mg of
approach to what you must be
In our case it is suspected our
vitamin E daily. We have since
facing. We're facing it too in our
nine-year-old daughter, Christine, is
found out that in its juvenile form,
own way. Don't give up and don't
in the juvenile stage of neuronal
there is a good response to vitamin
give in to grief. The good days are
ceriod-lipofussinoses (CLF). We
E and selenium therapy.
great, and the bad days are des-
have had extensive blood work ups
Christine also has a seizure
perate. No matter how hard I try to
at the Institute for Basic Research
disorder and a mild form of cerebral
read up on it, investigate new
(Staten Island, N.Y.), as well as a
palsy. Her learning disabilities stem
information and do as much as I
skin punch. Other blood work ups
from a combination of these
know how, I simply cannot adjust to
have been done at the hospital
conditions as well as some of the
it at all.
If you can, would you tell me
The Handicapped's Source®
about your daughter? I'm especially
interested in how your neurologist
suspected CLF and how he tested
Computer Products For
her. Has your neurologist
mentioned anything about the
studies conducted in Finland?
Complete Computer
We've never met another
Systems
parent whose child has this disease.
Alternate Input Devices
It does help, in an odd way, to know
Software for:
Basic Living Skills
someone out there knows what you
Problem Solving
are talking about and what you are
Evaluation / Utility
going through. Our situations may
Creative Development
not be identical, but we're in this
Educational / Entertainment
together.
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Kyrina McCormick
Pleasantville, N.Y.
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10 EXCEPTIONAL PARENT / OCTOBER 1988
FAMILY FORUM
I would love to be put in touch
that are popping up.
East, Spanaway, Wa. 98387, (206)
with this family and to help them in
I have a seven-year-old boy
847-2926. I have been in contact
every way I can. This is a very
who was diagnosed as having
with two mothers locally who have
devastating disease with no cure at
Battens disease last year. Since he
children with it. I have some
the present time. Our best hope
was eight months old we knew
literature on Battens, if you're
now is to come together as a family
something was wrong, but nobody
interested.
to support one another and share
knew what. Up until last year, we
The part I find the hardest is
information. We are striving to
were told he had cerebral palsy.
not knowing what to expect in the
reach all families. Currently, there
Michael cannot sit, walk or talk. I
future and will I be able to care for
is very prominent research taking
do everything for him. I have two
Michael. Everytime he exhibits a
place in Staten Island, N.Y. They
other children who are OK a girl,
different behavior, I think "is this
are seeking all available
ten, and a boy who will be four.
part of Battens?" Sometimes I wish
information.
I am curious to know what
they never told me.
I would also like to express my
your neurologist told you to expect
Michael goes to AHRC five
appreciation to EXCEPTIONAL
in the future. Everything I have
days a week from nine to three; that
PARENT for quality information.
read about Battens says the infantile
helps alot. He is difficult to handle.
Incidentally, I was personally
stage has a life span of about five
My mom lives with us and that
introduced to the magazine by a
years. They tell me there are
helps, but he's getting hard for her
friend who also has a child with
variations. Michael has a lot of
also.
Battens disease.
orthopedic problems, including
I would love to hear from you
very bad scoliosis. He eats well and
and help in any way I can. If you
Linda Pierce
is pretty healthy.
would like, I'll send copies of the
New Carlisle, Pa.
Have you been in touch with
information I have on Battens.
the Battens Support Group? The
I cannot believe all the cases of
woman in charge is Judy Grant, and
Gail Canale
infantile neuronal ceroid-
their address is: Battens disease
Franklin Square, N.Y.
lifofuscinoses, or Battens Disease,
Support Association, 6707 1097th St.
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EXCEPTIONAL PARENT / OCTOBER 1988 11
PRESIDENTIAL CANDIDATES SPEAK OUT
B
uilding a society that offers genuine opportunity to
agencies serving young children with special needs and to
every citizen must be the top domestic priority for the
develop guidelines to assist states to set up effective early
next president of the United States. People with
intervention programs.
disabilities have the same needs and aspirations as all
When Americans with disabilities who want to work are
Americans: decent housing, a good job, a first-rate education,
excluded form employment, the entire nation bears the cost. I
affordable health care, the opportunity to live with their
will work to restructure benefit programs to provide
families and to enjoy the community in
reasonable incentives and appropriate
which they live.
support for people with disabilities. My
As a nation, we are all diminished by
administration will set a goal of ensuring
discrimination toward citizens with
that every adult who has a disability has the
disabilities. My goal is to reassert the role
opportunity for a good job at a good wage.
of the federal government to promote
Under the Reagan Administration,
integration, social and economic indepen-
federal support for barrier-free, low-rent
dence and equality of opportunity for all
housing has declined 70 percent, and the
individuals with disabilities.
existing housing built with public funds has
The next president must make it clear
been allowed to deteriorate.
that discrimination against people with
Housing opportunities for people who
disabilities will not be tolerated. I
have disabilities will be thoroughly inte-
supported the Civil Rights Restoration Act
grated in the National Partnership For
from the outset and as president, I will
Affordable Housing, a plan I have proposed
demand vigorous enforcement of Section
that combines private investment with
504 of the Rehabilitation Act of 1973 to
public initiative to make decent and
prohibit discrimination by institutions that
affordable shelter the birthright of every
receive federal funding. I will also insist on
American.
strict enforcement of the Fair Housing
Access to affordable and adequate
Amendments Act of 1988.
health care coverage is important for all
The Americans with Disabilities Act of
Americans and especially for citizens with
1988 is a major step in ensuring that the
disabilities. Many people who have
civil rights of Americans
disabilities are unable to
with disabilities are fully
enter the work force for fear
protected. I support the
"My goal is to reassert
of losing essential health
principles of this legislation,
which ensures full
the role of the federal government
care. Others can work only
by carrying a staggering
participation and equal
to promote integration, social and economic
burden of uninsured medical
opportunity for all citizens
independence and equality of opportunity
fees, equipment costs and
who have disabilities.
for all individuals with disabilities."
personal assistance services.
For children who have
The best way to ensure fully
disabilities, educational
adequate health coverage
opportunity is society's
Michael S. Dukakis
across the board is a national
most productive investment.
program of universal health
However, the attitude of the
care like the one I recently
present administration toward funding of special education
signed into law in Massachusetts. This program allows adults
has been penny wise and pound foolish.
with disabilities who work full or part-time, as well as families
I support more effective federal cooperation with the
with children who have disabilities, who are unable to obtain
states to implement the Education For All Handicapped
adequate employer-supported coverage, to buy a compre-
Children Act (P.L. 94-142). We must ensure that children with
hensive state plan covering virtually all disability-related costs
disabilities are educated with their non-disabled peers to the
that are not covered by their employer's insurance plan.
maximum extent appropriate. But our commitment must not
Without adequate transportation, real equality of
end with classroom instruction. In Massachusetts, we have
opportunity is impossible. The goal of federal policy must be
implemented the landmark "Turning 22" law to develop a
the provision of equal access to affordable, accessible public
transitional service plan for each student leaving special
transportation. I will see that every community moves toward
education and needing continuing support to live and/or
the expansion of accessible transportation systems.
work independently. The federal government can provide
The independent living movement is at the heart of the
leadership that encourages other state and local governments
effort to secure the civil rights of people with disabilities and to
to provide similar services.
develop services that respond directly to their needs and
We know that early intervention for infants and toddlers
aspirations.
significantly decreases the need for special education and other
We need to promote community and home-based health,
services later on. This results in both cost savings and
rehabilitation and independent living services covered by
improved functioning for these children and their families.
public and private insurance programs, as well as other public
I believe the federal government must provide leadership
and private resources. We must develop flexible, dignified
in working with states to promote cooperation among federal
Dukakis continued p. 14
12
EXCEPTIONAL PARENT / OCTOBER 1988
PRESIDENTIAL CANDIDATES SPEAK OUT
T
he vast majority of the 36 million Americans with
We must remember that we are addressing a large and
disabilities believe that their lives have improved in the
significant percentage of Americans. The Harris survey
past decade. Attitudes toward people with disabilities
established that over 36 million Americans have disabilities;
are changing in a positive direction and more people with
nine million of these Americans are under the age of 16. Forty
disabilities than ever before are being educated. These are
percent of all adults with disabilities did not finish high school
some of the findings of the first comprehensive survey of
-- three times more than non-disabled individuals. In 1984, 50
people with disabilities, conducted by Lou
percent of all adults with disabilities had
Harris and Associates and released in
household incomes of $15,000 or less.
1986. But I firmly believe, and the survey
Among non-disabled persons, only 25
also indicated, that without aggressive
percent had household incomes in this wage
public and private support, people with
bracket. With respect to employment, only
disabilities will not be able to achieve their
one in four persons with disabilities works
highest priority, namely, the indepen-
full time, another 10 percent work part time.
dence necessary to achieve control over
There are at least eight million unemployed
their own lives and integration into the
individuals with disabilities who want to
mainstream of American life.
work but need help finding employment.
By speaking with experts, with
The statistics consistently demonstrate that
people with disabilities, and with parents
people with disabilities are the poorest, least
of children with disabilities from around
educated and the largest minority in
the country, I have learned much more
America.
about the needs of disabled individuals. I
We must develop programs and policies
understand what people with disabilities
that promote independence, freedom of
strive for independence, control of their
choice and productive involvement in the
own lives, and integration into society.
social and economic mainstream. This does
Many of the disabled I have met with
not merely mean employment. It also means
have major responsibilities in local and
access to the mainstream educational system,
national organizations such as The
to public accommodations, to public
National Council on Independent Living,
transportation in other words, meaningful
National Parent CHAIN,
access to all aspects of society.
Capitol People First of
Further, we must include
Sacramento and the Assoc.
"We must develop programs and
people with disabilities and
on Handicapped Student
their parents in the process to
Service Programs in Post-
policies that promote independence
ensure that their real needs
secondary Education,
freedom of choice and productive
are addressed.
which are all run by and
involvement in the social and economic
The stakes are enormous.
for people with disabilities.
mainstream."
On the cost side, the National
I am proud that from the
Council on the Handicapped
start I have been able to
states that current spending
speak directly with people
George H. Bush
on disability benefits and
with disabilities and the
programs exceeds $60 billion
parents of children with
annually. Excluding the
disabilities, bypassing the intermediaries.
millions of disabled who want to work from the employment
These individuals made it very clear that those in the
ranks costs society literally billions of dollars annually in
disability rights movement have two critical goals: the right of
support payments and lost income tax revenues. On the
people with disabilities to control their own lives and make
benefit side, the United States is now beginning to face labor
meaningful choices; and, the right to be integrated into all
shortages as the baby boomers move through the work force.
aspects of society. As far as education, the Republican
People with disabilities offer a pool of talented workers whom
Platform includes a commitment to protect the rights
we simply cannot afford to ignore, especially in connection
established under the Education for All Handicapped Children
with the high tech growth industries of the future.
Act, which mandates a free, appropriate public education for
During the past six years, I have advocated the
all children with disabilities.
appointment of persons with disabilities and parents of
These goals may sound revolutionary in regard to the
persons with disabilities to major posts in the federal
treatment of people with disabilities; but they are not radical in
government. As president, I will expand the number of
relation to the American values of individual freedom of
persons with disabilities and parents of persons with
choice and involvement in the social, political and economic
disabilities appointed to key positions in my administration.
mainstream. Although children and adults with disabilities
Moreover, I pledge that my administration will do away
have made many gains in the last decade, the stark fact
with "Hire the Handicapped Week" and replace it with federal
remains that unnecessary segregation and exclusion of people
legislation that gives people with disabilities the same
with disabilities continues. As a result, disabled adults and
protection in private employment that is now enjoyed by
families with disabled children suffer from stress, dependency
women and minorities.
and isolation.
Bush continued p. 14
EXCEPTIONAL PARENT / OCTOBER 1988 13
PRESIDENTIAL CANDIDATES SPEAK OUT
MICHAEL S. DUKAKIS
GEORGE H. BUSH
personal assistance services to support personal independence,
In order to assume that every American who wants a
sustain the integrity of families and open avenues of employ-
productive job in the private sector has a job, I will continue to
ment. We can identify new and effective ways to reach out to
support initiatives to:
persons with the most severe disabilities so that they too can
Ask the private sector to work more aggressively in
enjoy the participation.
hiring people with disabilities, using my office
I have further supported the principle of self-determi-
to educate employers about the statistics showing
nation of people with disabilities to leadership positions in key
clearly that, other things being equal, disabled
state agencies. I will continue to support the development of a
employees perform above average.
strong national network of independent living centers. I will
Train people with disabilities for jobs that really exist
actively recruit people who have disabilities into all levels of
where they live.
government and public policy making.
Work with Congress to eliminate disincentives that
For children with disabilities, their families are the major
discourage disabled persons who wish to work from
source of financial and emotional support. Families need and
working.
deserve far more assistance -- respite care, parent training and
Improve transportation and work place accessibility
help in accessing and coordinating services.
for existing facilities and insist on accessibility for all
People in need should be able to count on the federal aid
new construction.
to which they are entitled. The current administration tried to
Support independent-living centers to help disabled
throw hundreds of thousands of people with disabilities off the
persons with the transition to independence.
Social Security rolls without due process. In Massachusetts, I
Urge private insurers to find ways to include, not
ordered a moratorium on these cuts and created a process that
exclude workers with disabilities in their programs.
became the model for national legislation to prevent recurrence
Individuals with disabilities are not a small, uniform
of this grave injustice.
minority with narrow interests. The disabled community
Together, we can build a new future for American citizens
includes every race, culture, age, sex and economic class.
with disabilities: a future of dignity, security and equal
Membership is open to all and most of us who live our full life
opportunity -- a future that will demonstrate that citizens
span will join this community sooner or later.
with disabilities are full partners in society and equal partners
in building a foundation of equality for all.
"...SO we talked about how her
daughter could live in the dorm and
still use her TDD. I said AT&T made
a portable one she could take with her.
she thought it was a great solution!"
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14
EXCEPTIONAL PARENT / OCTOBER 1988
SPECIAL CHILDREN NEED SPECIAL SEATING
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A
Song For
David
Creating ways to
communicate
D
avid will do anything for a song.
to give him every opportunity to
Sing him a song, and he is happy. If
communicate and determine the most
he could talk, I imagine he would
appropriate method for him to use.
with a child who is
sing all day. But because he is head-injured
nonverbal.
and therefore unable to speak, he has to
SIGN LANGUAGE
settle for a song from others.
David has devised some rather creative
David's use of sign language is an
ways of asking for his favorite songs. He
example of how we encouraged him to
can ask for one by stamping his foot, or
express the essence of his experience in a
spinning in a circle, a third by jumping with
physical movement. For example, he loves
his back to you and another by waving his
to hold his hand near an open window in
arms. These simple movements express the
the car and feel the wind rush by. One day
essence of the songs for David. For
when he was fussing in the car, I asked him
example, spinning in a circle is what "Ring
what he wanted. He held up his hand to
Around the Rosie" is all about for him.
the closed window -- a sign was born.
Bouncing in someone's lap is the best part
Now whenever he wants to feel wind from
of another song. These movements com-
a window, the blowdryer, or a hand dryer
municate what he wants to say and show us
in a public rest room, he holds up his hand.
what particular songs mean to him.
David's greatest love is music.
In order to help David develop com-
Therefore, many of his signs are requests
munication skills, we have tried to under-
for specific songs. What he likes most
stand what David wants most and what it
about "Ring Around the Rosie" is spinning
means to him -- for example, the essence or
around in a circle. Since he is capable of
most enjoyable aspect of the song. Because
spinning endlessly without a song, we
he is nonverbal, we have focused our efforts
decided to make his spinning into
By
on alternative means of communication
something useful -- a sign for "Ring
Charlotte Forbes
such as sign language, gestures, and
Around the Rosie." Whenever he started
communication boards. In using three
spinning, we would interpret it as a request
different methods simultaneously, we hope
to do the song with him. Eventually, he
16
EXCEPTIONAL PARENT/ OCTOBER 1988
Standard sign
language is
preferable to
David's made-up
signs, but it
would have been a
lot more difficult
for him to learn.
Photo by Cheryl Cullen
learned that spinning signalled to us that he
learned the sign, we would not sing the
wanted us to sing and play "Ring Around
song until he signed for it.
the Rosie."
David was able to learn these three
David's favorite part of the song "This
signs very easily and quickly because he
is the Way the Ladies Ride" is bouncing up
wanted to be able to communicate them,
and down on his father's lap. Since that is
and because the sign was so closely related
also the way to begin the song, David
to the activity itself. Certainly standard
quickly learned to use it as a sign. As with
sign language is preferable to David's
most of his signs, at first he needed to
made-up signs, but it would have been a lot
understand what the sign meant and be
more difficult for him to learn. Our primary
taught to use it. We began by bouncing him
goal was to enable David to communicate. I
up and down as he would to jump into his
feel that learning primitive signs in the
father's lap. Then we interpreted the
beginning helped him to learn the standard
bouncing as a request for the song. Once he
signs he is now being taught.
EXCEPTIONAL PARENT/OCTOBER 1988
17
Outdoor
GESTURES
Freedom
We have also encouraged David to communicate
through the use of gestures. His gestures are similar to
his signs, although they are more direct and less specific
in meaning. One of the first things I taught him was to
lead me by the hand to what he wanted or needed help
with. I began with the front door, because he loves to
open and close it. When he stood at the locked door
fussing, I would pull him to me and walk to the door
with him hand-in-hand and unlock it. After many trials,
1988 RSI
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he was able to take my hand and lead me to the door.
The Baby Jogger R
Eventually, he learned to find me and lead me to the
door, as well as other things he wanted.
Mobility and comfort combine for both parent
When David goes to certain locations in the house,
and child! The Baby Jogger offers new models
he is telling us he wants something. He sits on the couch
to suit a variety of special needs. Go anywhere
where we always read to him when he wants us to read
with the ultimate all-terrain stroller. Travel over
him a story. He sits in his seat at the kitchen table when
gravel, grass, curbs, even sand and snow with
he is hungry. We taught him to go to the refrigerator
"The stroller for runners." Trips to the beach or
and open the door when he was thirsty He has since
park are easy with the smooth-rolling three
wheel design. A variety of models available for
learned to carry the juice to the table and get his cup, but
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He was able to learn these gestures because they were so
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a single, loose object. We tried to think of an object that
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David loves to swing. It was hard to find an object that
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18 EXCEPTIONAL PARENT / OCTOBER 1988
Helping hands to give
your child freedom
to play in the bath
The Columbia
Wrap-around Bath
Support lets your child
experience all the fun and
therapeutic value of water
play while supported
safely and comfortably in
a normal seated position.
Safe - wide, stable base;
Photo by Cheryl Cullen
non-slip rubber mat.
Durable - reinforced
fiberglass yoke, rustproof
oversize PVC tubing for a
rugged lightweight base
that's easy on your tub.
Adjustable - to fit your
David and his mother playing with a bat and ball.
child perfectly.
Versatile - as a go-
anywhere support indoors
We introduced two more activities: drinking juice
or out!
and playing with an adult. The cup David most often
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drank from signified that he wanted to drink some juice.
catalog, and local dealer.
To tell us that he wanted to play, we chose one of his
small toys. Both were attached with Velcro to the wall.
COLUMBIA
MEDICAL
MFG. CORP.
We taught him to hand one of the objects to us. If he
Dept. EB, P.O. Box 633, Pacific Palisades, CA 90272
chose the cup, we filled it with juice; if he chose the toy,
(213) 454-6612
we played first with that toy and then, keeping it right in
front of us, we played with other toys.
We began using a board that contained objects that
directly represented several of his favorite activities. We
found that attaching objects with "tie-wrap" to a peg
Juvenile
board was the most convenient method. We used a very
small ball to indicate playing ball, a small book for
reading, and a baby spoon for eating. We moved his
Arthritis
hand from object to object identifying it as he touched it.
He soon learned to touch each object by himself, and we
At Children's Seashore House, children with
told him what it represented. He indicated his choice by
juvenile arthritis benefit from a nationally
leaving his hand on the object, tapping, or vocalizing
recognized program of diagnosis and treat-
excitedly as we identified it.
ment that includes:
We also developed a food choice board to enable
comprehensive care by an inter-disciplinary
him to make decisions about his meals and snacks. We
treatment team
started by letting David make choices between the foods
assistance with self-care, mobility, and
put in front of him. Next we made a board with two
developing independence in activities of
foods, cheese and crackers, attached to it. This was
daily living
slightly more difficult because he could not take the food
parent and child support groups
ongoing clinical and basic research.
from the board to communicate a choice to us. We
For information about our special program
slowly increased the number of choices and began to use
for children with juvenile arthritis, call us.
objects that were symbolic of the foods rather than the
actual foods. For instance, we used the lid of a yogurt
container for yogurt, a small bell shaped like a piece of
candy for candy, and a small plastic spoon for a spoonful
Children's
of peanut butter.
In developing David's communication boards, we
Seashore House
used objects that most directly represented a preferred
A Regional Hospital for Specialized Care and Rehabilitation
activity and slowly moved to more symbolic ones. A
Atlantic City, New Jersey
Philadelphia, Pennsylvania
609-345-5191
215-596-9103
EXCEPTIONAL PARENT / OCTOBER 1988 19
book and a ball directly state a desire to read or play
It was often difficult for us to help David develop
ball. We tried to find objects that were both represen-
communications skills -- to reach down to his low level
tative and expressive of the activity. He drank his juice
of functioning and see things from his perspective. Yet it
from the same cup he chose to indicate that he wanted
was crucial for us to identify these simple, basic, first
juice. The rope reminded him of the ropes he held on
steps because they were David's foundation. David saw
the swing. He gradually moved to objects on his
that he could communicate by touching a piece of cheese
communication board that were symbolic of activities.
or handing us a piece of rope and that communication
had great rewards. We were able to find out what David
DAVID'S PROGRESS
was capable of learning by asking ourselves these few
questions:
David's communication skills have progressed since
What is important to him?
the days of cups attached to the wall and a rope by the
If he could ask, what would he ask for?
swing set. He uses a communication book that contains
What does he enjoy about it?
photographs to indicate his choices. He has a decent-
What is the experience like for him?
sized repertoire of signs, and several words. I remember
The answers to these questions left us with a little boy
thinking, "Why should I wait until he picks up the rope
jumping up and down to ask us for a silly song, but they
before pushing him on the swing?" or "Why are we even
also left us with a little boy learning to communicate.
thinking of sign language -- after two months he still
Now, though we are often reminded of his limitations,
can't touch his hand to his mouth to sign for juice?"
we can also remember how far he has come. David can
But we kept at it, and in the process David made a
have his song.
wonderful discovery. David discovered that he could be
a communicator. He could change something, request
something or make a choice. By helping him to find a
Charlotte Forbes received her master's degree in special
primitive means of expression, we showed him the joy
education from Eastern Michigan University. She is a part time
of communicating. Once he knew the rewards of being
teacher at Dean Junior College in Franklin, Mass., and is a
board member of the Blind Children's Fund. Charlotte and her
able to communicate, he became extremely motivated.
husband, Harry, live in Wrentham, Mass., with their three
Learning new signs and gestures gave him power.
children, David, seven, Gil, five, and Peter, two.
A BARRIER-FREE LIFE
For the severely disabled child or young adult, life can present obstacles that are internal as well as
external.
At Matheny, students develop the self-confidence and the functional skills necessary to explore options
and determine lifetime goals.
Each student's individualized program combines special education, therapies, vocational training,
personal care, social and psychological services, medical treatment and rehabilitation engineering. Our
older students also receive assistance in forming realistic plans for long-term living arrangements.
TO learn more about Matheny, or to arrange a visit, contact:
Matheny
Peapack, N.J. 07977
201/234-0011
Founded 1946
20
EXCEPTIONAL PARENT / OCTOBER 1988
New in Children's Literature
It's Your Turn at Bat
Written by Barbara Aiello and Jeffrey Shulman
Illustrated by Loel Barr
"It's Your Turn at Bat goes a long way toward
"Mark Riley presents an accurate and realistic
taking the 'dis' out of disability. It has blood in its
portrayal of a child with CP dealing with the
veins, and I like it! After reading this engrossing
many facets of life in the mainstream. It's Your
story, you'll understand why I'd want feisty Mark
Turn at Bat should be required reading for
Riley for a friend if I were an eleven-year-old.
youngsters in our elementary schools.
Bernard Posner, Former Executive Director
Mike Mushett, Executive Director
President's Committee on Employment
United States Cerebral Palsy
of the Handicapped
Athletic Association
"World famous sports editor and champion
Cruiser driver"-that's Mark Riley. Mark was
born with cerebral palsy. That hasn't slowed
him down though. Especially when he's wheel-
ing in his "souped-up, super-sport, faster-than-a-
speeding-bullet Cruiser"-you know, his wheel-
chair. In It's Your Turn at Bat, Mark discovers
that strength must come from within when it's
time for a big league play. It's "Batter up" for the
one and only Mark Riley!
It's Your Turn at Bat is part of a unique book
series based on the characters of a fascinating
educational program called The Kids on the
Block. Like all children, "The Kids" are special
people. And like all children, they have their dif-
ferences. But their differences are only one facet
of their vital and exciting stories, only one part
of the richness of their lives. Their delightful
stories will be read again and again by children
everywhere.
It's Your Turn at Bat
A Kids on the Block Book
Featuring Mark Riley
7" X 9" Illustrated
Price: $12.95 48 pages
Hardbound For children ages 8 to 12
Publication date: November 1988
Twenty-First Century Books
38 South Market Street, Frederick, Maryland 21701
(301) 698-0210 Call toll free 800-421-0021
ELECTRONIC
COMMUNICATION
AIDS:
QUESTIONS
and
ANSWERS
Understanding
For children with severe speech impairments, technology offers more
electronic
options than ever before. Electronic communication aids no have speech
communication
that is more natural sounding, larger memories allowing thousands of
aids will help you
messages to be stored and rapidly produced, the ability to provide access
make the right
to computers, and greater portability. Technology is developing at such a
choice.
rapid pace that we are also faced with numerous options, making it
essential that parents of severely speech-impaired children become
knowledgeable about what electronic aids are available and what they can
really do for their children.
Becoming knowledgeable is more than knowing the name of the latest
speech synthesizer or subscribing to every publication involved with
technology for people with disabilities. It begins with a realistic view of
the potential of electronic aids and doing away with the misconceptions
that often surround them.
My child speaks even though it is
speech, even when it is not understood
difficult for those who do not know
after several attempts.
him to understand him. If I get him
With proper training, your child will
an electronic aid with speech
be taught to use his speech first and, if it is
output, I am afraid he will stop
not understood, to use the electronic aid as
talking altogether.
a backup. By providing another approach
to communication, the pressure is removed
Clinical experience has shown that if
for the child, who relaxes and is better able
your child has a desire to communicate, he
to communicate through whatever speech
will not choose to use an electronic aid over
abilities he has. As a result, his speech may
speech; it is far too slow and inefficient.
become more fluent and intelligible. Using
By
Rather than becoming dependent on the
a communication aid your child can also
aid, a common occurrence is for your child
Iris Fishman
indicate to the listener the topic he wants to
to first attempt to use whatever speech
discuss. This can assist the listener in
abilities he has and then to persist in using
understanding the child's speech.
22
EXCEPTIONAL PARENT/OCTOBER 1988
Once I get this electronic aid for
Why should I spend three to four
Jennifer Johnston.
my child, he won't need to use his
thousand dollars on this electronic
Story page 24
sign language or his old homemade
aid when for the same money I can
communication board anymore.
get my child a computer that can
do much more?
As a result of the technological
Many parents make the mistake of
revolution in augmentative communication,
falling into the "computer trap." This is the
it is easy to understand why parents might
belief that it is more important for a speech
think of electronic aids as better than other
impaired child to use a computer than it is
means of communication. After all, a
to communicate and that computers are
machine that costs thousands of dollars and
better than communication aids and will
can speak should be better than a board
somehow compensate automatically for
made from paper and ink. In fact, selecting
your child's communication problems.
these aids is never really an either/or
There is a general confusion between
decision. A child using an electronic aid
communicating and using a computer, as if
will still need to use other means of
the two were interchangeable.
communication. Just as we use gesturing,
In many cases, providing your child
pointing, facial expressions and even
with access to a computer may open the
writing to supplement our speech, your
way to pursuing academic and vocational
child will also need to use multiple modes
goals. In fact, for persons with disabilities,
of communication.
the ability to use computers is rapidly
In certain situations, other modes may
becoming a prerequisite for obtaining an
be more effective than the electronic aid.
education or pursuing a career. The use of a
For example, if your child is laying on a
computer, however, would not eliminate
mat, he may not be able to operate his
the need for an effective means of
electronic aid, but he may be able to
communication, but simply make providing
indicate messages on his board or to use
it more important. After all, if your child is
sign language. A decision as to when to use
in school but he cannot communicate with
each mode of communication available to
others, what good is his education?
him must be made for each child. This is
Regardless of how well a child uses a
essential in order to provide an effective
computer, if speech is not functional, he will
overall communication system.
still need a communication aid.
EXCEPTIONAL PARENT/OCTOBER 1988 23
A
ENJOY COMFORT OF TRAVEL BY CAR
ATTENDANT EFFORT IS MINIMIZED
Jennifer's Story:
NO NEED TO TRANSFER
ELECTRIC LIFT DOES THE WORK
TOTAL PACKAGE ECONOMY
auto-mate
ennifer Johnston is an eleven-year-old girl with
J
bright, shining, brown eyes, a winning smile
and a quick sense of humor. She also has
cerebral palsy and is unable to walk or, to
speak. But with her electronic communication aid,
which produces spoken and printed output, one
soon forgets that she is disabled.
Jennifer did not always have this electronic aid.
As a young child, she spent many years receiving
traditional speech therapy in the hopes that she
would develop intelligible speech. At the age of six,
The Auto-Mate™ system is comprised of a specially designed wheelchair
when it became clear that most of her
and companion lift for use with mid-sized, two-door automobiles. The lift
raises the occupied chair off the ground. It is then reconfigured to allow
communication was still being produced through
it to be swung into the car and serve as the passenger seat. The lift
laughing, crying, and answering yes/no questions,
system is mounted on the same bolts used originally to secure the
serious efforts toward developing an augmentative
passenger seat. No permanent modification to the car is necessary. The
lift system can be used to reinstall the passenger seat - returning the
communication system for her began. This started
car to its original seating configuration in about a minute.
with a simple communication board with three
This new concept in automobile wheelchair travel can make life less
messages -- I want to go on the floor (because she
restrictive, easier and more fun for both the wheelchair user and any
involved attendant.
liked to get out of her wheelchair to play with the
other children); I want to go to the bathroom
For Free Brochure
(because she was very concerned with letting those
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who took care of her know this); and Gina (because
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Woonsocket, RI 02895
she loved to play with this particular classroom
attendant). Jennifer was able to point to each of
these messages with her left fist. Gradually, more
and more messages were added to the board and, as
"Providing Maximum
they were added, her pointing skills became more
Opportunity for
accurate. Soon she had a board with over two
Success and Well
Being to Individuals
hundred words and phrases.
Unable to Attain
Although her parents and teacher were
Such on Their Own"
delighted with the progress she had made, clearly
the board was not enough. Jennifer needed an
Annandale
electronic aid that produced spoken output so she
could communicate with other students, to people
Located Near
Atlanta, Georgia
Village
Another result of the computer trap is that aids that
are computer based (a computer that comes with
Annandale at Suwanee is d non-profit corporation
software to make it act like a communication aid) are
founded in 1969 to provide residential care and
often considered better than those which are designed
social/vocational services to developmentally
disabled adults. Situated on 100 acres of rolling
specifically to be communication aids, because
hills, woodlands, pastures, and farm land, with a
consumers believe they can also perform other computer
15 acre lake, the Village is comprised of more
functions. It would appear that the purchaser is getting
than 20 buildings. Well-suited to living and learn-
two devices -- one for computing and one for
ing, the Village continues to expand its facilities
and personnel to offer a broader range of quality
conversation -- for the price of one. With the increasing
programs and services. For further information
number of laptop computers now available, it becomes
contact Dr. John J. Barnes, Executive Director.
even more tempting to do this. In reality, however, most
laptop computers that can run communication software
Annandale at Suwanee, Inc.
cannot also run software appropriate to the educational
P.O. Box 7, Suwanee, Georgia 30174
needs of children.
(404) 945-8381
24 EXCEPTIONAL PARENT / OCTOBER 1988
Communicating her
"It's a jungle out here!"
personality
Protect your
standing across a room, or to those over the phone.
child's head
Yet, she needed printed output because the ability to
write would help her learn how to spell. Without
on the jungle gym
with
spelling, she would always be dependent on
someone else to program words for her into her
electronic aid or write them on her communication
Constructed for
board. She would never really be able to express her
thoughts independently.
cap
safety; designed
for comfort
Last year, an electronic aid that would meet all
and appearance
her needs was selected. At first it seemed as if the
Made with bump-
Weighs only 3 OZ.
absorbent foam
aid would never replace her communication board.
Flame retardant
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After all, she had been using the board for four years
Durable;
Machine wash & dry
abrasion-proof
and it seemed to have everything on it she needed to
Fits 6 months
Great for use with
say. But once the aid was on her lap tray and
to 5 years
car safety seats
accessible to her all the time, she began to use it.
Perfect for bikes, playground & sledding
With her new voice, she discovered the power
of telling a joke. She discovered singing. She also
Freedom with safety for today's
learned the power of writing and being able to do
active tots
work independently without her mother or teacher.
Peace of mind for parents
Because she now had a way to practice spelling, her
spelling improved tremendously. Now if she did
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shipping to: Plum Enterprises, Inc.
she needed to say, she could often spell it. For
for parents who care.® P.O. Box 283, Worcester, PA 19490
©1987 Plum Enterprises, Inc.
example, when her parents asked her opinion about
whether she wanted to enter a new school program,
she spelled "Try it." As a result, there was less
guessing about what Jennifer meant to say because
she could be more specific about her thoughts.
Jennifer was always attractive, intelligent and
Nancis Workout
funny, but in the short time she has had her
electronic aid, it has enabled these qualities to be
the video workouts
clearly revealed to all who meet her. In fact, the
that do it all!
electronic aid has not only augmented Jennifer's
communication but her entire personality.
PHYSICALLY CHALLENGED
THIS
AEROBIC
VIDEO
TAPE
is
SPECIALLY
WHAT IS UNIQUE ABOUT THIS WORKOUT??
DESIGNED FOR THE PHYSICALLY CHAL
IT IS A SUSTAINED AEROBIC WORKOUT
LENGED INDIVIDUAL WHO HAS SPECIAL
WHICH STARTS WITH A WARM UP MOVES
NEEDS OR CHALLENGES WHICH LIMIT FIT
TO A VIGOROUS CARDIOVASCULAR WORK
NESS CHOICES
OUT AND ENDS WITH A COOLDOWN
PERIOD ALL WHILE SITTING DOWN!!!!
There are so many electronic aids to choose
DEVELOPMENTALLY CHALLENGED
AT LAST AN EXERCISE PROGRAM CREATED
SEGMENT TONING EXERCISES ON THE
from. It's impossible to come to a decision.
FOR THE LEARNING DISABLED TMI EMI
FLOOR AND A COOL DOWN PERIOD THE EN
SMI & OTHERS WHO HAVE SPECIAL FITNESS
TIRE PROGRAM IS DONE TO UPBEAT MUSIC
NEEDS
AND is GEARED FOR AN ENJOYABLE FUN
THIS 45 MINUTE WORKOUT INCLUDES A
WORKOUT
WARM UP AN AEROBIC CARDIOVASCULAR
Although there are many different electronic aids
available, once your child's communication needs and
ORDER FORM
physical abilities are established, selections can usually
QUANTITY
ITEM
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INDICATE: VHS
or BETA
be narrowed down. This is because devices tend to be
PHYSICALLY CHALLENGED
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VIDEO TAPE
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designed around the user having specific physical and
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cognitive abilities. For example, if a child is unable to
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walk or to use his hands or a headpointer for directly
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selecting items, is not yet able to spell, and needs printed
SOUTHFIELD. MI 48037 2914
PLEASE PRINT
and spoken outputs and computer access, there are
really only about three types of commercially available
NAME/ORGANIZATION
ADDRESS
aids that will meet his needs.
CITY
STATE
ZIP
PHONE
EXCEPTIONAL PARENT / OCTOBER 1988 25
Standing Aid Frame/Table
The problem is usually one of gaining
access to information, equipment and
FEATURES:
professional expertise and not in
facilitates natural weight
bearing & visual/postural
making the actual decision of which aid
balance
to purchase.
provides specific body part
control for better positioning &
less fatigue
30 day money back
The greater problem you face is how to find out
guarantee & limited 2 year
what the three choices are, how to see them
warranty
demonstrated and how to give your child a trial period
of use with these aids with the assistance of a
CALL TOLL FREE
professional who has an expertise with these devices.
800-255-7317
Some areas of the country are better serviced than others
by electronic aid manufacturers or professionals
specializing in augmentative communication. Thus, the
problem is usually one of gaining access to information,
equipment and professional expertise and not in making
the actual decision of which aid to purchase.
Ergonomically Designed & Made In The USA
Maybe I should wait to select an electronic aid
Ask for Details & Free Copy of Our Catalog
until next year. By that time a better aid will
Consumer Care Products, Inc.
be available.
P.O. Box 684, Sheboygan, WI U.S.A. 53082
est 1978
Tel. 414-459-8353
Everyone wants to know whether a better
sounding, faster, more portable device is coming out
soon. The answer is -- yes, there is but there always
will be. Technology is rapidly changing and
No more
communication aids can be expected to be replaced with
greater frequency than previously. Because of this,
frustration
parents are often afraid to make a selection for fear that
today's new model may be obsolete tomorrow.
It is only natural that you will want to take
or wasted money when selecting an
advantage of new developments as your child's system
alternative communication device for
wears out and as new aids become available that meet
your nonspeaking child.
his needs more effectively. This means that an aid
selection is usually not final, because as your child's
The Institute of
needs change, he will both need and want a new one.
Logopedics
What is important is to know is when to stop
eliminates the
searching, reading, questioning, and when to make a
guesswork and
selection. Since there will always be new and more
frustration.
effective developments, care must be taken that waiting
Call today for a
for a better aid does not mean that your child is waiting
quality,
forever. His communication needs need to be met now.
comprehensive
evaluation considered by parents to be among the best
in the nation. The Institute staff recommends the most
Once I get my child this electronic aid, all his
effective communication system for your child
how to
(and my) communication problems will be
get it
and how to use it.
solved.
We match your child's abilities to the right device.
Call toll-free, 1-800-835-1043
Getting your child the communication aid is only
or 1-800-937-4644 today!
the first step. Training him to use the device in an
effective manner for conversation and selecting
messages to store in the aid that will help him adapt are
INSTITUTE OF LOGOPEDICS
also essential components.
2400 Jardine Drive
Wichita, Kansas 67219
26 EXCEPTIONAL PARENT / OCTOBER 1988
the MAMA Chair
Professionals now realize that storing
MULTIPLE APPLICATION, MULTIPLE ARTICULATION, SEATING SYSTEMS
groups of messages that relate to a
The quick, easy to operate positioning evaluation system
Featuring five point adjustment
particular situation is more effective
than storing single requests.
MAMA Baby and Youth Evaluation Chair
Position Adjustment
Videoswallow Studies
Videophonation Studies
For example, how many times have you seen a
Nasendoscopic Studies
Feeding Evaluations
communication aid with messages like "I want to go to
Wheelchair Adjustment
the bathroom," "I'd like a drink," and "I want to watch
television" stored in them? If that were the only type of
messages we could say, just think what conversation
would be like! Someone would ask you how you are,
and you'd only be able to respond with a request. More
likely, you would forget about the aid and answer with a
smile or some other means available to you.
Professionals now realize that storing groups of
MAMA Adult Evaluation Chair
messages that relate to a particular situation is more
Augmentative Communication Assessment
effective than storing single requests. For example, if
Position Adjustment
Wheelchair Fitting
you child wanted a drink, he might say, "Gee, I'm really
Feeding Evaluation
thirsty. A cold drink would be great right now." The
Call or write for information
person he is talking to might say, "How about some
and/or demonstration videotape
juice?" and the child would say, "OK." After a few sips,
MAMA SYSTEMS INC.
MAMA
4347 Silver Lake Road
the child might then say, "I'd love some more," and then
Oconomowoc, Wisconsin 53066
(414) 569-9188
"That's enough for now. Thanks." Storing messages
like these gives the child the opportunity to not only get
his needs met but to interact with others in a more
natural way.
When Your Child Needs To "Potty".
Thus, finding a professional knowledgeable in the
When Your Away From Home and
area of augmentative communication who can either
Nowhere Near a Restroom
train those working with your child or work directly
with him is part of having an electronic communication
aid that is successfully used and integrated with your
child's other means of communication.
For information on professionals, agencies and
regional support groups specializing in augmentative
POLEY
means of communication in your area, contact the
International Society for Augmentative and Alternative
Now you
can take your
Communication (ISAAC), P.O. Box 1762, Station R,
toddler any-
BUBBLE RESCHE!
where, knowing that those little
Toronto, Ontario M4G 4A3, Canada.
"emergencies" that come up can be taken
care of the spot!
New BUBBLE POTTY is an inflatable, convenient
fold-up "potty" that comes with sanitary liners for a
quick and easy alternative to public restrooms. Comes in a 5" X 6" pouch and
stores in your purse or tote bag. THE BUBBLE POTTY is made of heavy-duty
vinyl and inflates in seconds! What a relief to know that on the road, at the beach,
while shopping, camping, or driving across town in heavy traffic, any
potty emergencies can be handled instantly. Comes complete with six
liners and a carrying case, only $8.95 postpaid.
Full
Iris Fishman received her master's degree in speech and
B.J. Enterprises
language pathology from Hunter College in New York City.
31220 La Baya Drive, Suite 110-344E
Money Buarantee
Westlake Village, California 91362
She is an augmentative communication consultant for United
Cerebral Palsy in Bridgeport, Conn., and other agencies in the
YES! The BUBBLE POTTY sounds like a dream come true! Please rush my BUBBLE
POTTY today. I am enclosing my
check
or
money order for $8.95 each (postpaid).
New York metropolitan area. Iris is the author of Electronic
Please send to:
Communication Aids: Selection and Use, © 1987, a book for
Name
parents as well as professionals. It is available from College
Address
Hill Press, 4284 41st Street, San Diego, Calif. 92105, priced at
$17.50.
City
State
Zip
California residents please add sales tax.
Due to great demand, please allow 6-8 weeks delivery.
EXCEPTIONAL PARENT / OCTOBER 1988 27
Establishing
an Assistive Device
Lending
Library
How to improve
services in your
M
any parents are becoming more
many switches need to be tried, a large
aware of the benefits that assistive
rental fee will be spent that could have
devices and adapted switches can
been spent on purchasing suitable devices.
local library.
provide to enhance the quality of life for
Your local school, public, or
their children with severe disabilities.
rehabilitation facility library can help in
Assistive devices can be classified into nine
solving this problem by having a wide
categories: personal care aids; alarm
variety of switches on hand to test with
devices; communication aids; environ-
your child. We established an assistive
mental controls; mobility aids; recreation
device loan program in the spring of 1988
aids; educational aids; homemaking aids,
at the New Mexico Developmental
and vocational aids. These devices can be
Disabilities Library, which serves severely
used to give a child with disabilities greater
disabled persons throughout the state, as
independence and to allow the child to
well as providing informational services to
operate appliances and communicate in
rehabilitation professionals, families, and
ways not possible without these devices.
the general public in the state. This loan
The major difficulty in selecting the
service has proven to be a valuable
switches that work best for a child is having
addition to our library services for persons
access to a wide variety of switches that the
with severe disabilities.
child can try. The best professional
interdisciplinary assessments of what kinds
CHOOSING THE LIBRARY
of switches should be prescribed may not be
correct. Trial and error is often the only
Parents in most communities will first
way to select a switch that the child can
want to make their proposal to their local
easily use.
school or public libraries. Whether a parent
Parents who have tried to borrow
should first approach the local school or
devices from manufacturers on approval
public library depends on several factors.
know the problems this strategy entails.
If the child's school has strong
First, there is the long wait before items
administrative support for special
become available for trial use. Most
education programs, has an active network
companies, if they permit free trial loans at
of parents of students with disabilities, and
all, will only allow the loan of one device at
has a good resource center for special
a time. If a number of different devices
education materials administered by the
By
need to be tried, the time spent determining
library, the school library is the place to
Douglas Haynes
the best switch for the child can take a very
start. Public school libraries can get access
long time indeed. Second, although some
to the federal grant monies for educational
companies will rent switches for trial use, if
materials for students with disabilities.
28
EXCEPTIONAL PARENT/OCTOBER 1988
If, however, parents meet with a great
materials include audio visual
deal of resistance to such a program at the
hardware and software and regalia of
local school, the public library would be the
all kinds, including toys, puppets,
place to try. In this instance, the parent
games, functional teaching aids, and
would want to coordinate with the local
specialized sensory stimulation
chapters or organizations interested in the
materials.
welfare of persons with severe disabilities.
A proposal to initiate an assistive device
II. Statement of Need
loan program will carry much more
influence with the joint sponsorship of
Document the problem of assessment
every civic group possible, as well as the
in fitting the right device to the right person
support of your local political
by citing professional publications.
representatives. Also, if your community
Likewise, emphasize the fact that persons
has an active Friends of the Library group,
with severe disabilities are an under-served
it would definitely be helpful to include
population by most libraries.
them in the proposal process.
Obtain copies of the mission and goals
statements from the library and its
WRITING THE PROPOSAL
supervising departments. If it is the case
that the library is not fully meeting its
None of your "targeted" libraries will
mission statement in terms of providing
A proposal to
expect a master's thesis-level proposal, but
services to all people, particularly in
initiate an
they will expect solid information. The
alternative services to persons with special
possibility of a favorable response to your
needs, explain this lack of service as clearly
assistive device
proposal will be enhanced by footnoting
and logically as possible. An example is
loan program
and appending a selected bibliography. So,
quoted below:
will carry much
someone with university-level research and
writing skills should be recruited for this
A unique challenge in special
more influence
purpose. If you have access to a university
librarianship is the provision of services
with joint
library with a current special education
to severely disabled persons who
sponsorship.
collection, or access to any good resource
remain developmentally unable to read
center on information dealing with severe
for their entire lives. These persons are
disabilities, the task will be much easier. In
generally severely or profoundly
fact, having access to this information is
mentally retarded with multiple
quite essential to writing a good proposal.
physical disabilities.
It would even be worthwhile if one must
travel some distance to obtain these
resources.
Below is a descriptive outline of the
organization of such a proposal proven to
be successful.
I. Introduction
Define and describe what assistive
devices and adapted switches are. Explain
how they can be used by persons with
disabilities in their education, habilitation,
leisure, and daily living activities. The
following is an example:
Several kinds of nonprint media and
materials are used to support
educational, habilitational, and
recreational programs for individuals
with disabilities. These media and
Stacy uses a squeeze switch. Photo by Adaptive Aids, Inc.
EXCEPTIONAL PARENT/OCTOBER 1988 29
FREESTYLE
Computer Keyboard Program
Aid to Special Education
EASY TO USE!
The Freestyle Program is designed specifically for the
physically challenged. With basic pointing skills,
challenged students can respond to teacher instructions
on their Freestyle Keyboard.
Important: Can be mounted on vertical,
horizontal, or overhead surfaces; runs programs
such as Lotus 123, Word Star, Symphony, etc.
Photo: Adaptive Aids, Inc.
The Freestyle Keyboard System is designed to be used
with IBM PC, XT, AT, or compatible equipment.
Brandon uses a squeeze switch to operate the radio and clock.
Great Teaching Aid
Cost Effective
III. How the Library Can Meet This Need
Varied Keyboard Sizes
Easy to Install
Show how an assistive device loan program can
Satisfaction Guaranteed
specifically fulfill the library's mission statement by
Fast Delivery
providing alternative services to people with disabilities.
Volume Discounts
Examples of this improved access could be by: (1)
allowing persons to determine which device will permit
IN TOUCH
them to operate a reading light so they can be more
independent in choosing their reading times; (2)
1407 Foothill Blvd., #19, La Verne, CA 91750
allowing people with disabilities to operate audio visual
714-593-0490
equipment SO they can more fully participate in the
library's audio visual circulation programs; (3) giving
A rural community for children
persons who use wheelchairs more mobility in being
with mental retardation
able to visit the library, attend library functions, and
browse through library collections.
and other handicaps
Emphasize the fact that this loan program would
only be to facilitate the choosing of the right switch for
Beautiful homes with permanent house-
the right persons; so that the device could then be
parent families, small groups, no shift workers,
obtained by the person. List and describe similar library
natural foods, live-in staff.
programs established elsewhere.
Waldorf Education curriculum emphasiz-
ing creativity, with academic and practical
IV. Suggested Funding Sources
skills for mind, heart, body.
Curative approach toward individual needs.
If your library is well-funded to the point that they
Wide variety of therapeutic treatments,
can establish and maintain such a program with their
resident doctor.
present funding, this case will be the exception.
Diverse social and recreational opportun-
For any school, public, or rehabilitation facility
ities, custom-built homes, community cen-
library that qualifies for an Internal Revenue Service
ter, school building, craftshops, 60 acres
501(c)(3) exemption, private foundation grants should be
rolling woodland.
applied for to begin this program. Even exceptional
International affiliates, founded 1939, nation-
parents organizations may qualify for these monies. If a
ally recognized.
library does not already have this exemption, inquiries
should first be made to library administrators as to
BEAVER RUN
eligibility, since some "state instrumentalities" do not
CHILDREN'S VILLAGE
qualify. To obtain an application for the exemption,
contact the regional IRS center.
FOR INFORMATION CONTACT:
The second step on the road to obtaining private
Camphill Special Schools, Inc.
foundation monies is to identify those foundations that
Glenmoore, PA 19343
award grants for programs for persons with disabilities
(215) 469-9236
30 EXCEPTIONAL PARENT / OCTOBER 1988
"A beacon of hope"
Your local school district has access to a
Emily Perl Kingsley
don't accept me
as I am
writer for Sesame Street
variety of funds through state-
HELPING
administered federal monies for special
"RETARDED" PEOPLE
DON'T ACCEPT ME
education materials.
TO
AS I AM
EXCEL
Helping "Retarded"
People to Excel
in your area. Much of this information can be found in
Reuven Feuerstein,
publications such as the Foundations Directory.
Yaacov Rand, and
Reuven Feuerstein
Comprehensive information, however, can only be
Yaacov Rand
John E. Rynders
John E. Rynders
obtained at larger libraries known as "foundation
depositories." A reference librarian in your area can tell
"This book gives not only hope but what may be even
you where the nearest foundation depository library is.
more important-direction and guidance.
"
Foundations will send you, upon request, their annual
H. Carl Haywood, Vanderbilt University
reports describing their individual procedures on
"Insightful, inspirational, and instructive for laymen
applying for grants. Although this process is time-
and professionals alike. Must reading."
consuming, it can be very rewarding in terms of the
Abraham J. Tannenbaum, Columbia University
monies received to begin an adapted device loan
These three world-renowned psychologists have originated a
program at your local library.
revolutionary new method for raising the I.Q.'s of individuals
with mental retardation and Down syndrome. This is the only
Your local school district has access to a variety of
book to set forth their steps of "mediated learning" and how
funds through state-administered federal monies for
these steps may be applied to children and adults.
special education materials. Whether any of these
monies are shared with the school library or resource
PLENUM PUBLISHING CORPORATION
center depends on state and local school board policies.
233 Spring Street
New York, NY 10013-1578
Plenum LANGUAGE
A bill was recently introduced in Congress to provide
1-800-221-9369 (212) 620-8421
PUBLISHING CORPORATION
monies to states for assistive device programs for special
education students, but, even if the bill is passed, it will
be some time before programs are implemented.
TURTLE BOOKS
Your child's rehabilitation facility library may
qualify for Library Services and Construction Act Title I
written for the child
TURTLE
BOOKS
monies, administered by your state library. There are
with disabilities!
"special need" provisions beyond the formula
(ages 3-7)
allocations of this grant, which can be used to fund such
a loan program. In fact, this is the source of funding
QTY
Danny and the Merry-Go-Round
UNIT
obtained to begin this program at the New Mexico
Danny feels better about himself when a boring
PRICE
day of watching turns into an adventure.
Developmental Disabilities Library.
0-944727-00-X
$4.95
If you decide to approach your public library for
Andy Finds a Turtle
this proposal, one source of partial funding may be your
Andy becomes a hero and learns something about
local Friends of the Library group. These groups,
himself on his search for a turtle.
particularly in larger cities, have funds available for
0-944727-02-6
$4.95
specific programs permitted in their bylaws.
How About A Hug
A little girl with Down's Syndrome shares her
V. Other Advantages for the Library
triumphs in this warm book of hugs.
0-944727-01-8
$5.95
Libraries live by user statistics. These statistics are
SHIPPING & HANDLING CHARGES: $2.00
important in budget justifications and personnel
SHIP TO:
PA Residents Add 6% tax
allocation. You can point out how this program can
Name
increase user statistics, particularly for under-served
populations.
Address
The fact is that public relations programs have
City
become very important for libraries. Show how this
State
Zip
assistive device service can enhance the library's public
Day Telephone (if question about your order)
relations program. Point out how the use of press
MAIL ORDER TO: JASON & NORDIC PUBLISHERS
releases, invitations to television stations, and the
BOX 1123, 402 HOWELL RD.
EXTON, PA 19341
EXCEPTIONAL PARENT / OCTOBER 1988 31
EXCLUSIVE RESIDENTIAL SCHOOL
FOR THE SEVERELY RETARDED
& MULTIPLY HANDICAPPED
UNIDIAL ER
Private, Non-Profit
Birth to 22 years
Unusual Syndromes (including Retts)
Intense, round-the-clock trained stimulation
Children make substantial progress
24 hour medical services
Extensive physical therapy
Monthly orthopedic clinics
Feeding programs
Augmentative communication
Parental involvement welcome
One basic single switch can access the telephone, up to four power
modules and a television converter. Photo by TASH, Inc.
Community-based Victorian homes
Year round
organization of workshops and seminars on these
devices can enhance the library's image as a concerned
Contact: Gail Charpentier, Dir.
community service provider.
BERKSHIRE CHILDREN'S
COMMUNITY
SUBMITTING YOUR PROPOSAL
41 Taconic Ave.
Great Barrington, MA 01230
Your strategy in submitting your proposal will vary
(413) 528-2523.
for the school, public, and rehabilitation facility library.
Your first contact, even before writing the proposal,
should be in person with the highest ranking librarian
with whom you can get an appointment. Let the
librarian know of your plan to make this proposal and
ask for input. You might even get an offer of research
equipment
sh
assistance in writing the proposal. In fact, if you are
lucky enough to encounter a progressive and dynamic
P.O. BOX 33, BEDFORD, MA 01730
librarian who has a special interest in serving the special
needs of people with disabilities, the battle may be half
won at this first meeting. The astute librarian will
We like
realize the many advantages in such a loan program and
making
may volunteer to spearhead the project and follow it
through with library personnel. If so, your work is
kids happy.
virtually done. All you need to do is make periodic con-
tact to check on the progress of the program. Unfortun-
ately, few will have such an offer. This article is to help
Send for free
the majority of you who will have to follow through
catalog of
adaptive
with the entire project.
equipment.
Physicball
For the school library, after your initial meeting with
the head librarian, you may also want to meet with a
school administrator, school board member, and your
child's teachers. These people may also adopt your
suggestion and initiate the proposal for you. If you need
to follow through yourself with the official written
GymastikBall
GymnastikBall
proposal, contact your parents' network to recruit
Physicial
assistants. Research and write the proposal according to
the outline presented above.
Send copies of the finished proposal simultaneously
to: (1) the local school principal, administrators, and
special education teachers; (2) the school librarian; (3)
32 EXCEPTIONAL PARENT / OCTOBER 1988
of the Friends of the Library group. With their input,
It can also be helpful to send letters to
and in coordination with as many interested civic groups
the editors of local newspapers
and other allies as you can muster, prepare your
proposal. If your city has a university with a special
outlining the project you are proposing.
education department, include them in the process.
Be persistent. If you follow these
Mail the proposal simultaneously to: (1) your public
suggestions closely, success is probable.
library administrators; (2) municipal or county
administrators, including the mayor or county
commissioner; (3) interested civic groups; (4) other local
each school board member, including the
political representatives; (5) advocacy groups for persons
superintendent; (4) local political representatives. In a
with disabilities.
cover letter sent with your proposal, ask for a written
It can also be helpful to send letters to the editors of
response and mention that you will be making follow-
local newspapers outlining the project you are
up contact to check on the progress of the proposal.
proposing, co-signed by as many influential persons as
After a reasonable amount of time, make your follow-up
possible. Make your follow-up contacts after a
contacts. If you are turned down, or it seems you are
reasonable period of time. Be persistent. If you follow
being put off, you may want to contact your state
these suggestions closely, success is probable.
Department of Education. Sometimes, dealing with
state bureaucracy may become a lengthy process. If you
fail with your school library, dust yourself off, make a
note of the next school board election, gather your
forces, and make an appointment with your public
library administrator.
David Haynes obtained his master's degree in library science
After you meet with your public library
from the University of Texas at Austin. Until recently, he was
the chief librarian for client and professional services at the
administrator, you may also want to meet with
New Mexico Developmental Disabilities Library. He has
administrators in the municipal or county governmental
accepted a position at the R.F.K. Library at the University of
agencies that oversee the library, as well as the president
Guam and is now residing in Mangilao, Guam.
Elementary and Secondary
Coletta School
Pre-Vocational and
Special Education
Vocational Training
JEFFERSON WISCONSIN
St. Coletta School, founded in 1904, offers
Additional services enhancing the academic program include:
a year-around academic residential program
Counseling - personal and vocational
for mentally retarded children and
Socialization skills
adults (ages 6-25).
Personal living skills
Transitional home living
Speech and language development
Music and art
Adaptive physical education and swimming
Other St. Coletta programs include habili-
Physical and occupational therapy
tation/vocational training, adult worker, Alverno
for further information contact:
unskilled nursing care home and Coletta-James
Sister Elaine Weber, Administrator
transitional group home.
St. Coletta School
Route 1, Box 43
Jefferson, Wisconsin 53549
Telephone (414) 674-4330
EXCEPTIONAL PARENT / OCTOBER 1988
33
RESOURCE SECTION
BECOME
you assess the potential of using
technology at home given your
AN INFORMED
child's needs. The teacher may also
be able to guide you in selecting
TECHNOLOGY
CEC
appropriate software for your child.
Some districts allow parents to
borrow computer equipment for
CONSUMER
home use.
®
Another local resource is the
computer users' group. User
groups can provide valuable
by Susan Elting, Nancy Meidenbauer and Nell Bailey
information about the use of
software and hardware. Technical
Today a nonverbal child speaks
need additional support and
questions can be answered by
with the help of an electronic
services to locate and use
members who are experienced with
communication aid and a learning
technology to their advantage.
both. Check with your local
disabled student masters math facts
computer dealer or telephone
using a computer game. Computers
WHERE TO BEGIN
directory to find a group in your
and other technology have
area. Computer manufacturers may
expanded and enriched our lives
If you are interested in using
also know of a local user group.
and given our children options not
computers or assistive technology
The Apple Alliance, a national
imagined a decade ago.
with your child but do not know
network of community-based
However with these technology
where to begin, start by reading
resource centers, now has centers
options come many decisions for the
general information on the subject.
located throughout the country.
consumer, such as deciding if and
There are a number of books that
Parents are welcome to come in and
when to use a computer and decid-
have been published on technology.
see demonstrations of different
ing what hardware and software to
Some are classics such as
hardware and software and receive
purchase. Using computers and
Microcomputer Resource Book For
assistance on using technology with
assistive devices can prove to be
Special Education by D. Hagen.
their child.
expensive both in money and time
New releases offer a host of
invested. Technology use is forcing
current information. Two of these
SPECIFIC INFORMATION
us to become informed consumers,
are Making an Exceptional Difference:
critical of the limitations of technol-
Enhancing the Impact of
If you are looking for
ogy and aware of alternate possibil-
Microcomputer Technology by H.
information about using technology
ities for achieving a specific goal.
Pressman and Breaking Barriers:
with a child with a specific
Fortunately, there is a wealth of
How Children and Adults with Severe
disability, try contacting the local
resources that parents and teachers
Handicaps can Access the World
chapter of the disability
can access. At the Center for Special
Through Simple Technology by L.
organization serving that
Education Technology, we collect
Levin and L. Scherfenberg.
population. For example, if your
data on local, state, and national
child has a learning disability,
resources and have noticed a
SCHOOL AND COMMUNITY
contact the local Association for
dramatic increase in the number of
SERVICES
Children and Adults with Learning
technology resources over the last
Disabilities. (ACLD).
six years.
Print information alone may
Other organizations like the
The Center, a national
not be enough to help you with
Easter Seal Societies and the United
information center funded by the
your technology decisions. You
Cerebral Palsy Association often
federal government and housed at
may need to contact agencies and
provide direct services to families
the Council for Exceptional
organizations that provide special
and to local schools in the use of
Children, provides information on
services. To do this, first become
technology.
the use of technology for children
aware of resources that exist in your
with disabilities to teachers,
community. Local resources can
SOFTWARE AND HARDWARE
administrators, parents, researchers,
supply personalized assistance to fit
INFORMATION
and others. In our work with these
technology to your child.
groups, we have found that
Probably the most important
Your local public library can be
consumers first need to gather some
community resource is the school.
a gold mine for information on
basic information and then often
Your child's teacher can often help
computer hardware and software.
34 EXCEPTIONAL PARENT /OCTOBER 1988
RESOURCE SECTION
Some libraries set up mini computer
Elizabethtown, Pa., to serve the
labs for the public to use.
entire state. In California, there is
A number of databases provide
an assistive device center at
information on software and
California State University in
hardware products. Closing the
Sacramento, Calif. Expect to see
Gap, LINC, and the TRACE Center
more of these centers as interest in
are just three of the groups that offer
assistive uses of technology grows.
TIM
lists or directories of computer
products. There is a list of
FUNDING SOURCES
publications, clearinghouses and
CATAND THE
vendors of computer and
Finding funding for technology
communication products in the
devices requires an individualized
BIG
RED
HAT
Technology Resource Directory
approach. To begin your search,
beginning on page 36.
check out resources that are
Another source for software
available to you locally, such as the
Are you looking for a colorful,
information is your local computer
Lions or Kiwanis Clubs, and
animated reading
store. National chains such as B.
religious organizations.
comprehension program at a
Dalton and Egghead carry a good
Nationally, the Easter Seal
beginning reading level? Here
selection of instructional software
Society in connection with IBM has
is an adorable fat cat, a boy
for all ages. Some software
an assistance project that allows
named Tim, and stories that
companies cater to the home
eligible persons with disabilities to
will keep the interest of your
market. Scholastic and Broderbund
purchase discounted computer
beginning readers!
issue home market catalogs so you
systems. Check with the National
Stressed are consonant-vowel-
can shop by mail.
Easter Seal Society (2023 West
consonant words.
Some parents may be able to
Ogden Avenue, Chicago, Ill. 60012)
Comprehension skills cover
contact special software preview
for details.
main idea, detail, sequencing,
centers, operated by school districts
Additional funding sources
and word meaning.
or universities. Since these preview
may soon emerge with new federal
Recordkeeping is included. You
centers cater to teachers, call first to
legislation and more national
may use the ECHO speech
make sure parents are welcome.
interest in technology by insurance
synthesizer to give this
Hardware information may be
companies.
program a voice of its own.
harder to find locally. You may
To really make technology
need to contact the equipment
work for you and your child, it is
vendor directly. Prentke Romich,
important to become an informed
ComputAbility, and Don Johnston
consumer. Use the abundant
are three vendors that provide
resources available: read about
The cat is fat.
services to handicapped children by
technology, talk to others who use
tailoring technology devices to fit
it, and try out various technology
Press <RETURN>
individual needs.
options before you buy.
ASSISTIVE DEVICES
For the Apple II family of computers
Center for Special Education
Write for FREE catalog
Local hospitals and community
Technology staff members Susan
rehabilitation or vocational centers
Elting, Nancy Meidenbauer and
may be active in designing and
Nell Bailey contributed to this
fitting assistive devices to
article for Exceptional Parent.
complement your child's
Center for Special Education
Hartley™ Courseware, Inc.
capabilities.
Technology, 1920 Association Ave,
Dimondale, MI 48821
At the state level, some states
Reston, Va. 22091: (800) 873-TALK
1-800-247-1380
have established assistive device
or (800) 345-TECH
(In MI) 517-646-6458
centers to provide information
about particular devices. For
example, Pennsylvania has located
an assistive device center at the
Elizabethtown Hospital and
Rehabilitation Center in
EXCEPTIONAL PARENT / OCTOBER 1988 35
RESOURCE SECTION
TECHNOLOGY RESOURCE DIRECTORY
This Technology Resource Directory is included as a
The CATALYST
guide for all our readers. It contains a listing of Information
W. Center for
Clearinghouses, Publications and a directory of Commercial
Microcomputers in Special
Vendors that lists companies (vendors) that market computer
Education
hardware, software, adaptive aids and communication devices
1259 El Camino Real,
for people with disabilities. The symbols following the name
Suite 275
and address of each company summarize the information we
Menlo Park, Calif. 94025
(415) 326-6997
have obtained from each company. The symbols indicate 1) the
types of products available; and 2) the types of disabilities
Closing the Gap
served by the products. For specific details, contact the vendor
P.O. Box 68
and say you read about them in the EXCEPTIONAL
Henderson, Minn. 56044
PARENT Technology Resource Directory.
(612) 248-3294
Communication Outlook
INFORMATION
CompuServe
MS 43-F
Artificial Language
CLEARINGHOUSES
P.O. Box 20212
Cupertino, Calif. 95014
Laboratory
5000 Arlington Centre Blvd.
(408) 974-7910
405 Computer Center
ABLEDATA
Columbus, Ohio 43220
Michigan State University
National Rehabilitation
(614) 457-8600
Special Education Software
East Lansing, Mich. 48824
Information Center
(800) 818-8199
Center
(517) 353-0870
8455 Colesville Road
LINC Resources, Inc.
Suite 935
DEAFNET
4820 Indianola Ave.
Computer Disability News
Silver Spring, Md. 20910
SRI International
Columbus, Ohio 43214
National Easter Seal Society
(301) 588-9284
333 Ravenswood Ave.
(614) 885-5599
2023 W. Ogden Ave.
(800) 346-2742
Menlo Park, Calif. 94025
Chicago, Ill. 60612
(415) 326-6200
(312) 243-8400
SpecialNet
American Foundation for
(415) 859-4771
National Association of State
the Blind
Directors of Special
Computing Teacher
15 West 16th St.
The International Council for
ERIC
Education
New York, N.Y. 10011
Education Research
2021 K St. NW, Suite 315
Computers in Education
(212) 620-2143
Information Center
Washington, D.C. 20006
University of Oregon
4350 East West Highway,
(202) 296-1800
1787 Agate St.
Center for Special
Suite 1100
Eugene, Ore. 97403-1923
Education Technology
Bethesda, Md. 20814
Technical Resource Center
(503) 686-4414
Council for
(301) 656-9723
525 Eleventh Ave. S.W.,
COPH Bulletin
Exceptional Children
Suite 100
1920 Association Dr.
National Clearinghouse on
Calgary, Alberta
2030 Irving Park Road
Reston, Va. 22091
Rehabilitation Training
Canada T2R 0C9
Chicago, III. 60618
(800) 345-TECH
Material
(312) 866-8195
(800) 873-TALK
Oklahoma State University
Trace Research and
115 Old USDA Bldg.
Development Center
Education Computer News
Committee on Personal
Stillwater, Okla. 74078
Room S-151 Waisman Center
c/o Business Publishers
Computers and the
(405) 744-7650
1500 Highland Ave.
951 Pershing Drive
Handicapped (COPH-2)
Madison, Wis. 53705
Silver Spring, Md. 20910
2030 Irving Park Road
National Support Center for
(608) 262-6966
(301) 587-6300
Chicago, Ill. 60618
Persons with Disabilities
(312) 866-8195
IBM Educational Systems
PUBLICATIONS
Journal of Special
25 Windy Ridge Parkway
Education Technology
CompuHelp
Marietta, Ga. 30067
Augmentative and
Special Education Dept.
International Blind Users
(800) IBM-2133
Alternative
Vanderbilt University
Box 328
Group, (IBUG)
Communication Journal
P.O. Box 1352
c/o Williams & Wilkins
Nashville, Tenn. 37203
Office of Special Education
(615) 322-8150
Roseville, Calif. 95661-1352
Program
428 E. Preston St.
(916) 786-3923 (Modem)
Apple Computer Inc.
Baltimore, Md. 21202
(916) 645-8036 (Voice)
19925 Stevens Creek Blvd.
(301) 528-4000
36 EXCEPTIONAL PARENT / OCTOBER 1988
RESOURCE SECTION
COMMERCIAL VENDORS
ACTT (Activating Children
Through Technology) [A]
Prentke Romich Company
Key to Symbols U ed in the
Project ACTT
introduces
directory:
27 Horrabin Hall
W. Illinois University
Vendor Products
Macomb, Ill. 61455
IntroTalker
AA = Adaptive A
(309) 298-1014
CA = Communicat Aid
S, CA, LD, IE, PH, SI,
Introductory speech output communication aid
H = Hardware
S = Software
ADAMLAB [A]
33500 Van Born Road
Disability Codes
Wayne, Mich. 48184
HI = Hearing Impaired
(313) 467-1415
LD = Learning Disabled
CA, H, LD, IE, PH, SI
IE = Intellectual or
Emotional Disability
Adaptive Peripherals [A]
PH = Physical Disability
4529 Bagley Ave. N.
SI
= Speech Impairment
Seattle, Wash. 98103
VI
= Visual Impairment
(206) 633-2610
"Hi! My name
"Hi! My name
is Carol.
AA, H, S, LD, IE, PH, VI
is Carol.
What's yours?"
What's yours?"
Computer Compatability
A
= Apple
Advanced Ideas, Inc.
IBM = IBM
[A, IBM, Ω, RS, Σ1
as
= Commodore
2902 San Pablo Ave.
RS
= Tandy
Berkeley, Calif. 94702
à
= Atari
(415) 526-9100
Σ
= Other systems
S, HI, LD, IE, SI
(Franklin, Lazer, Compaq,
Toshiba, PS, PS2-30, Vic 20,
American Educational
System II, DEC Rainbow)
Computer, Inc.
[A, IBM, Ω, RS, å]
Natural speech quality
For specific details, contact
7506 N. Broadway Extension,
Allows sequencing (limited form of
the vendor and say you read
Suite 505
Minspeakᵀ)
about them in the
Oklahoma City, Okla. 73116
EXCEPTIONAL PARENT
(800) 222-2811
Small size (13" X 7" X 3") & weight (5 lbs.)
Technology Resource
S, HI, LD, IE, SI, VI
Low cost ($595)
Directory.
Trade-in policy for higher performance PRC
American Printing House for
Touch Talker
COMPUTER PRODUCTS
the Blind [A, IBM]
P.O. Box 6085
Caution: Personal achievement at risk!
AbleNet [A]
Louisville, Ky. 40206
Speech quality and cost do not generally affect
360 Hoover St., N.E.
(502) 895-2405
personal achievement. Please do not purchase
Minneapolis, Minn. 55413
H, S, PH, VI
this device for individual use on the basis of
(612) 331-5958
either of these factors. IntroTalker is intended as
AA, H, IE, PH
Amidon Publications [A ]
an introductory device, with most users quickly
1966 Benson Ave.
moving up to a higher performance Minspeak
Abracadata, Ltd. [A, IBM]
St. Paul, Minn. 55116
P.O. Box 2440
(612) 690-2401
system.
Eugene, Ore. 97402
(800) 328-6502
Contact your PRC Certified
(503) 342-3030
S, HI, LD, IE, SI
Consultant for further details.
S, HI, LD, IE, PH, SI
Animated Voice
Access Unlimited-SPEECH
[IBM, RS, Σ1
PRC
Prentke Romich Company
Enterprises [A, IBM]
P.O. Box 819
for higher personal achievement.
9039 Katy Freeway,
San Marcos, Calif. 92069
1022 Heyl Road Wooster, Ohio 44691
CAMA
Suite 414
(619) 744-8190
In Ohio, Call Collect (216) 262-1984
Others, Call Toll-Free 1-800-642-8255
Houston, Texas 77024
(800) 942-3699
(713) 461-1666
CA, H, HI LD, IE, SI
Are You a Member of ISAAC? The purpose of ISAAC (International
S, HI, LD, IE, SI, VI
Society for Augmentative and Alternative Communication) is to
advance the transdisciplinary field of augmentative and alternative
communication, facilitate information exchange, and to focus attention
on work in the field. For more information, write to: ISAAC, P.O. Box
1762, Station R, Toronto, Ontario, Canada M4G 4A3.
WP-32C
EXCEPTIONAL PARENT / OCTOBER 1988 37
Life isn't fair. But
ACI
© 1988 Apple Computer, Inc. Apple and the Apple logo are registered trademarks of, and The power to be your best is a trademark of Apple Computer, Inc.
wereworkingonit.
It's not easy for a child with a disability to fit in.
However, at Apple Computer, we'r joining forces with
educators and parents to change that.
Because through the power of a computer, a child who
can't speak can carry on a conversation.
A child who can't hold a pencil can write a poem.
And a child with a learning problem can unlock the true
potential within.
But most important, the personal computer gives a child
the means to banish the stereotypes that once would have held
him or her back.
One of the greatest support systems for integrating these
children is a growing network of community resource centers
called the National Special Education Alliance.
The NSEA was founded jointly by Apple's Office of Special
Education and the disabled community. Its staff members work
with educators, parents and disabled individuals, linking them
with enabling technology.
And because the NSEA is a grassroots network, it can
share ideas with experts and peers
from all over the nation.
For more details, you can call
Apple at 800-732-3131, ext. 275.
Then we can work
together to give more
children what they
really deserve:
A fair chance.
The power to be your best.™
RESOURCE SECTION
Apple Computer, Inc. [A]
(415) 962-8946
A child's
Special Education Division
S, HI, LD, IE, PH, SI, VI
19925 Stevens Creek Blvd.
potential deserves
MS 43-F
Communication Skill
Cupertino, Calif 95014
Builders [A]
to be developed
(800) 732-3131 Ext. 275
P.O. Box 42050
H, HI, IE, LD,
Tucson, Ariz. 85733
MD, PH, SI, VI
(602) 323-7500
Marblesoft Early
Learning programs
S, HI, LD, IE, SI
were developed by
Aquarius Instructional
experienced special
education teachers
[A, IBM, RS ]
Compu-Tations, Inc. [A ]
who understand that
P.O. Box 128
P.O. Box 502
no two children
Indian Rocks Beach,
Troy, Mich. 48099
are alike.
Fla. 34635
(313) 689-5059
We've developed a
(813) 595-7890
S, HI, LD, IE, PH, SI
series of programs with a wide range of skill levels and options
(800) 338-2644
for pre-school, early elementary and learning disabled stu-
dents. These programs teach and reinforce pre-reading, basic
S, HI, LD, IE, SI
ComputAbility Corporation
math, sequencing, pattern recognition and money skills.
[A, IBM]
Program options include: single switch input, speech output,
Artic Technologies
101 Route 46 E.
large keyboard/power pad overlays and Touch Window access.
[A, IBM, Σ ]
Pine Brook, N.J. 07058
55 Park St., Suite 2
(201) 882-0171
At Marblesoft, we believe that once children start learning they
shouldn't have to stop.
Troy, Mich. 48083
(800) 345-4076
(313) 588-7370
H, S, LD, IE, PH
For more information, write or call:
H, S, LD, PH, SI, VI
Computer Aids Corporation
MARBLESOFT
Arts Computer Products, Inc.
[A, IBM]
[ IBM, RS, Σ ]
21805 Zumbrota N.E. Cedar, MN 55011
124 W. Washington Blvd.,
612-434-3704
145 Tremont St., Suite 407
Suite 220
Boston, Mass. 02111
Fort Wayne, Ind. 46802
Programs compatible with Apple systems.
(617) 482-8248
(219) 422-2424
S, H, VI
(800) 647-8255
S, VI
THE VOICETTE AMPLIFIER
Artsci, Inc. [ A, Σ ]
5547 Satsuma Ave.
Computer Conversations
so small voices can speak up and join in!
N. Hollywood, Calif. 91601
[IBM, RS, Σ1
(818) 985-2922
6927 Worthington Road
For School, Home,
S, HI, LD, IE, SI
Alexandria, Ohio 43001
Car, Special Events
(614) 924-2885
Great for students - and
Asahel, Inc. [IBM]
(614) 924-3325
teachers, too - and for
117 Olsen St. N.E.
S, HI, LD, IE, SI, VI
anyone else, (weak voice
Pullman, Wash. 99163
or not) for classes,
field trips, meetings,
(509) 334-2226
Computers to Help
programs, tours.
H, S, PH
People, Inc. [A]
1221 W. Johnson St.
ASIEP Education Co.
Madison, Wis. 53715
No More Shouting or Voice Strain
[A, IBM]
(608) 257-5917
Adjustable volume
Talk to 1 person or 100
P.O. Box 12147
S, HI, LD, IE, PH, SI, VI
CAMA
Weighs only 2 lbs.
Portland, Ore. 97212
Rechargeable battery
(503) 236-1317
Conover Company [A, IBM]
H, S, IE, LD, HI
5684 Shurbert Road
OUR OTHER PRODUCTS:
P.O. Box 155
we sell The
Rand Voice Amplifier (pocket size)
Boston Educational
Artificial larynges for trach
Omro, Wis. 54963
patients and laryngectomees
Computing, Inc. [Ω]
H, S, IE, LD, PH
Special Switches
with a high quality
78 Dartmouth St.
Stoma covers - also ideal for
good for short term
voice -
protecting clothing from
Boston, Mass. 02116
Cross Educational Software
use and evaluation.
drooling
(617) 536-5116
[A, IBM, Ω ]
Shower collars to protect
sensitive trach areas
S, HI, LD, IE, SI
504 E. Kentucky Ave.
P.O. Box 1536
FOR FURTHER INFORMATION CALL OR WRITE:
Claris Corp. [A]
Ruston, La. 71270
440 Clyde Ave.
(318) 255-8921
8688 TYLER BOULEVARD
uminaud
Mountainview, Calif. 94043
S, HI, LD, IE, SI, VI
MENTOR, OHIO 44060 (216) 255-9082
INC.
40 EXCEPTIONAL PARENT / OCTOBER 1988
RESOURCE SECTION
Curriculum Associates, Inc.
Dunamis, Inc.
[A, IBM, RS ]
[A, IBM, Ω, à, Σ ]
If you can move your head
5 Esquire Road
3620 Highway 317
North Billerica, Mass. 01862
Swanee, Ga. 30174
If your hands are paralyzed but you have good head
(617) 667-8000
(404) 932-0485
control, you can now operate the Apple Macintoshᵀ.
S, HI, LD, IE, SI
H, S, HI, LD, IE, PH, SI
HeadMaster from Personics is an adaptive device which
replaces the keyboard and Apple's famous "mouse."
DADA [ IBM, Σ ]
DU-IT Control Systems
HeadMaster uses patented technology developed by
1076 Bathurst St.,
Group, Inc. [A, IBM]
Personics for typing and moving the cursor with only your
Suite 202
8765 Township Road, 513
head. No mouth stick. No mouse. No keyboard. With
Toronto, Ontario
Shreve, Ohio 44676-9421
HeadMaster, extraordinary people can do ordinary things -
Canada M5R 3G9
(216) 567-2906
like word processing, desktop publishing, graphics, video
(416) 533-4494
H,S, PH
games, and accounting. Even control lights and appliances
in the home.
CA, S, H, PH, SI
Earthware Computer
Dataflo Computer Services,
Services[A]
you can move your world.
Inc. [A, IBM]
P.O. Box 30039
HC32 Box 1
Eugene, Ore. 97403
You can evaluate HeadMaster for yourself for 30 days at
Enfield, N.H. 03748
no risk. Call us for more information at 800-445-3311,
(503) 344-3383
in MA call 800-447-1196. Or write to us, we welcome all
(603) 448-2223
S, HI, IE,PH, SI
inquiries. HeadMaster is available for $995. If you want to
S, HI, LD, IE, SI, VI
work with the Macintosh II or SE an ADB Adapter is
EBSCO Curriculum
required, for an additional charge of $135.00.
Davidson & Associates, Inc.
Materials [A, IBM ]
[A, IBM, Ω, à, Σ ]
Box 1943
3135 Kashiwa St.
HeadMaster from Personics - Access to the Apple
Birmingham, Ala. 35201
Torrance, Calif. 90505
(205) 991-6600 Ext. 208
Macintosh for the physically disabled.
(213) 534-4070
S, HI, LD, IE, SI
Personics Corporation
S, HI, LD, IE, SI
2352 Main Street
Educational Activities, Inc.
Concord, MA 01742
Didatech Software, LTD
[A, IBM, Ω, RS, å]
(617)897-1575
[A, Ω Ω]
P.O. Box 392
3812 William St.
Freeport, N.Y. 11520
Burnaby B.C.,
(516) 223-4666
Canada V5C 3H9
S, LD
(604) 299-4435
Cerebral
S, HI, LD, IE, SI
Educational Audiology
Programs, Inc. [A]
Digital Equipment
1077 S. Gilpin St.
Corporation [Σ]
Denver, Colo. 80209
Palsy
146 Main St.
(303) 777-0740
Maynard, Mass. 01754
S, CA, HI, SI
At Children's Seashore House, children with
(617) 493-3113 (in Mass.)
cerebral palsy benefit from a comprehensive
(800) 832-6277
Educational Electronic
program of evaluation and treatment that
H, LD, SI, VI
Technologies [A ]
includes:
1088 Wantagh Ave.
assessment of musculoskeletal, develop-
DLM Teaching Resources
Wantagh, N.Y. 11793
mental, nutritional, and psycho-social needs
[A, IBM, Ω, RS, à ]
(516) 221-4173 (in N.Y.)
diagnosis of communications and oral motor
One DLM Park
(800) 4-EET-USA
disorders
Allen, Texas 75002
S, HI, LD, IE, PH, SI
evaluation for orthotic and adaptive equip-
(214) 248-6300 (in Texas)
ment
(800) 527-5030
EKEG Electronics Co., Ltd.
ongoing counseling and support.
S, HI, LD, IE, SI
[A, IBM, Σ
For information about our special program
P.O. Box 46199, Sta. G
for children with cerebral palsy, call us.
Don Johnston
Vancouver, B.C.
Developmental Equip. [A ]
Canada V6R 4G5
1000 N. Rand Road
(604) 273-4358
Bldg. 115
H, IE, PH, VI, LD, CA, AA
Wauconda, Ill. 60084
Children's
(312) 438-3476
Seashore House
H, S, HI, LD, IE, PH, SI, VI
A Regional Hospital for Specialized Care and Rehabilitation
Atlantic City, New Jersey
Philadelphia, Pennsylvania
609-345-5191
215-596-9103
EXCEPTIONAL PARENT / OCTOBER 1988 41
RESOURCE SECTION
A Closet Full Of Switches
Electronic Courseware
Hartley Courseware, Inc.
In One Little Box
Systems, Inc. [A, IBM, Ω Ω]
[A, IBM, Ω]
1210 Lancaster Drive
P.O. Box 419
Champaign, Ill. 61821
Dimondale, Mich. 48821
The Asaflex single input switch is designed to meet
(217) 359-7099
(800) 247- 1380
the varying needs of many physically limited in-
S, HI, LD, IE, SI
S, HI, LD, IE, PH, SI, VI
dividuals.
Enabling Technologies Co.
Houghton Mifflin
FLEXIBLE: Operates single
[A, IBM]
Educational Software
switched communication
3102 S.E. Jay St.
Division [A ]
aids, computers, toys, etc.
Stuart, Fla. 34997
Mt. Support Road
(305) 283-4817
Lebanon, N.H. 03766
VERSATILE: Sensors can
H,S, VI
(603) 448-3838
be easily attatched to many
S, HI, LD, IE, SI
parts of the body with ad-
Exceptional Childrens
Software, Inc. [A ]
hesive pads.
Hugh MacMillan
P.O. Box 4758
Medical Centre [A ]
Overland Park, Kan. 66204
350 Rumsey Road
COMFORTABLE: Sensors
(913) 831-3800
Toronto, Ontario
are very lightweight and
S, LD, IE, PH, SI, VI
Canada M4G 1R8
easy to attach.
(416) 425-6220
Expert Systems
S, HI, LD, IE, PH, SI, VI
Just a few of its uses:
Software, Inc. [A ]
Muscle tension switch
Sound switch
2120 Crestmoor Road,
IBM WB7F d [IBM]
Eye Blink Switch
Touch Switch
Suite 316
National Support Center for
Nashville, Tenn. 37215
Persons with Disabilities
NE 117 Olsen St.
(615) 292-7667
2500 Windy Ridge Parkway
Pullman, WA
99163
H, S, IE, PH, SI
Marietta, Ga. 30067
509-334-2226
(800) 426-2133 (TDD)
ASAHEL ENGINEERING INCORPORATED
Extension for Independence
(404) 988-2733 (in Ga.)
[A, IBM, RS]
H, S, HI, LD, IE, PH, SI, VI
757 Emory St., 514
Imperial Beach, Calif. 92032
Innocomp [IBM]
EQUAL
(619) 423-7709
33195 Wagon Wheel Dr.
H, PH
Solon, Ohio 44139
(216) 248-6206
ACCESS
First Byte [A, Ω, à, El
H, S, CA, PH, SI
2845 Temple Ave.
Long Beach, Calif. 90806
Instructional/
COMPUTER
Technology is now available that
(213) 595-7006 (in Calif.)
Communications
allows both children and adults with
(800) 523-8070
Technology, Inc. [A ]
special physical needs access to the
S, HI, LD, IE, SI, VI
10 Stepar Place
computer. Access to software that is
available to their peers to learn, play,
Huntington Sta., N.Y. 11746
work.
Floppy Enterprises [A ]
(800) CALL-ICT
P.O. Box 366
S, HI, LD, IE, PH, SI
YOU CAN
Matching the right technology to
meet the persons special needs can
Menomonie, Wis. 54751
be a challange. Technology is changing
(715) 235-2288
Intex Micro Systems
fast. New products are on the
S, HI, LD, IE, SI
Corporation
market today that are making things
[A, IBM, Ω, RS, à, Σ ]
possible that were never before.
Garid, Inc. [A, IBM]
725 S. Adams Rd., Suite L-8
OUR
We provide quality products that use
10180 Viking Drive
Birmingham, Mich. 48011
SUPPORT
proven technology. Product
Eden Prairie, Minn. 55344
(313) 540-7601
Information Sheets, Application
(612) 941-5464
CA, H, PH, SI, VI
Manuals, phone support are provided
in language we can all understand.
S, HI, SI
Jesana Ltd. [A]
CALL FOR A FREE CATALOG TODAY.
Handicapped Childrens'
P.O. Box 17
don johnston
nonspeech
Technology [A, Ω ]
Irvington, N.Y. 10533
developmental
communication
P.O. Box 7
(914) 591-5539
and
equipment, inc.
Foster, R.I. 02825
(800) 443-4728
computer access
312-526-2682
(401) 861-3444
AA, CA, S, H, HI, LD, IE,
P.O. Box 639
1000 N. Rand Rd., Bldg. 115
Wauconda, Illinois 60084
AA, H, S, PH
PH, SI, VI
42 EXCEPTIONAL PARENT / OCTOBER 1988
RESOURCE SECTION
Kay Elemetrics Corp.
Learning Technologies, Inc.
SILENCE IS
BORING!
[A, IBM]
[A, IBM, Ω ]
12 Maple Ave.
4255 LBJ Freeway, Suite 131
Pine Brook, N.J. 07058
Dallas, Texas 75244
Educational software from Dataflo Computer
(201) 227-2000
(800) 238-4277
Services breaks the boredom barrier with speech
H, S, CA, AA, HI, SI
S, HI, LD, IE, SI
for IBM®/ compatible and Apple II computers!
SPELL AND TELL™, TELL AND SPELL™ and LELPS® share the same
Key Tronic [IBM ]
Life Science Associates
2000-word files in 55 categories! Each letter and word is pronounced! Included
P.O. Box 14687
[A, IBM ]
SPEECH UTILITY™ lets you modify words, pronunciation or create unlimited
Spokane, Wash. 99124
One Fenimore Road
number of original word files.
You're in control not the softwarel
(509) 928-8000
Bayport, N.Y. 11705
Each also available in Spanish version with Spanish SPEECH UTILITY™!
H, PH
(516) 472-2111
H, S, HI, LD, IE, PH, VI
FIRST MATH® and FLASH MATH™ offer spoken encouragement and
Kidsview [A, IBM, Ω]
prepare a personal, on-screen report card!
P.O. Box 98
Marble Soft [A ]
HIDE AND FIND challenges you to find the matched pairs hiding behind
Warner, N.H. 03278
21805 Zumbrota N.E.
flip-cards. Here, speech would be distracting you'll have to concentratel
(603) 927-4428
Cedar, Minn. 55011
S, VI
(612) 434-3704
Conceived by educators. All keyboard inputs are single-keystroke, and
custom-designed graphics characters improve visual recognition and
S, HI, LD, IE, PH, SI
retention as compared to typical screen text characters.
Kinetic Designs, Inc.
[A, IBM ]
Marshware, Inc. [A ]
Most popular speech boards are supported. Programs also run in non-speech
14231 Anatevka Lane S.E.
P.O. Box 8082
mode for quiet study. (Sorry, speech is not available for Apple IIc)
Olalla, Wash. 98359
Shawnee Mission, Kan. 66208
FOR INFORMATION, SYSTEM REQUIREMENTS AND ORDERS:
(206) 857-7943
(800) 821-3303
(800) 453-0330
S, HI, LD, IE, SI
S, PH, VI
U.S.A. DIRECT
MCE, Inc. [A, IBM ]
Krell Software [A, IBM, Ω
157 S. Kalamazoo Mall,
DEPT. D, HC 32 BOX 1, ENFIELD, NH 03748
Flowerfield Bldg.,
Suite 250
(603) 448-2693
Number 7, Suite 1D
Kalamazoo, Mich. 49007
St. James, N.Y. 11780
(800) 421-4157
(516) 584-7900 (in N.Y.)
(616) 345-8681 (in Mich.)
(800) 245-7355
S, LD, IE
DiRECTORY
OF SERVICES
MORE LISTINGS AND
S, HI, LD, IE, PH, SI
for Blind and
Visually
FEATURES THAN
McGraw-Hill [A, IBM, RS]
Impaired
Persons
Kurzweil Computer
Gregg Division
EVER BEFORE!
in the
United States
Products, Inc. [IBM]
1221 Avenue of the Americas
23rd EDITION
How to find the services you need
185 Albany St.
New York, N.Y. 10020
More than 1,000 listings of local, state,
Cambridge, Mass. 02139
(800) 334-7344
regional & national services that help
(800) 343-0311
S, PH, VI
blind & visually impaired persons partici-
(617) 864-4700 ( in Mass.)
pate fully in the mainstream
CA, H, VI
MECC [A ]
* Complete subject & organization indexes; bibliography; 472
3490 Lexington Ave. N.
pages; 8-1/2x11 spiral bound; price includes quarterly update
newsletters.
Laureate Learning Systems,
St. Paul, Minn. 55126
Inc. [A ]
(612) 481-3500
* All listings include organization name, address, telephone,
contact person, & program descriptions.
110 East Spring St.
S, LD, IE, PH, SI
Winooski, Vt. 05404
TAKE ADVANTAGE OF A 10% DISCOUNT FOR ORDERS OF
10 OR MORE COPIES GOING TO ONE ADDRESS
(802) 655-4755
Media Materials, Inc. [A ]
Send to: American Foundation for the Blind, 15 West 16th Street, New York, NY 10011
S, HI, IE, LD, SI, PH, VI
2936 Remington Ave.
ORDER FORM
Baltimore, Md. 21211
Please send me
copy(ies) at $39.95 each (AFB cat. no. PIP147)
Learning Company
(301) 235-1700
plus $
postage and handling charge*
TOTAL $
[A, IBM, Ω, RS ]
S, HI, LD, IE, SI
Method of payment
Check
Money Order
Credit Card
6493 Kaiser Drive
UNESCO coupons
Institutional p.o. #
Fremont, Calif. 94555
Medical Equipment
Credit card information
American Express
VISA
(415) 328-5410
Distributors [A]
MasterCard & Interbank No.
S, HI, LD, IE, PH, SI
3223 South Loop 289, #150
Expiration date: Month/Year
Account #
Lubbock, Texas 79423
Cardholder's signature
(806) 793-8421
(not valid without signature)
Name
(800)253-4134
AA, S, PH
Address
City/State
Zip
$4.50 for 1 copy; add $2.00 for each add'l copy. Foreign orders will
receive a pro-forma invoice.
EXCEPTIONAL PARENT / OCTOBER 1988 43
RESOURCE SECTION
TALKING COMPUTER
Micromint, Inc. [A, IBM, Ω
Peal Software [A]
4 Park St.
500 N. Parkway
SYSTEMS
Vernon, Conn. 06066
Calabas St., #105
(203) 871-6170
Calabas, Calif. 91302
COMPUTER ACCESS FOR THE VISUALLY IMPAIRED
H, PH, VI
(818) 883-7849
Home Education Business
S, HI, LD, IE, PH, SI
Featuring a complete line of Adaptive Hardware and Software
Microtech Consulting Co.
[A, IBM]
Personal Computer
Products including: Braille & Speak, Blackboard, Talking Lap-
206 Angie Drive, Box 521
Resources [A]
tops, speech accessible LAN Systems, CD ROM, Word
Cedar Falls, Iowa 50613
2100 Washington St.
Perfect, D BASE and More
(319) 277-6648
Hanover, Mass. 02339
(800) 992-SIGN
(617) 871-5396
On Site Training Available
S, HI, SI
H, S, HI, IE, LD, PH, SI, VI
Days or Evenings
Milliken Publishing
Personics Corporation [A]
Call or Write
Company [A ]
2352 Main St., Bldg. 2
P.O. Box 21579
Concord, Mass. 01742
for our NEW
1100 Research Blvd.
(617) 897-1575 (in Mass.)
Product Catalog
St. Louis, Mo. 63132
(800) 445-3311
(314) 991-4220
H, PH
S, HI, LD, IE, SI
Phone-TTY, Inc. [ IBM ]
The Sound Idea Professionals
MindPlay c/o Methods and
202 Lexington Ave.
Solutions, Inc. [A, IBM ]
Hackensack, N.J. 07601
100 Conifer Hill Drive
(201) 489-7889
12 Riverside St. Suite 1-3
Danvers, Mass. 01923
H, S, HI
Watertown, MA
(508) 774-1760 (in Mass.)
(617) 926-1919
(800) 221-7911
Polarware/Penguin Software
S, HI, LD, IE, PH, SI
1055 Paramount Parkway
Mindscape, Inc.
Batavia, Ill. 60510
[A, IBM, RS ]
(312) 232-1984
INNOCOMP ANNOUNCES
3444 Dundee Road
S, LD, IE, SI, PH
Northbrook, Ill. 60062
(312) 480-7667
CARE
Polytel Computer Products
S, HI, LD, IE, SI
Corp. [ IBM ]
1250 Oakmead Parkway,
Morning Star Software [A]
Suite 310
SOFTWARE FOR SAY-IT-ALL AND SAY-IT-SIMPLY
P.O. Box 5364
Sunnyvale, Calif. 94086
SPEECH COMMUNICATION AIDS
Madison, Wis. 53705
(408) 730-1347 (in Calif.)
(608) 233-5056
(800) 245-6655
S, HI, LD, IE, SI, VI
H, HI, LD, IE, PH, SI
National Captioning
Prentke Romich, Co.
Institute [A ]
[A, IBM ]
5203 Leesburg Pike
1022 Heyl Road
Falls Church, Va. 22041
Wooster, Ohio 44691
(703) 998-2400 (voice or TTY)
(216) 262-1984
CA, H, HI
CA, H, PH, SI
Network Services [A, IBM ]
Psychological Software
1915 Huguenot Road
Services, Inc. [A. IBM, å]
Richmond, Va. 23235
6555 Carrollton Ave.
(804) 379-2253
Indianapolis, Ind. 46220
CARE
Cognitive Access Response Environments Software
S, HI, LD, IE, PH, SI
(317) 257-9672
designed with you and your client in mind.
CARE
is simple to learn and allows for the fastest and easiest
S, HI, LD, IE, PH, SI, VI
communication available
Optelec USA, Inc. [ IBM ]
CARE
is an innovative system which surpasses previous key-
325 Ayer Road
access methods in flexibility and ease of use
Harvard, Mass. 01451
(617) 772-3395
INNOCOMP CARES, CALL (216) 248-6206 TODAY
H, VI
INNOCOMP
33195 Wagon Wheel Drive
Solon, Ohio 44139
44 EXCEPTIONAL PARENT / OCTOBER 1988
RESOURCE SECTION
PTI-Koala [A, IBM]
Sentient Systems
296 Mount Hermon Road
Technology, Inc.
Scotts Valley, Calif. 95066
[A, IBM, Ω, RS, à, Σl
(408) 438-0946
5001 Baum Blvd.
H, HI, LD
Pittsburg, Pa. 15213
(412) 682-0144
Radio Shack Education
H, PH, SI
Division [ RS ]
Green Meadows
1600 Tandy Center
Siemens Hearing
Fort Worth, Texas 76102
Instruments [IBM]
A unique
Green Meadows, founded in 1976,
specializing in the care of autistic/
(817) 390-3302
10 Corporate Place South
S, H, HI, LD, IE, PH, SI
Country
moderately retarded, offers year-
Corporate Park 287
round programming in:
Piscataway, N.J. 08854
Raised Dot Computing, Inc.
(201) 562-6600
Setting for
Vocational training and
[A, IBM ]
(800) 345-0183
the Special
community work
408 S. Baldwin St.
H, S, HI, PH
Adolescent
Personal living skills
Madison, Wis. 53703
(608) 257-9595
Southern Micro Systems
and Adult
Education-based programs
S, VI
[A, IBM, RS]
Variety of lifetime leisure and
P.O. Box 2097
recreational opportunities
RC Systems, Inc. [A]
Burlington, N.C. 27216
a 24 hour caring, supportive
121 West Winesap Road
(919) 226-7610
environment on a 40 acre farm
Bothell, Wash. 98012
S, LD, IE
Contact:
9206) 672-6909
Director of Admissions
H, LD, PH, SI, VI
SouthWest EdPsych
Green Meadows School
Services, Inc.[A]
Stowe Hill Road
Resource Software
P.O. Box 1870
Wilmington, Vermont 05363
International, Inc.
Phoenix, Ariz. 85001
802-464-8646
[A, IBM, Σ ]
(602) 253-6528
330 New Brunswick Ave.
S, HI, LD, IE, SI, VI
Fords, N.J. 08863
(201) 738-8500
Springboard Software, Inc.
S, LD, IE, SI
[A, Ω, IBM]
WHAT THEY'RE ALL SAYING
7808 Creekridge Circle
About PEAL - The Most Acclaimed Computer-Enhanced
Rhiannon Software
Minneapolis, Minn. 55435
Language Activities for Young Special Needs Children
[A, IBM ]
(612) 944-3915
"
3717 Titan Drive
S, HI, LD, IE, SI
helps kids, from toddlers on up, to become powerful and creative
almost immediately. It's really uncomplicated the easiest program to
Richmond, Va. 23225
learn for both the children and the teacher. It's certainly the most
(804) 272-7770
Steven E. Kanor, Ph.D.,
cost-effective its uses are virtually unlimited."
H, S, LD, IE, PH, SI
Inc. [A]
Dr. Mary Male
Assoc. Prof., San Jose State Univ., Special Education Department
8 Main St.
"
is leading scientists to reassess their ideas of how and when children
Schneier Communication
Hastings-on-Hudson, N.Y.
with Down Syndrome learn language and what their intellectual capacity
Unit [A, Ω]
10706
might be."
The New York Times
Cerebral Palsy Center
(914) 478-0960
"
1603 Court St.
H, PH, IE
(PEAL's) Keytalk is highly recommended for early readers, learning
Syracuse, N.Y. 13208
disabled, non-speaking and other special needs children it does have
wide
appeal is very easy to use, reliable and fun."
(315) 455-7591
Street Electronic Corporation
Computer Users in Speech & Hearing (CUSH)
S, HI, LD, IE, PH, SI, VI
[A, Ω, IBM, å, Σ1
64 Via Real
Sensory Aids Corporation
P.O. Box 50220
[A, IBM ]
Carpenteria, Calif. 93013
6140 Horseshoe Bar Road,
(805) 684-4593
Suite P
H, LD, IE, PH, SI
Loomis, Calif. 95650
(916) 652-7253
Sunburst Communications
PEAL is widely recognized as the leading edge in computer software for
H, S, LD, VI
[A, Ω, IBM]
language learning during the early developmental years, 1½-8. Based on
39 Washington Ave.
the pioneering work of clinical research linguist Dr. Laura F. Meyers, PEAL
Pleasantville, N.Y. 10570
offers the most thoroughly researched and clinically tested language inter-
vention software available. Contact us for a free brochure.
(914) 769-5030 (in N.Y.)
(800) 431-1934
5000 No. Parkway Calabasas, Suite 105E
H, S, HI, LD, IE, PH, SI, VI
_________________________
Calabasas, CA 91302 (818) 883-7849
Acquisition
ECHO is a trademark of Street Electronics/Muppet
The Results Speak For Themselves
Learning Keys is a trademark of Sunburst Communications
EXCEPTIONAL PARENT / OCTOBER 1988 45
RESOURCE SECTION
Talking Computer Systems
Typewriting Institute for the
THERAPEUTIC TOYS, INC.
[A, IBM}
Handicapped [IBM, Σ1
12 Riverside Street, Suite 1-3
3102 W. Augusta Ave.
Watertown, Mass. 02172
Phoenix, Ariz. 85051
(617) 926-1919
(602) 939-5344
(WOW!THEY SAID THE
SMULTI SENSORY MOTIVATOR
H, S, CA, AA, VI
AA, H, HI, PH, VI
WAS VERY VERSATILE, BUT
(I DION'T KNOW IT WAS
TASH Inc. [A, Ω, IBM]
UCLA Intervention
LUNIVERSAL
(Technical Aids & Systems
Program [A]
MAYBE NEXT TIME
for the Handicapped)
1000 Veteran Ave.,
WE SHOULDNT TELL
70 Gibson Drive, Unit 12
Room 23-10
THEM THE CORD CAN
Markham, Ontario
Los Angeles, Calif. 90024
BE PLUGGED INTO
Canada L3R 4C2
(213) 825-4821
ALMOST ANYTHING.
(416) 475-2212
S, LD, PH, HI, SI, VI
H, LD, IE, PH
Unicorn Engineering Co.
Teach Yourself By Computer
[A, RS, IBM]
Software [A, RS]
6201 Harwood Ave.
2128 W. Jefferson Road
Oakland, Calif. 94618
SCHOOL
Pittsford, N.Y. 14534
(415) 428-1626
(716) 427-7065
H, LD, IE, PH
S, HI, LD, IE, SI
Voice Connection [A, IBM]
Teacher Support
17835 Skypark Circle, Suite C
Software [A]
Irvine, Calif. 92714
TAYLOR
P.O. Box 7130
(714) 261-2366
Gainesville, Fla. 32605
Call or write for a FREE catalog to:
H, S, PH
THERAPEUTIC TOYS, INC.
(904) 371-3802
91 Newberry Road, East Haddam, Connecticut 06423
Connecticut residents: (203) 873-9509 Outside Connecticut: 1-800-638-0676
S, LD, VI
Vortrax International, Inc.
[A, Ω, IBM, RS, à, Σ1
Telesensory Systems, Inc. [A,
1394 Rankin Drive
IBM]
Troy, Mich. 48083
455 N. Bernardo Ave.
(800) 521-1350
The Unicorn Expanded Keyboard
Mountain View, Calif. 94039
H, LD, IE, PH, SI, VI
is the solution For children who have
(415) 960-0920
difficulty using the standard keyboard on a
H, S, LD, VI, AA
VTEK [A, IBM]
computer or communication aid.
1625 Olympic Blvd.
Temporal Acuity Products,
Santa Monica, Calif. 90404
Inc. [A, Σ1
(213) 452-5966
300-120th Ave. N.E., Bldg. 1,
H, VI
Bellevue, Wash. 98005
Overlays grograms and setup # Soffware. $ CONTROL & MESSAGE
(206) 462-1007 (in Wash.)
Words+, Inc. [IBM]
(800) 426-2673
1125 Stewart Court, Suite D
RESET
S, HI, LD, IE, PH, SI
Sunnyvale, Calif. 94086
(408) 730-9588
NEW! popular
4
0
Therapeutic Toys, Inc.
H, HI, LD, IE, PH, SI, VI
W
E
R
T
o
[A, IBM, Ω]
A
S
F
G
-
2
X
V
B
N
91 Newberry Road
Zygo Industries, Inc.
a
SPACE
East Haddam, Conn. 06423
[A, Ω, IBM, El
(203)873-9509
P.O. Box 1008
(800) 638-0676
Portland, Ore. 97207
With large keys and user-definable messages, it can easily
AA, CA, H, IE LD, PH, SI, VI
(503) 684-6006
be customized to suit the child. Keys can be grouped to-
CA, H, S, PH, SI, VI
gether to form larger areas and can be labeled with words,
Trace Research and
pictures, symbols, colors, etc. Unlike most other alternate
keyboards, it runs virtually all Apple and IBM software
Development Center
(keyboard emulator required) and is compatible with vari-
[A, IBM]
ous portable speech aids; speech output may be added
Room S-151 Waisman Center
to Apple, IBM and compatibles. Optional keyguards are
also available.
1500 Highland Ave.
Madison, Wis. 53705
For more information contact:
Unicorn Engineering Co.
415 428-1626
(608) 262-6966
6201 Harwood Ave., Oakland, CA 94618
AA, S, PH, HI, LD, IE
46 EXCEPTIONAL PARENT / OCTOBER 1988
RESOURCE SECTION
ADAPTIVE AND
COMMUNICATION AIDS
Adaptive Aids, Inc.
Medical Technology
P.O. Box 57640
Systems
Comprebensive Academic
Tucson, Ariz. 85713
F. Keep Company
(800) 223-5369 Ext. 357
3670 Peacock Court, Suite 6
AA, IE, LD, PH
Santa Clara, Calif. 95050
(408) 246-2473
& Therapeutic Programming
Adaptive Communication
CA, SI
Systems
for Special Needs Students
P.O. Box 12440
Perkins School for the Blind
Pittsburgh, Pa. 15231
175 N. Beacon St.
(412) 264-2288
Watertown, Mass. 02172
AA, CA, LD, IE, PH, SI
(617) 924-3434
CA, VI
AT & T National Special
Needs Center
Phonic Ear, Inc.
2001 Route 46, Room 310
250 Camino Alto
Parsippany, NJ 07054
Mill Valley, Calif. 94941
(800)233-1222
(415) 383-4000 (in Calif.)
(800)833-3232(TDD)
(800) 227-0735
CA, HI, PH, SI, VI
CA, H, IE, PH, SI, VI
Caption Master VCR
Shea Products, Inc.
Instant Replay, Inc.
1721 W. Hamlin Rd.
2951 S. Bayshore Drive
Rochester Hill, Mich. 48309
Miami, Fla. 33133
(313) 852-4940
(305) 448-7088
CA, HI, LD, PH, SI
AA, H, HI
Silent Call
Crotched Mountain Rehabilitation Center is a fully
Crestwood Co.
P.O. Box 16348
P.O. Box 04606
Clarkston, Mich. 48016-6348
accredited special education school for physically
Milwaukee, Wis. 53204
(313) 391-1710
challenged students:
(414) 461-9876
AA, HI, PH
AA, CA, HI, LD, IE, PH, SI,
Medical Services
VI
Tiger Communication
Therapeutic Recreation
System, Inc.
Fred Sammons, Inc.
155 E. Broad St., #325
Inpatient/Outpatient Therapies
145 Tower Drive
Rochester, N.Y. 14604
& Equipment Adaptations
Burr Ridge, Ill. 60521
(716) 454-5134
(800) 323-5547
CA, LD, IE, SI
Pre-Vocational
CA, AA, S, LD, PH, SI
& Vocational Training
Ultratec, Inc.
Harris Communication
6442 Normandy Ln.
Full Spectrum of
3255 Hennepin Ave., Suite 55
Madison, Wis. 53719
Clinical Services
Minneapolis, Minn. 55408
(608) 273-0707 (Voice/TDD)
(612) 825-5867
CA, HI
Recently Constructed
AA, CA, HI
Group Home Campus
Krown Research, Inc.
Licensed Skilled Nursing Unit
10371 W. Jefferson Blvd.
Culver City, Calif. 90232
For further information, please contact the Admissions
(213) 839-0181
Office, Crotched Mountain Rehabilitation Center,
CA, HI
Greenfield, NH 03047 (603) 547-3311.
Luminaud
8688 Tyler Blvd.
CROTCHED MOUNTAIN
Mentor, Ohio 44060
(216) 255-9082
REHABILITATION CENTER, INC
CA, SI
Greenfield, New Hampshire 03047
EXCEPTIONAL PARENT / OCTOBER 1988 47
The National Special
National
Education Alliance:
Special Education
Alliance®
One Year Later
An update
"E
xpectations are soaring," claimed
The result of a series of meetings was a
on the National
Apple Computer, Inc. when it
model for a national network of locally
announced the formation of a
based DCCG-like resource centers. That
Special Education
national network of local computer resource
model would be called the National Special
Alliance.
centers called the National Special
Education Alliance. The long-term goal
Education Alliance (NSEA). The alliance
would be to develop at least one such
was composed of 11 non-profit, parent-run
community based, parent-driven,
sites closely linked by a common passion: to
technology resource center in every state.
use state-of-the-art technology to better the
Initially, eleven Charter Member Resource
lives of individuals with disabilities.
Centers were chosen to form the alliance.
Today the alliance has more than
doubled in size. There are now two dozen
THE ALLIANCE TODAY
support centers located across the United
States. One year ago EXCEPTIONAL
As the alliance enters its second year,
PARENT reported on NSEA to parents and
many centers -- both old and new -- are
professionals.
discovering the benefits of being part of a
large network of support. According to
A BRIEF HISTORY
Jackie Brand, NSEA executive director,
"Each center has its individual strengths
The NSEA exists today largely due to
and specialties, and that expertise is
the vision and energy displayed by two
rubbing off on all the other sites across the
groups: Apple Computer, Inc. and the
country." As a result, all of the member
Disabled Children's Computer Group
sites are better able to serve a broad range
(DCCG) in Berkeley, Calif. In late 1986,
of ages, needs and disabilities. Instead of
Apple was continuing to build the Office of
concentrating on just one area of interest,
Special Education Programs it had created
many centers are working closely with their
just a year before. And the DCCG was a
colleagues to become fluent in many
small, non-profit agency doing not-so-small
different disciplines. Carol Cohen of the
things with computer technology and
Computer Center for Independence
people with disabilities. In fact, DCCG was
Training and Education in Florida says,
enormously successful in implementing
"Although our center specializes in visual
community programs to help local users
impairments, we feel we have the resources
become aware of adaptive technology. The
and connections to find answers con-
staff at DCCG distributed information, held
cerning just about any kind of disability."
training workshops, led product
All the centers are non-profit agencies,
demonstrations and worked closely with
staffed largely by volunteers. Many of the
technology developers. Before long
centers are located in donated buildings --
by
employees at Apple Computer began
schools, public libraries, or local agencies.
Peter Green
hearing about DCCG, and in the summer of
The unifying characteristic of all the centers
1986 the two groups were officially
is their ability to effectively respond to
introduced.
questions and raise awareness about
48 EXCEPTIONAL PARENT /OCTOBER 1988
today's adaptive computer technology. To
site in Colorado in less than 10 seconds - or
this end, all the sites disseminate
even a note to every NSEA center in that
information, hold training workshops,
same time frame. For example, in a recent
provide hands-on computer exploration
communication, the Disabled Citizen's
time and help local computer users with
Computer Center (DCCC) in Kentucky sent
disabilities make their own decisions about
a message to all of the other alliance centers
the most useful adaptive equipment. Many
asking for advice about how to best adapt a
sites are setting up lending libraries to allow
computer to help a six-year-old child with
local users with disabilities a chance to
cerebral palsy. Bob Glass of DCCC said,
sample adaptive equipment in their own
"We didn't know how best to help this
homes. Several sites offer individual
child. By the next morning we had received
consultations to parents, training
no less than five solid suggestions from
workshops for children and software
other NSEA sites."
evaluations for educators.
The NSEA is constantly exploring new
Another important similarity among
methods of communication. Most recently
sites is the absolute belief that parents --
the group has been experimenting with an
along with professionals and consumers --
electronic bulletin board system called
must be key leaders in the decision-making
GrantLink. Instead of addressing electronic
All the centers
process. Indeed, one of the basic
memos to specific members of the group,
requirements for being accepted for NSEA
the computer bulletin board allows NSEA
are non-profit
membership is that the agency have strong
members to "tack up" a message or
agencies, staffed
parent and consumer involvement along
question for all alliance members to see. In
largely by
with solid professional support.
addition to posting electronic messages,
volunteers.
From the NSEA's inception, it was
GrantLink has a built-in library of
expected that these centers would actively
information useful to non-profit agencies.
go out and make a difference in the world.
For example, the system contains
But no one came close to guessing the
information on everything from funding
extent of that impact. A recent survey
tips and creating newsletters, to the latest
conducted by Apple Computer shows that
news in the education field. Because of this
every month the NSEA reaches more than
vast collection of on-line material,
1000 computer users with disabilities. The
GrantLink plays an important role in
typical center reported receiving nearly 150
supporting each center. As Brand describes,
phone calls per month. And the average
"Telecommunications allows us immediate
NSEA center has a mailing list of over 800
and ongoing contact with each other. We
members.
can be instantly responsive to the needs at
our centers."
BUILDING A NETWORK
Before the NSEA became a network,
many of the centers operated as
independent resource sites working alone in
their community. "We had the feeling that
we were alone in the world," says Pat
Cashdollar of the Communication
Assistance Resource Service (CARS) in
Ohio. "We had no idea that there were
other centers out there who were interested
in the same goals we were." Today, one of
the most important items on the alliance's
agenda is to maintain a state-of-the-art level
of networking and communicating among
centers. To achieve this, each site is linked
"electronically" to all the other centers,
allowing for split-second communication
and information sharing.
Using AppleLink®, Apple Computer's
computer-based mail system, a center in
Photo by Apple Computer, Inc.
Missouri, can send an electronic note to a
EXCEPTIONAL PARENT/OCTOBER 1988 49
What's the smallest talking computer
on the block?
Introducing
Artight
NEW! smallest,
THE THE
Vision
Other
Artic
Artic Products
Artic
Vision
Crystal
Photo by Apple Computer, Inc.
The NSEA at work.
Business
Vision
KENTUCKY: The Center for Adaptive
Technology and Education (CATER) is working
on a program with the University of New
Orleans to assist teachers, administrators and
parents in the process of integrating students with
Artic
(313) 588-7370
moderate to severe disabilities into the
FAX (313) 588-2650
Technologies
55 PARK ST., STE. 2
mainstream school campuses. This summer, the
"The Voice of Experience
TROY, MI 48083-2753
CATER center has established a "Computer
Club," which will enable kids with disabilities to
interact with their friends from the new schools in
a supportive environment.
CALIFORNIA: The Computer Access Center is
LOOK WHO'S
experimenting with a new program called "Kids
Teaching Kids" in which local children are given
free reign over the computer equipment to
TALKING!
experiment, play, learn and teach their friends.
As new members come into the center, the
"experts" will be available to give first-hand
instruction on adaptive tools.
MONTANA: The Parents, Let's Unite for Kids
(PLUK) center is currently setting up its own
telecommunication network for families of kids
with disabilities who live in remote, rural
locations. Using modems and computers to
communicate, the center is finding an exciting
way to tie together a group of otherwise very
We are. People are.
isolated individuals.
To find out what they're saying,
MISSOURI: The Computer Resource Center is
call us.
experimenting with a "Software Swap" program
whereby local computer users can trade with
center members their personal software packages.
VOiS 136
TAPE BACKUP
The swap project enables a broad audience of
MORE MEMORY
MULTIPLE USER CAPABILITY
TEN VOICE PITCHES
OVER 12,000 ENTRIES
computer users to demonstrate and experience
PORTABLE
LONG BATTERY LIFE
LIGHTWEIGHT
LOCAL SUPPORT
FUNDING INFORMATION
expensive software tools.
)))IIPhonic Ear 250 Camino Alto, Mill Valley, CA 94941, 800/227-0735
50 EXCEPTIONAL PARENT / OCTOBER 1988
CHILDREN WITH CEREBRAL PALSY
BRINGING THE GROUP TOGETHER
NEED COMPREHENSIVE,
Saturday, July 30, 1988 was a landmark day in the
history of the NSEA. It was the first time that
INTENSIVE PROGRAMS
individuals from all 24 centers met together for an
evening -- not electronically, but physically. The event
Because of their multiple handicaps, many children with
took place at Harvard University's Graduate School of
cerebral palsy need:
Education. Members from each resource center came to
Physical Therapy
Special
participate in training for one week.
Occupational Therapy
Educational Programs
For the newest members of the alliance, the training
Speech and
Specialized
provided a chance to come up to speed with the other
Language Training
Medical Attention
sites. More experienced centers worked with newer sites
Communication
Adapted
Aids
Recreational Activities
to help them become familiar with adaptive computer
tools, assist them with AppleLink and to share tips
These and other services are available for children 2 to 21
about how to run a successful resource center.
years of age at HMS School for Children with Cerebral Palsy,
formerly Home of the Merciful Saviour for Crippled Children,
a non-sectarian, residential, licensed private school. Qualified,
PREPARING FOR THE FUTURE
experienced staff members work closely with an active group
of consultants in several medical specialties, psychology,
education and speech pathology to provide high quality,
Pressing issues regarding the future growth of the
individual habilitation and education programs. For
alliance remain. "We're looking not only in terms of
information write to:
growth in the number of centers," comments Brand,
Diane L. Gallagher, Director
"but growth in the level of support and quality that each
HMS School for Children
center brings to the alliance."
Lately the NSEA has been working diligently to
with Cerebral Palsy
foster close working relationships with the business
4400 Baltimore Avenue
Philadelphia, PA 19104
community. Partnership with the business community
(215) 222-2566
appears to be beneficial for all involved. Vendors have
supported the local sites by providing up-to-date
product information, assisting with software
demonstrations and being responsive to customer
feedback. The relationship has also been beneficial to
vendors as well because sites have tested products and
provided input on new solutions.
As the alliance continues to grow in the number of
centers and vendors in the network, and in the
expanded support it offers, individuals with disabilities
all across the country will benefit enormously.
"Expectations are soaring," says Brand. "With the
advent of exciting, powerful technologies, we're
expecting to help more and more children and adults
with disabilities."
Apple Computer agrees. In a recent corporate
advertisement promoting the NSEA, the headline reads,
"Life isn't fair. But we're working on it." That, in a
nutshell, describes the mission of the NSEA.
For more information about the National Special
Education Alliance, contact Apple's Office of Special
Kids Send Many Messages
Education, 20525 Mariani Ave., Cupertino, Calif. 95014.
Let us help your child find another way to say, "I love
you." Our alternative communication team under-
Peter Green works in the Office of Special Education at Apple
stands the needs of nonspeaking children and their parents.
Computer, Inc., Cupertino, Calif.
Please write or call today for more information.
®Apple, the Apple logo, AppleLink, and Macintosh are registered trademarks of Apple
Computer, Inc. The National Special Education Alliance logo is a service mark of Apple
Kluge Children's Rehabilitation Center
Computer, Inc.
Serving Special Children and Adolescents from Birth to 21 Years
University of Virginia Children's Medical Center
2270 Ivy Road
Charlottesville, VA 22901
804-924-8184
EXCEPTIONAL PARENT / OCTOBER 1988 51
Adaptive Aids
No Longer "Just a Parent:"
The Role of Parents
Committed to the Handicapped
in the NSEA
Who we are:
Adaptive Aids is a not-for-
by Lisa Cohn and Peter Green
profit corporation in
Tucson, Arizona employing
developmentally disabled
people to manufacture
products for the handicapped.
What we do:
We help the handicapped
declare their independence
by increasing mobility and
providing more control over their
environment. Professionally designed in cooperation
with practicing therapists and educators, our
products provide a broad range of input switches and
control unit capabilities. We make quality, reliable
products, and we keep them affordable.
While making our products, we provide a high quality
work experience for disabled employees. Funds for
Photo by Apple Computer, Inc.
product development, advertising, materials and
employee wages are provided by product sales.
Products from a company
Many parents of children with disabilities would
M
committed to the handicapped
like to change the world -- the way people in the world
Adaptive Aids, Inc.
see their child, the often "prescriptive" relationship
between professionals and parents, and perhaps most of
For more information. write P.O. Box 57640. Tucson. Arizona 85732
all the way parents, themselves, are perceived as
or call toll-free 1-800-233-539 ext. 357. in Arizona (602) 745-8112.
consumers of help rather than providers of support.
All too often a parent of a child with disabilities is
seen as being "just a parent." Quiet. Meek. Brave.
CHAPEL HAVEN
Powerless. Forever cheering their child on from the
sidelines. We all know that this traditional, stereotypical
"telethon" image has never been true. Through the
A transitional residential/
individual efforts of many dedicated and persistent
vocational program for 39 young
parents the world is, in fact, slowly beginning to change.
Indeed, in the 24 NSEA technology resource centers
adults with learning disabilities,
across the country, mothers and fathers are the leading
ages 18-33. Individualized
force in dreaming, planning, designing, and building a
bright future for their kids. No longer are parents
instruction in independent living,
waiting for well-intentioned experts to create new
work habits, job acquisition, &
possibilities for their children through technology.
social skills. Licensed. Founded
Instead, in every NSEA center, the notion of parent-as-
leader is the rule rather than the exception.
1972.
As many parents are quickly discovering,
Call (203) 397-1714.
technology is powerful in ways beyond what computers
can do for their children it's changing the way they are
able to relate to professionals. Because computer
technology is unfamiliar to vast numbers of people,
parents and professionals alike are finding themselves
on equal ground. No one group can claim expertise,
making way for a true collaborative relationship where
everyone can learn about and explore exciting new
possibilities together.
This collaborative relationship was plainly evident
at a recent training seminar for NSEA leaders. During
the training, parents and professionals worked together
1040 Whalley Ave., New Haven, CT 06515
to solve problems and learn the latest technology.
52 EXCEPTIONAL PARENT / OCTOBER 1988
Unlike many "academic" or "medical" conferences
where parents often play little or no role, the seminar
QUADRUPLE SIZE CHARACTER
KIDSVIEW
opportunity enabled parents to stand on equal footing
COMPUTER SOFTWARE
with their professional colleagues. Nonetheless, one of
the most rewarding aspects was the chance for parents
Apple II, IBM(MS/DOS),C64
to connect with other parents who started NSEA sites.
As parents across the country work at building
technology resource centers to help their children, they
MOUNT MURDOCH ADVENTURE SYSTEM™
are finding many experiences to be personally powerful
enables teachers, students and parents to write
and rewarding. In a number of cases, this new state-of-
their own lessons and games.
the-art technology has served as a new answer for
Also contains one full length and two mini games.
Apple II (128K) $49.95, IBM $49.95, C64 $39.95.
parents who have been asking themselves for too long
the question "How can I best help my child?" Many
KIDSWORD™ A full function word processor simple
parents are finding that the computer technology offers
enough for children and powerful enough for adults.
them a chance to work with their child alone, without
Standard and double size print
constant guidance from therapists and teachers.
C64 $39.95, Apple II (128K) ready Fall 1988 $49.95
Other parents are seeing new possibilities and
expectations for their child through the filter of adaptive
KIDSVIEW™ Write and run your own programs in
large clear characters.
technology. "Now I understand my son's use of a
C64 $39.95 Apple II version ready Winter 1988
wheelchair and the Touchwindow as tools that empower
him more effectively in the world," says Greg Burkett of
Shipping and Handling $3.00 per order
the Computer Center for Independence Training and
Education (CITE) in Orlando, Fla. and father of four-
SEND FOR A FREE BROCHURE TODAY
year-old Michael. "Just two short years ago, the school
system was having trouble assessing him or placing him
KIDSVIEW SOFTWARE Inc.
in school. Now they are intrigued with his progress, but
PO Box 98, Warner, NH 03278
still debate what he can learn or accomplish. While they
VISA/MASTERCARD (603) 927-4428
debate, CITE is equipping us with learning activities and
always trying new software and adaptive hardware to
keep Michael challenged and to discover what works
best with his slight vision problem and severe muscle
impairment."
Still other parents are feeling a strong sense of
Spina
competence as they work with emerging computer
technology. The harnessing of a personal passion for
changing their child's life through technology has made
Bifida
many parents want to reach beyond their personal quest
to help others. This feeling is especially evidenced by
At Children's Seashore House, children with
Jackie Brand, executive director of the NSEA. She and
spina bifida benefit from a comprehensive
her husband, Steve, started the first NSEA computer site
program of diagnosis and treatment:
in Berkeley, Calif. in 1985 as an outgrowth of their
evaluation and assessment by an inter-
efforts to help their thirteen-year-old daughter,
disciplinary team
Shoshana. Now Brand is working on a national level to
assistance towards independence in bladder
and bowel self-care, mobility, and other
help other parents develop technology resource centers
activities of daily living
based on a firm foundation of parental leadership.
child and family counseling
The NSEA's powerful focus on technological
close coordination with schools and
solutions and the collaborative problem solving team
community programs.
has enabled parents across the country to begin to
For information about our special program
change the world for their children. With the help of
for children with spina bifida, call us.
adaptive technology, children with disabilities are now
setting and reaching new goals. And in the process their
parents are playing a critical role in determining the
future for their children.
Children's
Lisa Cohn is the founder of the Special Technology Center in
Seashore House
San Jose, Calif. She is the parent of Matt, age five, who has
A Regional Hospital for Specialized Care and Rehabilitation
cerebral palsy, and Alex, who is ten months old.
Atlantic City, New Jersey
Philadelphia, Pennsylvania
609-345-5191
215-596-9103
EXCEPTIONAL PARENT / OCTOBER 1988 53
NSEA Members Centers
KENTUCKY: Disabled Citizens Computer Center,
Louisville Free Public Library, 301 West York St.,
Louisville, Ky. 40203. Contact: Bob Glass, (502) 561-
8637
LOUISIANA: Supergroup/CATER-Center for
Adaptive Technology & Education, 3340 Severn Ave.,
Suite 200, Metairie, La. 70002, Contact: Melanie Ferrand,
(504) 888-8964 or (504) 561-8713
MASSACHUSETTS: Massachusetts Special
Technology Access Center, P.O. Box J, Bedford, Mass.
01730. Contact: Kathy Huggins, (617) 433-5434
MICHIGAN: Living and Learning Resource Center,
Photo by Apple Computer, Inc.
Physically Impaired Assoc. of Michigan, 601 W. Maple
St., Lansing, Mich. 48906. Contact: Donna Heiner, (517)
487-0883, (800) 833-1996 (Mich.)
MINNESOTA: Pacer Center, Inc., 4826 Chicago Ave.
South, Minneapolis, Minn. 55417-1055. Contact: Daniel
Berks, (612) 827-2966
CALIFORNIA: Computer Access Center, 2425 16th St.,
MISSOURI: Computer Resource Center, St. Louis
Room 23, Santa Monica, Calif. 90405. Contact: Donna
Easter Seal Society, 1710 Mississippi Ave., St. Louis, Mo.
Dutton, (213) 450-8827; Disabled Children's Computer
63104. Contact: Nancy Lacey/Sue Uknes, (314) 776-1996
Group, 2095 Rose St., Berkeley, Calif. 94709. Contact:
Alice Wershing, (415) 841-3224; Special Technology
MONTANA: Parents, Let's Unite for Kids (PLUK),
Center, Division of Parents Helping Parents, 535 Race
1500 North 30th St., Billings, Mont. 59101-0298. Contact:
St., Suite 220, San Jose, Calif. 95126. Contact: Lisa Cohn,
Katharin Kelker, (406) 657-2055
(408) 288-5010
NEVADA: Nevada Computer and Technology Center
COLORADO: Children's Hospital Resource Center,
for the Disabled, 819 Las Vegas Blvd., South, Las Vegas,
1056 East 19th Ave., Denver, Colo. 80218-1088. Contact:
Nev. 89101. Contact: Doreen Moore, (702) 382-3358
Ann Grady, (303) 861-6250
NEW YORK: Techspress, Resource Center for Ind.
DISTRICT OF COLUMBIA: Parents Reaching Out
Living, 401 Columbia St., Utica, N.Y. 13502. Contact:
Services,* D.C. General Hospital, Pediatrics Building,
Russ Holland, (315) 797-4642 (voice or TDD)
1900 Massachusetts Ave., S.E., 4th Floor, West Wing,
Washington, D.C. 20003. Contact: Gloria Stokes, (202)
OHIO: Communicaton Assistance Resource Service
546-8847
(CARS), 3201 Marshall Road, Dayton, Ohio 45429.
Contact: Pat Cashdollar/Terry Trzaska, (513) 298-0803;
FLORIDA: Computer C.I.T.E., 215 E. New Hampshire,
SpeciaLink, 2512 Canterbury Ave., Cincinnati, Ohio
Orlando, Fla. 32804. Contact: Carol Cohen, (407) 299-
45237. Contact: Walter and Elaine Hackett, (513) 531-
5000 ext. 3291
9233
GEORGIA: Parents Educating Parents, 1851 Ram
TENNESSEE: East Tennesee Special Technology
Runway, Suite 102, College Park, Ga. 30337. Contact:
Access Center,* Dept. of Special Services Education, 325
Bonnie Wootten Webb, (404) 761-2745
Claston Addition, Knoxville, Tenn. 37966-3400.
Contact: Lois Symington, (615) 974-6228; West Tenn.
ILLINOIS: Technical Aids & Assistance for the
Special Technology Resource Center for the Disabled,
Disabled Center (TAAD), 1950 West Roosevelt,
227 McCowat/P.O. Box 3683, Jackson, Tenn. 38303.
Chicago, Ill. 60608. Contact: Margaret Pfrommer, (312)
Contact: Margaret Doumitt, (901) 424-9089
421-3373
IOWA: YWCA/R.E.A.D.I., 318 Fifth Street, S.E., Cedar
Rapids, Iowa 52401. Contact: Phil White, (319) 365-1458
KANSAS: Technology Resources for Special People,
* Indicates newest members of the National Special
3023 Canterbury, Salina, Kan. 67401. Contact: Marjorie
Education Alliance. These centers will be providing
Hargis-Delker, (913) 827-0301
services in the near future.
54 EXCEPTIONAL PARENT / OCTOBER 1988
EDITORIAL
Bridging The Technology Gap
C
omputer technology is enabling children and
Although no one planned it this way, learning
adults to live fuller richer lives. Many parents
about the new technological advances that can enrich
feel helpless learning or evaluating information
lives has helped to change the relationship between
about this developing technology. They describe their
parents and professionals. (See page 48.) They have
frustrations about these new products and seek advice
become equal participants -- many are naive beginners,
from many of the education and health professionals
some are knowledgeable experts. Together these groups
who serve their children.
are breaking new ground and rapidly sharing their
Many of us did not grow up at a time when
discoveries via telecommunication The NSEA has also
computers were being introduced in schools. We still
demonstrated that everyone benefits when parents have
feel uncomfortable when adults, much younger than us,
the major organizational control over an educational
or our children tell us about computers. We have little
process. This is a striking contrast to so many
free time and opportunity to utilize these devices, try
educational programs developed by professionally
them out and learn how they can help us.
dominated groups who usually serve only their
For the past six years, we have provided our readers
"members" and rarely serve parents or people with
with information about computer technology and the
disabilities.
ways in which it can facilitate the growth and
We look forward to the future activities of these
development of children with disabilities. We have
new collaborative groups. They are already providing
endeavored to demystify the computer and other
opportunities for consumers to observe and "try out"
technologies, as well as their potential. We have also
various products -- a critical need of parents
tried to share the problems along with the opportunities
everywhere. They are also beginning to address the
that these advances present.
monumental task of identifying the products that
In the last year, through an EXCEPTIONAL
actually provide educational or therapeutic
PARENT survey that many readers answered, we found
opportunities with the needs they serve. For example,
out that over half of the readers who responded have
without these efforts, individual parents who have
personal home computers for their children. We learned
invested in personal home computers would be at a loss
that the experience of our readers parallels the
to find out which software products will be helpful
experience of all parents. In addition, we learned that
because much of the existing software, while advertising
many parents have been instrumental in introducing
educational value, seems to offer only arcade-type fun.
computer technology, not only to the schools their
Many school systems and clinical settings have
children attend, but to the educators in their child's
invested in computer hardware and software only to
classroom.
find that like so many other "new tools," the materials
We have also been made aware of the gap that
have not been used or maintained. Now, thanks to the
exists between those health and education professionals
pioneering efforts of parents, professionals and
who are developing and using technology, and the vast
progressive companies across the country, that kind of
majority of their colleagues. Unfortunately, there are
history need not be repeated.
limited opportunities for practitioners to learn about and
This is our sixth annual technology issue. Each year
evaluate these new developments.
we feel overwhelmed at the prospect of choosing
We have always believed the central issue for all
material and wondering whether the ideas will be
parents in their relationship with professionals is to
practical. That is but one reason why we are SO excited
establish a climate of trust. The technology revolution
by the efforts we have reported on in this issue. People
can intrude on the issue of trust. Parents are often
are sharing new knowledge SO that new ideas can be
uncertain as to whether their children's schools know
enhanced. In the past, there were very few established
how to apply the educational technology that could
networks and people were not aware that "the wheel
maximize their children's education. The same problem
had already been invented." As parents and
arises when families try to get the best health care
professionals share learning experiences, they are
services -- the professionals are often unable to reassure
discovering how similar their concerns and experiences
them.
actually are when trying to address the needs of
The National Special Education Alliance has
children. And, as part of the same process, because
developed a model for helping parents learn about and
parents and professionals are learning to work together
apply the advances in computer technology. Their
and trust one another, we can look forward to progress
information networks provide people with a way to
in areas beyond technology.
learn about new developments in many fields.
- M.J.S. & S.D.K. -
EXCEPTIONAL PARENT / OCTOBER 1988 55
ONLINE HELP
FROM IBM
Access special
needs services
C
omputer technologies can benefit
persons with physical, sensory, or
IBM/SPECIAL NEEDS EXCHANGE
mental impairments. Success stories
through your
abound. A non-vocal student actively
One of these new public information
home computer.
participates in class by using a portable
services is the IBM/Special Needs
computer equipped with a speech
Exchange. IBM, like many of the major
synthesizer; a blind professional has
computer companies, has established
become more productive using a desktop
corporate programs to help persons with
computer hooked up to a Braille printer; a
special needs to use computer technology
learning disabled youngster is mastering
productively. The Exchange is operated for
new academic skills with the aid of an
IBM's Special Education Programs
innovative software program.
Department by LINC Resources, Inc., a
As inspiring as these success stories
non-profit organization recognized
are, they often do not tell the real story: the
nationally for providing information
challenges that persons with special needs
services to the regular and special
must overcome everyday to fully
education communities.
participate in the computer generation.
The IBM/Special Needs Exchange is a
Seldom do we hear about the difficulty of
new breed of information service. That is,
finding a low-cost speech synthesizer that
the Exchange is an "online information
really works well, an affordable Braille
resource." Users must have a computer
printer that is reliable and easy to operate,
equipped with a modem and
or a software package that was fun to use
telecommunications software to take full
and instructionally sound.
advantage of all the Exchange's services.
Fortunately, many government and
Although not everyone who owns a
private-sector organizations are coming to
computer has a modem, the use of
the rescue by establishing information
telecommunications is growing rapidly
reference and referral services that can help
among computer users, and modems are
persons with special needs to tap the power
fast becoming standard equipment for a
of the new computer technologies. These
computer work station. The Exchange may
services assist computer users to maintain
not be able to serve everyone who has a
lists of product manufacturers and software
special need, but the new service is an
publishers and provide them with
important and innovative development
hardware and software product
nonetheless.
By
descriptions. The services also offer helpful
The IBM/Special Needs Exchange
Jack Moore
tips on selecting and installing specialized
currently has two major components. First,
equipment and can refer the computer user
it has a set of activities that takes place on
to other sources of information.
the CompuServe Information Service -- a
56
EXCEPTIONAL PARENT/ OCTOBER 1988
national, consumer-oriented information
services network. Second, the Exchange has
TELECOMMUNICATIONS
a dial-in database of special education
TERMINOLOGY GLOSSARY
software for IBM and compatible
computers.
DOWNLOADING
The Exchange's current "electronic
Refers to the electronic transfer of
home" for most of its services is the
information from the host computer to
Education Forum on CompuServe. The
the user's computer. Such information
Education Forum has three basic features: a
may be a text file or even a software
message board that allows users to
program. Data can also be "uploaded"
communicate with each other or with the
from the user's computer to the host
forum manager through public and private
computer.
messages; a library of text and program files
that can be downloaded to the user's
MODEM
computer; and a conference room that
A device that allows one computer to
allows users to "talk" to each other, or
"talk" to another. The word "modem"
special guest speakers, in "real time"
comes from the technical terms
through their computer terminals.
MOdulate and DEModulate.
The CompuServe activities are
supplemented by two searchable, online
ONLINE DATABASE
databases set up on a dial-in system at
A database, or a computerized file of
LINC headquarters in Columbus, Ohio.
information, that can be accessed
LINC
One is a database of educational software
remotely with a computer and a modem.
RESOURCES
available directly from IBM Corporation;
INC.
the other is a database of special education
ONLINE INFORMATION SERVICE
software from third-party publishers. Users
An interactive service in which the user
can conduct their own searches of these
can access needed information through
databases to identify software products that
a telecommunications link. Information
meet specific needs.
services such as databases, electronic
mail services, online shopping services,
ONLINE SERVICES
and discussion forums are just a few of
the many types of information services
As an online information resource, the
that are available to persons with a
IBM/Special Needs Exchange offers several
computer modem.
important advantages over more traditional
services. Perhaps most important is the
PUBLIC DOMAIN SOFTWARE
Software that is not copyrighted. It
belongs to the "public domain" and is
therefore free of charge to the user.
Software may also be "shareware" or
"user-supported," such software is
obtained for free, but users are
expected to submit payment to the
author on the "honor system."
TELECOMMUNICATIONS
Typically refers to the concept of
computer-to-computer communications,
but it also refers to the general concept
of transmitting information by linking
various kinds of electronic equipment to
each other through phone lines and
other types of long distance connections
(e.g., satellite hookup).
EXCEPTIONAL PARENT/OCTOBER 1988
57
During an online conference, members
can learn about the clever new
ST. GERTRUDE'S SCHOOL
products offered by a guest speaker's
a Pioneer in the Education of handicapped girls
Founded 1926
mail order firm, ask about new
Located on twelve wooded acres
Benedictine Sisters
products under development, or pick
up some helpful tips on how to shop for
an adaptive device.
sharing of information by those who participate in the
Non denominational
CompuServe component of the service. Through the
Ages 6 to 19 yrs
Day and Residential
message board, for example, a student can describe his
or her experience with a new speech synthesizer, an
office worker can ask where to find a good Braille
Accepting
printer, or a parent can read about a new educational
SEVERELY LEARNING DISABLED
and
software package. Members can complain about the
EDUCABLY RETARDED and/or MILDLY EMOTIONALLY DISTURBED
high cost of adaptive equipment, praise a new mail-
GIRLS
order company, or share a tip on using an innovative
teaching strategy. Members can even form lasting pen-
For further information
pal relationships with other members who share an
Telephone (202) 526-7676
Director
St. Gertrude's School
interest or a special need.
4801 Sargent Rd., N.E.
Washington, D.C. 20017
Through the forum's library of text and program
files, special education teachers can obtain descriptive
lists of software for their students. Parents can
"download" free public domain software for their
children to use at home. A visually impaired computer
hobbyist can read about IBM's new Screen Reader
system that uses a speech synthesizer to speak aloud text
"She's beating the odds."
that is displayed on the computer screen.
During an online conference, members can learn
about the clever new products offered by a guest
speaker's mail order firm, ask about new products
under development, or pick up some helpful tips on
how to shop for an adaptive device.
COMPUSERVE
CompuServe also has many other information
services that will probably interest special educators or
persons with special needs. Such services include the
Education Research Forum, the EPIE Database, the
"Natalie's now trying to creep indepen-
Handicapped Users' Database, the Rehabilitation
dently" -Mrs. John Petro, Abilene, Texas
Database, and the Disabilities Forum. Additionally,
there are other discussion forums for users of IBM
If your child has difficulty in moving independently as
Natalie did, and weighs 65 lbs. or less, the Custom-Aid
computer equipment. The IBM New Users Forum, the
Creeper™ may be your innovative, mobility aid discovery.
IBM Communications Forum, the IBM Hardware
This therapist-recommended aid has complete
Forum, and the IBM Software Forum are among them.
adjustability for comfort, ease of movement and mobile
In fact, many of the online activities sponsored by
freedom. Structured of nickel-plated, 16 guage steel,
leather, hardwood and other trusted materials, the
the Exchange are coordinated by Georgia Griffith, an
Custom-Aid Creeper™ assures durability.
information professional who is deaf and blind. By all
Call toll-free 1 (800) 654-5340 or in Texas call
accounts, Georgia is an expert in computer hardware
(915) 695-1640 or write: Custom-Aid Creeperᵀ, P.O.
and software for persons with special needs. In addition
Box 3313, Abilene, Texas 79604.
to her work on the Exchange, she operates the
A product of Custom-Aid Corporation
58 EXCEPTIONAL PARENT / OCTOBER 1988
Handicapped User's Database on CompuServe. Few of
the people with whom Georgia interacts online know
Head
that she cannot see or hear. They only know Georgia for
her expertise, sensitivity and keen wit.
JOINING THE EXCHANGE
Injury
To get started on the IBM/Special Needs Exchange,
At Children's Seashore House, children with
you must have a computer equipped with a modem and
head injuries benefit from a comprehensive
telecommunications software. If you are not already set
program of rehabilitation that includes:
up to telecommunicate, your local computer store or
intensive phvsical, occupational, and speech
perhaps a knowledgeable friend, can help you select and
therapy in both individual and group settings
install the proper hardware and software.
development of physical, behavioral, self-
care, and communications skills
Next, call or write the IBM/Special Needs Exchange
cognitive retraining, including computer
and request the new member information package. In
technology
addition to some descriptive literature about the
counseling and socialization in a supportive,
Exchange, the package includes a CompuServe IntroPak
caring environment.
and a User Guide to the database of educational
For information about our special program
software. The CompuServe IntroPak provides you with
for children with head injuries, call us.
a temporary personal identification number, a password,
and a $15 usage credit so you can log on to Compuserve
to explore the Exchange (and other CompuServe
services). By the way, there is no cost to join
Children's
CompuServe, but there is a modest charge for your
Seashore House
online time. For most users, the CompuServe network is
just a local phone call away.
A Regional Hospital for Specialized Care and Rehabilitation
Atlaritic City, New Jersey
Philadelphia, Pennsylvania
The User Guide that comes with the information
609-345-5191
215-596-9103
package includes instructions on how to log on to the
dial-in database at LINC headquarters and offers tips on
how to search the system to find the software
information you need.
COSTS OF USING THE EXCHANGE
Looking for that
"No-frill" modems, which are available as internal
injuji I love
Special Gift ?
Give A Sweatshirt Filled With Love !!
or external devices, can be purchased for well under
$200, with internal modems generally costing less than
*many sizes and colors*
external. Full-featured external modems from popular
*50/50 prewashed sweatshirts*
*hand designed w/ white accents*
manufacturers may cost as much as $400 or $500.
*personalized with name if desired*
However, there is little need to buy such a fancy modem.
INFANTS 17.50
$1.00 per shirt
CHILDREN 17.50
ADULTS 19.50
(6,12,18 mos.)
will be given
(2,4,6/8,10/12)
(S.M.L.IL)
A "plain vanilla" internal or external modem will work
red pink grey It. blue
to Easter Seais
green grey red pink royal burgundy
just fine. Modems from mail order firms may be the best
Fold over gift tags
Seasonal Cards W/ Envelopes
2"x2" red on white-blank
Hand stenciled red on white
buy, though a local store may be able to offer the most
10 tags only 2.00 !!
Pkg of 20 Cards 5.50 !!
clip coupon
help in selecting a modem that is right for the user.
select size
personalize
INFANT
CHILD
Telecommunications software can be purchased for
ADULT
COLOR
NAME (ADD 3.00)
PRICE
well under $100. Again, mail order has the best prices,
mail your order
with check
but local stores may be the best source for advice on
or
money order
which program to select. It should be possible to get
TO:
both a modem and software for about $200, maybe less.
The online cost for using CompuServe via the
MaJo's
CompuServe network (which is available in most
PKG or TAGS $
P.O.Box 520902
TOTAL SHIRTS
PKG or CARDS $
medium and large metropolitan areas) is based on an
(LESS 10% 4 OR MORE)
Littleton, Co.
TOTAL $
(COLO.RES ADD 3%)
80162
hourly fee that ranges from $6 to $15 per hour,
CARDS
GRAND TOTAL
depending on the type of modem equipment, plus a $.30
order before Dec. 1st for Christmas
per hour network surcharge. The costs for those who do
please rush my order to:
LOOKING FOR A
NAME
UNIQUE
not have access to a CompuServe network phone line
ADDRESS
FUND RAISER
CITY
WRITE FOR DETAILS
STATE
ZIP
EXCEPTIONAL PARENT / OCTOBER 1988 59
will vary depending on the alternative access method
used. For more information call (401) 725-3973, LINC
1
Parent
Resources.
The cost of using the searchable database set up at
LINC headquarters is the cost of the long distance phone
Award for the
call, which will of course vary depending on the user's
location. The long distance operator can quote the cost
Best Summer Program Involving
per minute to Columbus, Ohio.
Children with Disabilities
While the costs may seem a bit high to some, it may
be helpful to compare the cost, for example, to the cost of
In evaluating entries, judges will consider the
attending a conference in another city -- which would be
following features:
another way for a parent to interact with a large number
Parent involvement in the program
of parents and educational professionals. Also, because
Feasibility of the program
the service is convenient and available 24 hours per day,
(Is it applicable to other communities?)
it is a good value.
Program Effectiveness
Community Involvement
SERVICES WITHOUT MODEMS
Maximum entry length: 2500 words (plus 250-word
There are plenty of information references and
summary). Enter by Oct.31, 1988. Mail entries to:
referral centers ready to serve you. For computer users
who do not have a modem, there is the IBM National
Maxwell J. Schleifer, Editor in Chief,
Support Center for Persons with Disabilities. This major
EXCEPTIONAL PARENT,
center, also sponsored by IBM as a public service,
1168-70 Commonwealth Ave.
responds to computer users who phone or write for
Boston, Mass. 02134.
help. Some of the other information centers that serve
The winners will be announced in the
persons with special needs who are interested in
EXCEPTIONAL PARENT.
assistive technologies are described elsewhere in this
issue of EXCEPTIONAL PARENT. The folks here at
IBM/Special Needs Exchange will be happy to send you
a list of these and other information centers that can help
Now
you.
For more information about the IBM/Special Needs
Available!
Exchange, call or write:
IBM/Special Needs Exchange
EXCEPTIONAL
P.O. Box 434
PARENT
Parenting your child
with a disability
Pawtucket, R.I. 02862
(401)725-3973
16TH
EDUCATION
ISSUE
1988
of Org
Jack Moore is an information
scientist for LINC Resources, Inc.
presently working as project
manager for the IBM/Special
Needs Exchange. He received a
Over 400 bookstores across the United
bachelor's degree in urban affairs
States sell Exceptional Parent including:
from the University of Maryland.
Waldenbooks
Jack and his wife, Deborah
B. Dalton Bookseller
Anderson, live in Pawtucket, R.I.
Encore Bookstores
Little Professor Bookstores
60 EXCEPTIONAL PARENT / OCTOBER 1988
EXCEPTIONAL PARENT LIBRARY AT THE B.U. BOOK STORE MALL
NOW YOU CAN ALSO ORDER ANY BOOK YOU WANT FROM US.
Simply list your selections on the order form below.
CHILDREN WITH SPINA BIFIDA -
OUR SPECIAL CHILD: A GUIDE TO
Disabled,
EARLY INTERVENTION AND
SUCCESSFUL PARENTING OF
PHYSICAL DISABILITY
Female,
PRESCHOOL PROGRAMMING
HANDICAPPED CHILDREN
A PARENT'S GUIDE TO SPINA BIFIDA
edited by G. Gordon Willliamson
by Bette M. Ross. $12.95
and Proud!
& Margery Szczepanski. $25.00
by Beth-Ann Bloom and Edward L.
TRAINING BABYSITTERS &
Seljeskog. $14.95
THE SPECIAL EDUCATION
VOLUNTEERS by Nancy Sharrow.
STORIES OF TEN WOMEN
HANDBOOK: HOW TO GET THE BEST
REACH FOR FITNESS: A SPECIAL
$25.25
WITH DISABILITIES
EDUCATION POSSIBLE FOR YOUR
BOOK OF EXERCISES FOR THE
by Harilyn Ramo
LEARNING DISABLED CHILD
PHYSICALLY CHALLENGED
GAMES CHILDREN PLAY by Manny
with Susan Gushee 0 Mailey and Mary Severance
photographs by Flo Fox
by Kenneth Shore. $14.95
Sternlicht & Abraham Hurwitz.
by Richard Simmons. $10.95
$18.95
GUIDE FOR HELPING CHILDREN WITH
FAMILY INTEREST
EXCEPTIONAL PARENT PRESS
NORMAL & HANDICAPPED CHILDREN
SPINA BIFIDA by Gary Myers. $36.25
IN TIME AND WITH LOVE: CARING
by Wilbur S. Thain, Glendo Casto &
DISABLED, FEMALE AND PROUD!:
FOR THE SPECIAL NEEDS BABY
HOME CARE FOR THE CHRONICALLY
Adrienne Peterson. $22.50
STORIES OF TEN WOMEN WITH
by Marilyn Segal. $12.95
ILL OR DISABLED CHILD;
DISABILITIES by Harilyn Rousso with
BROTHERS & SISTERS: A SPECIAL
A MANUAL AND SOURCEBOOK FOR
Susan Gushee O'Malley and Mary
MANAGING PHYSICAL HANDICAPS
PARENTS AND PROFESSIONALS
PART OF EXCEPTIONAL FAMILIES
Severance. $9.95
by Beverly Fraser. $19.95
by Thomas H. Powell. $18.00
by M.L. Jones. $12.95
THE DISABLED CHILD AND THE
A PARENT'S GUIDE TO HEART
THE WHEELCHAIR CHILD: HOW
MENTAL RETARDATION
FAMILY edited by Maxwell J.
DISORDERS by James H. Moller,
CHILDREN CAN ENJOY LIFE TO ITS
Schleifer and Stanley D. Klein.
William A. Neal, and William R.
NEW PERSPECTIVES ON DOWN
FULLEST by Philippa Russell. $18.95
$15.95
Hoffman. $14.95
SYNDROME by S.M. Pueschel, C.
PHYSICAL DISABILITIES AND HEALTH
Tingey, J.E. Rynders, A.C. Crocker &
MAKING AN EXCEPTIONAL
A FAMILY'S JOURNEY FROM GRIEF by
D.M. Crutcher. $32.95
IMPAIRMENTS: AN INTRODUCTION
DIFFERENCE: ENHANCING THE
Jane Bernstein. $17.95
edited by J. Umbreit. $31.95
IMPACT OF MICROCOMPUTER
DOWN SYNDROME: AN
TECHNOLOGY ON CHILDREN WITH
FINANCIAL PLANNING FOR THE
INTRODUCTION FOR PARENTS (Rev.
CHILDREN WITH HANDICAPS; A
DISABILITIES edited by Harvey
HANDICAPPED by Don P. Holdren.
ed.) by Cliff Cunningham. $15.95
MEDICAL PRIMER by M.L. Batshaw
Pressman. $24.95
$32.50
& Y.M. Perret. $26.00
MUSIC ACTIVITIES FOR RETARDED
SCHOOL-AGE CHILDREN WITH
HANDICAPPED CHILDREN AND
CHILDREN by David R. Ginglend &
COPING WITH CEREBRAL PALSY;
SPECIAL NEEDS: WHAT DO THEY DO
YOUTH; A COMPREHENSIVE
Winifred E. Stiles. $12.95
ANSWERS TO QUESTIONS PARENTS
WHEN THEY'RE NOT IN SCHOOL?
COMMUNITY AND CLINICAL
OFTEN ASK by J. Schleichkorn.
by Dale Fink. $12.95
APPROACH by H.M. Wallace, R.F.
TEACHING THE INFANT WITH DOWN
$23.00
Biehl, A.C. Ogelsby & L. T. Taft.
SYNDROME by Marci J. Hanson.
NEW TITLES
$39.95
$24.50
CARE OF THE NEUROLOGICALLY
HANDICAPPED CHILD by Arthur
SOME JUST CLAP THEIR HANDS:
COMPUTERS, EDUCATION AND
EDUCATION
Prensky & Helen Palkes. $28.95
RAISING A HANDICAPPED CHILD by
SPECIAL NEEDS by Paul Goldenberg.
Margaret Mantle. $12.95
$15.75
STRATEGIES FOR HELPING PARENTS
HEARING/VISION IMPAIRED
OF EXCEPTIONAL CHILDREN by
DOWN SYDROME: A RESOURCE
HANDICAPPED CHILDREN AND
Milton Seligman. $19.95
DEAF-BLIND INFANTS AND CHILDREN
HANDBOOK edited by Carol Tingey.
YOUTH; A COMPREHENSIVE
by J.M. Mclnnes & J.A. Treffry.
$19.50
COMMUNITY AND CLINICAL
SPECIAL EDUCATION NATURALLY
$27.50
APPROACH by H.M. Wallace, R.F.
by Gary M. Robb, Mark D. Havens &
RAISING A HANDICAPPED CHILD -
Biehl, A.C. Ogelsby & L.T. Taft.
Jefrey P. Witman. $18.50
THE HEARING IMPAIRED CHILD IN A
A HELPFUL GUIDE FOR PARENTS OF
$39.95
REGULAR CLASSROOM: PRESCHOOL,
THE PHYSICALLY DISABLED
DUE PROCESS IN SPECIAL
ELEMENTARY, AND SECONDARY
by Charlotte E. Thompson. $17.95
DIRECTORY FOR EXCEPTIONAL
EDUCATION by Milton Budoff.
YEARS edited by Winfred H.
CHILDREN by Porter Sargent. $45.00
$18.95
Northcott. $14.50
THE SPECIAL CHILD: A SOURCE
BOOK FOR PARENTS OF CHILDREN
Please send the following books:
WITH DEVELOPMENTAL DISABILITIES
MAIL ORDER TO:
by Siegfried M. Pueschel, James C.
Boston University Bookstore
QTY.
ITEM/TITLE
UNIT PRICE
TOTAL
Bernier and Leslie E. Weidenman.
Attn: Mail Order - TEP Library
$22.50
660 Beacon St., Boston, MA 02215
SPINAL NETWORK, THE TOTAL
(617) 267-8484
RESOURCE FOR THE WHEELCHAIR
Name
COMMUNITY by Sam Maddox.
$25.95
Address
EDUCATING THE DEVELOPMENTALLY
City
DISABLED; MEETING THE NEEDS OF
State
Zip
CHILDREN AND FAMILIES by Jan S.
Handleman & Sandra L. Harris.
Telephone
$25.00
/ have enclosed my check payable to Boston
NUTRITION AND FEEDING OF THE
University Bookstore or charge to my:
HANDICAPPED CHILD
MasterCard
VISA
American Express
by Iris M. Crump. $22.50
Account Number (All digits)
HANDBOOK OF MICROCOMPUTERS
SHIPPING & HANDLING CHARGES
Sub-Total
IN SPECIAL EDUCATION
ITEMS
U.S.
MA Residents
OUTSIDE U.S.
edited by Michael Behrmann.
Expiration Date
5% Sales Tax
$31.00
Signature
INTERBANK
1
$2.00
$5.00
Shipping
2-3
3.50
6.50
JOURNEY THROUGH GRIEF
TOTAL
by Elizabeth Brooks Farnsworth.
4-9
4.00
7.50
U.S. funds only. These prices are subject to change.
$7.95
Please allow 4-6 weeks for delivery. Returns must be
10+
.50*
7.00*
For each additional item.
made within 4 weeks of delivery. No overseas returns.
EXCEPTIONAL PARENT /OCTOBER 1988 61
FAMILY ALBUM
RANDY
and
ROBERT
by Robert Rutland-Brown
Robert is seven years old and in the class for gifted children at
Chisholm Elementary in New Smyrna Beach, Fla. His older brother
Wesley is twelve and his younger brother Randy is six. Randy is
legally blind and has cerebral palsey.
I have a brother, Randy. He just turned five. My name is
Robert. Randy is handicapped, which makes me sad. We still do
fun things together. We share a room. Whenever he wakes up,
he says "Dirt, up!" (Randy can't pronounce Robert so he calls me
"Dirt.")
Randy can only see a little bit. Randy has trouble moving his
right hand. He can't walk yet, so he crawls around on the floor.
He has a pair of special shoes that might help him learn to walk.
Randy and I play "mommy and baby" together. Whoever is
the mommy takes care of the baby, changes his diaper, gives him
a drink, and sometimes reads him a book. Another game we
play is called the taste game. I give him different kinds of food.
If he knows what it is he says the name of the food. If he doesn't
know the name of the food, or doesn't like it, he says "Yuck."
Randy has a battery operated car he can drive around in the
front yard. The only problem is that he might go in the street or
run over the neighbors' plants, so I stay out there and keep an
eye on Randy. Randy's a great swimmer. He can swim the
width of the pool without a breath. But I'm always scared that
he might not know where he is or get tired and drown, so I stay
close to him.
I'm sad that Randy's handicapped, but I know there's nothing
I can do about it. My friends think Randy's special because other
little sisters and brothers are ordinary sisters or brothers. Randy
will always be special to me.
62 EXCEPTIONAL PARENT / OCTOBER 1988
FUN STUFF
Your
IN
1. Keep own
calendar of
child
YOUR CHILD'S
school and
can;
home events
ROOM
by D.J. Orr
Some children do not" "pick-up" new skills as easily
as other children. They often need to review and
practice skills before the skill is actually learned.
2. Organize drawers and
shoes (may label drawers
with color coded labels)
,
3. Match clothes
and pick own
clothes to wear
,
4 Roll matching Socks
5. Set own alarm clock
6. Watch a clock to know
7. Match shoes
when to eat, play, etc.
EXCEPTIONAL PARENT /OCTOBER 1988 63
FROM THE BOOKSHELF
Nature and the cyclical patterns
didn't intend for the words to be
Elizabeth Brooks Farnsworth
which usher in rebirth. In the
taken literally. Giving birth is an
aftermath of intense grief, new
emotional experience, the
JOURNEY
values emerged. No, I would never
culmination of months of waiting
have chosen this way, but I want to
and preparation. When all is not as
THROUGH
survive. Desire to survive is the
expected, a very real grief process is
GRIEF
necessary ingredient for healing to
set off. Those in the helping
begin.
professions need to be aware of this
I believe we can create
and to be very careful in dealing
meaning, meaning which is rich
with parents during this period. We
and holistic, if we so choose. The
need other people, professionals
message is: EVEN IN THE WORST
included, to hold our baby, to show
OF CIRCUMSTANCES, WE HAVE
warmth and compassion for each
SOME CHOICES! The choices are
member of the family. We are
difficult. They do not come by
thrust into crisis; it takes time and
chance. Before choices even become
support for adaptation to occur. We
evident, we must endure many
need to be told that our feelings,
lonely hours of pain and hurt. The
ALL of our feelings, are normal.
Foreword by Elisabeth Kübler-Ross
message here is not to pile on
A week later, the doctor's
additional "shoulds" and "oughts."
diagnosis was confirmed--Down
This story is shared to give hope. It
syndrome. We were stunned and
This is the true story of a crisis
is shared to give permission to
enraged that this could have
in our family. Actually, there were
grieve. It is also the culmination of
happened to us, to our family, to
two crises -- Thomas' birth and
a personal goal - to create meaning
our child. I wept and cursed God,
Thomas' death. Thomas had Down
in Thomas' life just as it was. It is a
the obstetrician, and anyone else
syndrome complicated by heart
love story. It is a story about
who seemed to be an easy target. I
disease. His birth touched off a very
learning to forgive life and
just did not see how this could have
real, very painful grief process over
moving on.
happened to us. I didn't know how
the loss of the expected child. Grief
This excerpt was reprinted with
I could care for a child with special
is not bad. It is necessary --
permission from Journey Through
needs. I'd had virtually no
necessary to begin a transformation
Grief by Elizabeth Brooks Farnsworth.
experience with persons with
process in which we construct a
Susan Hunter Publishing, Atlanta,
disabilities; I had much to learn,
new identity. In this case, we were
1988. Readers can purchase copies of
much growing up to do. Gently, my
challenged to create an identity
the book through the Exceptional
kind husband suggested, "We can
which included being the parents of
Parent Library, see page 61.
do it together." As I watched four-
a child with a developmental
Mrs. Farnsworth has also shared
year-old Michael respond to his
disability. We began to learn the
the following story about her family
brother, somehow, I, too, came to
meaning of patience. We also knew
with us.
see that we had, in fact, had a baby,
frustration. In fury, we learned
not a label.
to love.
Our grief began the day our
As I nursed and changed
When Thomas died at the age
second son, Thomas David
Thomas, bathed him, and read to
of seven months, he died a baby -- a
Farnsworth, was born--October 13,
both boys together, the pain
very lovable, cuddly baby. The
1984. My husband, Dave, and I felt
diminished. Once I realized that we
crisis of his death stripped away our
prepared and elated about the
were still very much a family, I
coping skills. It forced us to begin
arrival of our second child, the child
began to rise up, to see that we had
the hard work of adaptation anew.
who would complete our family.
so much to offer Thomas and that
In a heartbeat, we had become a
Michael, who was four years old,
he had a lot to offer us, as well.
bereaved family. Once again, our
also seemed excited and ready for
A strong believer in
emotions took roller-coaster rides.
the new arrival. Less than one hour
bibliotherapy, I ordered books,
Over time, healing became evident
after Thomas' speedy,
newsletters, and tapes about
as I charted the journey through
uncomplicated birth, the
children with Down syndrome.
grief in a lovely cloth-covered
obstetrician appeared at my bedside
I took nothing for granted with
journal given to me by a dear friend,
and somberly said, "Your baby
Thomas, and his every
Toni Doan. In suffering, we began
looks a little funny."
accomplishment surprised and
to see our strength. We learned to
His words cut me to the core,
delighted me. While Michael had
rejoice in the infinite beauty of
even though, rationally, I knew he
presented expected delights,
64 EXCEPTIONAL PARENT OCTOBER 1988
FROM THE BOOKSHELF
Thomas offered a bittersweet
wasn't growing. This was a bitter
trying to keep Thomas away from
challenge. I became involved with
pill for me to swallow. Another
viruses which could be deadly with
other parents of special children,
chest x-ray revealed the problem.
his heart disease. Between
which was very helpful. They
Thomas' heart clearly was enlarged.
Christmas and April, Thomas did
demonstrated new coping skills and
A more extensive test, the echo-
grow and develop. He'd giggle and
attitudes. The old excitement I
cardiogram, was done to reveal the
COO and bat at objects. He became a
thought I had lost forever began to
specific problem areas in Thomas'
full-fledged member of our family.
creep back into my life. Yet, there
heart. Essentially, there were two
With compassionate, loving support
were days that I backslid. I learned
holes in his heart causing increased
from an early intervention worker, I
firsthand that no one is perfect. It
blood flow, which explained his
began to feel warmth and pride over
was as though Thomas gave me
failure to gain weight.
Thomas. He became quite a little
permission to accept my own
We'd adapted somewhat to the
charmer.
limitations, too.
fact that Thomas had Down
In April, Thomas underwent
When I took Thomas to the
syndrome; then we were confronted
open heart surgery. We were ready
pediatrician for his two-month
with the reality of a major disease
and optimistic. Hospital life
checkup, I was dumbfounded and
which absolutely required surgery.
required new coping skills.
crestfallen that he had not gained
We went home with medications
Everything in our lives was askew.
weight as a result of my dedicated
and new instructions for feeding an
Our family was separated, because I
parenting. Emphatically, I told the
infant. The old rules didn't work.
spent time with Thomas so that I
pediatrician that something MUST
Breast-feeding was not enough.
could nurse, stimulate, and
be wrong. He suspected an
Thomas needed extra formula after
love him.
underlying reason for Thomas'
nursing, as well as high calorie
We worked together as a
failure to gain weight.
supplements. Again, we grieved.
family, even though we faced
We were accustomed to being
Logically, we knew our parenting
physical separations. When you
able to solve problems by putting
wasn't at fault, but emotionally we
have no choice, sometimes you
forth our best efforts. Having
were facing our limitations head-on.
surprise yourself with new
nursed successfully before, I could
Life went on. Michael went to
strengths and attitudes.
not understand why my baby
nursery school. I stayed at home,
Hospital procedures and
WORKOUT
U.S.A.
THE TIME IS NOW
Bancroft
A Tradition of Excellence
Haddonfield, NJ
Planning the future for the individual with
Mullica Hill, NJ
developmental disabilities is a Bancroft specialty.
3
Owls Head, ME
(609) 429-0010
EXCEPTIONAL PARENT /OCTOBER 1988 65
FROM THE BOOKSHELF
routines were numerous. On good
envelop me and sustain me. I came
have strengths and that we all
days, I enjoyed meeting new and
to realize that I could not function
respond to love and affirmation.
stimulating people and becoming
without respite and that I need
If we can let go of our anger
literate on the details of Thomas'
comfort and relaxation.
over the unfairness of life, we can
condition. On bad days, the strain
Thomas improved greatly after
discover the pleasure. A tragic loss
wore me down; and I wanted
the surgery, and we thought we
occurred. I cannot change that. The
everyone to go away and leave us
were homeward bound. Then, he
only choice I have is how I will
alone. Separations, worry, rapidly
contracted a virus. His little body
respond to this crisis.
changing conditions, and lack of
fought and fought; but it was the
With my Compassionate
normalcy and stability change a
final insult. He had endured so
Friends and other special people, I
person.
much. Even now, there are days I
have come to realize that I am not
What I saw and learned in that
am flooded with hurt. When a child
alone. Others hurt. Others learn to
hospital! Babies who never, ever
dies, part of a family's future dies
rise above the hurt. Others learn to
left those walls. I become angry
also. I suspect such days will come
live in a more loving way. Others
when someone tells me that such
and go throughout my lifetime. Yet,
feel the hurt in each of us and learn
difficulties are "God's will." Surely,
I do know that he gave his all, and
to reach out to help. I can too.
God does not plan such things. I
we gave our all.
I will never be the same.
saw too much to believe that; yet, I
I believe something new can
Thomas taught me to be a survivor
also saw and felt what surely must
arise from sorrow. No, the pain
and to expand my possibilities. I
be the love of God in a greater way
doesn't magically vanish, never to
weep for every parent who
than ever before.
appear again. Pain is part of life.
experiences the death of a child. It
There were unexpected gifts. I
All of our lives have pain. There are
is unnatural. It is maddening.
met many loving, wonderful human
days that I feel heavy with sadness
None of us would choose to grow in
beings I never would have met any
over Thomas' death; there are days I
this way, but it is my hope that
other way. I learned new ways of
feel richer than I ever dreamed
another lonely, bewildered parent
coping with stress. I invented my
possible. Thomas taught me new
will feel validated in some way by
own form of mind control -- I
attitudes, to look at the person
the sharing of my journey
allowed the beauty of nature to
behind the label, to see that all of us
through grief.
R
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66 EXCEPTIONAL PARENT /OCTOBER 1988
WHAT'S HAPPENING
CONNSENSE '89
Disabilities, by Carl Brown and
disabilities. They represent unique
Colleagues (1987). This reference
circumstances and illustrate the
The sixth annual conference of
handbook explains the process of
excitement that comes when a
the Connecticut Special Education
adapting computer technology on
student is given the right combina-
Network for Software Evaluation
the community college campus for
tion of hardware, adaptive equip-
will be held on July 11-14, 1989, at
students with disabilities. Chapters
ment and software for learning and
the University of Connecticut, in
include creating access and adapta-
communication. Special education
Storrs, Conn. Proposals are being
tions for students with visual,
technology in these programs is
sought on a wide range of topics
orthopedic and learning disabilities.
successful because it is used to
having to do with technology for
Profiles of the center director and
enhance individual learning,
those with disabilities. We are
successful users are combined with
mobility or sensory needs in ways
particularly interested in successful
case studies to provide a useful
unmatched by other methods.
programs and strategies.
spectrum of examples. A limited
Moreover, once students begin to
Please write for a proposal
number of printed copies are
use technology appropriately, they
format. For more information
available free from the High Tech
experience greater independence.
contact: Chauncy N. Rucker,
Center for the Disabled, California
UConn Special Education Center
Community Colleges, 1107 Ninth
Public/Private Technology Project
Technology Lab, 249 Glenbrook
St., Sacramento, Calif. 95914. The
The innovative Special
Road, U-64, Storrs, Conn. 06268, or
text is available on IBM-formatted
Education Technology Center in
call (203) 486-4031. The deadline for
floppy disk by arrangement with
Fairfax County, Va., is a blossoming
proposals is November 15, 1988.
the author.
initiative of a school district/
business sector partnership that has
NEW PUBLICATIONS ON
TECHNOLOGY-RELATED
parlayed local know-how into a
TECHNOLOGY
PROGRAMS
system-wide resource where the
payoffs are educational. Barely one
Rehabilitation Technology Service
The following two programs
year old, the Technology Center
Delivery: A Practical Guide, by
serve children of different ages and
provides individualized student
RESNA, Association for the
Advancement of Rehabilitation
Technology, is a state-of-the-art
SNUG AS A BUG IN A
SNUG SEAT !
resource document on service
delivery. The guide was written
based on practical experience by
rehabilitation-technology service
delivery providers.
This guide does not give
dogmatic "recipes for success" but
instead emphasizes the necessary
questions to be addressed in
planning, developing and
implementing a technology service
delivery program, as well as
increasing the effectiveness of
existing programs. It also includes
experience-based "rules of thumb,"
and a chapter that describes other
A completely adjustable seating system designed for infants and small
resources available and where to
children that provides proper positioning, without looking like "special"
find them.
equipment. The Snug Seat enables a therapist or other qualified expert, to
Copies of the guide cost $18
fit a child on site, place the cover over the shell, and begin use immediately.
and can be obtained by writing
In addition, the Snug Seat is versatile enough to be used as a car seat, pop
RESNA, Suite 700, 1101 Connecticut
into a stroller, or attach to a trolley for the classroom or home. For more
Ave. N.W., Washington, D.C. 20036
information, please call or write:
or by calling (202) 857-1199.
SNUG SEAT, INC.
Computer Access in Higher
P.O. BOX 1141
648-B MATTHEWS-MINT HILL RD.
Education for Students with
MATTHEWS, NC 28106
(704) 847-0772
EXCEPTIONAL PARENT /OCTOBER 1988 67
WHAT'S HAPPENING
assessments, equipment and train-
For example, a bright Fairfax
cannot use computer equipment
ing for youngsters and professional
County student who cannot make
such as a standard keyboard. The
staff.
the physical movements needed to
staff has found that social inter-
Thanks to seed money totalling
write is no longer dictating to a
action, play and language have been
$200,000 given by local businesses
teacher's aide who would then type
enhanced through the use of
and industry to the Fairfax County
the final draft. Outfitted by the
computer software programs.
Public Schools Foundation, special
center staff with a computer and a
The computer is the "common
education technology is becoming
single switch that enables him to
denominator or tool" that helps the
an integral part of the instructional
bypass the keyboard, he now
children reach beyond physical
program for students with
prepares his own work.
limitations. Students work with
disabilities.
computers twice weekly in two
Professionals evaluate referrals,
Technological Early Intervention
small groups: one for children 18
prescribe particular devices, train
Program
months to three years and another
staff and collect computer
The UCLA Intervention
for three- to five-year-olds.
hardware, adaptive equipment and
Program for Handicapped Children
Not yet ready for keyboarding
software that go toward solving
serves students from infancy to five
skills, preschoolers use micro-
specific problems children face in
years of age who are born with
computers adapted with devices
the classroom.
cerebral palsy, Down syndrome,
that suit individual needs. Some
Public funds allocated for
spina bifida, chromosomal disorders
input information using single
special education technology have
and other birth defects. What is
switches, while others work with
been supplemented with foundation
special about this early intervention
nontraditional keyboards that have
funds donated by area corporations.
program is a commitment to appro-
a touch-sensitive surface. Software
The extra monies help to increase
priate technology use and the
designed especially for use with a
the equipment inventory; and as a
production of original software to
power pad allows those as young as
result, a greater number of students
help children learn.
18 months to use a microcomputer.
can "borrow" equipment for use at
The technology project aids
The UCLA Intervention
their school.
young, nonverbal readers who
Program's Microcomputer Project
"This book
could well be the difference between a mentally retarded
COLLEGE-HILL PRESS
person becoming a law abiding citizen
[and] a criminal being taken care of
Call 800/343-9204 to ORDER,
by society. The approach is effective, and very human."
or to receive a FREE CATALOG!
--Virginia Satir, Ph.D., One of America's Foremost Family Therapists
SEXUALITY AND THE MENTALLY RETARDED
DOWN SYNDROME:
A Clinical and Therapeutic Guidebook
A Resource Handbook
By Rosalyn Kramer Monat, M.Ed.
Edited by Carol Tingey, Ph.D., F.A.A.M.R.,
Early Intervention Research Institute, Utah
Counselors, educators, administrators, and therapists, relatives and friends, legislators
and advocates--everyone concerned with the social-sexual rights of persons with mental
State University
retardation--will recognize the extraordinary value of this intensely practical volume.
Personal in approach and direct in style, Down Syndrome is a
Here is a thoroughly professional, pragmatic guide on sex counseling and sex education
different approach to Down's. Separate sections focus on these
for individuals functioning at all levels. Written clearly, with drawings to use in teaching
areas: Family; Total Development; Education; and Social needs.
children about sex.
This lovely and easy-to-read book gives you a lot of information
1982, 150 pages, illustrated. Paper, #578207, $20.50.
in a small space. Several chapters are written by parents of
children with Down's.
COMPETITIVE JOB-FINDING GUIDE FOR
1988, 240 pages. Paper, #845620, $19.50.
PERSONS WITH HANDICAPS
COMPETITIVE
JOB-FINDING GUIDE
By Chet Muklewicz, Ed.D., Marywood College,
FOR PERSONS
Also from Muklewicz & Bender:
Scranton, Pennsylvania, & Michael Bender, Ed.D.,
WITH HANDICAPS
JOB-FINDER'S
JOB FINDER'S WORKBOOK
The Kennedy Institute, & The Johns Hopkins School
WORKBOOK
of Medicine
CHIT MURCLEWICZ, EDD AND
Contains more than 20 helpful forms for the
MICHAEL BENDER, ED.D.
Lack of competitive job-finding skills keeps many persons with
job-seeker. These clear, easy-to-follow
handicaps out of the labor market, despite desire to work. Chet
CHET MUKLEWICZ, Ed.D.
forms help clients get and keep good jobs.
A search foremployment
Muklewicz, a career and employment counselor to persons with
MICHAEL BENDER, Ed.D.
1988, 60 pages per workbook. Paper,
handicaps, and Michael Bender, a special educator, offer solutions to
#589152, $35.00 for set of 10
real problems faced by persons with various handicaps, and present
NAME
workbooks. (Sold as set only.)
proven strategies for finding and keeping jobs. This book contains
DATE
easy-to-follow instructions that will help you help your disabled
1988, 216 pages.
person to find and keep a good job!
Paper, #589233,
$29.50.
332288
68
EXCEPTIONAL
PARENT / OCTOBER 1988
WHAT'S HAPPENING
has published a beginning booklet
COMPUTER LEARNING
for new technology users entitled
MONTH
DURALINE
High Tech For Me. It is available for
$2. The LAUSD/UCLA
October is Computer Learning
MEDICAL
Microcomputer Handout that lists
Month (CLM), a public service/
technology hardware, software and
public education campaign that
PRODUCTS
resources effective for their students
promotes computer literacy and the
is also $2. Software titles, which
benefits of technology.
require the Apple II+, Ile, or IIGS
To support these objectives,
Color Monitor and Echo speech
CLM and its sponsors will produce
synthesizer, can be purchased for
a variety of materials for several
$16 each.
different audiences. For parents
For a listing write: Kit Kehr,
and families, CLM will distribute a
UCLA Intervention Program, 1000
Family Activities Guide, which
Veteran Ave., 23-10 Rehab, Los
contains dozens of activities for
Angeles, Calif. 90024. Note:
learning, sharing and having fun
Purchase orders cannot be accepted.
with computers, and a book,
Checks should be made payable to
Preparing for a Career in the 21st
UCLA Intervention Program.
Century, which will focus on ways
computers are used in different
PUBLIC TRANSIT ACCESS
vocations. In addition, CLM will
PROJECT
produce another book, Everything
You Need to Know (but were afraid to
Personalized Service
The National Easter Seal
ask your kids) About Computer
For Incontinent Care
Society has been chosen as the
Learning, designed to help parents
administering agency for the Public
learn about the value of computers
DURALINE offers dependable pro-
Transit Access Project, the effort of
as educational tools.
duct distribution services to people
the Urban Mass Transportation
For more information on CLM
with bowel or bladder control prob-
Administration (UMTA) to improve
'88, write to: Computer Learning
lems. Order supplies without leaving
your home. Prompt delivery to your
access for people with disabilities.
Month, P.O. Box 60007, Palo Alto,
door via UPS.
The Public Transit Access
Calif. 94306-0967.
Nationally known brands in full
Project is designed to meet the
range of sizes.
Ostomy and urological supplies
increasing need for accessible public
NEW COMPUTER
available.
transportation for people with
ACCESSIBILITY LAW
TOLL FREE ordering.
disabilities. Representatives of the
Monthly newsletter "Friends" -
keeps you abreast of new pro-
transit industry, organizations of
Section 508 of Public Law 99-
ducts, special sales, etc...
public transit operators and people
506, the Rehabilitation Act
C.O.D., MasterCard, Discover,
with disabilities will cooperate in
Amendments of 1986, goes into
VISA or personal check accepted.
Medicaid and Medicare accepted
developing a model program for
effect this month and requires that
for many states.
use across the nation.
the federal government purchase
FREE samples available.
The model program will first be
Automatic shipments.
electronic office equipment that is
Business hours 9 to 5 PM E.S.T.
implemented in as many as six
usable by people with disabilities.
Monday thru Friday.
demonstration sites, coordinated by
While this act may seem to
Orders shipped within 24 hours.
local transit agencies and disability
have a limited scope, all people with
Phone Toll Free
organizations such as Easter Seals
disabilities will ultimately benefit
1-800-654-3376
and independent-living centers.
from the workplace initiative.
This action by UMTA was the result
LOCAL 419-943-2044
Since the federal government is
FAX 419-943-3637
of a mandate from Congress to find
the largest buyer of electronic office
Or write
ways to better accommodate the
equipment and the primary market
for price sheet/order form/catalog:
transportation needs of people with
for many computer companies, the
disabilities.
industry can be expected to begin
For information contact the
making their product lines more
DMP
National Easter Seal Society, 2023
accessible to people with disabilities
West Ogden Ave., Chicago, Ill.
rather than risk losing the business
DURALINE MEDICAL PRODUCTS
60612, (312)243-8400.
of one of their largest customers.
7-13 E. MAIN
P.O. 67
Leipsic, OH 45856
Formerly DURA MED PRODUCTS
EXCEPTIONAL PARENT / OCTOBER 1988 69
FAMILY LIFE
"Jim and I have different
ways of handling money."
Family styles of managing money
"T
he argument began when
the individual help and small
Repairs go undone because Jim says
our thirteen-year-old son,
classes in the public school.
he'll get around to them. He
Ricky, announced to my
"At the time, Jim never asked
doesn't believe it, but my daughters
husband and I that he was not going
me what I thought. Ricky began to
and I are ashamed to bring friends
to attend the Queens School this
tell Jim that nobody knew what we
home.
fall." Mrs. Quinn, a dark-haired
could afford and that everybody felt
"This time Jim actually slapped
woman in her mid-forties spoke
there were other important things
Ricky. I know how upset he must
quietly and tearfully. "Ricky
that weren't getting done because of
have been because it is the first time
thought that our family could not
the private school tuition.
he has ever hit any of our children.
afford to send him to private school
Ricky ran off to his room crying.
because we had already spent a
Then Jim and I began an argument
great deal of money to help him.
that still hasn't ended. He blames
Besides, he wanted to return to the
me for the children's attitude. He
public junior high school with his
thinks nobody appreciates him.
old friends from the neighborhood.
He's wrong. The kids love him and
"Ricky has been the only
are worried because he works so
member of our family who has
hard. He always tells us that we've
always been willing to talk about
never lacked for anything and that
money. In the spring, my husband,
we'll get through. He says that the
Jim, had a big fight with Ricky
children get their ideas about lack of
when he wanted to have a
money from me -- that's probably
newspaper route. Jim told him to
true.
demonstrate some responsibility in
"Jim and I have different ways
his school work before taking on
of handling money. We had both
anything else. Ricky told Jim that
saved a good bit of money before
he punished him all the time by not
I am ashamed to bring
we got married, and I continued to
giving him bus allowance. Ricky
work until Priscilla was born. In
wanted to be free of that.
friends home.
those days, we were living in a
"Jim was out of control. He
small apartment.
came as close to hitting Ricky as he
"Ricky then raised the thorny
"When I became pregnant with
ever had.
issue that my daughters, Jeannie,
Jeannie we both agreed that it was
"First, Jim tried to explain to
who is fifteen, and Priscilla, who is
time to get a house. I think the
Ricky that we had had a serious
eighteen, and I have tried to speak
money thing started back then. We
discussion about the kind of school
to Jim about -- our house. We
had different views on what kind of
he needed. He explained that we
haven't really done anything for our
a house to get. I wanted a house
didn't think Ricky could get the
house for over a decade.
with a back yard and space. I recall
kind of education that would be
Everything seems to be in disrepair.
that Jim only seemed to be
most helpful to him in our local
Almost everything we have is old or
interested in a place to live that
junior high school. He wouldn't get
fading. The furniture is collapsing.
didn't require a lot of upkeep. After
70 EXCEPTIONAL PARENT /OCTOBER 1988
FAMILY LIFE
looking around, we finally settled
fixing-up is a necessity not an
things for the house, the children
on a large four-bedroom house that
option. To a certain extent, that's
and me. And I always feel very
was run down. I had hoped that
where the issue of money comes in.
troubled by that. I think he expects
over the years we could fix it up and
"I was brought up to keep
us to be very excited about his
really have something very nice.
careful track of money and try to
purchases, but he doesn't
It's almost happened, but not quite.
budget everything; Jim was not. So
understand how we feel. I can't get
"When Ricky was born our
I'm never sure exactly how much
angry with him for doing something
expenses increased. At about the
money we have or what we can
for us, but he never asks us what we
same time, Jim got a job promotion,
really do. Each fall we start with
really need or want. He buys what
but it took much more of his time
Jim telling me that we're going to
he feels we need. That's the way he
and energy. There's no question
have to be very careful this year
was brought up. Jim's father is a
that Jim works very hard. He's
because taxes and repairs are going
nice guy, but not dependable. He's
exhausted at the end of the day.
up and he's not sure how well his
either throwing money around or
And so, he has had less time and
sales will be this year. So I'm
barely making ends meet. Jim and
energy to do the kind of fixing up
always a little scared and careful
his brothers always had to bring
that would get things going or we
about my budget. Then, all of a
money home to his mother -- he
could afford. Now I think the
sudden, I find that Jim's bought
still does.
YP
VIGA
SE
1
Ro
pharl
EXCEPTIONAL PARENT / OCTOBER 1988 71
FAMILY LIFE
"I'm working part time as a
Since he wanted her to be practical
WHEN THEY
secretary. I waited until last year
and be a school teacher, he wouldn't
when Ricky started junior high.
give her any money unless she took
TRAVEL THE
When we start to argue about
the education courses. She taught
money Jim says that if I wanted
school for several years before and
ROAD TO
more, I could work more. I know I
after we were married. She never
could help him with his accounts --
really liked it -- and even now she is
INDEPENDENCE,
I'm a better bookkeeper than the
discussing some other career. I
one he has now. I'd do a better job
have made it clear from the
MAKE SURE
than she does. If I mention it, he
beginning that I would help her
says he doesn't want my nose in his
change careers and that she should
THEY GO WITH
business. I always find that very
do something that she enjoys.
insulting.
I have worked hard to take
EXPERIENCE.
"I told him that the children
care of everyone. Sometimes I think
think our marriage is in terrible
nobody cares -- neither Louise nor
shape. I'm beginning to agree with
my kids. And Louise is right. I
them. I think this all finally reached
think she eggs them on about me. I
him when my daughter heard our
have helped her more than she
argument and came in-the room to
appreciates.
tell him it was time to treat me
better. That's what brought us
here."
"T
o tell you the truth, I'm
bewildered by all of
this." Mr. Quinn, a tall,
slender man in his late forties
looked very tired and spoke with a
Handicapped Childrens Technological Services
sense of despair. "Louise and I have
pioneered in the technology of mechanical
a good marriage. At least I think we
devices to help handicapped children and adults
have the same values and the same
gain independence and control over their
environment. The Active Stimulation System®
expectations of life.
includes programmers, timers, switches, battery
"We've always considered the
operated toys and accessories.
Our devices are based on the Active Stimula-
children first when taking vacations
tion Program curriculum. Created by Dr.
and buying things. We talk about
Edmund Zuromski, this renowned program
things we need and would like to
teaches behaviors ranging from basic motor
movements to precommunicative skills, based
have. But it never fails, when I
on positive reinforcement. Over 5,000
come home with something new for
professionals have been trained in using the
Everybody seems to
the house -- like the VCR I bought
ASP Model which is in wide use in North
two weeks ago -- she screams and
be mad at me.
America.
You can count on Active Stimulation Devices
shouts that I never discussed it with
which have been tested in the field for many
her. I thought we had. This
"Her father has been very sick
years. They're based on one of the most
respected learning programs in use today.
happens over and over again.
the last four years. I know how
Send today for a free catalog of Active
"I discussed Ricky's private
worried she is. She has spent a lot
Stimulation Devices and a brochure describing
school expenses with Louise in great
of time and money going to see her
the Active Stimulation Program Model. Write:
HCTS, Box 7, Foster, RI 02825. 401-861-3444
detail. I made it clear that we could
parents. I have rarely complained
afford the tuition.
and have been supportive of the
"Louise gets a lot of her
kids. I watch them at school plays
attitudes about money from her
and sports and go to PTA meetings.
father and sister. Her father made
I think her family takes advantage
his daughters account for every
of her. If I mention it, she doesn't
penny they spent. He used money
talk to me for a day or two.
as a weapon. If they wanted
"I'm in the insurance business.
something, he would make them do
It's very difficult for me to predict
A basic Active
Stimulation System
something that he wanted.
what I'm going to make each year.
including Barrel Switch,
Programmer and Battery
"When Louise wanted to go to
So I always try to be cautious,
Operated Toy.
college, she wanted to study art.
because some years are good and
72
EXCEPTIONAL PARENT /OCTOBER 1988
FAMILY LIFE
some are bad. Toward the end of
different family attitudes about
the year, I can tally my
money with them. A major task
commissions. There's nothing in
during the first stage of a marriage
NEW
this world that I like more than my
is to adjust each partner's style to fit
wife and my family. Right now
into their new life together.
everybody seems to be mad at me
Mrs. Quinn's family was
FORTHCOMING
about the money, and I don't know
reasonably affluent. Her father
what to do."
earned more than enough money to
manage the everyday living
expenses and provide for leisure
For Children
r. and Mrs. Quinn came to
and recreational activities. He was
M
discuss a dispute between
very orderly and expected his wife
The Flying Fingers Club
them that centered around
and his children to keep systematic
Jean F. Andrews
their son attending private school.
records of the money they spent.
The Mystery of the Disappearing
The dispute began when Ricky
Although he could be generous, he
Newspapers, the first book in a
Quinn did not want to add to the
would refuse to finance his
series of mystery adventures for
family's financial burden by attend-
childrens' activities if they did not
children (ages 8-11), features a
ing the school and asked to go to his
follow his advice.
learning-disabled boy and his
public junior high school. In fact,
Mr. Quinn's family's finances
hearing-impaired friend.
the management of the finances was
were much less predictable. His
104 pages
ISBN
0-930323-44-0
$3.95
a long-standing problem for the
father was a salesman who lost
family. Mrs. Quinn thought her
many jobs. Because he worked on
husband was selfish and irrespon-
commission, it was never clear until
For Parents
sible about money. She felt that he
the end of the year how much
never consulted her about the
money Mr. Quinn's father would
Ben's Story
family's financial priorities and was
earn. Mr. Quinn felt that his father
afraid to discuss any of these
A Deaf Child's Right to Sign
was very generous with the money
Lorraine Fletcher
matters with him. She was afraid he
that he did have, and although Mr.
would attack her as well as afraid
Quinn could be disappointed when
Ben's Story explores the struggles
that she would offend him.
his father's income fell short, he felt
of a young couple to get sign lan-
Mr. Quinn felt misunderstood
guage instruction for their young
that his family was a very close one.
son. Inspiring reading.
and unappreciated. He thought that
Because of his father's financial
he had continually discussed the
difficulties, Mr. Quinn and his
272 pages
ISBN 0-930323-47-5
$7.95
family financial situation and how
brothers began working part-time
he was spending the money with
jobs early in their lives. Mr. Quinn
You and Your Hearing-
his wife. He also felt that over a
felt that he had not been able to go
Impaired Child
period of several years she had
with his friends to parties or on trips
ASelf-Instructional Guide for Parents
become less and less supportive of
because of this responsibility.
John W. Adams
him. He thought that his wife's
He was very pleased with the
An indispensable guide for parents
involvement with the illness of her
amount of money he was earning
of hearing-impaired children. This
father, and the responsibility that
when he got married and felt that he
friendly book gives parents insight
she had to take as a result, had
would never have to subject his
and practical advice.
made her less available to deal with
own wife and children to such
150 pages
ISBN 0-930323-40-8
$9.95
the everyday problems of their
financial restrictions. Because of her
Available in November
family. At the same time, he felt he
orderly presentation of the
could not count on her to deal with
information, Mr. Quinn was
difficult matters.
delighted when his wife took over
800 FLORIDA AVENUE, N.E.
Mrs. Quinn felt that her
the management of the family
WASHINGTON, DC 20002
husband was incapable of change
expenses. She felt pleased at that
and was not sure how much longer
time because he gave her great
1-800-451-1073 (V/TDD)
she could adapt to the way he lived
latitude and responsibility about
and worked. Mr. Quinn felt
making financial decisions, even
bewildered and attacked.
though they were never fully
Each family develops their style
discussed.
GALLAUDET
of managing money. When two
The changing stages of family
people marry, they bring their
life bring different financial
university press
EXCEPTIONAL PARENT / OCTOBER 1988 73
FAMILY LIFE
demands. Whatever money
was. He also had gone into a
questioned him about their ability to
management style a family develops
business, like his father, where he
pay bills.
early is the one they ordinarily turn
was never sure how much money
Children learn about their
to, but the nature of decisions may
he would have to spend.
'family's attitude towards money
have to change. After the Quinns'
Although each year he had
and its meaning over many years,
third child, Ricky, was born, they
mentioned his concerns about
even when such attitudes are not
were faced with considerable extra
meeting their financial obligations
discussed. The Quinn children were
expense for his medical care during
to his wife, he had not understood
aware of their father's concern and
the first four years of his life.
that, in her eyes, this had not been a
their mother's distress. They
Although some of this was covered
full discussion. Whenever she
recognized that their father was a
by their medical insurance, a good
asked questions about expenditures
very generous man and that he tried
bit was not. As he entered school,
that were made or not made, he
to give them whatever they wanted.
these expenses continued for
interpreted this as a demonstration
But as the children got older,
various remedial programs. The
of her lack of trust.
especially as the older daughters
crisis came when Ricky refused to
Mrs. Quinn found her own
became teenagers, they wanted to
attend the private school because of
style of dealing with financial
have a greater say as to how money
its expense.
matters completely undermined.
was spent. They also understood
Money had always had special
She felt her husband did not discuss
that criticizing their father's gifts
meaning to both Mr. and Mrs.
finances with her. In addition, he
hurt the father they loved.
Quinn. The extra demands on the
had taken away her once regular
Each family has someone who
family finances because of Ricky
responsibility for paying the bills.
speaks for the family's concerns. In
worried both of them. Mr. Quinn
She always felt that he was saying
this case, Ricky was the one who felt
began to fear that he was going to
there was not enough money. From
the most comfortable talking about
place his own family in the same
time to time he would even tell her
the family's financial concerns. This
position in which his father had
that some bills could be paid and
was especially difficult for Mr.
placed him. Initially, he was unable
others could not be paid. But she
Quinn, who felt that he had never
to tell his wife how frightened he
would face his anger when she
been able to ask his father for very
BRIGHTEN YOUR HOLIDAY.
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Make checks payable and
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designed by children and adults with
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wishes to family, friends and business
Lubbock, Tx 79491
associates - every one you want to
remember.
Ship to:
And when you send these cards,
Order before December 1.
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representing six million Americans with
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City
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with impressive gold foil seals for every
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Additional card designs available.
ARC is an IRS, non-profit, charitable organization.
74
EXCEPTIONAL
PARENT / OCTOBER 1988
Exceptional Parent Press
Disabled
Practical and Up-To-Date
Resource Books
About Disabilities.
STORIES DISABILITIES WOMEN
by Harilyn Ramo
"The Disabled Child & The Family
NEW!
seems ideally suited to the needs of
The Disabled Child
parents and professionals alike. It offers
with Susan Gushotographs by by Flo Fox and Mary Severance
the Family:
a balanced examination of legitimate
concerns for both these groups and
Schleifer
poignantly emphasizes understanding
the child as a whole individual rather
Exceptional Parent Press proudly announces the
than as a symptom or a disability.
publication of Disabled, Female, and Proud!: Stories
This book vividly illustrates that mutual
of Ten Women With Disabilities by Harilyn Rousso with
respect for everyone's knowledge and
Susan Gushee O'Malley and Mary Severance.
experience--parents' and professionals'--
This book offers young women with disabilities
can open the way for children with
empowering role models and the powerful message
disabilities to reach their full potential."
that they do not have to be or become any one thing
"Highly recommended"
because they are disabled and female--they have full
-Rehabilitation Literature
lives ahead of them. It offers parents and educators a
unique way to help young people learn that making
choices--about school, work, family, and love--is what
being disabled, female, and proud is all about.
"You do not have to be or become any one thing
Making an Exceptional Difference is
because you are a woman or because you have a
a compilation of articles that provides
disability. There are a range of possibilities from
Making an
practical information about applications
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Exceptional
of technologies and approaches.
-Harilyn Rousso
These articles were chosen because they:
"Don't overstate your disability and don't ignore it.
Difference
1. are written clearly and require no
Be assertive. Figure out what you want and don't
previous technical knowledge to be
let people who say you can't get there convince you
understood.
that you can't do it. Keep fighting, keep using your
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head, keep finding as many avenues toward where
can be used to make significant
you want to go as you can."
impact on people.
-Adrienne Asch
3. communicate the possibilities
"Value yourself, and realize your worth, and realize
computer technology is opening up
for people with disabilities without
you're a person too. You have a lot to offer, so
exaggerating the value of the com-
offer it. Go for it!''
puter as a miracle cure.
-Linda Young
NEW!
EXCEPTIONAL PARENT® PRESS
offers you professional and
practical information.
Use this convenient order form:
Enclosed is my check for $
including postage
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MA
FAMILY LIFE
much. As a result, he interpreted
Concern about money matters
problems with responsibility his
his own son's refusal of the money
can obscure the concerns that
father had worried about, he was
for private school as a very special
husbands and wives have about
able to succeed at both his
rejection.
their relationship and the way that
newspaper route and his school
During the course of several
their marriage has developed. Mr.
work.
meetings about the current crisis,
and Mrs. Quinn met weekly for a
As the weekly meetings became
the Quinns recognized how they
six-month period. First they
monthly meetings, Mr. and Mrs.
had systematically misunderstood
discussed their concerns about each
Quinn began to discuss their future
each other's perspectives. These
other and the ways they had failed
together, especially when their
meetings presented the first
to communicate these concerns.
children would be adults. Finally,
opportunity for Mr. and Mrs. Quinn
Then they were able to go back to
they were able to develop a
to tell each other how upset and
their joint commitments to their
financial plan for when they might
worried each thought the other one
children, to each other, and to their
retire.
was about their financial situation.
own families.
Each perceived the other's efforts to
Mr. and Mrs. Quinn began to
- M.J.S.
help as a rebuff. Mr. Quinn felt that
have regular meetings with their
by avoiding the topic of money and
children to discuss the family
This case has been selected from private
by giving Mrs. Quinn gifts for the
money matters and to hear from the
practice consultation files. The names
house or herself, he took care of her
children about their own concerns.
and circumstances have been changed
concerns. Mrs. Quinn wanted to
Ricky Quinn decided to
to preserve confidentiality.
help her husband more than he was
continue at private school. He had a
allowing her to help him. She
successful year and planned to
recognized the pressures that he
continue the next year. Mr. Quinn
was under and was very
let him begin a newspaper route.
disappointed when he responded
Although over the course of the
angrily to her offers of help.
year Ricky had some of the
CLASSIFIED DIRECTORY
Georgia
Oregon
SHOPPING MART
THE DAVISON SCHOOL
PEARL BUCK CENTER
Residential and day school for children with speech,
Pearl Buck Center in scenic Eugene, Ore., offers
language, hearing and/or learning disorders. Small
training for TMR students including multiple
groups, individual speech and language therapy.
handicapped hard-to-place children ages 6-21. Foster
DESIGNER CASUALWEAR
Individualized academic program. Entrance age 3-16.
homes are available. Individualized education plans
Established 1928. Dept. C, 1500 N. Decatur Road,
Special needs clothing for children and adults.
provide consistent training in communication, self-
N.E., Atlanta, Ga. 30306 (404) 373-7288.
For free catalogue send self-addressed stamped
help, functional academics, motor and vocational
envelope to: Exceptionally Yours, Inc. P.O. Box 3246
areas. Call or write Pearl Buck Center, 5100 W.
Framingham, Mass. 01701 (508) 877-9757.
Amazon Drive, Eugene, Ore. 97405. (503) 345-8506.
Director Elisabeth Waechter.
Massachusetts
SAY IT WITH YOUR HEART.
RIVERBROOK
AND YOUR HANDS! T-shirts, Sweats, Mugs,
Calendars, Magnets & much, much more.. all in SIGN
A private residential facility designed to meet the
Tennessee
LANGUAGE. Personalizing available - Fund Raising
needs of moderately, mentally-handicapped girls.
FREE Catalog - SIGNS OF THE TIMES, 1609 N.
The gracious estate houses twenty-five students in a
TALL PINES CAMP
Woodward, Oklahoma City, Okla. 73107
warm family atmosphere. Ice Glen Road,
Stockbridge, Mass. 01262 (413) 298-4926.
Tennessee summer camping for mentally retarded, co-
(405) 943-8657 V/Tdd.
ed ages 7-50. Nineteen years experience. Activities:
swimming, arts/crafts, horseback, boating, archery,
riflery, field trips, fishing. Outdoor camping activities
SCHOOLS, CAMPS,
New York
structured to indiv. abilities. Professional staff. Self-
care emphasized. 3 and 6 week sessions. $225 per
RESIDENCES
week. Enrollment limited to 60. Contact: Ron Eydt,
PARA-EDUCATOR CENTER-NYU
Route 2, Box 194 A, Tellico Plains, Tenn. 37385
A well-established, two-year, post-high school
(615) 261-2138.
program at New York University trains young adults
with pronounced learning disabilities for careers in
Florida
human services. Upon graduation they are qualified
to work with young children, normal or handicapped,
Virginia
as well as infants/toddlers and senior citizens. NYU-
UNIQUE TRAINING PROGRAM
PEC, One Washington Place, N.Y., N.Y. 10003 (212)
FAITH MISSION HOME
Unique residential and vocational independence-
998-5800.
oriented training program. Limited to 21 mildly
Loving, christian, residential care and training for
retarded adults. $1775 per month. Telephone (407)
ambulatory, mentally-retarded and brain-injured
597-2315 or write T&M Ranch, P.O. Box 874,
children and young adults. HCRI, Box 114, Free
Indiantown, Fla.
34956.
Union, Va. 22940 (804) 985-2294.
76 EXCEPTIONAL PARENT / OCTOBER 1988
To Parents and Therapists of Physically Involved
Children Considering a Positioning Travel Chair.
10 Important Reasons For
Choosing A Mulholland
Positioning Travel Chair
Selecting a positioning travel chair is one of the most important decisions
you'll make decision that you and your child will have to live with
everyday for several years. A decision that can greatly affect the quality
of your child's life, health, environment and capacity to learn.
At Mulbolland, we want you to know why our Positioning
Travel Chairs are your best choice.
1. Correct Positioning
3. Easy Transferring/
8. Designed For Today
Positioning works to normalize abnormal muscle
tone and to maintain normal body alignment,
Consistent Positioning
and Tomorrow
thereby improving function, digestion, nutritional
Unique to Mulholland systems are positioning
Mulholland doesn't cut corners when it comes to
intake, respiratory and skeletal health, and the
supports that stay put once adjusted. They
quality construction because our products have
capacity to learn. Mulholland Chairs have available
easily release and swing-away for transferring,
to last for a long time. All our materials are
all the necessary elements for excellent position-
then lock back in the same position after every
durable, rust proof and washable so they fit in
ing. They are modular, completely adjustable
use.
with the things you do everyday. Our Positioning
and light weight with minimum bulk.
Travel Chairs are designed to grow with your
4. Car Transportable
child and adjust to accommodate your child's
changing positioning needs.
2. Comfort & Good Looks
Our lightweight seat easily separates from the
base, and can be transferred to a car without
9. Highly Cost Effective
Our goal is to give your child all the necessary
removing your child.
Mulholland Positioning Travel Chairs often cost
support for good positioning and comfort,
less than other systems, and we save you money
without limiting air circulation or encumbering
5. Proven Safe
in many ways. We save you replacement costs
upper extremity function. Mulholland systems
by providing a durable product that remains
make your child feel and look better, while
When used as recommended with safety harness
effective for long-term use. Plus our multiple-
maximizing their freedom of movement.
and tether strap, our Positioning Travel Chairs
use bases expand the use of our products, making
are safe for use as a car seat, and have been
them optimally cost effective. But most impor-
tested to meet Federal Vehicle Safety Code 213.
tantly, our good positioning capability can
mean reduced medical costs and increased function.
6. Go Anywhere Capability
10. You Can Depend
Dear Sirs:
Our large diameter, wide tread tires glide
letter is being much sent
smoothly over grass, gravel, sand or dirt, easily
on Mulholland
This let you know how
taking you to the market, the lake shore, or on
to product is helping was de- my
The only focus of our company is to build
your Her chair
a forest hike. The lightweight folding base is a
effective children's mobility and rehabilitation
child. just one month ago, she
natural traveler. Mulholland Positioning Travel
livered in this short time comfort-
products. We have been doing this for 16 years
Chairs don't limit your mobility.
and able to sit shoulder,
and we know our business. We are engineers and
is ably now with her head hip, held in the
therapists dedicated to serving your exceptional
7. Lightest Weight Available
needs.
trunk proper the and a experience.with.handcaped foster mon with many year new and position. wheels, this and of easy smoothly. the the this We to new overall love new As
Our chairs are considerate of your back. We
"For more information, please write for our book
on the use of Mulbolland Positioning Systems as
build them as light as possible without sacrificing
children, somith handicappears list of good adjust
well as our other detailed brochures. Or you
high strength and durability. Our bases weigh
prefer, call me collect at 805/525-7165. We're
only 14 lbs. A seat with neckrest, hip supports
here to help."
Larry Mulholland
and safety harness weighs just 17 lbs. And a seat
high
on
my
with all of our support elements weighs only
equipment.
Sincerely,
25 lbs. This is about half of what other travel
Mulholland
J.H.
chairs weigh.
Positioning Systems
Manufactured & Distributed by MOBILITY PLUS
215 N. 12th St./P.O. Box 391
Unsolicited Letter on File
Santa Paula, CA 93060
(805) 525-7165
Don't Keep Off The Grass
or the beach or the trail, if that's where you and your child want to go.
Other chairs can make it difficult to venture beyond the sidewalk. But the
Carrie™ Rover,® with its large wheels, sets you free to cover all terrains.
Travel from your home, to the school bus, to the classroom - and the Carrie
Seat® can also be used in the car. Your child will ride comfortably -
positioned properly. So go to the park, and
don't keep off the grass. You may even want
to pick the flowers!
Rover
by
Tumble
Forms
Ask for the
Carrie™ Rover
the go anywhere chair
from Tumble Forms
Tumble
60 Page Road, Clifton, NJ 07012
Call Toll Free 800-631-7277
Forms®
In New Jersey 201-777-2700
EXCEPTIONAL
PARENT
®
Parenting your child
with a disability
Volume 19, Number 2
March 1989 $3.50
AWARD WINNING
Summer
Programs
03
0
7447074152
7
Everest
J
e
n
1
n
S
The first wheelchair
that gives kids the most
important freedom of all.
The freedom to grow.
If there's one thing all kids have
minutes. Without expensive
comes close to our three-year
in common, it's an uncanny ability to
modifications.
warranty on the frame, and one full
grow fast. For a child in a
So you can be sure your youngster
year on electronics.
wheelchair, that can be a big
will enjoy a proper fit, both now and
We invite you to visit the Hot
concern for parents.
down the road.
Wheels Dealer nearest you.
Hot Wheelsᵀ, however, was
Hot Wheels also quickly
And see the first power wheelchair
specially designed to help keep
disassembles into four convenient
truly designed to go and grow with
growing children from outgrowing
components that can fit into the
your child.
TM
their wheelchairs.
trunk of a compact car.
Thanks to the unique modular
For the past 55 years, Everest &
Jennings wheelchairs have set the
Hot
WHeels
design of Hot Wheels, you can easily
expand the width and depth of the
pace for quality and reliability. And
Hot Wheels is a trademark owned by and used under license
wheelchair frame yourself. In just
today, no other wheelchair even
from Mattel Inc. © 1988.
Everest
Jennings
See Hot Wheels™ on display at these Everest & Jennings Dealers.
A-Ability Med Equipment
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Glasrock Home Healthcare
J.D. Brown & Company
Orthopedic Appliance
Tampa, FL
Mt. Vernon, IL
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205/322-0384
Aaro Medical
Castlebury Medical
Glasrock Home Healthcare
J.E. Medical
Owens Healthcare
Greenville, SC
Wichita, KS
Tampa, FL
Eau Claire, WI
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803/242-6791
316/267-2805
813/626-1437
715/832-1685
713/661-5668
Aaro Medical-Primedica
Clinishare Health
Green Bay Home Medical
Keene Medical Products
Pledge Medical
Norcross, GA
Chatsworth, CA
Green Bay, WI
Lebanon, NH
Rockville, MD
404/242-1301
818/709-6221
414/432-2120
603/448-5225
301/986-1031
Abbey Medical
Colonial Medical Supply
Hamilton Health Aids
Kirson Medical Equipment
Pulmocare Medical Supply
1-800-421-5126
Orlando, FL
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Baltimore, MD
Champaign, IL
CA: 1-800-262-1294
407/849-6455
513/923-3300
301/391-1811
217/352-7483
For your local branch
Conva-Care Service, Inc.
Harrisburg Healthcare
Knoll Patient Supply
Rehab Equipment Centers
Access Ability
Bedford, IN
Harrisburg, PA
Topeka, KS
Southington, CT
Tulsa, OK
812/279-3563
717/238-9683
913/232-5972
203/621-6339
918/583-9902
Cortech Inc.
Healthcare Equipment Inc.
Koebers, Inc.
Rehab Equipment & Supply
Adaptive Wheelchair
Waynesboro, PA
Durham, NC
Chicago, IL
Peoria, IL
Detroit, MI
717/762-8141
919/489-7408
312/434-1420
309/679-6054
313/882-6078
Denman Medical
Health Mart
Kraemer Rx
Rehab Solutions Inc.
Albany Surgical Supply
Quincy, IL
Bakersfield, CA
Elizabethtown, PA
Brick, NJ
Albany, NY
217/224-9164
805/327-3706
717/367-1262
201/458-5155
518/449-5716
Dettmer Brace
Health South
Lewis Wheelchair Repair
Rehab Specialists
Alan's Wheelchair Repair
Orlando, FL
Winter Park, FL
Long Beach, CA
Mt. View, CA
Orange, CA
407/425-2795
305/297-0967
213/597-1026
415/965-8282
714/639-8222
Economy Medical
Health South Orthotics
Loyal La Plante
Shield Healthcare Center
Allied Medical
Concord, CA
and Prosthetics
Tulsa, OK
San Leandro, CA
Westland, MI
415/686-3323
Birmingham, AL
918/835-6381
415/895-0200
313/729-7800
Economy Medical Equipment
205/592-0226
Medical Rehab Services
Stein Medical
Americare Medical
Concord, CA
Hooks Convalescent Aids
Atlanta, GA
Appleton, WI
Equipment Inc.
415/680-0638
Merrillville, IN
404/458-1329
414/733-1010
Savannah, GA
Elmira Homecare
219/769-1065
Metro Rehab Services
Suburban Medical Service
912/355-7055
(Div. of Linde Homecare)
Home HealthCare Equipment
Evergreen Park, IL
Newtown Square, PA
Anderson's Wheelchair
Elmira, NY
St. Louis, MO
312/423-0081
215/353-7014
Rochester, MN
607/734-1626
314/968-1616
The Medical Store
Tom's Convalescent Aids
507/288-0113
Environmental Mobility
800/223-3660
Plano, TX
Appleton, WI
Bach Medical
Madison, WI
Home Medical Equipment
214/423-7525
414/733-4552
Springfield, MO
608/244-2034
Company
The Medical Store Ltd.
United Medical Mart
417/883-2661
Equipos Pro-Convelchia
Largo, FL
S. Burlington, VT
Florissant, MO
Badger Medical
Rio Piedras, Puerto Rico
813/584-8605
802/864-0908
314/838-3100
Madison, WI
809/751-6800
Home Medical Equipment
Nascott Rehab Services
608/256-1801
University Orthopedics
Faison Medical
Supply
Washington, D.C.
Urbana, IL
Bay Medical Homecare
Van Brocklin Medical
St. Petersburg, FL
202/832-1900
217/344-0446
Richmond, CA
Davis, CA
813/545-0626
National Medical Homecare
415/232-4867
415/835-3639
Home Medical Supply
Western Rehab Systems
(Homedco)
Vallejo, CA
Berwind Medical
Flint Medical (Comfort Care)
Phoenix, AZ
Folcroft, PA
707/644-4889
Philadelphia, PA
Flint, MI
602/263-1129
215/586-2100
Winchester Home Healthcare
215/457-5800
313/733-6250
Homex Healthcare Corporation
National Wheelchairs
Charlotte, NC
Binson's Hospital Supply
Florida Surgical Supply
Arlington Heights, IL
Little Rock, AR
704/332-1217
Centerline, MI
Sarasota, FL
312/364-1620
501/664-1404
313/755-2300
813/366-2343
Hudson Home Health
Wright and Filippis
North Penn Medical
Rochester, MI
Brownfield, Inc.
Functional Rehab, Inc.
Newington, CT
Lansdale, PA
313/853-1888
Boise, ID
Pewaukee, WI
203/667-4871
215/855-3545
208/342-4659
414/691-4587
Indiana Home Health
Young's Medical Equipment
Northside Surgical Supply
Easton, PA
Indianapolis, IN
Rochester, NY
215/258-1585
317/923-4663
716/544-9060
For more information, please contact the Hot Wheels dealer nearest you.
Everest
Jennings
3233 E. Mission Oaks Blvd. Camarillo, California 93010
EDITORS' DESK
EXCEPTIONAL
PARENT
N
ow that the national and local elections are over, the political
Editor in Chief: Maxwell J. Schleifer, Ph.D.,
process can begin. Parents and professionals involved in the lives
Professor of Psychology, University of Mass.
of individuals with disabilities must continue to work to ensure
Editor: Stanley D. Klein, Ph.D., Professor of
Psychology, New England College of Optometry
that existing legislation be fully implemented in every part of our
Assistant Editors: Sarah J. Niemczycki,
country. We must also strive to pass important legislation that has
Robert K. Hermansen
Book Editor: Cory Moore
been proposed and is now being reviewed by Congress. Our editorial
Editorial Intern: Bridget Flynn
for this issue is an Open Letter to President Bush asking him to
Design Consultant: Andrea Golden
Mechanical Artist: AI Bertelsen
provide the leadership necessary to meet the commitments he made
Business: Ann E. Foote, Mgr., Fredrica L. Strumpf,
during the campaign.
Janice Bielot, Stephanie Richard
Assistant Publisher: David Jones
We continue to be impressed by the progress being made in SO
many areas of the lives of children with disabilities. In this issue we
ADVERTISING DEPARTMENT:
National Sales Offices: Edie Shack, Dir.
are presenting our Annual Summer Program awards. When we gave
1170 Commonwealth Ave., Third Floor
our first awards over a decade ago, we could not have dreamed of
Boston, Mass. 02134, (617) 730-5800
West Coast Sales Offices: Sandi Escalle,
how rich and creative camp programs would become.
Pattis 3M, 1800 N. Highland Ave., Suite 717
The four winners are: Timber Trails, in Tolland, Mass., a pro-
Hollywood, Calif. 90028 (213) 462-2700
Advertising Assistant: Corinne F. Levin
gram that mainstreams girls with disabilities in a Girl Scout camp; the
HASC Summer Program in Parksville, N.Y., for involving brothers and
EDITORIAL OFFICES:
1170 Commonwealth Ave., Third Floor
sisters of children with disabilities in a camp program; the Children's
Boston, Mass. 02134, (617) 730-5800
Association for Maximum Potential (C.A.M.P.), in San Antonio, Texas,
for including a wide range of volunteers to serve children with many
SUBSCRIPTIONS: EXCEPTIONAL PARENT,
P.O. Box 3000, Dept.. EP, Denville, N.J. 07834.
different kinds of disabilities including serious medical conditions;
and New Horizons in Santa Ana, Calif., for programming for people
of a wide range of ages on a year-round basis.
As part of our own emphasis on recreational and leisure time
Senator Gerard
activities, this issue includes an article by Stuart Schleien on how to
D'Amico Award
1986
For an outstanding contribution
make sure that the recreational programs being provided are helping
to Early Childhood Intervention
MEDIA AWARD
by The Mass
THE PRESIDENT'S COMMITTEE ON
children learn skills that will provide a lifetime of opportunities. Kate
Early Intervention Consortium
EMPLOYMENT OF THE HANDICAPPED
1984
McAnaney's article on camping illustrates how the support of parents
can help make it possible for children with disabilities to attend out-
door programs where they might otherwise be excluded. This
month's Family Life discusses a family that must make decisions for
EXCEPTIONAL PARENT (ISSN 0046-9157) is published 8
all of their children in regard to summer planning. And finally, Robert
times a year (Jan, Mar, Apr, May, July, Sept, Oct, Nov) for $16
per year to individuals; $24 per year to organizations, libraries,
Bond's article shows how to develop a swimming program.
schools and agencies by Psy-Ed Corporation, 1170
Commonwealth Ave., Third Floor, Boston, Mass. 02134.
Canadian subscribers: if paying in Canadian currency please
MORE CONTESTS
add 30%. Additional postage: Canada, Latin America, and
other foreign countries, $5 per year. Mail to EXCEPTIONAL
PARENT, P.O. Box 3000, Dept. EP, Denville, N.J. 07834.
Second-class postage paid at Boston, Mass. (USPS 557-810)
The innovative work of so many parents and professionals
Microfilms of all issues are available from University
seldom gets any recognition. We plan to address this problem with
Microfilms, 300 North Zeeb Road, Ann Arbor, Mich. 48106.
two new award programs. The first, the School Mainstreaming
Libraries: No claims accepted prior to 45 days after issue
mailing date (first day of cover month). No claims honored 90
Award, is for the best mainstreaming programs at the pre-school,
days past mailing date. Back issues requested thereafter incur
grade school and high school levels. Because technology and assistive
a charge of $7 each and depend upon availability.
devices can change the life of a child and a family, the second contest
Postmaster: Please send address change to EXCEPTIONAL
PARENT, P.O. Box 3000, Dept. EP, Denville, N.J. 07834.
is for the best description by parents of the contribution of such
EXCEPTIONAL PARENT® "Exceptional Parent" is a registered
trademark of the Psy-Ed Corporation. Copyright © 1989 by
technology on expanding the opportunities available for their child.
Psy-Ed Corporation. All Rights reserved. Nothing may be
Anyone can nominate a program. Both will require a 1500-word
reprinted in whole or in part without written permission from
the publisher. Authorization to photocopy items for internal or
description with photographs, if possible.
personal use, or the internal or personal use of specific
clients, is granted by Psy-Ed Corporation for users registered
with the Copyright Clearance Center (CCC) Transactional
Reporting Service, provided that the base fee of $1 per copy,
THANKS
plus $.50 per page is paid directly to CCC, 27 Congress St.,
Salem, Mass. 01970. For the organizations that have been
granted a photocopy license by CCC, a separate system of
We want to thank the nearly 3,000 readers who responded to the
payment has been arranged. The fee code for users of the
Transactional Reporting Services is: 0046 9157/89/$1.00+.50.
respite care survey. The first report on the results of this study will be
presented in our May/June issue.
Editorial Information: Contact Sarah Niemczycki,
EXCEPTIONAL PARENT, 1170 Commonwealth Ave., Third
Floor, Boston, Mass. 02134. Return postage must accompany
all manuscripts, drawings and photographs submitted if they
-M.J.S. & S.D.K.-
are to be returned. Publisher assumes no responsibility for
unsolicited material.
2 EXCEPTIONAL PARENT
MARCH 1989
EXCEPTIONAL
(R)
Parenting your child
PARENT
with a disability
Recreation
Volume 19, Number 2
MARCH 1989
FEATURES
14 The Child
16 1988 Award
28
Playtime:
38 Swimming for
I Love Most
Winning Summer
Meeting the Needs of
Self-Confidence
by Jo Koles
Programs
Your Child
& Fun
A mother answers an
18 Timber Trails
important question.
by Stuart Schleien, Cheryl
by Robert F. Bond
20 HASC Summer Program
22 C.A.M.P. 24 New Horizons
Baldwin & Cheryl Light
Guidelines for a community-
25 Commendations
Parents and professionals
based swimming program.
must collaborate to design
46
Proper Seating:
50
A Camping We
effective recreation
A Key to Participation
Will Go
programs.
by Kate Divine McAnaney
By insisting on
mainstreaming, parents and
children can teach others.
DEPARTMENTS
4
Family Forum
9 Editorial
34 Resource Section
54 What's
Letters to the Editors
Dear Mr. President
Directory of National
Parents Search
Happening
Recreation Organizations
Parents Respond
58 From the
62
Family Life
70
Family Album
76 Fun Stuff
Bookshelf
"I'm not still at home
A Letter to Our Son
by D.J. Orr
The Language of Toys
full time."
A Very Special Person
Family Learning
Access America
Problems in summer
My Brother Benjamin
Opportunities: In the car
planning
Special Olympics
Cover photo courtesy of Children's Association for Maximum Potential (C.A.M.P.), featured on page 22.
EXCEPTIONAL PARENT
MARCH 1989
3
FAMILY FORUM
At six months of age, Michael
LETTERS TO THE EDITORS
was rushed to the hospital with
double pneumonia. He fought and
We welcome all contributions to
awful thoughts, and to allow times
struggled for three weeks and finally
Letters to the Editors. Please send your
when coping is extremely hard!
died in his sleep the night before he
questions, ideas and responses to:
Although the November/
was to return home and the night
Letters to the Editors,
December 1988 issue is only my
before Christmas eve. The pain was
EXCEPTIONAL PARENT,
third, I've seen in all three issues the
unbearable yet the joy of seeing him
1170 Commonwealth Ave., 3rd Floor,
acceptability for not being 100 per
free from tubes and wires was a
Boston, Mass. 02134.
cent up and positive when parenting
relief. Having such opposing
a child with a disability. I know
emotions ripped me apart.
MORE INSIGHTS FROM ZEPPY
there are times when it's hard to be a
I've never felt so much hurt,
mother to my "normal" son and that
sorrow and stabbing pain in my life.
I was moved in reading
doesn't bother me; it's the bad days
I thought I would never be able to go
"Insights from Zeppy: A Father's
when it's very difficult to be a
on. It was truly refreshing to read
Essay" by Sal Biondello (July-
mother to my moderately mentally-
Elizabeth Farnworth's story. She
August 1988), who brings to light a
disabled four-year-old that makes me
suffered like I did and survived. It
wisdom too often submerged in our
feel guilty. Your magazine has let me
meant so much to me to hear her say
competitive, get-ahead world of high
see that other parents and
that "a tragic loss occurred. I cannot
technology and high achieve-ment -
professionals recognize the
change that. The only choice I have
namely, that every human being,
disappointment, depressions, bad
is how I will respond to the crisis."
regardless of ability and accomplish-
moods, etc. and that those feelings
Like Elizabeth, "I will never be the
ment, possesses inherent dignity and
are okay and a part of life with a
same," but I will survive! Thanks so
is of immeasurable worth.
child with a disability, and thus to
much for sharing this story.
That belief does not in any way
not feel guilty!
release us from the great responsibil-
A thanks, too, goes to Ann
Robyn Roesser
ity of ensuring that there is ample
Landers for recommending
Davie, Fla.
opportunity for individuals with
EXCEPTIONAL PARENT as an
disabilities to achieve their fullest
excellent gift to the new mother of a
EDITORIAL ADVISORY BOARD
potential. But it does remind us that
baby with a disability. I was
HAROLD S. BARBOUR, ED.D., President Emeritus, The Woods
in addition to the value of "doing"
unaware your magazine existed until
Schools, Langhorne, PA
T.
BERRY BRAZELTON, M.D., Clincal
Professor of Pediatrics, Harvard Medical School
FRANCES P.
there is a value in "being" and in our
written about in her column.
CONNER, ED.D., Professor Emeritus, Special Education,
being, each and every one of us, with
Columbia University ALLEN C. CROCKER, M.D., Director,
Developmental Evaluation Clinic, Children's Hospital, Boston
disabilities and without, has a unique
Dorothy C. Michalak
ELI FACTOR, D.M.D., President, Wheelchair Motorcycle
contribution to make. We must not,
Schererville, Ind.
Association, Brockton, MA
MURRAY FEINGOLD, M.D.,
Physician-in-Chief, National Birth Defects Center, Kennedy
however, be fooled into thinking that
Memorial Hospital, Brighton, MA.
SANDRA B. FLEISHMAN,
"contribution" can only be measured
JOURNEY THROUGH GRIEF
Parent, Administrative Assistant, Pelham Public Schools,
Pelham, N.Y.
BRUCE M. GANS, M.D., Associate Professor of
by the conventional indicators of
Rehabilitation Medicine, Tufts University School of Medicine,
success, e.g., academic honors, high
The excerpt from the book
Boston
SOL GORDON, Ph.D., Professor Emeritus, Child and
Family Studies, Syracuse University
HERBERT J. GROSSMAN,
salaries and the like.
"Journey Through Grief," from the
M.D., Professor, Pediatrics, Neurology, and Psychiatry,
As Mr. Biondello puts so well,
bookshelf (October 1988), touched
University of Michigan Medical School, Ann Arbor, MI
GOODWIN D. KATZEN, Executive Director, Rockland County
"if we, as a species, are to survive, it
me more than anything I have ever
Center for the Physically Handicapped, New City, N.Y.
EDWIN
will be through a fundamental
read. It was so close to my own story
W. MARTIN, Ph. D., President, Human Resources Center,
Albertson, N.Y.
JEAN B. McGREW, Ph.D., Superintendent,
change in what we find important in
that I could have written it myself!
Glenbrook School District #225, Glenview, IL
EDWARD
life." I agree with him and thank
At eight weeks of age, my son,
NEWMAN, Ph.D., Director, Temple University Developmental
Disabilities Center, Philadelphia
BETTY PENDLER, M.S.,
him for sharing that insight. It is one
Michael, was diagnosed with
Member, New York State Developmental Disabilities Planning
that bears repeating.
Werdnig-Hoffman's Disease, which
Council HARVEY PRESSMAN, President, Corporation for
Opportunity Expansion, Newton, MA
JEROME ROSNER, O.D.,
is an infantile spinal muscular
Professor of Pediatric Optometry, University of Houston
Diane Barounis
atrophy. I read everything that I
.HARILYN ROUSSO, A.C.S.W., Director, Disabilities Unlimited,
New York, N.Y.
BARBARA J. SEABURY, M.A., Director,
Niles, Ill.
possibly could on the subject and
Activities Services, Rhode Island Hospital, Providence
took him without a second thought
HOWARD SHANE, Ph.D., Director, Communications
Enhancement Clinic, Children's Hospital, Boston
SUSAN K.
KUDOS FOR EP & ANN LANDERS
for physical therapy. I never let his
SHUSTER, Ph.D., Professor of Special Education, Indiana
disability get in the way. He was the
University at Bloomington
CAROL TINGEY, Ph.D., Parent,
Associate Professor, Developmental Center for Handicapped
Thanks for publishing a
happiest, most enjoyable baby I had
Persons, Utah State University, Logan, Utah
HAROLD
magazine that has in print that it's
ever seen and he brought me more
TURNER, D.D.S., Associate Professor, Retired, School
of
Graduate Dentistry, Boston University
IRVING KENNETH
okay to have good and bad days, and
joy than I could ever express.
ZOLA, Ph.D., Professor and Chairman, Dept. of Sociology,
Brandeis University, Waltham, MA.
4
EXCEPTIONAL PARENT
MARCH 1989
Introducing the
revolutionary new Dynamic Posture Chair
from Ortho-Kinetics.
While better postural alignment and control in
The economically-priced Dynamic Posture Chair
involved children is often achieved in therapy, it
is designed for children with varying degrees and
has always been difficult to carry this control over
types of involvement, and it's easily adjustable
into everyday activities.
from child to child. Which makes it ideal for home
Until now. Now therapists have a valuable
or school applications.
new ally to enhance the carryover of physical,
The Dynamic Posture Chair. It's making health
occupational and speech therapy goals into func-
care professionals everywhere sit up and take notice.
tional activity. The Dynamic Posture Chair
For more information, call 1-800-558-7786.
from Ortho-Kinetics.
In Wisconsin, 1-800-522-0992.
This unique new adaptive chair employs the same
concepts therapists use in treatment to obtain active
trunk and lower body control. By elevating the
pelvis higher than the knees in sitting, and tilting
it forward 5 to 10 degrees, the trunk is required to
Ortho-Kinetics, Inc.
maintain a more upright posture. And weight bear-
ing is improved by bringing the center of gravity
P.O. Box 1647, Waukesha, WI 53187
Phone: 1-800-558-7786
forward and elevating the hips.
(In Wisconsin, 1-800-522-0992)
© 1988, Ortho-Kinetics, Inc.
FAMILY FORUM
CORRECTIONS: ADVOCACY
State residents through a toll-free
99 Washington Avenue, Albany, N.Y.
SERVICES IN NEW YORK
number (800-522-4369). As an
12210, (518) 473-7378 (voice only) or
executive-level office, staff work with
(518) 473-7871 (TTD).
This letter is in reference to
other agencies and organizations on
your November/December 1988
a state, regional and local level but
V. Paul Smith, Deputy Advocate,
EXCEPTIONAL PARENT, in which
are restrained by law from practicing
New York State Office of
you have incorrectly listed our office
case advocacy.
Advocate for the Disabled,
as the referral for protection and
The agency that provides
Albany, N.Y.
advocacy services in New York State
protection and advocacy services in
in your Resource Section.
New York State is the NYS
FUTURE FINANCIAL PLANNING
The Office of Advocate for the
Commission on Quality of Care for
Disabled does provide information
the Mentally Disabled, Bureau of
I was pleased to see my article
and referral services to New York
Protection and Advocacy, Suite 1002,
on estate planning published in the
November 1988 issue. My article
included two legal citations to enable
readers to refer to additional infor-
mation on the subject. The reference
to the article written by Darcy
Chamberlain was mistakenly printed
as appearing in the July 1987 issue of
the Illinois Law Review. The
correction publication is the Illinois
Bar Journal. Readers who are
interested in reading this or the Carol
Mooney article can obtain copies
from the nearest law library or
request a copy through the inter-
library loan department of their local
public library. It is unlikely that a
public library will have the legal
journals as part of their collection.
It's been gratifying to receive
phone calls from several of your
readers asking for more information.
As the parent of an adult with a
disability, I know how critical this
information is for families. I want to
share with your readers what I have
told the individuals who have called
me. I offer a 2-3 hour inservice
presentation on the subject of "Estate
Planning for Families with Disabled
Dependents."
As part of my commitment to
CRUISER BUGGY
educating parents about areas of
Portable Positioning
interest and concern, I frequently
volunteer my inservice time to
parent support groups and advocacy
A lightweight, folding umbrella stroller
agencies. If an agency or support
with over twenty positioning features.
group is interested in my presenta-
tion, they can contact me at the law
for details contact:
firm of Whitted & Spain, One North
Convaid Products, Inc.
LaSalle Street, Chicago, Ill. 60602,
P.O. Box 2458, Palos Verdes, CA 90274 USA
(312) 372-7901.
Theresa M. Varnet
TOLL FREE:
IN CALIFORNIA:
800 552 1020
213 539 6814
Homewood, Ill.
Continued on page 67
6
EXCEPTIONAL PARENT
MARCH 1989
FAMILY FORUM
PARENTS SEARCH
RING 15 CHROMOSOME
SYNDROME
EXCEPTIONAL PARENT will
I would appreciate exchanging
publish letters from subscribers
information with other families who
Our child, Samuel, is five and a
searching for parents with similar
have children with similar problems.
half. Three years ago, he was
experiences, information about specific
diagnosed with Ring 15 Chromo-
problems, and resource information.
L.A.
some syndrome. He weighed four
Subscribers may publish one letter a
New Jersey
pounds, four ounces, full term (a
year in Parents Search. Anyone who
caesarean delivery because of breech
wishes to submit or reply to a letter in
positioning). He had club feet,
Parents Search should write to:
bilateral dislocated hips, undescend-
Parents Search/Parents Respond
ed testicles, hyper-extended knees
EXCEPTIONAL PARENT,
1170 Commonwealth Ave., 3rd Floor,
Boston, Mass. 02134.
Please indicate whether it is a search or
response letter and in which issue the
letter was printed when addressing a
reply. All reponses will be forwarded
and may be published in our Parents
Respond column.
NOONAN'S SYNDROME
I'm looking for people with
Noonan's syndrome. I feel like I'm
the only one with the disease. Please
help me! I'm 34 years old, but age
does not matter. However, I'd like to
write to people 12 and over.
R.J.
Massachusetts
TRACHEALESOPHAGEAL
FISTULA & ATRESIA
Our two-and-one-half-year-old
girl was born with a tracheal-
Using a unique design,
machine can be set individ-
esophageal fistula and esophageal
Easy Access makes innova-
ually and adjustable handles
atresia, which were corrected
tive fitness equipment for
enhance comfort while your
surgically. Because of these and
your child's fitness needs.
child exercises in a relaxed
The Multi-Exerciser gives
position. Lap belts are se-
other problems, she did not learn to
you and your child the free-
curely fastened with a simple
eat orally until she was one year old.
dom to address those needs
to use buckle and provide
For more than a year, she
right in the convenience of
maximum stability.
thrived on strained food, but could
your own home anytime of
Flex Your
The Multi-Exerciser is
not progress to junior food without
day. Accessibility and
delivered completely
ease of use allow your
vomiting. Then she began to vomit
child to independently
Independence.
assembled, thus elim-
inating a heavy set-up.
even the strained food, and x-ray
exercise at his or her
It requires little space
studies showed a narrowing of the
desired level of intensity.
back muscles of the upper
and, when folded, is small
esophagus, possibly as a result of
Providing high-quality
torso as well as the arms and
enough to fit under a bed.
scar tissue from the original surgery.
exercise with low-impact
shoulders are all performed
Child and adult models are
resistance, strength and aer-
with one machine. The re-
available in several colors.
At this time, she can tolerate
obic workouts are optimized
sistance on each side of the
For more information call
only liquids orally. Supplemental
with less stress to ligaments
toll free 1-800-762-EASY.
feedings through her gastrostomy
and joints. A complement
Flex your independence™
have been resumed.
of motions for the front and
EASY ACCESS
with Easy Access. Patent Pending.
CORPORATION
912 Drew Street/Clearwater, FL 34615/Suite 103/(813) 441-EASY
EXCEPTIONAL PARENT
MARCH 1989
7
FAMILY FORUM
and a mild degree of hypospadias.
Nonetheless, he's currently trying
TETRASOMY 18 PT.
Some of the other physical character-
(on his own) to master a knock-
istics typical of this syndrome which
knock joke or two.
I would like to express to you
he exhibits are poor muscle tone,
Samuel is an active, funny child
my thanks for this magazine and the
curvature and weakness of his index
who charms anyone who spends
quality in which it is written.
fingers, cafe au lait spots,
more than a moment with him. He's
I highly recommend it to the families
microretrognathia and a triangular
very tiny still - nearly 39 inches tall
I come in contact with who have a
facial shape.
and 33 pounds, but growing at a
family member with a disability.
Developmentally, he's experi-
steady rate.
EXCEPTIONAL PARENT helps
enced delays in several areas -
We'd be interested in hearing
bridge the gaps of isolation and
walking at two and a half after
from anyone who has a child with
loneliness.
surgical correction of his feet and
this syndrome, or a deletion of the
I have a 24-month-old son who
hips, and numerous casts and braces;
long arm of the fifteenth chromo-
has been diagnosed with an extreme-
just this past year managing scissors
some, or any ring chromosome. It's
ly rare chromosomal abnormality,
and a modified tripod grasp on a
likely that he will require repeat
Tetrasomy 18 pt. When he was
pencil, etc. He tests out at low
surgery on at least one foot, so we'd
diagnosed in 1986 there were only 20
normal for his receptive language,
be helped by knowing what others'
cases documented in the world.
but his expressive language lags by
experience with club feet after initial
Information is hard to find and a
at least two years. We used sign
treatment has been given.
prognosis is sketchy at best.
language with him, as well as a form
And finally, parents who are
Brandon was born with heart
of cued speech, and saw dramatic
dealing with a similarly large gap
problems, hydronephrosis, apnea
results — and he has been very quick
between what their child under-
spells and low muscle tone. He
to drop the signs as he acquired each
stands, and is able to say, might have
dehydrates very fast and is prone to
word or approximation.
experiences to share with us.
respiratory infections, thus we spend
His speech is quite telegraphic,
a lot of time in the hospital. Since his
and he has difficulty with sequencing
H.R.
surgery (for the hydronephrosis) he
as well as sound production.
Tennessee
has been doing better but is very
delayed developmentally.
Brandon is definitely a
diamond in the rough and he has a
sparkling personality, but I feel very
GIFT
shaky having no idea what the future
holds (or even a hint of it). I would
love to hear from some parents with
IDEAS
a child who has the same or like
disability. Perhaps we can help each
other. Thank you so very much.
For the Special People
Keep up the excellent work!
in Your Life
L.B.
AVery Special Gift Catalogue
Nevada
Visual Aids
Speech Aids
MONODACTLY
Toys and Games
N
Ltd
A
Listening Devices
S
My four-month-old daughter,
Recreational Mobility
Hope, was born with a form of
Computer Enhancements
Adult and Juvenile Audio Cassettes
monodactly. She is missing four
Volume II
fingers on each hand and four toes
LET US HELP
on each foot. She is also lacking the
exterior bone in each arm.
I am a first-time mom who
For Information and a Free Color Catalogue
would like to hear from anyone who
Call or Write to:
TOLL FREE
has experienced a similar disorder.
1-800-443-4728
JESANA
J.F.
Ltd
NY RESIDENTS
Iowa
914-591-5539
P.O. Box 17, Irvington, NY 10533
8 EXCEPTIONAL PARENT
MARCH 1989
EDITORIAL
Dear Mr. President,
During your campaign, you demonstrated a keen
function more independently through the provision of
awareness of the issues confronting children and adults
assistance, technology, devices, and services.
with disabilities and their families.
Federal legislation (P.L. 99-506), passed in 1986,
In your statement as a candidate published in
ensures technological access for all persons with
October's EXCEPTIONAL PARENT you wrote that
disabilities to computers and other electronic office
"without aggressive public and private support, people
equipment in places of Federal employment. This
with disabilities will not be able to achieve their highest
program can serve as a model for employers in the
priority, namely the independence necessary to achieve
private sector.
control over their own lives and integration into the
Two important pieces of legislation that need to be
mainstream of American life."
acted upon by the Congress already have considerable
You also noted that "we must include people with
bipartisan support. The "Medicaid Community Quality
disabilities and their parents in the process (of providing
Services Act" proposes the use of Medicaid to fund
meaningful access to all aspects of society) to ensure that
community and family support services as an alternative
their real needs are addressed." Further, you pledged to
to the institutionalization of children and adults with
"expand the number of persons with disabilities and
disabilities. This bill also supports job training, respite
parents of persons with disabilities to key positions in
care and other programs that help citizens with
my administration."
developmental disabilities to live in their own
You made it clear that these are not radical goals.
communities. The "Americans with Disabilities Act"
In the campaign you directly addressed the concerns of
was introduced in Congress in 1988 with the intent of
people with disabilities in your acceptance speech at the
prohibiting all discrimination on the basis of disabilities.
Republican National Convention and during the second
Federal laws already enacted and those proposed
Presidential debate. You demonstrated that you are
cannot succeed without strong leadership by the
willing to remind all of our citizens that meeting the
Executive branch of government. You know that each
needs of everyone with disabilities is an important part
law requires adequate funding and consistent Federal
of our national agenda. After the election, you
monitoring so that the expanding opportunities can be
continued to demonstrate your personal interest and
available to citizens with disabilities of all ages wherever
concern when you spoke at Gallaudet College using a
they and their families reside. Your administrative
sign language interpreter and when you appointed a
appointees to the critical Federal offices that develop
committee to assure access to the Inaugural events for all
and support the various Federal programs and services
Americans.
need your consistent support and leadership so they can
Now, as President, you can provide dynamic
carry out your policy commitments to people with
leadership needed to move our country towards the
disabilities and their families.
goals you support.
We look forward to your Administration taking the
Since 1975, the Federal government has played a
initiative to see to it that the American values of
significant role in dramatically improving the lives of
individual freedom of choice and involvement in the
children and adults with disabilities and their families.
social, political and economic mainstream are applied to
The Education of All Handicapped Children Act (P.L. 94-
programs for individuals with disabilities. We believe
142) has revolutionized the opportunities for youngsters
that the gains our society has already made provide you
to grow to become self-sufficient adults. Today, after
and your Administration with the unique opportunity to
more than a decade of implementation of that law, child-
complete this long overdue task.
ren and young adults with disabilities are involved at all
We are prepared to work with you towards these
levels of the educational systems. The benefits of educa-
goals by continuing to inform our readers of the activi-
tional programs for children with disabilities and their
ties of the relevant Federal government agencies and
families are now being extended to the preschool years.
programs and by encouraging our readers participation
At the other end of the educational spectrum,
in the democratic process. We wish you well.
Federal leadership has also encouraged the growth of
programs that help youngsters make the transition from
school to the adult world of work.
Manuul d Schliter
Last year, important new legislation - the
Technology Related Assistance for Individuals with
Stanley D.Klain
Disabilities Law of 1988 (P.L. 100-1407) - was passed
and will be implemented in the current year. This law
can enable individuals of all ages with disabilities to
Founders and Editors of EXCEPTIONAL PARENT
EXCEPTIONAL PARENT
MARCH 1989
9
FAMILY FORUM
PARENTS RESPOND
delays, but he continues to smile and
share his love with so many.
We started a parent group for
The following letters are in
EXCEPTIONAL PARENT from the
parents with RTS children in 1984
response to E.D.'s request for
parent, E.D., of Florida, about
and we now have over 90 families
information about Rubinstein-Taybi
Rubinstein-Taybi syndrome. We, too,
that we correspond with here in the
syndrome (Parents Search,
have a son diagnosed with RTS.
United States. Our group's name is
November/December 1988).
He is five years old now and doing
Rubinstein-Taybi Parent Group (or
much better than we were told he
RTS Parent Group). There are also
RUBINSTEIN-TAYBI SYNDROME
would do or that we had expected
parent contact groups that we know
him to be able to do. He is a happy,
of in Ireland and England. We all
I am responding to the letter in
active five-year-old with numerous
enjoy sharing with each other about
November/December 1988 issue of
health problems and developmental
the difficulties and rewards that we
have in caring for our children, and
the help that we have received from
everyone in the group has been a
positive force for us through the past
Just glide inside, fasten your
five years since our son was born.
Our group just completed
seat belt
and go.
helping with a study on RTS this past
spring and we are all anxious to see
the final results made into a booklet
for parents and professionals on how
0
it is to care for a child with
Rubinstein-Taybi syndrome. We are
KneelKar lowers itself to near ground
also in the beginning stages of
level with just the push of a button.
A lightweight ramp folds out allowing the
planning a national meeting on RTS
Amigo or wheelchair user to glide in. An
with a possible date of spring, 1990.
easy to use tie down system attaches to
Also, NORD has a very good
the Amigo or wheelchair at all the corners
DataBase Sheet on RTS with very
and a seat belt goes securely across the
basic information for anyone who
passenger. When the passenger is secure
has interest in RTS.
the KneelKar pops back to driving position
by pushing the "UP" button
We have had letters in the past
in EXCEPTIONAL PARENT about us
KneelKar is the master of keeping
and our parent group. The magazine
things simple.
has been a very big help to us as
Its interior combines convenience and
comfort, while offering an exceptional view.
parents of a child with a disability
KneelKar is made from either a Plymouth
and to our group in letting others
or Dodge mini van. They are designed to
know about our existence. We
fit the customers needs. Each mini van is
always appreciate what you do and
built to please each customer. KneelKar
have done for parents and families of
helps everyone get there comfortably and
children with disabilities.
conveniently.
If you know of other parents
KneelKar is roomy enough to provide
with RTS children or would like to
ample space for the wheelchair user and
let others know about our group,
up to 5 more people. The mini van can be
please use our letter in the magazine.
modified to be driven by the selfdriver or
We haven't sent a letter for quite a
carry the wheelchair user as a passenger.
while. We look forward to the next
All KneelKar conversions benefit from a Limited Warranty of seven
issue of EXCEPTIONAL PARENT
years or 70,000 miles, whichever comes first.
and thank you for what you do!
KAR
Ask for a demonstration or information:
Lorrie Baxter
MEDNET Inc.
name
544-546 WaWeeNork Dr.
address
RTS Parent Group
Battle Creek, MI 49016-0948
city
state
zip
414 East Kansas
Telephone: 616/962-3800
telephone ( )
Smith Center, Kan. 66967
(913) 282-6237
10
EXCEPTIONAL PARENT
MARCH 1989
Continuing
The Chrysler Motors
Physically-Challenged
Assistance Program
(P-CAP)
Customer Benefits:
Cash allowance in addition to existing
corporate incentive programs.
Up to a maximum of $50000 on adaptive
driving aids installed in 1988 or 1989 cars
and trucks.*
Physically-Challenged Resource Center
information network.
*
Fleet rebates are not eligible to participate.
For more information, consult your dealer
representative or contact the Chrysler Motors
Physically-Challenged Resource Center at
1-800-255-9877.
CHRYSLER
MOTORS
FAMILY FORUM
I noted your letter in the
much information on the syndrome
and welcome to the RTS support
November/December 1988 issue of
at first. Because of a letter I wrote to
group!
EXCEPTIONAL PARENT.
EXCEPTIONAL PARENT five years
M. S.
I continue to try to gather
ago, I have been linked up with 95
California
information about as many
other families in the U.S. and I am
individuals with the syndrome as I
aware of a group in England and
This letter is in response to the
can. I am therefore sending you two
Ireland. I have corresponded also
Parents Search article on Rubinstein-
questionnaires, one for you to fill out
with Dr. Jack Rubinstein, the man
Taybi syndrome in the November/
and one for the doctor that knows
who named the syndrome.
December 1988 issue of
most about Alberto. I will need to
Lorrie Baxter is the head of our
EXCEPTIONAL PARENT. Further
see photos of Alberto and copies of
parent support group. She will send
information concerning Rubinstein-
x-rays of his hands and feet.
you all the information she has and
Taybi syndrome should be available
I look forward to hearing from
send you a sheet to fill out on your
from:
you.
son whereby you can share with all
Little People of America,
Jack H. Rubinstein, M.D.
of us your knowledge and things
National Headquarters,
Director, Cincinnati Center for
you've learned through being an
Al and Harriet Stickney,
Developmental Disorders
R/T parent.
Box 633, San Bruno, Calif. 94066
Elland and Bethesda Avenues
Our son is a joy to us. He has
(415) 589-0695
Cincinnati, Ohio 45229-2899
had thumb surgery and testes
surgery. He is generally quite
Marilyn A. Cohen/Coordinator
I saw your letter in
healthy. At five and a half, he is
Regional Cleft Palate Program
EXCEPTIONAL PARENT magazine
probably at the two-and-a-half-year
Cooper Hospital/Univ. Med. Ctr.
regarding your son, Alberto. We,
level mentally. He walks, runs, uses
too, have a son with R/T syndrome.
sign language and talks quite a bit.
His name is Matthew and he is five
He is very small for his age.
EHLERS DANLOS SYNDROME
and a half years old.
Please write me if I can be of
Like you, we were not given
any help. Be sure to write to Laurie
The following letter is in response
to M.H.'s request for information about
Ehlers-Danlos syndrome (Parents
"Hartley programs give my students the 'can
Search, November/December 1988).
do' attitude they need to succeed."
I read the letter from M.H. of
Thomas D. Sawyer, Special Ed Teacher
Tennessee asking for information
DeWitt High School
about Ehlers-Danlos syndrome type
Project STAR, Memory Match, My
IV in your November/December
Words, Double 'N Trouble, The
1988 issue.
Money Series, Wordsearch and
I am sending a packet of
other Hartley programs are perfect for
material about the disorder to M.H.
special ed.
The main thrust in teaching the
EXCEPTIONAL PARENT is always
learning disabled is to build self
welcomed here, and has become
esteem. Based on that, I fell in love
"must" reading material for me.
with the first Hartley program I saw
Keep up the excellent work. I'm sure
and I haven't been disappointed yet.
you have helped thousands of people
The teacher menus and options are
already.
clearcut and easy to use, and the
recordkeeping features are excellent. I
can modify any program to meet the
Nancy A. Rogowski,
needs of my particular students and
Executive Director,
help them achieve success.
Ehlers Danlos
Right now, I'm using Project STAR
National Foundation,
for my ESL students with very
P.O. Box 1212,
satisfying results.
Southgate, Mich.
48195
Hartley'
doesn't forget the teacher.
CALL
1-800-247-1380
FOR A FREE CATALOG.
12 EXCEPTIONAL PARENT
MARCH 1989
THE
LITTLE CHAIR
THAT DOES
Safe
Plus
A LOT.
Safety
Pluz
Today the right choice in strollers is the
Safety Plus 501. Meeting the positioning and
transportation needs of the one-to-five year
old child, the Safety Plus Model 501 is small
in size but big on features. More than a
stroller, this multi-purpose unit not only
positions properly, but also functions as a
removable positioning unit and a high chair.
Easy as 1-2-3, the adjustments make the
Safety Plus Model 501 easy to convert for
each purpose.
The seat and back cushions provide comfort
while the non-absorbent vinyl upholstery
resists stains and is simple to keep clean.
A turn of a knob and the seat-to-back angle
is changed from 90° to a maximum of 125°.
The angle in space crank tilts the seating unit
from 90° to a maximum angle of 120°.
This angle can be maintained in the stroller
and high chair position.
Adjustable height arms and individual
footplates allow the best positioning possible.
The sunscreen mesh canopy keeps the strong
rays of the sun from reaching the child,
while permitting air to flow through.
For more information call:
(800) 421-3349 Outside Ohio
The durable birchwood tray aids in positioning as well as
(216) 366-5611 Inside Ohio
feeding, communication and play time.
(216) 365-7249 FAX
147 EADY COURT
The benefits of 16 standard features makes this chair the right
ELYRIA, OHIO 44035
choice for your child.
SAFETY REHAB
SUNRISE MEDICAL
When calling, ask for "The Chair with the Safety Bear."
THE
would be helpful. "I don't understand
how you could question my love for you."
"I know Mom," he says without
conviction, "but you seem to love Carol
CHILD
more."
"Well Tom, let me explain it to you
this way - I love you all most." Before he
could respond with an attitude of being
I
brushed off, I continue.
"You're right. I love Carol most; I
love her most because she is my first born;
the first child holds a very special place in a
LOVE
mother's heart. They are the "experiment"
of more to come. They endure the trial and
errors of parenting: the overprotectiveness,
the sternness and the inexperience. I love
MOST
her most because she is my only daughter,
A mother
and she will someday be a woman, with
answers
whom I hope to have a friendship. I will
an important
always love her most.
"Tom, I love you most. You are the
question.
middle child; you are my first-born son.
You are the child who I could relax with
and enjoy; knowing that you weren't going
to break, I could delight in your antics.
"M
om,
"You have a special place in my heart
you
because you are a middle child. I can relate
love
to that position in the family because I, too,
Carol most, don't
am a middle child. I know the "too old, too
you?"
young syndrome," having to wait while the
I look up
youngest is cared for or the oldest is run
from the bills I am
with. I take you for granted, assuming that
paying, wondering
because you are the center of the entire
to myself, why at
family in your birth order, you are secure.
3:30 in the after-
"I will try not to assume that in the
noon my 14-year-
future, and I will take into consideration
old son, Tom, would ask that question.
the independence you must want and the
Stunned for a moment, I ask him the
frustrations you must feel. I take pride in
question again to be sure I understand what
you and who you are. You have the ability
he is asking. Like many mothers, I have
to love and stay loving under so many
been known to answer when I have not
circumstances. I love you most.
fully heard or understood the question. He
"Tom, I also love John most. He is the
repeats it and he wants to know why I love
youngest, his needs are greater than most.
his sister most.
He is special, as you know, because his
Looking over to Carol, I think, "You
needs are needs that cannot wait. His life is
better be honest with this kid, he's con-
centered around constant care and loving;
cerned, and he wants an answer."
he is dependent upon all of us for the very
Pushing the bills aside, I motion for
drink of water that we take for granted.
Tom to sit down beside me, while I
"I don't love John most because he is
frantically think of a way to assure him,
disabled; I love John most because he,
By Jo
without hurting Carol.
himself, is a loving person who delights in
Koles
"Tom," I said, stalling for time,
every facet of his life. I love the way he
thinking to myself that a phone call now
trusts us to meet his needs without
14
EXCEPTIONAL PARENT
MARCH 1989
"Never doubt
that I love
you the most
John enjoys the Alaska climate.
- not more,
not less, than
your sister
and brother."
demanding, he trusts us as much as we
should trust God to meet our needs. I love
John and Carol walk with their father.
John the most because he teaches me to
enjoy the simplicity of the day and to be
thankful for the children we have who can
run, jump, play, attain good grades,
verbalize their joys and share their fears.
I love John most for being a teacher to me.
"Tom, never doubt that I love you the
most - not more, not less, than your sister
and brother. I love you most. Each of you
is a one-of-a-kind, limited edition that
Jo Koles, pictured above with her father, Thomas
deserves in your own right to be loved
Cosgrove, is a free-lance writer and mother of
most."
three children, Carol, 18, Thomas, 15, and John,
I look to Tom waiting for a response.
13, who has cerebral palsy, epilepsy and a visual
impairment. Jo and her husband, Justin, live in
He reaches over to hug me, then gets up
Anchorage, Alaska, and are active boaters on
and goes about his day.
Prince William Sound.
EXCEPTIONAL PARENT
MARCH 1989
15
C.A.M.P.
1988
AWARD
WINNING
SUMMER
PROGRAMS
Summer provides children with a
break from the restrictions of the class-
room and provides an opportunity for
innovation in many areas of skill
development. Summer programs,
without the rigid structure of the school
year, can place more emphasis on
developing recreation and social skills.
The programs chosen to receive
EXCEPTIONAL PARENT's recognition
as award winners provide creative
opportunities for learning and growth
in important areas affecting the lives of
children with disabilities.
Timber Trails
A Girl Scout camp that truly
integrates girls with disabilities
into the traditional camp experience.
HASC Summer Program
Campers with disabilities are
encouraged to bring their brothers
NEW HORIZONS
and sisters to camp as counselors,
allowing siblings to learn, grow and
play together.
Children's Association for
Maximum Potential (C.A.M.P.)
Located on a U.S. Air Force Base,
this camp is able to serve children
with severe disabilities and medical
conditions by recruiting both military
and civilian volunteers.
New Horizons
This year-round program provides
a wide variety of social programs.
for people with developmental
disabilities from age six to 60.
16
EXCEPTIONAL PARENT
MARCH 1989
HASC SUMMER PROGRAM
AS
TIMBER TRAILS
EXCEPTIONAL PARENT MARCH 1989 17
Greater Hartford Jaycess, was opened and dedicated,
making the arts and crafts, radio and photography
programs completely accessible to all campers.
TIMBER
Each summer the camp staff includes a disabilities
coordinator who works directly with the council
disability specialist to meet the needs of each camper in
TRAILS
the program. Together they provide a general dis-
abilities awareness training session for all staff and
ongoing training for individual staff members who work
directly with each camper with a disability. Workshops
in therapeutic riding have been provided for riding staff,
and the barn area has a wheelchair ramp. The
disabilities coordinator, with the help of staff members
and volunteer aides, provides personal assistance to
he summer of 1988 marked the fourth consecutive
campers as needed.
T
year the Connecticut Valley Girl Scout Council's
The many benefits for campers and staff, with and
resident camp, Timber Trails, ran its summer
without disabilities, have been evident. Timber Trails
program for girls with disabilities.
staff members, many of whom have never worked with
Located in the foothills of the Berkshires in Tolland,
children with disabilities before, come away from camp
Mass., the camp provides a variety of program options,
with a positive attitude.
including Farm Living, Project Adventure, equestrian,
Waterfront staff successfully adapted a canoe to
aquatics, gymnastics, dance, radio, photography, arts
accommodate a camper who uses a wheelchair. Dance
and crafts, Brownie Tasters and Junior Sampler, for girls
entering grades 1-12. Program Aide Training and
Counselor-In-Training programs are also available for
girls 141/2 and up. Timber Trails operates for eight
weeks each summer serving girls in one, two, three and
four-week sessions.
As part of the disabilities program, girls with
disabilities have been mainstreamed at Timber Trails for
the past four summers. This summer 50 campers with
physical, medical and/or learning disabilities and/or
mental retardation attended. Timber Trails is unique in
its ability to provide an experience that truly main-
streams all campers.
Outreach is done to all Girl Scout council members
through a camp folder and the council newsletter.
Community outreach is done through special educators,
organizations that serve children with disabilities and
local newspapers. The council disability specialist
answers questions and evaluates whether a particular
child would be appropriate for the camp program.
Input from parents and teachers is obtained through a
special camp application.
Girls with learning disabilities, epilepsy, asthma,
diabetes, spina bifida, cerebral palsy, muscular
dystrophy, traumatic brain injury, hearing impairments,
visual impairments, Down syndrome, developmental
delay and neurological impairments have all been
successfully mainstreamed. All campers with dis-
abilities live in units with other girls of the same age
who are enrolled in the same programs.
Girls with mobility impairments are transported
around camp by means of a donated station wagon.
Ramps have been built in about one-half of the units, in
the infirmary and in the two program centers, which
also serve as dining halls. This past summer, a new
Waterfront activities are accessible to all campers.
building, which was built with funds donated by the
18
EXCEPTIONAL PARENT
MARCH 1989
Helping hands to give
your child freedom
to play in the bath
The Columbia
Wrap-around Bath
Support lets your child
experience all the fun and
therapeutic value of water
play while supported
safely and comfortably in
a normal seated position.
Safe - wide, stable base;
non-slip rubber mat.
Durable - reinforced
fiberglass yoke, rustproof
Timber Trails mainstreams girls
oversize PVC tubing for a
in a wide variety of programs.
rugged lightweight base
that's easy on your tub.
Adjustable - to fit your
instructors prepared a camper to perform in her first
child perfectly.
Versatile - as a go-
dance show - from her wheelchair.
anywhere support indoors
Many of the campers with disabilities come to
or out!
Timber Trails as their first away from home experience
Contact us for free
- and very often as their first experience with non-
catalog, and local dealer.
disabled peers. All campers at Timber Trails take
turns being "hoppers" in the dining hall (setting
COLUMBIA
MEDICAL
MFG. CORP.
tables, serving food) and doing unit "kapers"
Dept. EB, P.O. Box 633, Pacific Palisades, CA 90272
(cleaning bathroom areas, etc.) All campers at Timber
(213) 454-6612
Trails take swimming lessons, go boating and partici-
pate in a variety of camp programs. All campers
develop new skills, increase their self-esteem and
make new friends.
Although some campers with disabilities go on
to become active members of Girl Scout troops, it is
Florida's Best
not necessary for a girl to be a member to attend the
program at Timber Trails. Girl Scout camping
programs are open to all girls age six through
Sunrise Community for the Retarded Since
seventeen.
1969 Excellent services, modern facilities, dedicated
This summer Timber Trails had its first Program
staff and a rural sub-tropical setting all in one place
Aide with a disability. Kim was the first camper with
a disability mainstreamed at Timber Trails five
summers ago, before the special program for girls with
ACDD Accredited (Sole Florida agency)
disabilities had even begun.
Recipient of National Residential
Kim, who has spina bifida, then used her
Services Award (NAPRFMR 1986)
crutches to work her way around camp and was
Full-time physician on staff
transported in the camp golf cart. She returned each
Specialists in meeting individual needs
summer and was successful in a variety of camp
of children/adults with moderate to
programs and settings. This summer Kim served as a
severe developmental disabilities.
Program Aide in the arts and crafts program in the
new Jaycee Building.
Locations throughout Florida
Contact:
For more information about Timber Trails summer program
Michael J. Hart,
for girls with disabilities, contact Linda K. Miller, disability
Director of Admissions
specialist for the Connecticut Valley Girl Scout Council,
22300 S.W. 162 Avenue
74 Forest Street, Hartford, Conn., 06105, (203) 522-0163.
SUNRISE
Miami, Florida 33170
(305) 245-6150
EXCEPTIONAL PARENT
MARCH 1989
19
HASC
SUMMER
PROGRAM
T
he HASC Summer Program is a special camp for
children with multiple disabilities and severe
mental retardation. Originally started as an
outgrowth of the Hebrew Academy for Special
Children, an independent, private, non-sectarian school
for special children, at present, it is an independently
chartered camp that serves special children from all over
New York state and many from out of state as well.
Historically, the camp has served, among its many
children, a large number of children from the Orthodox
Jewish community of the New York City area.
The camp, located in Parksville, N.Y., is situated in
the Catskill Mountains. The HASC Summer Program is
two-fold: a summer school program complete with
special teachers, therapists and ancillary services as well
as a full camp experience replete with counselors,
specialty counselors, adaptive sports counselors and
HASC campers enjoy a cook out.
nature experiences common to any other summer camp.
The education and training of the children is lifted from
maximize his/her strengths and to develop in the
the limits of the classroom and the confines of the home
deficient areas to their fullest capacity. Even more
and placed into the overall natural living pattern of the
important, it fostered a shared closeness with the
special individual.
siblings and encouraged the development of healthy
There is integration of both components of the
social and emotional growth through shared experi-
camp experience, namely, the academic and the
ences. These siblings have become passionate advocates
recreational. The campers' Individualized Education
for the rights and needs of special people.
Plans are carried out by the special education teachers
The second program extends mainstreaming into
and therapists with the assistance of aides, who are also
the camping community to provide integrated experi-
the counselors in charge of the recreational component
ences for this population of children with disabilities.
of the program.
The HASC Summer Program is located in an area that
Thus, continuity of instruction is woven into the
has several other children's summer camps. These
fabric of the daily camp experience, be it language
camps were approached with a program aimed at
development, activities in daily living, adaptive motor
raising the consciousness of their children regarding
experiences, sensory perceptual development or
their special peers.
prevocational preparations. The enhancement of the
Interested counselors in training (CITs) from the
camp experience is provided through daily activities of
other camps volunteered a few hours a week to work
camp fires, dramatics, overnight trips, socials, carnivals
with campers with disabilities and their peers on joint
and other special events.
projects in the flower and vegetable garden at HASC
The camp has several innovative programs with far
Summer Program. Similarly, they volunteered to work
reaching aims. These special programs have to do with
on other projects such as canival and dramatics. Ball
cultural identity, social connectedness, emotional growth
clubs and sport groups from other camps came to play
and community mental health.
games in integrated intramural sport events. And most
The first of these programs encourages the siblings
impressive, two HASC campers were then invited to
of these children with severe disabilities to join the camp
spend two weeks integrated with their peers in a regular
as counselors and learn professional techniques of
bunk in one of the area camps following the preparation
stimulation and education that enable each child to
of the children after the joint activities.
20
EXCEPTIONAL PARENT
MARCH 1989
The third program reaches into the cultural identity
and personal roots of the children, many of whom had
limited participation in ethnic and cultural events due to
their disability. A number of children at the camp came
from Orthodox Jewish homes, but were never taken to
the synagogue and had not experienced the rite of
passage of becoming Bar Mitzvah.
During the summer, the HASC Summer Program
celebrated the Bar Mitzvah of those children whose 13th
birthday fell in the preceding year. The occasion was
marked with festive celebration, invitation to family and
friends and a special religious service at the camp. The
day culminated in a gala dinner complete with singing
and dancing.
Finally, the impact of the experience at the HASC
Summer Program was seen in the determination of its
counselors to involve the campers year-round in their
communities. Moreover, these young men and women
will set the tone on college campuses for further advo-
cacy for persons with special needs and the initiation of
programs for their integratation into their community.
For more information about the HASC Summer Program,
contact Director Bernard M. Kahn, Parksville, N.Y. 12768,
(914) 292-6821, or off-season at P.O. Box 119, Brooklyn,
Teamwork and woodwork training, just one of the many
N.Y. 11219, (718) 851-6101.
camp experiences at HASC.
Tadd and his friend Seth enjoy spending time
together in the school library.
Tadd operates the film strip
machine with help from the
ABLENET®
CONTROL SYSTEM.
Sharing activities with friends is one of the
many ways Tadd uses his ABLENET Control
Unit and Switch 100 to actively participate
in the events of daily living.
ABLENET offers products and services for
persons with severe disabilities. Our focus
is on simple technology and on services
which promote its effective use.
With the help of parents, teachers,
caregivers, and therapists, we are working
together to help others achieve.
Call us today at (612) 331-5958 or write
to ABLENET, 360 Hoover Street N.E.,
Minneapolis, MN 55413 for our new
1988-89 catalog.
EXCEPTIONAL PARENT
MARCH 1989
21
members is required to observe and work with a child
who has the disability discussed that particular day.
The camper-staff ratio is 1:1. An excellent group of
C.A.M.P.
teenagers, college students, teachers, professionals,
retired individuals and active-duty military personnel
volunteer their time to work with the children. Pushing
wheelchairs, feeding, changing clothing, showering,
toileting and assisting at the activities are all part of the
volunteers' responsibilities. Activities included
horseback riding, archery, canoeing, swimming, riflery,
and arts and crafts.
In pre-camp training, such topics as wheelchair
maneuvers and transfers, seizure precautions, lifting
techniques, and the campers' need for extra liquids, as
C
hildren's Association for Maximum Potential
well as other safety and first-aid related items, are
(C.A.M.P.), based on the Lackland Air Force
covered. The pre-C.A.M.P. training supplements a six-
Base in San Antonio, Texas, is a unique program
week Child Care Course taught by physicians, nurses,
in that it accepts children with varying disabilities,
therapists and special education teachers that all new
particularly those children who have not been served by
counselors take prior to the summer sessions.
other camps for the disabled. C.A.M.P.'s goal is to
One of the goals of C.A.M.P. is to provide parents
accept each and every severely involved child, even if it
an opportunity for respite. Most parents eagerly take
means that the child is discharged from and returned to
advantage of the break. For many of them the week is
the hospital after camp.
their "special time" with their other children. A popular
C.A.M.P. was founded in 1980 when Dr. Chris
aspect of the respite goal has been the addition of a
Johnson saw a need for a camp that would accept
Parent Retreat coordinated through the Lackland Air
severely disabled and mentally fragile children. San
Force Base chaplain's office. While the children are at
Antonio, the home of three major medical centers, has
camp, the parents participate in a recreational/
more than the usual number of children with involved
educational retreat at a nearby camp.
medical problems. Dr. Johnson envisioned C.A.M.P. as a
The parents have an opportunity to interact with
program that would serve this group of children:
other parents who have children with disabilities.
C.A.M.P.'s motto - no child is "too involved" to attend.
Horseback riding, swimming, fishing, canoeing and
In C.A.M.P.'s first year, three doctors, six nurses
plenty of leisure time are offered. Also, workshops are
and 40 high school and college students volunteered to
conducted that focus on family relationships and
take 50 children on a week long camping session. The
subjects relating to families with a child with a disability.
program has since grown to three one-week sessions and
When the retreat and camp end, both parents and
two weekend sessions serving more than 475 children.
children are better prepared to face the challenges that
In 1989, the program will be expanded to six to eight
lie ahead of them.
weeks due to the growing need for such a service.
C.A.M.P. is available to both civilian and military
Volunteerism makes it possible to serve so many
families. Because many families have transferred and
children. At each camp, 20-25 nurses and six-ten doctors
volunteers have moved, knowledge of C.A.M.P. has
volunteer their time to work at the camp. The nurses
spread across the United States and overseas.
and doctors dispense medications, work at the
infirmary, conduct night rounds, assist at the
activities and make friends with the campers.
The camp setting gives the medical staff an
opportunity to observe and interact with the
campers at their best in a setting outside the
hospital.
The practical learning experience is
enhanced by an approved Continuing Edu-
cation Program that is conducted at the camp.
Three hours of didactic instruction and one
hour of practicum account for 21 hours of
credit per week. Each day a different disability
(i.e., spina bifida, cerebral palsy, cleft palate)
is discussed in depth. Afterward, each staff
Volunteer Carol Bova works with a camper
in the water.
22
EXCEPTIONAL PARENT
MARCH 1989
INDEPENDENCE
The I*TEC Independent Transport System is a ceil-
ing mounted or free standing electromechanical system
which provides horizontal and vertical mobility for the
severely disabled. I*TEC systems offer increased
Counselors Paul Sheffield (left) and Dan Watson help
independence at home.
camper Lee Oliver mount a horse.
Dressing, bathing, rising from bed, transferring
to a wheelchair; all are easily possible for quadraplegics
without the assistance of round-the-clock attendants.
Most camps for children with disabilities share
the first two of C.A.M.P.'s "4-R" goals: recreation and
For Information Call
714/898-9005 CA
respite. However, C.A.M.P.'s staff is approximately
800/622-ITEC US
35 percent professional medical staff, allowing the
ITEC
Patented
Dealer Inquiries
accomplishment of the third "R," which stands for
&
5482 Business Drive, Unit C
Welcomed.
Huntington Beach, CA 92649 USA
rehabilitation.
The doctors, nurses, therapists and teachers help
each child (who is able) accomplish some rehab goal
while he/she is at C.A.M.P., whether it be self-
catheterization, wheelchair transfers, dressing or
feeding skills. The fourth and final "R" that is
EXCLUSIVE RESIDENTIAL SCHOOL
reorientation. Through the continuing education
FOR THE SEVERELY RETARDED
program, C.A.M.P. hopes to reorient the professional
& MULTIPLY HANDICAPPED
community (as well as the student counselors) to what
it is like to live with a child with a disability. At
Private, Non-Profit
C.A.M.P., they learn the many stresses that parents
Birth to 22 years
must cope with on a daily basis.
The C.A.M.P. program has also expanded in
Unusual Syndromes (including Rett)
Intense, round-the-clock trained stimulation
related areas to fill the needs of the families. The
expansion includes a year-round Child Development
Children make substantial progress
24 hour medical services
Center, a monthly Camp Brother/Camp Sister
Program, a monthly Parents' Night Out, a social
Extensive physical therapy
Monthly orthopedic clinics
work program and an equipment loan program.
C.A.M.P. serves as a role model for other
Feeding programs
programs around the country. This last year, Dr. Chris
Augmentative communication
Parental involvement welcome
Johnson, founder and executive director of C.A.M.P.,
Community-based Victorian homes
was selected as "Pediatric Advocate of the Year" by
Year-round
Contemporary Pediatrics for her excellent work with
C.A.M.P. Dr. Johnson is the executive director of
C.A.M.P. and does so as a volunteer.
Contact: Gail Charpentier, Dir.
BERKSHIRE CHILDREN'S
COMMUNITY
For more information about C.A.M.P., contact C.A.M.P.
Program Director, Pat Kozar, Lackland Air Force Base,
41 Taconic Ave.
San Antonio, Texas 78236-5000, (512) 671-2598.
Great Barrington, MA 01230
(413) 528-2523.
EXCEPTIONAL PARENT
MARCH 1989 23
12,000 hours of activities for over 1500 participants.
The New Horizons program consists of four major
types of activities:
NEW
Nite Owl Excursions are weekly evening programs
to such locations as county fairs, professional and colle-
giate athletic events, theater and dance productions and
HORIZONS
other events. Participants are involved for an eight-
week program and may re-enroll every session.
Week-end Caravans are overnight weekend trips to
such areas as the local mountains for a ski trip or to the
beaches. Participants are introduced to a new activities,
such as camping skills and, most importantly,
independent living skills situations.
Six-Day Caravans are extended camping trips to
T
he YMCA New Horizons program is a social and
various locations in Arizona, Utah, Nevada and
recreational program for persons in Orange and
California, with the emphasis on sight-seeing, group
Los Angeles Counties, Calif., with developmental
skills and camping skills.
special needs, such as autism, cerebral palsy, epilepsy
Special Caravans are major trips offered three to
and mental retardation.
four times a year to such locations as Hawaii, Mexico,
Since 1974, New Horizons has been committed to
Washington, D.C., or Disney World in Florida.
the philosophy that the community must provide
The age range for our programs is from six to
constructive leisure-time activities for its citizens with
70 for our travel trips. Our evening excursions are for
disabilities New Horizons is unique because it operates
participants 15 years and older.
year-round and offers a wide range of activities. In 1986-
The New Horizons programs also provide respite
87 alone, the New Horizons program provided over
for the parents and care providers of the participants.
24
EXCEPTIONAL PARENT
MARCH 1989
New Horizons families may also receive funding from
the Developmental Disabilities Center. The DDC is a
EXCEPTIONAL
state funded, nonprofit organization for persons with
developmental special needs. This organization will
PARENT
fund New Horizons caravans as a respite for parents
allowing the participants to go at no cost to the parent.
Participants, on the average, can attend one caravan a
month through the DDC contracts.
The variety of age-appropriate activities offered
at New Horizons allows a participant to have
Announces the
something to look forward to whether it ends up being
Best School Mainstreaming Award
the "night out on the town" or the "weekend of
and the
camping." New Horizons offers the participant many
different environments in which they can put to use
Technology and Everyday Life Award
their skills from school or workshop. New Horizons
programs reinforce the importance of "self worth"
with the "I, too, can go camping," or "I, too, can travel
with my friends" attitude.
Anyone can nominate a program for the
Social and recreational training, such as "rolling
Best School Mainstreaming Award.
a sleeping bag" or "cooking on a camp stove" are skills
Please submit a brief description
that a participant may never have had the chance to
of any deserving program.
learn without the program. New Horizons informally
Awards will be given in three categories:
trains participants in other skills, such as managing
pre-school, grade school and high school.
money, grooming and how to act and cooperate in a
group situation.
Through the program there has been an increase
in positive interactions they have with the general
The Technology and Everyday Life Award
community. The community sees the population in a
is open only to parents.
more favorable light, reinforcing the concept of
Please submit a personal account of how
"mainstreaming" the participant with special needs
technology has expanded the opportunities
into the general environment.
available to your child.
As a result of being involved in recreational
activities within the community, program participants
may exercise a good deal of freedom of choice and
Maximum entry length for both contests:
independence. Participants are encouraged to act
1500 words.
independently in all situations, but also have the
assurance that the staff and volunteers will be there to
Please include pictures of program/child
assist them if necessary. The importance of practicing
with your entry.
their social skills in actual situations is vitally
Deadline: June 1, 1989.
important for the individual with special needs to ease
their ultimate transition into the community.
New Horizons participants are able to learn
Mail entries to:
purposeful and constructive leisure time activity skills
that relate to community living skills. These skills
Mainstreaming Contest
allow the community to accept the special needs
or
individual in a more positive manner, as well as
Technology Contest
enhance the participants' understanding of themselves
EXCEPTIONAL PARENT
and the community in which they live.
1170 Commonwealth Avenue
The year-round nature of the program allows a
participant to continue his or her social/recreation
Boston, Mass. 02134
training on a long-term basis. This has been shown to
be the most effective method of acquiring new skills.
The winners will be announced in the
For more information about the YMCA New Horizons
program, contact Program Director, Larry Herschler, New
September and October issues of
Horizons Building, 205 West Civic Center Drive, Santa Ana,
Calif. 92701, (714) 547-4121.
EXCEPTIONAL PARENT
EXCEPTIONAL PARENT
MARCH 1989 25
1988 SUMMER PROGRAM
COMMENDATIONS
Bay Cliff Health Camp
With so many outstanding entries
Harlow Block
submitted to this year's summer
102 W. Washington Street
program contest, it was a difficult task
Marquette, Michigan 49855
to chose only four EXCEPTIONAL
Helping Hands Day Camp
PARENT Summer Program Award
Phyllis Jackson, Director
winners.
520 26th Street
Because all of these programs do an
Virginia Beach, Virginia 23451
excellent job of providing meaningful
Rutherford County Camp B.E.S.T.
summer experiences for children with
(Bringing Easter Seals to Tennessee)
disabilities, we want to take this time
Carolyn Diane Moore, Director
to commend all of the program staff
Smyrna, Tennessee
members and volunteers for their
The Special Needs Day Camp
dedication and commitment.
Erika Schwartzkopf, Director
City of Middletown Parks
and Recreation Department
Lawrence School
Middletown, Connecticut 06457
Search Day Program, Inc.
73 Wickapecko Drive
Ocean, New Jersey 07712
Summer Campus Institute
on Augmentative
Communication
Temple University
Philadelphia, Pennsylvania.
Sponsored by Temple
University, Prentke Romich
Company, Office of Vocational
Rehabilitation, Innovating
Worthy Projects and Semantic
Compaction Systems
UP with Kids
Dvenna Duncan, Director
The University of Portland
School of Education
5000 North Willamette Blvd.
Portland, Oregon 97203
Mainstreamed campers play with soap bubbles at the UP with Kids program,
run by the University of Portland.
26
EXCEPTIONAL PARENT
MARCH 1989
Exciting Options for Sensory
Motor Experiences
Sammons offers many colorful, durable options for
positioning, neuro developmental treatment and sensory
integration programs at home, in the clinic or at school.
Featured here are just a few of the challenging and
visually appealing designs children can enjoy.
Neuro
Siamese Scooter Board
Developmental
Training Balls
Versatile shapes, forms and sizes facilitate proper positioning,
development of sensory and motor skill experiences
for children through adolescence. Whatever your
therapeutic needs, you'll find a complete line of
quality sensory motor products, as well as
orthopaedic products and ADL items, at
Fred Sammons, Inc.
With over 3,000 items available, our
inventories are nearly 98% stocked at any
given time, SO you get everything you
order. Healthcare professionals will
appreciate dealing with a single vendor for all
their therapy needs. Parents will appreciate the
convenience of ordering directly through our
Enrichments program.
Quality, service and value has been our priority
since 1958.
Our telephones are answered 24 hours a day, seven
days a week.
Tumble Forms® Rolls
Our friendly Customer Service/Sales representatives
will answer your questions or take your order
weekdays from 7:30 AM 'til 5:30 PM (CST).
Grasshopper
For more information, call our toll-free number:
Mobile
Positioning
1-800-323-5547
System
TO:
Fred Sammons
145 Tower Drive
Dept. 438
1989 Bissell Healthcare Corporation
Burr Ridge, IL 60521
Please send me the following catalogs:
Professional Healthcare
Enrichments
Orthopaedic
Name
Title
Facility
Dept
FRED SAMMONS, INC.
CARING
Address.
BeOK!
@BISSELL
since
City
State
Zip
145 TOWER DRIVE, BURR RIDGE, IL 60521
1958
Telephone (
)
PLAY TIME:
Meeting the needs
of your child
Parents and
professionals
P
articipation in recreational and social
recreational and social skills at home. By
activities is an important aspect of life
asking the right questions, parents can
for children with disabilities. These
must collaborate
learn about programs as well as contribute
activities can provide many opportunities:
to them. The following questions enable
to design
exposure to new friends, development of
parents to evaluate and contribute to the
effective
leisure skills, development of important
development of their child's current and
recreation
skills such as motor, social and academic
future recreation programs.
skills, and the enhancement of physical
programs.
health and conditioning. Additionally,
QUESTION 1: Are the recreational
maladaptive behavior (e.g., tantrums, self-
activities consistent with your child's
injurious behavior) is often reduced or
current skill level?
eliminated as new recreational skills are
acquired.
Any recreation program should begin
Although recreation programs for
with an extensive assessment that provides
children with disabilities are usually
an inventory of your child's abilities and
designed by a therapeutic recreation
needs. This assessment should identify
specialist or special education teacher, the
your child's physical characteristics, the
success of these programs often depends on
appropriateness and relevancy of planned
the assistance of parents or other care
activities and an indication of his/her
providers. Parents have key information
proficiency in these activities. The criteria
regarding their children's needs, abilities
for developing a beneficial program
and personal preferences. Collaboration of
includes your child's potential for success,
parents and professionals is essential,
how often your child will be given an
because human service workers need to
opportunity to engage in that activity, and
By Stuart J.
become aware of each child's character-
how the activity relates to other areas of
Schleien,
istics, abilities and needs when designing
your child's life.
effective programs.
The needs assessment becomes the
Cheryl K.
Also, parents and care providers need
"guide" for developing a complete
Baldwin &
to become familiar with the instructional
recreation and socialization program based
Cheryl L. Light
techniques of a program in order to
on your child's skill level and needs. Since
continue to develop their children's
the needs assessment is concerned with
28
EXCEPTIONAL PARENT
MARCH 1989
demonstrated behaviors and abilities, it
This input can help professionals make
cannot be completed satisfactorily without
informed decisions concerning materials to
input from parents, who are the most
make available and possible skills to target
familiar with their child's use of free time.
for instruction.
QUESTION 2: Are your child's and the
QUESTION 3: Are selected activities both
family's recreational preferences being
relevant and age-appropriate?
considered?
Your child's recreational program
Before a recreation program is started,
should include relevant activities that will
an attempt must be made to assess whether
be useful and remain chronologically age-
the planned activities are ones that your
appropriate throughout his/her lifetime.
child and family presently enjoy or would
For example, activities such as making a
enjoy together, provided your child had at
sandwich or playing pinball will remain
least some of the skills necessary for
useful and appropriate forever and could
participation. Your child is more likely to
be pursued in a more sophisticated manner
play appropriately with materials that
throughout one's lifetime. Similarly,
he/she has access to and prefers. Preferred
cooking and table game activities are
activities and materials may not be obvious
appropriate and important lifetime leisure
to professionals.
pursuits that a person can enjoy alone or
As parents, you can provide helpful
with others.
information concerning the interests of all
Also, these and similar activities
members of your family. You can also offer
typically promote social interaction with
the therapeutic recreation specialist or
peers without disabilities, since acquisition
teacher listings of accessible materials your
of these skills results in compatible interests
child seems to enjoy and activities he/she
and repertoires.
selects at home.
For example, learning to play with a
If you are uncertain of your child's
Lite-Brite™ toy (by Hasbro) would be more
preferences, several play objects could be
relevant and age-appropriate than learning
presented to your child and the materials
to manipulate pegs in a peg board.
most often selected or manipulated, noted.
Although both activities develop eye-hand
EXCEPTIONAL PARENT
MARCH 1989 29
27th YEAR
CAMP
Modifying activities and materials
HUNTINGTON
can increase your child's
independence and provide for a wider
selection of accessible recreational
High Falls, New York 12440
and social pursuits.
A Residential Summer Camp for the:
LEARNING DISABLED
NEUROLOGICALLY IMPAIRED
MILD-MODERATE RETARDED
coordination through the placing of pegs in a peg
board, the Lite-Brite™ also provides the child access to
the activities of peers.
Offering 2-4-6-8 week sessions.
Coed all ages.
QUESTION 4: Do the recreational activities
ACA accredited.
contribute to skill development in other areas?
Approved by NYS Department of Health.
Ideally, the activities selected for your child
should enhance the development of skills that are
For more information call or write:
desirable for a variety of settings. Recreational
Bruria K. Falik, Ph.D, Director
activities could provide the ideal medium for
49 Pleasant Ridge Drive
Poughkeepsie, NY 12603
expanding social, behavioral, communication,
(914)462-0991
problem solving, and motor skills.
For example, the age-appropriate board game
Simon™ (by Milton Bradley) involves the use of fine
motor skills to manipulate switches in the game, gross
motor skills such as arm extension to depress the
ALL YOUR
panels, social skills to take turns and share materials,
and cognitive skills to remember the order in which
MEDICAL SUPPLIES
the plastic panels light up. Learning to play a game
UNDER ONE ROOF
like Simon™ may also result in making new friends.
QUESTION 5: Are new recreational and social skills
West Medical offers the most complete catalog
taught systematically?
of medical supplies delivered to your door!
*
100 PAGES *
Facilitating involvement in recreational and
* MORE THAN 1200 ITEMS *
social activities that are useful, age-appropriate and
* REPRESENTING 70 MANUFACTURERS *
enjoyable for your child will probably require
systematic skill training. Components of systematic
Call 1-800-222-6800
instruction include careful observation of your child,
task analysis, prompting and correction procedures,
West Medical features: Incontinent Care Products,
and positive reinforcement strategies.
Home Medical Equipment, Nursing Care Products,
In a task analytic approach, the targeted activity
Diabetic Home Testing Equipment & Supplies,
(e.g., horse-shoes) is broken down into its component
Pediatric Rehabilitation Equipment, Enteral
parts (e.g., grasping horseshoe, pitching horseshoe,
Feeding Equipment and Nutritional Supplements.
turn taking, measuring distance of horseshoes to
stake/dowel) that are teachable and observable.
SHOP AT HOME
Through the task analysis, the instructor determines
CALL OR WRITE FOR FREE CATALOG
which components of the activity your child can
10% DISCOUNT ON FIRST ORDER
currently perform independently and the parts
needing additional instruction.
West Medical, Inc.
Parents can become involved in this process by
using similar instructional procedures when your
411 Waverley Oaks Road
child participates at home.
Waltham, Massachusetts 02154
30
EXCEPTIONAL PARENT
MARCH 1989
Outdoor
Freedom
1988 RSI
Patent Pending
The Baby Jogger
R
Mobility and comfort combine for both parent
and child! The Baby Jogger offers new models
to suit a variety of special needs. Go anywhere
with the ultimate all-terrain stroller. Travel over
gravel, grass, curbs, even sand and snow with
"The stroller for runners." Trips to the beach or
park are easy with the smooth-rolling three
Rephal '85
wheel design. A variety of models available for
children of all ages. FREE BROCHURE.
Racing Strollers Inc.
516E N. 20th Ave.
QUESTION 6: Are effective activity adaptations
Yakima, WA 98902
(509) 457-0925
being used?
Safe, stable, endorsed by pediatricians.
Modifying activities and materials can increase
your child's independence and provide for a wider
selection of accessible recreational and social pursuits.
However, when modifying an activity it is always
PROTECT YOUR KIDS!
important to keep the activities and materials as
KIDSCOPE
normal or standardized as possible. A little creativity
EMERGENCY INFORMATION PROFILE
and innovation can make the adaptation process a
Child's Name SUSAN SMITH
Birthdate 8-4-83 Birthplace DEERFIELD IL
Parent or Legal Guardian ALICE SMITH
fairly simple one.
Home Phone 555-1111 Work Phone (302) 555 - 2020
Address 12 PINETREE LANE
There are four options that can be considered
City DEERFIELD IL
State IL
Zip 20132
Emergency Contact ALICE SMITH
Phone 302 ) 555 - 1111
when adapting activities: 1) material adaptations
School WALNUT ELEMENTARY
Phone (302) 555-3472 555-3472
Physician DR. DENNIS DUKE
Phone 302) 555-7211
(e.g., In an arts & crafts activity, using four-holed
Preferred Hospital MERCY HOSPITAL
Phone (302) 555 - 1713
Insurance Carrier BLUE CROSS
Policy 742 000 00
training scissors rather than traditional two-holed
VITAL INFORMATION
Sex (circle one) Male Female
scissors); 2) rule or procedural adaptations
SS 100-10-1001
Height
39"
Weight
48 LBS
(e.g., when learning to play tennis, allowing more
Color of: Eyes BL Hair BLONDE
Race CAU
Religion PROT
than one bounce before returning the ball); 3) skill
Health Problems NONE
Allergies PENICILLIN
sequence adaptations, which focus on preparation
One look inside new
Birthmarks/Scars NONE
before the actual activity, (e.g., when eating at a fast-
Permission to treat in an Emergency YES X NO
KidScope Photo ID
Guardian's Sig.X alice Smith
food restaurant, one would be prepared to order a
Pendant instantly reveals your
Date 7-15-88
KS #
meal with picture cards before entering the restau-
child's photo, emergency contacts
rant); and 4) lead-up activity adaptations
and health information. Peace of mind for you, protection for
your child if lost or injured. Attractive black or white Delrin
(e.g., learning to play kick ball before trying to
plastic is watertight, hypo-allergenic. Fun for kids of all ages to
master the game of softball).
wear as necklace or bracelet. Endorsed by National Emergency
Materials, rules or procedures, and skill
Medicine Association.
sequences can be modified, as well as making the
INTRODUCTORY PRICE -$12.95, TWO FOR $19.95
facilities, themselves, architecturally accessible.
CREDIT CARD ORDERS 1-800-633-6933 (MC, VISA, AE)
Parents are often familiar with ways of adapting
Or send check or M.O. to KidScope, P.O. Box
materials and routines for daily living. This
290116 Dept. A, Davie, Florida 33329. Include $2.50
KID'
S/H. Fla. residents add 6% tax. For free literature,
information can be very helpful to staff when
send SASE. Allow 4-6 weeks delivery.
designing and implementing such programs.
30-day money back guarantee.
EXCEPTIONAL PARENT
MARCH 1989 31
THERAPEUTIC TOYS, INC.
THEY SAID THE
MULTI SENSORY MOTIVATOR
WAS VERY VERSATILE, BUT
DION'T KNOW IT WAS
UNIVERSAL
MAYBE NEXT TIME
WE SHOULDNT TELL
THEM THE CORD CAN
BE PLUGGED INTO
ALMOST ANYTHING.
SCHOOL
Rapharl 89
Call or write
TAYLOR
for a FREE
catalog to:
THERAPEUTIC TOYS, INC.
QUESTION 7: Are your child's recreational and
91 Newberry Road, East Haddam, Connecticut 06423
social skills being enhanced and maintained over
Connecticut residents: (203) 873-9509
time?
Outside Connecticut: 1-800-638-0676
If your child is not provided the opportunity to
use his/her newly acquired skills outside of the
training environment (e.g., school, community
recreation center, physical education class, YMCA), it
CAR TRAVEL WITHOUT
is unlikely that these skills will be maintained. It is
critical that participation in the targeted activity be
THE TRANSFER
encouraged by professionals and parents in a variety
of environments and with as many different people as
possible.
An excellent way for parents and professionals to
work together is to share resources. A loan-out system
whereby parents check-out or borrow games or toys
for a weekend (similar to a library book loan
procedure) is a sure way to encourage recreational
participation at home. Having your child bring some
of his/her own play materials (e.g., favorite games,
hobbies, cards, musical instruments) to the recreation
program can also promote social interaction with
Travel in style and comfort
peers and provide opportunities to practice previously
Wheelchair folds to become
acquired skills.
car seat
QUESTION 8: Is your child being integrated into
No permanent modifications
existing community recreation programs?
CALL FOR FREE BROCHURE
Participation in existing community recreation
1-800-556-7355
and social programs, along with the segregated
in RI CALL 765-0130
programs that schools and community centers may
provide, can greatly enhance the overall normalization
KG Engineering
process. As a participant in community-based
115 Front St., P.O. Box 1040
auto-mate™
programs, your child has the opportunity to interact
Woonsocket, RI 02895
32
EXCEPTIONAL PARENT
MARCH 1989
with peers without disabilities and with the
community at large. Support should be provided for
locating appropriate, architecturally and program-
matically accessible programs. Often, a care provider
or advocate can attend a program with a child for
additional support and on-site instruction.
Recreational and social programming for
children with disabilities is an ongoing process best
achieved when cooperation and understanding
between therapeutic recreation specialists, teachers
and parents exist. Effective networking creates
additional opportunities for your child. The
opportunity to access different environments, to
interact with peers, and to make friends are a few of
the many benefits to participation in recreational and
A transitional residential/vocational
social programs. As parents and professionals become
program for 30 young adults with
better acquainted and informed, program quality can
learning disabilities, ages 17-35.
only be enhanced.
Individualized instruction in independent
living, work habits, job acquisition, and
social skills. Licensed. Founded 1972.
Call (203) 397-1714.
For further reading on this topic, the authors suggest
consulting the following publications:
Chapel Haven
Schleien, S. and Ray, M.T. (1988). Community
Recreation and Persons with Disabilities: Strategies
1040 Whalley Ave., New Haven, CT 06515
for Integration. Baltimore: Paul H. Brookes
Publishing Co., $25.95.
Wehman, P. and Schleien, S. (1980). Assessment
and selection of leisure skills for severely handicapped
individuals. Education and Training of the Mentally
TWO NEW BOOKS on recreation
Retarded, 15(1), 50-57.
aB
and art from the American Foundation
Wuerch, B. and Voeltz, L. (1982). Longitudinal
for the Blind
Leisure Skills for Severely Handicapped Learners: The
ACCESS TO ART:
Ho'onanea Curriculum Component. Baltimore: Paul
A MUSEUM DIRECTORY FOR BLIND AND
H. Brookes Publishing Co., $17.95.
VISUALLY IMPAIRED PEOPLE
Published jointly by the American Foundation for the Blind and
the Museum of American Folk Art, ACCESS TO ART lists art mu-
seums and other facilities with services for blind and visually im-
paired visitors. A valuable resource for visually impaired persons,
their families, museum staff, art therapists, recreation workers,
Stuart J. Schleien, Ph.D.,
rehabilitators and special educators, ACCESS TO ART contains
is an associate professor of
resource sections on art publications in braille, on cassette and
therapeutic recreation and
special education at the
in large print, teaching art to visually impaired persons, and mu-
University of Minnesota's
seum accessibility.
School of Physical
ISBN 0-89128-156-8 Available in large print, cassette, and braille editions.
Price $11.95
Education and Recreation.
Dr. Schleien has written
DIRECTORY OF CAMPS
extensively on leisure/
FOR BLIND AND VISUALLY IMPAIRED
recreation, community
integration and persons with
CHILDREN, YOUTHS, AND ADULTS
developmental disabilities.
This publication includes over 200 camps in the U.S. Descriptions
include addresses, phone numbers, contact people, information
on the camp season and activities.
Cheryl L. Light and Cheryl K. Baldwin are staff
ISBN 0-89128-159-2 ISSN 1041-4649 AFB Cat. No. PIL159 Price $7.95
members of the Therapeutic Recreation/Outdoor
Education Integration Grant Project at the University of
To order, send payment along with title of book(s) requested (in-
Minnesota. Both are currently graduate students in the
clude postage charge of $2.50; add $1.00 per book for each add'l
book ordered) to: American Foundation for the Blind, Dept. KS, 15
University of Minnesota's Recreation, Park and Leisure
W. 16th St., New York, NY 10011; or call (201) 862-8838. For fur-
Studies program.
ther information call our toll-free hotline, 1-800-AFBLIND (232-
5463); NY residents call (212) 620-2147.
EXCEPTIONAL PARENT
MARCH 1989 33
RESOURCE SECTION
Directory of National Recreation Organizations
Accent on Information
Association
Canada K1B 5N4
P.O. Box 700
of Handicapped Artists
(613) 748-5685
Bloomington, III. 61701
5150 Broadway
Governs 10 sports, most with junior
(309) 378-2961
Depew, N.Y. 14043
divisions. Programs start at age 8.
Database information on recreation
(716) 683-4624
Provincial branches in every province
and disabilities available by phone.
Company that markets cards and
from which 80 juniors participate in
All searches charge a small fee.
calendars of mouth and foot painters.
competition at one central location.
Information on how to join, where to
American Alliance for Health,
get supplies and adaptive equipment
Committee on Recreation and
Physical Education, Recreation
is available by calling or writing.
Leisure Newsletter
and Dance
President's Committee on
Adapted Physical Activity Council
Employment of People with
1900 Association Drive
Disabilities
Reston, Va. 22091
Washington, D.C. 20210
(703) 476-3430
(202) 653-5044
Membership organization for
Magazine aimed at employers
recreation teachers and leaders.
containing a section devoted to
Publishes Able-Bodies newsletter
recreation.
that reports to membership on
successful recreation programs,
adaptations and methods.
SCOUTING/USA
Boys Scouts of America,
Scouting for the Handicapped
1325 Walnut Hill Lane
P.O. 152079
Irving, Texas 75015
(214) 580-2000
GIRL SCOUTS
ACA
Open to any youth ages 6-20. Boy
Scouts will adapt a program to the
special needs of the youths involved
Girl Scouts of the USA
ACCREDITED
and work with the parents for
Martha Jo Dennison
support, involvement and leadership.
CAMP
830 Third Ave. & 51st St.
Contact the local Boy Scout Council.
AMERICAN CAMPING ASSOCIATION
New York, N.Y. 10022
Canadian Association
(212) 940-7736
for Disabled Skiing
Open to all girls ages 5-17,
Box 307
kindergarten-12th grade. National
Kimerberley, British Columbia,
office will help parents coordinate
American Camping Association
with local Girl Scout Councils.
Bradford Woods
Canada V1A 2Y9
5000 State Road 67 North
(604) 427-7712
Martinsville, Ind. 46151
Governing body of nine provincial
Handicapped Scuba Association
116 W. El Portal, Suite 104
(317) 342-8456
divisions. Specific programs within
San Clemente, Calif. 92672
Accredits camps nationwide and
divisions, no age limits.
(714) 498-6128
publishes A Guide to Accredited
Camps ($9.95), which lists over
Canadian Recreational
Programs available to young adults.
2,000 approved camps, including
Canoeing Association
Participation requires another family
member or adult to work with the
listings by disability. Catalog of over
P.O. Box 500
person with a disability in a team.
450 titles on camping and nature
Hyde Park, Ontario,
also available. Orders only, call
Canada NOM 1Z0
HEALTHsports, Inc.
1-800-428-2267.
(519) 473-2109
1455 West Lake Street
More information available in
videocassette or manual form.
Minneapolis, Minn. 55408
American Wheelchair Sailing
(612) 827-3232
Association
Ski for Light International, an event
Duncan Milne
Canadian Wheelchair Sports
512 Thirtieth Street
Association
for blind, physically handicapped and
160 James Naismith Drive
guides. Program also sponsors
Newport Beach, Calif. 92663
Gloucester, Ontario
events at local and regional levels.
34 EXCEPTIONAL PARENT
MARCH 1989
RESOURCE SECTION
I CAN Network
National Handicapped Sports
Provides technical assistance for
University of Virginia
and Recreation Association
National Parks to improve
Adapted Physical Education Program
1145 19th St. N.W., Suite 717
accessibility to people with special
221 Memorial Gymnasium
Washington, D.C. 20036
needs, focuses primarily on
Charlottesville, Va. 22903
(301) 652-7505
correcting architectural barriers.
PE Helpline: (804) 924-6192
Family-oriented programs that focus
Responds to requests for informatic
on involving people with disabilities in
National Theater of the Deaf
regarding physical education and
various recreational activities. Fifty-
P.O. Box 659
sport opportunities for people ith
seven chapters in 34 states, offering
Chester, Conn. 06412
disabilities. Works to facilitate
such programs as aerobics, skiing,
(203) 526-4971
communication between athletes,
and white-water rafting. Most
Two touring companies: National
parents, teachers, professors and
programs are open to all ages.
Theater of the Deaf and Little
students in the field of adapted
Theater of the Deaf, a family oriented
physical education.
The National Hookup
program that appears at schools and
Ruth B. Meyette, Editor
parks across the country. Tour
International Foundation
32 Margaret Drive
schedules are available.
for Wheelchair Tennis
Albany, N.Y. 12211
Peter Burwash Associates
(518) 459-8563
National Therapeutic
2203 Timberloch Place, Suite 126
Newsletter published by Indoor
Recreation Society
The Woodlands, Texas 77380
Sports Club for the Physically
3101 Park Center Drive
(713) 363-4707
Disabled. Call or write for informa-
Alexandria, Va. 22302
Connects wheelchair tennis players
tion or for a copy of the newsletter.
(703) 820-4940
with professional players for lessons.
Organization serving professionals,
National Park Service
associates and agencies that provide
International Wheelchair Road
Division of Special Programs
recreational services to people with
Racers Club, Inc.
and Populations
disabilities. NTRS also provides
Joseph M. Dowling, President
P.O. 37127
information on local resources and
30 Myano Lane
Washington, D.C. 20013-7127
materials.
Stamford, Conn. 06902
(202) 343-4747
(203) 967-2231
Keeps wheelchair road racers
up to date on races and other
events through newsletters.
SNUG AS A BUG IN A
SNUG SEAT!
The Itinerary Magazine
P.O. Box 1084
Bayonne, N.J. 07001-1084
(201) 858-3400
Magazine for travelers with dis-
abilities, also organizes tours.
National Archery Association
1750 E. Boulder St.
Colorado Springs, Colo. 80909
(719) 578-4576
Nationwide program for children
under 18. Membership application
and more information are available.
National Foundation
for Horsemanship
A completely adjustable seating system designed for infants and small
for the Handicapped
children that provides proper positioning, without looking like "special"
Box 462
equipment. The "SNUG SEAT" comes with a standard set of poly-
Malvern, Pa. 19355
ethylene foam pads which are used to support and position the child. In
(215) 644-7414
less than an hour, a qualified seating specialist can fit a child on site,
Advisory center for the evaluation of
place the cover over the shell, and the system is ready for use. The
programs and the exchange of ideas
and experience in therapeutic horse-
"SNUG SEAT", which comes in two sizes, is versatile enough to be used
manship. Sponsor of an international
as a crash approved car seat or interface with stroller and trolley bases.
conference of riders with disabilities
A multi-positional acrylic tray is available for feeding and table top
to be held September 1989.
activities. For more information, please call or write:
SNUG SEAT, INC.
P.O. BOX 1141, MATTHEWS, NC 28106 704-847-0772
EXCEPTIONAL PARENT
MARCH 1989 35
CHARLES C THOMAS PUBLISHEF
RESOURCE SE
ION
Anetzberger, Georgia J.-THE ETIOLOGY OF
National Wheelchair
Recreation Information
ELDER ABUSE BY ADULT OFFSPRING. '87, 144
Athletic Association
Management
pp. (7 x 10), $27.25.
ISBN 0-398-05297-2
1604 E. Pike's Peak Ave.
U.S. Department of Agriculture,
Baxter, Arlene-TECHNIQUES FOR DEALING
Colorado Springs, Colo. 80909
Forest Service
WITH CHILD ABUSE. '85, 118 pp., 2 il., $24.75.
(303) 597-8330
ISBN 0-398-05110-0
South Building
Juniors program for children ages 6-
12th St.& Independence Ave., S.W.
Baxter, Arlene-Techniques for Dealing with
18 offering six sports: airguns,
Washington, D.C. 20250
CHILD SEXUAL ABUSE. '86, 158 pp., 3 il., $25.50.
ISBN 0-398-05220-4
archery, swimming, table tennis,
(202) 382-9402
track and field and weightlifting.
P
id S outdoor recreation on
Baxter, Arlene-TECHNIQUES FOR DEALING
nat nal lands. Also works on
WITH FAMILY VIOLENCE. '87, 158 pp. (7 X 10), 2
il., $27.25.
ISBN 0-398-05369-3
National Wheelchair
projects to improve access for people
Basketball Association
with disabilities. Local projects in the
Bernhard, Kathleen Fullerton-JEALOUSY: Its Na-
110 Seaton Building
works include brochures on the
ture and Treatment. '86, 122 pp., 8 il., $23.00.
ISBN 0-398-05243-3
University of Kentucky
accessibility of specific regions.
Lexington, Ky. 40506
NEW!
(606) 257-1623
Slate and Style
Besharov, Douglas I.-PROTECTING CHILDREN
Juniors Division of NWBA available.
National Federation for the Blind
FROM ABUSE AND NEGLECT: Policy and Practice.
'88, 500 pp. (7 X 10), 26 tables, $68.75.
Communities with existing youth
2704 Beach Drive
ISBN 0-398-05428-2
teams receive information and
Merrick, N.Y. 11566
Breer, William-THE ADOLESCENT MOLESTER.
development of the sport. Call or
Quarterly magazine published by the
'87, 240 pp. (7 X 10), 3 il., $38.25.
write for an appropriate program in
Writers Division of the National
ISBN 0-398-05351-0
your area.
Federation of the Blind.
Crow, Gary A. & Letha 1. Crow-CRISIS INTERVEN-
Subscriptions are available in
TION AND SUICIDE PREVENTION: Working with
National Wheelchair Games
cassette, large type ($5/year) or
Children and Adolescents. '87, 146 pp. (7 X 10), 12
National Wheelchair Athletic Assoc.
Braille ($10/year) format and include
il., $27.25.
ISBN 0-398-05337-5
3617 Betty Drive, Suite S
membership in the Writers Division.
NEW!
Colorado Springs, Colo. 80917
Crow, Gary A. & Letha I. Crow-THE FUNCTION-
(303) 597-8330
Special Olympics, Inc.
ING OF THE FAMILY SYSTEM: An Educational Ap-
Competition limited to athletes 18
1350 New York Ave. N.W.,
proach to Positive Procedures Within Areas of
Family Life. '88, 208 pp. (7 X 10), $32.75.
years and older.
Suite 500
ISBN 0-398-05439-8
Washington, D.C. 20005
NEW!
National Wheelchair
(202) 628-3630
Dennison, Susan T.-ACTIVITIES FOR ADOLES-
Softball Association
Holds competition in numerous
CENTS IN THERAPY: A Handbook of Facilitating
Jon Speake, Commissioner
sports for ages 8-adult. More
Guidelines and Planning Ideas for Group Therapy
P.O. Box 22478
information on local events is
with Troubled Adolescents. '88, 236 pp. (7 X 10), 36
il., 26 tables, $36.25.
ISBN 0-398-05409-6
Minneapolis, Minn. 55422
available through state chapters.
(612) 437-1792
Dennison, Susan T. and Connie K. Glassman-
ACTIVITIES FOR CHILDREN IN THERAPY: A
Governing body for the National
Special Recreation, Inc.
Guide for Planning and Facilitating Therapy with
Wheelchair Softball tournaments.
International Center
Troubled Children. '87, 304 pp. (8 1/2 X 11), 203 il.,
on Special Recreation
12 tables, $36.25, spiral (paper). ISBN 0-398-05294-8
North American Riding
362 Koser Ave.
Fischer, Martin-GRACIAN'S MANUAL: A Truth-
for the Handicapped, Inc.
lowa City, lowa 52246-3038
telling Manual and the Art of Worldly Wisdom.
P.O. Box 33150
(319) 337-7578
(2nd Ed., 6th Ptg.) 79, 226 pp., $24.75, (Lexotone).
ISBN 0-398-00581-8
Denver, CO 80233
Information and referral center with
(303) 452-1212
special recreation access library and
Henderson, George & Barbara Beard Henderson-
MENDING BROKEN CHILDREN: A Parent's Man-
Serves more than 18,000 disabled
publications on special recreation
ual. '84, 228 pp., $30.00.
ISBN 0-398-05029-5
individuals in over 450 programs in
including directories, guides, and
U.S. and Canada, including both
quarterly newsletters.
Jacobsen, Jamia Jasper-PSYCHIATRIC SEQUELAE
OF CHILD ABUSE: Reconnaissance of Child Abuse
youth and adult riders, no age limit.
and Neglect - Evaluation, Prospects, Recommen-
U.S.A. Toy Library Association
dations. '86, 230 pp. (7 x 10), 4 il., 6 tables, $32.25.
Performing Arts Theater of the
2719 Broadway Ave.
ISBN 0-398-05233-6
Handicapped (PATH)
Evanston, III. 60201
NEW!
P.O. Box 9050
(312) 864-8240
Kapoor, Sandra-BULIMIA: A Program for Friends
Carlsbad, Calif. 92208
Individual or organization member-
and Family Members. '88, 164 pp. (7 x 10), $32.75.
ISBN 0-398-05444-4
(619) 438-3498
ship which includes quarterly
newsletter and discounts on
Physically Challenged Swimmers
publications. Some Lekoteks, toy
of America
libraries with adaptive toys and lists
We fill all orders promptly Books sent on approval
Joan Karpuk
of trained professionals available.
Catalog sent on request
Write or call (217) 789-8980
22 William Street, #225
2600 South First Street
South Glastonbury, Conn. 06073
Springfield Illinois 62794-9265
36 EXCEPTIONAL PARENT
MARCH 1989
RESOURCE SECTION
United States Cerebral
United States Wheelchair
All babies
ai
Athletic Association, In
Racquet-Sports Association
want to learn-
34518 Warren Road, Suite 264
Chip Parmelly
and the best
Westland, Mich. 48185
1941 Viento Verano Drive
(313) 425-8961
Diamond Bar, Calif. 91765
teachers
Governing body for person with
(714) 861-7312
are their
cerebral palsy involved in
*s.
Purpose of organization is to
Youths ages 8-18 can parting ate in
promote awareness of wheelchair
parents
such events as track and
racquetball and provide information
and families
swimming and cycling; bo ball is
on programs and wheelchair racquet
available for persons with or
sports. Juniors program expected to
severe disabiities. Compa iti s are
start in the spring.
held on the local, regional, and
national level. For more information
United States Wheelchair
on local sports clubs and programs,
Weightlifting Federation
contact the national headquarters.
Bill Hens
39 Michael Place
Stepping
United States Association
Levittown, Pa. 19057
for Blind Athletes
(215) 945-1964
Stones
55 West California Avenue
Governing body of wheelchair
PATHWAYS TO
Beach Haven Park, N.J. 0800
weightlifting. Junior program for 16-
EARLY DEVELOPMENT
(609) 492-1017
18-year-olds. Call or write for more
Develops sports programs for people
information on programs, the sport
A comprehensive video and print series
with thirty 15-minute programs for train-
with visual impairments and
itself, adaptive equipment or what to
ing parents and families with children
sponsors competitions on regional,
look for in a weightlifting program.
from birth to 36 months-including those
national and international level.
with special needs.
Trains athletes and provides
Very Special Arts
This series is recommended for:
instructional manuals.
1331 Pennsylvania Ave. NW
Prenatal and Parenting Classes
Suite 1205
Child Development Classes
United States Blind Golfers
Washington D.C. 20004
Life Skills Classes
Association
(202) 662-8899
Home Economics Classes
c/o Patrick Browne, Jr.
Educational affiliate of the John F.
Nursing Classes
300 Carondelet Street
Kennedy Center for the Performing
Training for Day Care Workers
Public Health Departments
New Orleans, La. 70130
Arts, VSA has programs for all ages
Early Intervention Agencies
(504) 522-3203
in all art forms. Every state has an
independent organizational branch.
SAVE
Price: $100 per program, or
$2,495 for all thirty programs
United States Organization
for Disabled Athletes
Wheelchair Motorcycle
FREE preview for those authorized
Pan-Am Victory Games
Association, Inc.
to recommend media purchases: Four
for Physically Disabled Youth
101 Torrey St.
programs on VHS, plus both user's and
1101 E. River Cove Street
Brockton, Mass. 02401
leader's guides. Return this coupon, or
call 800-457-4509 or 812-339-2203.
Tampa, Fla. 33604
(508) 583-8614
(813) 978-0101
Requests and information on all-
Olympic-style national and
terrain wheelchairs and any off-road
Please send my preview selection to:
international competition for youths
transportation either with or without a
Name
ages 8-18, open to all disabilities.
wheelchair. A newsletter is available
Position
This year's Victory Games will be
and a video is upcoming.
held August 1-8, in Tampla, Fla.
Institution
Write for an application, or to partici-
4-H and Youth Development
Address
pate call AI Orr at (813) 272-5732.
U.S. Department of Agriculture
To sponsor a child or for more
Extension Service,
City
information call Wanda LaVelle at
Room 3860-S
State/Province
Zip
(813) 978-0101.
Washington, D.C. 20250
(202) 447-5516
Telephone
United States Quad Rugby
Most programs integrate disabled
Mail to: AIT
Association
children using the buddy-system
Box A
2418 W. Fall Creek Court
Bloomington, IN 47402
approach. Children ages 7-19 years
Grand Forks, N.D. 58201
can participate. Contact your local
(701) 772-1961
county 4-H extension. Services and
Agency
Organizes competitive teams of
for
programs vary from county to county.
Instructional
quadriplegics, any age.
Technology
Programming for Today's Learner
EP 189
EXCEPTIONAL PARENT
MARCH 1989 37
SWIMMING
FOR
SELF-
CONFIDENCE
Guidelines for
&
a community-
based
swimming
FUN
program.
J
odie learned to roll over a few weeks ago. This would
be routine progress for a six-month-old baby, but for
Jodie it was an accomplishment compart ble to running
a four-minute mile. Jodie is a six-year-old girl severely
afflicted with cerebral palsy.
Jodie was floating on her back in three
The program, staffed entirely by
foot deep water in a municipal swimming
volunteers, is run under the auspices of the
pool. While her instructor watched her
North Jeffco Metropolitan Recreation and
carefully, Jodie raised her left hand in the
Park District of Arvada, Colo., and the Mile
air, one of the few controlled arm move-
High Chapter of the American Red Cross.
ments possible for her. This caused her to
One-hour classes are held each Saturday
roll to the left. Then, by twisting her head
throughout most of the year. Emphasis is
and arching her back, she corkscrewed in
placed on teaching both children and
the water and came up again on her back.
adults with a wide range of disabilities to
Her delight at moving her body in a
achieve standard Red Cross levels of
controlled manner was obvious. She was
swimming proficiency. Fees levied by the
giggling happily as the water streamed
recreation district are nominal. Parents are
from her face. We all cheered as the
responsible for bringing students to the
instructor hugged the triumphant girl.
class and for readying them for the water.
By
Watching the joy of a child move by
The only requirement is that the student
Robert F.
herself, perhaps for the first time, is one of
must be able to comprehend instructions.
Bond
the rewards of participating in a swimming
The major focus of our program -
program for children with disabilities.
and the major benefit to our students - is
38 EXCEPTIONAL PARENT
MARCH 1989
to make them safe in the water. By teaching
their disabilities prevent them from
Jill Jahnke, six, begins
our students to swim, and swim well, we
exercising on land. Once trained, they are
learning to swim under
are hopefully preventing future drownings.
able to work out safely in the water, a
the guidance of Julie
McGlothen.
We hope to train each student to swim well
cushioning medium. For some, water
enough so that an accidental dunking in
exercise may be the only unaided body
deep water would not result in a tragedy.
movement possible. Some students have
Actually, most of the advanced students are
even commented: "The pool is the only
better swimmers than the average recre-
place where I can walk."
ational swimmer.
Some youngsters with cerebral palsy,
or other motor control impairments, cannot
EXERCISE
exercise strenuously on land for fear of
falling and injuring themselves. Those who
Second in importance is the benefit of
are wheelchair-bound often have not been
exercise. Children usually lead very active
trained in the sports that are possible for
lives. Their high activity level builds
them. Children who are mentally retarded
muscles, bones and cardio-vascular
sometimes lack the attention span or grasp
capacity. Many children with disabilities
of rules that would allow them to partici-
are denied opportunities for exercise or
pate in organized sports with other
EXCEPTIONAL PARENT
MARCH 1989
39
CHILDREN WITH CEREBRAL PALSY
NEED COMPREHENSIVE,
INTENSIVE PROGRAMS
Because of their multiple handicaps, many children with
cerebral palsy need:
Physical Therapy
Special
Occupational Therapy
Educational Programs
Speech and
Specialized
Language Training
Medical Attention
Communication
Adapted
Aids
Recreational Activities
These and other services are available for children 2 to 21
years of age at HMS School for Children with Cerebral Palsy,
formerly Home of the Merciful Saviour for Crippled Children,
a non-sectarian, residential, licensed private school. Qualified,
experienced staff members work closely with an active group
of consultants in several medical specialties, psychology,
education and speech pathology to provide high quality,
individual habilitation and education programs. For
information write to:
Nora Nickel guides Richard Lowe, six, in the beginner's stroke.
Diane L. Gallagher, Director
HMS School for Children
children. Because of these deficiencies, we find that
with Cerebral Palsy
many of our students have poor muscle development
4400 Baltimore Avenue
Philadelphia, PA 19104
and lack stamina.
(215) 222-2566
But most problems can be addressed with a
structured swimming program. Once children are
able to swim, they can exercise or be exercised safely
in the pool. In the water, they are cushioned from
damaging falls. Individuals who cannot use their legs
equipment sh
can learn to do a very credible front crawl stroke, since
that stroke gets little propulsion from the kick.
Children with developmental disabilities can learn to
P.O. BOX 33, BEDFORD, MA 01730
swim well and most can participate enthusiastically in
relay races. Adapted strokes can often be worked out
for those with limited control of their muscles.
We like
Of course, one workout per week is less than
ideal. Once a student is water-safe, we encourage
making
parents to take the child to a public swimming pool for
kids happy.
his own exercise sessions, but this often cannot be
worked into a busy schedule.
Send for free
SELF CONFIDENCE AND FUN
catalog of
adaptive
Competency in swimming adds significantly to
equipment.
Physioball
the child's self-confidence. For children who may not
be able to play all the games their peers play,
becoming better-than-average swimmers is a source of
great pride.
One of the major high points of our teaching year
GymastikEal!
GymnastikBall
is the day the children show us their ribbons from the
Physiobal
Special Olympics swimming events. For some of the
students, participation in the annual swimming
Special Olympics serves as a goal and motivation to
improve strokes and speed.
We also give each student a trophy at our annual
Christmas party, awarding trophies for such accom-
mastikBall
40 EXCEPTIONAL PARENT
MARCH 1989
plishments as "most improvement," "best crawl
Can your computer say its
stroke" or "most willing worker."
ABC'S?
Not the least of our aims is to enable these
children to thoroughly enjoy themselves for an hour a
week. Added to the simple physical pleasure of
working muscles vigorously is the thrill of mastering a
new and difficult skill. But while fun is a major
component of the program, the students are not
Articlal
allowed to forget that they are there to improve their
swimming abilities. While there may be 10 minutes of
Human synthesis
free time at the end of each session, the rest of the hour
is structured instruction.
than
For children who may not be able to
play all the games their peers play,
The Artic Vision
Business Vision Vision
becoming better-than-average
/
Accepte
Artictionality.2-3
swimmers is a source of great pride.
the Blind.
calculator.
The students are separated into beginner and
advanced swimmers. The advanced swimmers are
taught in classes of four to eight, usually by one
instructor who directs them from the deck. Beginners
invariably receive individual instruction.
Artic
(313) 588-7370
FAX (313) 588-2650
Safety is an over-riding concern. A person with a
Technologies
55 PARK ST., STE. 2
Red Cross advanced lifesaving rating is always on the
"The Voice of Experience"
TROY, MI 48083-2753
deck or in the pool. When it is necessary for the
trained lifesaver to be in the water, a safety lookout,
who may be a parent, is assigned to watch from the
deck and alert the lifesaver to any potential trouble.
FREE
SPECIAL
ELEMENTARY STROKES
POPULATIONS
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Formal training in swimming instruction
Products For
Body Movement
Therapy
Adapted Furniture
techniques is not necessary for instructors working
Toys and Games
with beginning students. Those with American Red
Up-to-date 121 page
Cross ratings of Water Safety Instructor or Adapted
catalog for institutions is
Aquatics Instructor work with the advanced group.
now available for in-
The instruction closely follows the American Red
dividuals. Some 3800
Cross guidelines. Beginning students are first taught
products for exceptional
people all your rehab-
breath control, rhythmic breathing and prone and back
ilitation and therapy
floats. The instruction then proceeds to the crawl or
FLAGHOUSE
equipment needs under
the beginner's stroke (a modified dog-paddle). Most
one roof.
youngsters can achieve proficiency in the crawl - the
PRACTICAL products offered for: Body Movement and
most useful and fastest swimming stroke.
Positioning
Sports
Swimming
Physical Fitness. Also
includes: Aids for Daily Living
Adapted Toys and
A good deal of emphasis is also placed on the
Games
Strollers and Ride-Ons
Adapted Furniture.
elementary back stroke - a very restful stroke that is
especially useful in situations where survival is at
REQUEST YOUR COPY TODAY
stake. Care must be used in introducing students to
back floats and back strokes. Young children are
FLAGHOUSE
150 No. MacQuesten Pkwy., Suite 90001
invariably uncomfortable on their backs in the water
Mt. Vernon, N.Y. 10550
Tel. 914-699-1900
because they feel out of control. This can be especially
true of students with physical disabilities.
NAME
Other water skills specified by the Red Cross,
ORGANIZATION (IF AFFILIATED)
including surface diving, diving from the side,
swimming under water, treading water, survival
ADDRESS
floating and use of personal flotation devices (life
CITY
STATE
ZIP
EXCEPTIONAL PARENT
MARCH 1989
41
E
AEROBICS
UNIQUE AEROBICS
Check desired level with # copies:
are video tapes designed
Advanced
for, and starring, devel-
Moderate
opmentally disabled
adults. They provide
VHS
Beta Video: $32.00
a fabulous opportunity
Postage Included
for you to work at your
California Resident Total: $33.75
own pace with peers.
includes sales tax
The ADVANCED video
routine involves run-
Allow 6 to 8 weeks for delivery.
ning and jumping.
The MODERATE exer-
Mail to:
cise routine provides a
Recreation Programs
good workout for all
muscles at a slightly
Unlimited, Inc.
slower speed.
P.O. Box 2043
Upland, CA 91785-2043
For questions Call:
(714) 989-4646.
jackets and ring buoys) are taught to all advanced
The Unicorn Expanded Keyboard
students. Breast stroke, back crawl and other more
is the solution For children who have
complicated strokes are selectively taught to the most
difficulty using the standard keyboard on a
advanced students.
computer or communication aid.
ADAPTATIONS
There are obvious adaptations necessary for
various disabilities. One of our most significant
NEW! pular for Overlays grams and Setup W 2 now E 3 available R 4 $ CONTROL 5 7 U & MESSAGE 8 9 P
problems is water temperature. We use a municipal
RESET
swimming pool where the water temperature is kept
at 82 to 86 degrees Fahrenheit. Children who are
unable to generate much body heat through muscle
-
A
$
D
F
G
H
activity get chilled rather quickly. A cotton T-shirt is a
ZXCVBN
great help in retaining body heat in the water.
SHIFT
«
SPACE
Beginners are usually limited to half-hour lessons to
minimize this problem.
Another obvious adaptation is the use of floats
With large keys and user-definable messages, it can easily
be customized to suit the child. Keys can be grouped to-
for non-swimmers. We use these very sparingly. If a
gether to form larger areas and can be labeled with words,
student can be taught to stay at the surface in any way
pictures, symbols, colors, etc. Unlike most other alternate
without flotation devices, we will not use them. The
keyboards, it runs virtually all Apple and IBM software
(keyboard emulator required) and is compatible with vari-
children come to depend on these aids, and they
ous portable speech aids; speech output may be added
ultimately slow training. However, muscle rigidity
to Apple, IBM and compatibles. Optional keyguards are
also available.
increases specific gravity, and students with spastic
For more information contact:
paralysis often cannot float without swimming aids.
Unicorn Engineering Co.
415 428-1626
We have found that swimming goggles are also
6201 Harwood Ave., Oakland, CA 94618
useful. The chemicals in the average public swimming
42 EXCEPTIONAL PARENT
MARCH 1989
WHEELCHAIR ACCESSIBLE
HOUSE PLANS
At Ramsey and Associates our goal is to develop
warm, liveable house plans with beautiful exteriors for
that special person in your family. Our house plans
offer carefully studied features to enhance the quality
of life.
THE LIMITLESS PORTFOLIO
$15.00
Distinctive Homes with the Physically Disabled
in mind with Construction Blueprints Available
KITCHEN & BATH PORTFOLIO
$15.00
Accessible Kitchen and Bath Plans-
Great for remodeling
SPECIAL OFFER Both portfolios
$25.00
Send check or money order to:
Advanced swimmers
Ramsey and Associates
Goeff Fort, front, and
Department MS
Jeff Hardin, right, pause
RAMSEY
P.O. Box 220
in their workout
AND
Vilonia, Arkansas 72173
with instructor
ASSOCIATES
(501) 796-2981
VISA
Susie O'Donnell.
pool irritate the eyes. While this is not harmful, it is
THE
annoying. More importantly, goggles help get the
students past a major hurdle in learning to swim -
EYSTONE FAMILY
immersing the face in the water. Few swimming
strokes can be swum properly or efficiently without
Celebrating a Quarter Century as
most of the weight of the head being supported by the
the "Pioneer in Urban Residential
water. With front strokes (front crawl and breast
Programming for the Mentally
stroke), the face is immersed throughout most of the
Retarded!"
stroke. Until the student learns to swim with his face
City-situated Residences of varied sizes and
Program Specialties
submerged and to breathe rhythmically, progress in
Dedicated, Experienced Staff
these important strokes will be quite limited.
One typical fear that keeps children from putting
Special Education/Vocational & Work Training
Programs
their faces in the water is reluctance to get water in
A Rural Residential Option
their eyes. I suspect this develops from getting soapy
Specialized Summer Camp in the Poconos
water, which stings, in their eyes during baths. By
With a Cultural & Performing Arts flavor
wearing goggles, the students realize that they can see
All Medical, Clinical Specialties
well under water and that their eyes are protected.
It's the Individual Child, Adolescent and
Children with spina bifida can become excellent
At
EYSTONE
Adult that counts!
swimmers of the front crawl, which gets little
It's a staff with a special personality that
propulsion from the legs. However, they have
makes each residence in the constellation
a home!
difficulties with the back crawl, since their legs often
It's that OPEN DOOR Visit without
float up into a jackknife position when they are on
notice the informality!
their backs. The breast stroke is not very effective for
any student with limited leg mobility.
You too can find out about Keystone Residences-
call or write:
Often, individual adaptations must be worked
City Residence
out for students with cerebral palsy. If necessary, we
will let such students swim with floats attached to
EYSTONE
406 N. Washington Avenue
Scranton, Pennsylvania 18503
Phone: (717) 346-7561
EXCEPTIONAL PARENT
MARCH 1989
43
A rural community for children
their bodies, either inflated arm cuffs or styrofoam
with mental retardation
floats taped to their ankles. However, every effort is
and other handicaps
made to eliminate such aids as soon as possible. One
reason is that reliance on swim aids does not prepare
the students for survival of an accidental immersion,
Beautiful homes with permanent house-
parent families, small groups, no shift workers,
one principle goal of the program.
Students with visual impairments can often be
natural foods, live-in staff.
taught the strokes by physically guiding their arms
Waldorf Education curriculum emphasiz-
and legs through the proper motions. In this case, the
ing creativity, with academic and practical
pace of instruction must be adapted, not only to the
skills for mind, heart, body.
learning ability of the student, but also to the student's
Curative approach toward individual needs.
degree of hesitancy towards new experiences. We
Wide variety of therapeutic treatments,
always bear in mind that we are dealing with children
resident doctor.
who may have had few successes in dealing with the
Diverse social and recreational opportun-
physical world.
ities, custom-built homes, community cen-
ter, school building, craftshops, 60 acres
WHERE TO BEGIN
rolling woodland.
International affiliates, founded 1939, nation-
Parents who wish to find a swimming program
ally recognized.
for their child might start by inquiring at the local
American Red Cross office. School officials involved
BEAVER RUN
in special education programs and people active in
local swimming instruction programs might also
CHILDREN'S VILLAGE
know of available programs.
FOR INFORMATION CONTACT:
If there are no convenient swimming programs,
parents may want to consider starting a program in
Camphill Special Schools, Inc.
their community. The Red Cross can give invaluable
Glenmoore, PA 19343
help. "Water time" (scheduled use of a municipal
(215) 469-9236
pool) will be needed. An indoor pool is recom-
mended, as a summer-only program would be of
limited value. Water time is expensive, so fees will
probably be necessary.
Say-It-All and Say-It-Simply
Recruiting dedicated, dependable instructors can
be the biggest hurdle. The volunteer whose atten-
dance is sporadic is of limited value, no matter how
inspired his teaching. For teaching beginning
swimmers, the instructor's skill is less important than
his patience and sincere desire to teach.
Dedicated teachers should be encouraged to
move through the Red Cross swimming instructors
programs. Advanced training will make instructors
more useful and make their work more personally
satisfying. The Instructor's Course in Adapted
Aquatics is a course specifically intended for teaching
swimmers with disabilities. However, other courses
must be taken first. The Advanced Lifesaving course
is a prerequisite for being certified as a Water Safety
Instructor, which is a prerequisite for the Adapted
Aquatics Instructor course.
Say-It-All and Say-It-Simply are easy to use, voice output com-
munication aids. Features include highly intelligible speech in
8 selectable voices, recall of stored phrases with a single key
press, built in text-to-speech and detailed manual with step-by-
Robert F. Bond is the coordinator of the North Jeffco
step examples.
Recreation District Handicap Swimming Program. He is
While Say-It-All is lightweight and has a standard keyboard,
an American Red Cross certified Water Safety and
Say-It-Simply allows the size of the response area to be varied
Adapted Aquatics Instructor. Retired from his position as
from 1 inch to 12 inch squares.
an international marketing services manager, Bond lives
Call us today!
in Golden, Colo., with his wife, Mary, and works as a
freelance writer.
Innocomp
33195 Wagon Wheel Drive
Solon, Ohio 44139
(216) 248-6206
44
EXCEPTIONAL PARENT
MARCH 1989
Programs for Children and Adults with Special Needs
Elwyn
Special Education
Vocational Training
Supported and Transitional Employment
Sheltered Employment
Community and Residential Living Arrangements
Community Socialization and Interaction
Elwyn
111 Elwyn Road, Elwyn, PA 19063
(800) 345-8111
(215) 891-2045 (PA)
Locations: Pennsylvania, Delaware, New Jersey, California and Israel
Established 1852
PROPER SEATING:
A Key to Participation
C
hildren need to be able to sit upright in a stable
seating options. In this collaborative effort, parents and
position and move about in the world in order to
team members need to discuss the different environ-
participate in the everyday activities of growing
ments (family room, bedroom, kitchen, bathroom, school
up. For many young children with severe physical
rooms, automobiles and outdoors) where the child sits
disabilities, therapeutically designed and prescribed
(or lies) so that in each place the child can be as actively
seating systems can make a dramatic difference at home,
involved in family or community life as possible. Then
at school and in the community. In this article, guide-
the parent/professional team can develop specific
lines for under-standing seating options for infants and
recommendations for each environment with consider-
pre-school children will be presented to help readers
ation of whether the child can use: (1) standard furniture
work actively with therapists to meet the needs of their
with adaptations; (2) specialized commercially available
children.
equipment; (3) specialized equipment customized to
The seated position is just one of the many
meet the unique needs of the child; or (4) completely
"positions" in a child's everyday life. Seating deserves
customized, individually prescribed seating system.
particular attention because so many social and educa-
From early in life, children sit at different heights in
tional activities are done sitting down. However, as
different places. For some children, one seating system
important as proper seating is, parents and professionals
may be fine for a number of different settings. For
always need to keep the overall goals for the child in
others, each situation may require modifications.
mind and remember that proper seating does not
In determining the best seating for an individual
eliminate the need for therapies or the need to be com-
child, comfort and safety are key criteria. In addition,
fortable in other positions. The goals of proper seating
whenever possible, the seating should facilitate the
are to enable a child to take part in the same activities
development of existing muscle strength and/or
that his peers and family members enjoy as well as to be
coordination, as well as protect the child from injuries
able to participate more actively in special programs
caused by sliding out of the chair or from pressure sores
designed to meet special needs.
(decubitis ulcers is the technical term).
When a child is properly seated, he or she will be
Many children need only firm back support and a
better able to use both hands and concentrate on the
firm seat bottom. Usually, the back support and seat are
activity itself rather than be worried about
balance and personal injury. For example,
many families enjoy playing board games
while seated around a table. With proper
seating, a child is likely to have better
control of the arm and hand movements
necessary to participate in Candyland,
checkers, Monopoly and many other
popular board games.
For a thorough discussion of
positioning, see Elaine Trefler's article,
"Positioning: Concepts and Technology,"
EXCEPTIONAL PARENT, July/August
1988, pp. 28-33.
COMPREHENSIVE ASSESSMENT
A careful assessment of a child's
specific needs by parents and clinical team
members is essential in order to identify all
C.A.M.P. Photo
46
EXCEPTIONAL PARENT
MARCH 1989
mounted at approximately 90 degrees. Such seating
IN SCENIC CENTRAL NEW YORK STATE
provides comfort and support and prevents the child
from slouching or slipping into inappropriate
A Unique Residential Care
positions. In addition, a seat belt is an important part
Community for Down Syndrome
of most seating systems because seat belts provide
additional support to help the child maintain proper
Children and Adults
posture as well as protecting the child from injury.
Founded in 1921, Pathfinder Village is a unique colonial
Depending on a child's ability to control his
style village located in the rich, rolling green hills of
head and neck, a higher seat back or special neck and
Central New York, 35 miles south of Utica, convenient
head supports may be needed. The team can also
to NYC and New England states. The village is com-
discuss whether arm rests will be helpful and/or
posed of eight beautiful Early American homes, a brick
whether a lapboard or wheelchair tray is needed for
school, meeting house, chapel, carriage house, village
various activities.
inn, bakery, and greenhouses. Year-round, co-ed pro-
Finally, since many activities can be enjoyed
grams include special education, rehabilitation and
while on the floor, on a couch or bed lying on the
vocational training, Down Syndrome only. Call or write
stomach (called prone position) or on the back (called
for information.
supine position), the team also needs to review the most
appropriate positions on the floor or bed as well as the
Together
We Can Make The Difference
best supports in each place so that a child can interact
effectively.
BUYING DECISIONS
Today, because an increasingly wide range of
Pathfinde
well designed products are commercially available
(and often reimburseable via health insurance
Village
programs), the creation of completely customized
systems may not be necessary. However, experts who
Box 32A, Edmeston, NY 13335
(607) 965-8377
can help determine the individual eating and
positioning needs of a child with severe physical
disabilities may not be readily available in all areas.
(For information about trained experts in your
community, see note at end of article.)
Attends®
Once decisions have been made to purchase
special equipment, it is best to try before buying.
BUY THE CASE
Ordinarily, before the team prescribes a specific
system, a child sits in the system so that parents and
team members can observe and try various modifi-
Attends
cations that may be needed. In addition, as part of the
purchasing decision process, parents can ask
NEW YOUTH SIZE!
therapists or parent organizations to identify other
*
parents whose children use same or similar
FREE SAMPLE
equipment.
1-800-538-1036
INFANCY
Home Delivery
Babies, as well as children of all ages, enjoy
Incontinent Supplies Co.
playing on the floor. Cushions or specially designed
For Sample Mail To: HDIS, P.O. Box
foam pillows or wedges (different shapes) can be used
52043, St. Louis, MO 63136
to provide support so that a child who is unable to
support himself can play on the floor. Other special
devices such as prone positioners (specially designed
Now try the newest
Name
wedge-shaped equipment, made of wood, plastic or
Attendsdesigned,
foam and equipped with straps, cushions or other
for children from
materials; often called prone boards) may be advisable
the leader in home
Address
for a child to use while lying on his stomach.
delivery.
For sitting, plastic baby seats usually do not
City
State
Zip
provide enough support for the child with physical
* One sample per family
(
)
while supplies last
Area Code
Phone #
EXCEPTIONAL PARENT
MARCH 1989 47
disabilities. There are now a number of specially
Standing Aid Frame/Table
designed seating systems (that may also fit in strollers
or wheelchairs) which are excellent. Sometimes, an
individual child may need additional foam padding or
wedges to use with the seating system as he or she
FEATURES:
grows. For eating, sturdier high chairs may be
facilitates natural weight
sufficient with some foam modification or the seating
bearing & visual/postural
balance
system itself may be attached to the highchair.
provides specific body part
For getting around in the home or outside,
control for better positioning &
parents can consider specially designed strollers that
less fatigue
provide proper support or the use of special inserts
30 day money back
(seating system) in ordinary strollers. Because federal
guarantee & limited 2 year
warranty
safety standards for child restraint systems for
automobile travel apply only to youngsters who
CALL TOLL FREE
weigh 50 pounds or less and are not disabled, it is
essential to consult with the clinical team when
800-255-7317
working out details of car travel.
For a more complete report on the subject,
consult J.D. Stout, M.J. Bull and K.B. Stroup, "Safe
Transportation for Children with Disabilities,"
American Journal of Occupational Therapy, January 1989.
PRE-SCHOOL YEARS
Ergonomically Designed & Made In The USA
Ask for Details & Free Copy of Our Catalog
Consumer Care Products, Inc.
At this age, because children begin to do many
P.O. Box 684, Sheboygan, WI U.S.A. 53082
things outside of the home, a careful assessment of
est 1978
Tel. 414-459-8353
each setting is essential. For example, in reference to
mobility, if the child enjoys accompanying parents on
shopping excursions, a stroller may be best. However,
if child attends a school program and is transported
via bus, then strollers are usually not strong enough
for bus safety.
"Providing Maximum
At home and in community programs, children
Opportunity for
are now participating in many activities seated at play
Success and Well
tables. For some children, regular classroom furniture
Being to Individuals
with slight modifications will be sufficient. For others,
Unable to Attain
customized systems may be needed. Since many new
Such on Their Own"
wheelchairs come with adjustable seat heights, the
most effective approach ordinarily is to move the
Annandale
wheelchair to the table or desk.
Once a child is mobile via a wheelchair, stroller,
or walker, the entire home needs to be accessible so
Located Near
that a child does not need to be carried from place to
Atlanta, Georgia
Village
place. For meals, if the mobility device can get into the
kitchen but cannot be pulled to the table at proper
height, the child will need to be able to transfer to a
Annandale at Suwanee is a non-profit corporation
seat at the table or use a sturdy tray table on the
founded in 1969 to provide residential care and
wheelchair to eat while remaining in the wheelchair.
social/vocational services to developmentally
Children with physical disabilities are usually
disabled adults. Situated on 100 acres of rolling
ready for toilet training at about the same time as
hills, woodlands, pastures, and farm land, with a
15 acre lake, the Village is comprised of more
other children. However, when a child has difficulty
than 20 buildings. Well-suited to living and learn-
with seating balance, toilet training is often needlessly
ing, the Village continues to expand its facilities
delayed even though the child is developmentally
and personnel to offer a broader range of quality
ready. This is particularly unfortunate because using
programs and services. For further information
the toilet independently to ensure privacy will become
contact Dr. John J. Barnes, Executive Director.
an important issue when the child is older.
Annandale at Suwanee, Inc.
Small children can use special potty seats on the
floor that provide support and enable the child's feet
P.O. Box 7, Suwanee, Georgia 30174
(404) 945-8381
48
EXCEPTIONAL PARENT
MARCH 1989
to be on the ground. For some children it may be
necessary to construct a box-like seat around a standard
potty chair to provide safe support. As child gets older,
REFERENCE NOTE
specially designed toilet seats that clip onto or fit over a
toilet or are attached to walls (grab bars, rails) can be
very helpful. There are also products available for
RESNA (an interdisciplinary association for the
bathing which provide support in the bathtub or shower.
advancement of rehabilitation and assistive tech-
For mobility, besides wheelchairs and strollers, pre-
nologies) has a special interest group on "Wheeled
school children may use scooter boards, caster carts,
Mobility and Seating." The chair and vice chair of
walkers, and/or crutches. The major issue in selection is
this group can be contacted to suggest trained
whether the child be independent in the community
professionals thoughout the country:
with this equipment. Accordingly, for the child who
needs a wheelchair, can the child move the chair by
himself without undue physical exertion so that he has
Bonnie Boenig, O.T.R./L
energy remaining for participation in the activity when
Boenig & Associates Therapy Service Inc.
he gets there? Once a child is 3-5 years of age, it is time
398 West Bagley Road, #5
to consider powered mobility especially if child is
Berea, Ohio 44017
unable to or unlikely to be able to propel a standard
(216) 234-4844
wheelchair independently.
Steven Reger, Ph.D.
Department of Musculoskeletal Research
-S.D.K.-
Cleveland Clinic Foundation
9500 Euclid Avenue
Our special thanks to Elaine Trefler, O.T.R., M.Ed.,
Cleveland, Ohio 44106,
Assistant Professor of Rehabilitation Engineering and
(216) 444-5857
Director of Education at the Rehabilitation Engineering
Program at the University of Tennessee/Memphis Health
Science Center, who was a resource person for this article.
Elementary and Secondary
Jt.Coletta.School
Pre-Vocational and
Special Education
Vocational Training
JEFFERSON WISCONSIN
St. Coletta School, founded in 1904, offers
Additional services enhancing the academic program include:
a year-around academic residential program
Counseling - personal and vocational
for mentally retarded children and
Socialization skills
adults (ages 6-25).
Personal living skills
Transitional home living
Speech and language development
Music and art
Adaptive physical education and swimming
Other St. Coletta programs include habili-
Physical and occupational therapy
tation/vocational training, adult worker, Alverno
for further information contact:
unskilled nursing care home and Coletta-James
Sister Elaine Weber, Administrator
transitional group home.
St. Coletta School
Route 1, Box 43
Jefferson, Wisconsin 53549
Telephone (414) 674-4330
EXCEPTIONAL PARENT
MARCH 1989 49
A Camping
"L
et's see
I wave good-bye to Mahlon amidst all
power chair,
the other nervous and excited campers as I
manual chair,
pull away in my van.
battery charger, tire
The Accommodate portion of the
pump, pliers, bike
package is often an inspiring revelation for
buddy, tray, emergency
participants as they call upon their own
numbers, asthma
resources (inner and outer) to solve
inhaler, medical card.
problems: resources they were unaware
And
sleeping bag,
they had. I have often gotten great new
pillow, pants
more
ideas from people who could look at my
pants, underwear, pjs,
situation with Mahlon from a fresh
shirts, coat. There! I think that will do it!"
perspective. I love new ideas!
By insisting on
Our 11-year-old son, Mahlon, is off to
The best part of this Adventure is the
mainstreaming,
science camp, the outdoor education
Enjoy part. Exceptional children give back
program offered to all fifth graders in our
so much with their unique point of view
parents and
county. It's an opportunity to experience
and their unconditional love that everyone
children can
the great outdoors and learn about nature.
comes away enriched. Mahlon's toileting
teach others.
It's an opportunity to be away from home
aides thanked me at the end of the school
and have fun. It's an opportunity to learn
year for the "privilege of helping Mahlon."
to live with your peers.
And they were just taking him to the
And, for us, it's yet another opportu-
bathroom!
nity to educate another small population on
how to Accept, Accommodate and Enjoy a
OUR CHILDREN: OUR GIFT
child with special needs. This is an
TO THE COMMUNITY
"Adventure Package" that we have
"offered" frequently over our years as
Allowing our exceptional children to
parents of a physically-challenged child.
be mainstreamed is a gift to the community,
Mahlon was a premature baby, and by the
whether it be Cub Scouts, Brownies, the
time he was eight months old, it was
schools, the church, or the neighborhood.
evident that he had cerebral palsy. His
Insisting on mainstreaming (if you've
major impairment involves motor skills, SO
decided it's appropriate) is often a lonely
he needs a wheelchair and total assistance
road. We face reluctant administrators,
with personal care. However, he has
hesitant teachers, classmates, parents,
always been mainstreamed and can keep up
doctors, dentists and a whole parade of
with grade-level work.
uninformed and often scared citizenry. It's
not a fun task. It's frustrating, confusing,
ACCEPT, ACCOMMODATE, ENJOY
exasperating, thankless and exhausting.
But it can be worthwhile.
The Accept part of the package is
Mahlon called the second night he
unavoidable. We expect our son to be
was at camp. "Dad, I need to come home."
By
mainstreamed whenever possible: in his
My husband had an initial moment of
Kate Divine
school, in our neighborhood, in social
panic: Was Mahlon hurt? Was he being
McAnaney
activities. After all, he's a "regular kid" in
ignored? Was he being made fun of? He
a wheelchair.
then calmly determined that it was none of
50
EXCEPTIONAL PARENT
MARCH 1989
We Will Go
Michael, 10, helps his
brother, Mahlon, 12,
prepare for camp.
these things. Mahlon, like many other
tive. People without physically-challenged
campers, was just homesick. We encour-
children can help out at these times too, and
aged him to "hang in there" for at least
when they find a solution for you, they feel
another day, even though he was now
great about it! We just have to offer people
dependent on near strangers for all his
the opportunity to help.
needs. He did "hang in." He stayed the
rest of the week and never regretted it.
MAINSTREAMING:
MY RESPONSIBILITY, TOO
WE ARE TEACHERS
I take my role as "educator" seriously,
We have to adopt the attitude that we
recognizing that the success of main-
and our children are teachers and that we
streaming my son is my responsibility too.
have some valuable information to offer.
Just because there are laws in place that say
We can "teach" things that people need to
it should happen, is no guarantee that it will
know: how to accept people with dis-
be done effectively, smoothly, or that it will
abilities, how to "help," how to be flexible
be an enriching experience for your child.
(this is a biggie!), and how to "go with the
Whenever I plunge into a new
flow." I have learned this!
situation - new school, new neighborhood,
I cannot count the times that our plans
new class, or new experience (like science
have come to an abrupt halt because
camp) - I assume the people I'm working
Mahlon's wheelchair has a flat tire, a blown
with know nothing. I like this assumption
fuse, a dead battery, or a broken belt. We
because it means I can start from square
quickly readjust and fix it or find an alterna-
one. I can give them complete and accurate
EXCEPTIONAL PARENT
MARCH 1989
51
information and hopefully overcome any
preconceived ideas about Mahlon in particular and
about people with special needs in general. I can undo
prejudices or at least set the stage for dissolving those
prejudices.
I begin my process by telling people about
cerebral palsy. Each year, from kindergarten and up,
I've gone to Mahlon's class and given "our talk"
during the first week of school. We, Mahlon and I, talk
about what cerebral palsy is, why Mahlon has it, why
he is in a wheelchair, what he can do, and what he
can't do --- emphasizing that you "can't catch" what
Mahlon has.
I take along visual aids to illustrate prematurity.
We have a regular size baby doll and a preemie size
doll. We have the doll clothes Mahlon wore in the
intensive care nursery. And we have foot and hand
Your Child's Future Starts Today
prints of Mahlon and his brother at birth (his brother
Your child deserves a program individualized to meet his
weighed 10 pounds at birth; Mahlon weighed two
special needs for a successful return to home and school.
pounds). I know I can get the kids' attention with this
An effective head injury program helps the entire family
approach. Then I give them the information. I give
get ready for tomorrow.
them the "big" words: cerebral palsy, brain injury,
Let us help you toward that tomorrow. Please write or
ventilator, physically challenged.
call today for more information.
And we talk about how everyone has challenges,
Kluge Children's Rehabilitation Center
i.e., something that's hard for you to do. "For Mahlon
Serving Special Children and Adolescents from Birth to 21 Years
it's hard to write and hard to move like you do. For
University of Virginia Children's Medical Center
2270 Ivy Road
Charlottesville, VA 22901
804-924-8184
you, maybe math is a challenge, or spelling, or
reading, or playing the piano."
Children are wonderful. They listen and they
understand because they are eager to know why
Mahlon is in that fantastic motorized chair!
After I've taken care of the "whats" and the
Copies of articles from this
"whys" of my teaching process, I go to work on the
publication are now available from
"hows:" How will he get from here to the library? To
the bathroom? To the cafeteria? How will he write his
the UMI Article Clearinghouse.
assignments? How will he go on field trips? And how
will he go to science camp?!
For more information about the
My second great assumption is that any "how"
Clearinghouse, please fill out and mail back
question has an answer. If I'm absolutely backed into
the coupon below.
a corner, I'll say "I don't know about that one
but
I'll figure out something!"
UMIArticle
One parent lamented to me that it was "too bad
Clearinghouse
about science camp," presuming, of course, that
Mahlon couldn't possibly attend. Others may have
Yes! I would like to know more about UMI Article Clearinghouse.
had the same presumption.
I am interested in electronic ordering through the following system(s):
I could hear opportunity knocking! I called the
DIALOG/Dialorder
ITT Dialcom
camp director and said, in an engaging voice, "Hi! I
OnTyme
OCLC ILL Subsystem
Other (please specify)
have a son with cerebral palsy who uses a wheelchair
I am interested in sending my order by mail.
to move around and he's in the fifth grade at Robert
Please send me your current catalog and user instructions for the
Down School and will be attending camp the week of
system(s) I checked above.
May 23rd. I'd like to meet with you and your staff so
Name
we can work out the details."
Title
Institution/Company
POSITIVE, PATIENT, PERSISTENT
Department
Address
I'm Positive, Patient and Persistent and ready for
City
State
Zip
the tough questions. Maybe I have just been lucky, but
Phone (
)
I have found that when I give people the opportunity
Mail to: University Microfilms International
300 North Zeeb Road, Box 91 Ann Arbor, MI 48106
52
EXCEPTIONAL PARENT
MARCH 1989
to help, they usually do. If I approach mainstreaming
and after that high school, then college - - new people,
with a positive attitude, I often find willing supporters. I
new systems. New problems, new solutions.
may have to give them on-the-job training, but that's
I didn't imagine parenting would be like this, but it
fun! Even the most reluctant folks can be inspired and
is, for me - for us. And even in those times of utter
can reinspire me!
weariness and deepest discouragement, I know my
The camp director was definitely reluctant. "How
efforts are worthwhile. Mainstreaming is important.
will he go hiking? We do lots of hiking you know."
There will always be people who think I'm too
"No problem!" I replied. We, as a family, worked
assertive; there will always be doctors, teachers and
out the answer to this one long ago. We also do a lot of
therapists who don't appreciate my input; there will
hiking. We found that the pull-along child carrier we
always be people who don't want to learn about special
had purchased for my bike worked splendidly as a
needs. But if I can - if you can - help people to realize
"rickshaw" to pull along the trails.
that mainstreaming can be a positive opportunity for
My husband got a wide army belt, hooked the arm
children and adults, then all the frustration is worth it.
of the "bike buddy" to the belt, fastened it around his
waist and announced "I think this is going to work!" It
did, and it has - for years. We use it at the ocean to run
along and chase waves, in pledge runs, and in any rough
Kate Divine McAnaney is the
regional coordinator for United
terrain where his wheelchair won't go. So we sent it to
Cerebral Palsy of Monterey
science camp. The counselors loved it! It broke up the
and Santa Cruz Counties,
monotony of just another week at camp.
Calif. She is a graduate of the
Mahlon's classroom teacher jogged up along side
University of California-Davis,
Mahlon's rickshaw as they were hiking one day and
and a board member of the
asked how camp was going for him. Mahlon answered
Carmel Valley Youth Center.
She lives in Carmel Valley,
brightly, "Just great!" And then added with a twinkle,
Calif., with her husband Patrick
"Except I can't get my slaves to go fast enough!"
and their two sons, Mahlon,
And so science camp worked. And school thus far
12, and Michael, 10.
has worked. YMCA Indian Guides worked. Swim
lessons worked. And next year we face middle school,
DIAFOODS
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liquids to any desired consistency quickly and easily.
Thickens controllably. Won't over thicken. No cooking
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patients. Won't bind fluids. Contributes calories but
low in sodium.
Comes in 8 oz. cans in two strengths and in portion
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Tested, accepted and used by thousands of dieti-
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hospitals, nursing homes and rehabilitation
Milani
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2525 Armitage Avenue
Melrose Park, IL 60160
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(800) 333-0003
IN-88037-A
EXCEPTIONAL PARENT
MARCH 1989 53
WHAT'S HAPPENING
CARING.
PARENT ACTION
NETWORKING WITH
TECHNOLOGY
The Family Resource Coalition
(FRC), a national organization whose
SpeciaLink is a high-tech social
goal is to improve the quality and
service agency whose purpose is to
expand the number of programs
encourage, advance, and enhance the
available to families, has announced
use of computers in the daily lives of
a new division called PARENT
persons with physical, intellectual,
ACTION, a national advocacy
and/or emotional disabilities. The
organization that promotes the issues
goals of SpeciaLink are to increase
and concerns of families.
understanding of how computers
Professionals are welcome to
can benefit individuals with special
join parents in this advocacy effort.
needs, broaden the awareness within
Membership is $5.00 for one year,
the community of the different uses
and a combined membership in
of computers and related technology
PARENT ACTION and FRC is
and to increase the implementation
$20.00. For more information,
of microcomputer technology for
contact PARENT ACTION, 230 N.
children and adults with disabilities.
MichiganAve., Suite 1625, Chicago,
SpeciaLink is a member of the
Ill. 60601, (312) 726-4750.
National Special Education Alliance,
a grass-roots network of resource
EARLY INTERVENTION
centers for people with disabilities.
ADVOCACY NETWORK
SpeciaLink published a monthly
newsletter ($10.00/year), has
A Devereux Legacy
The Early Intervention
developed an electronic data base of
since 1912
Advocacy Network is a project of the
vendors of adaptive hardware and
Mental Health Law Project (MHLP),
software, and has established a
Explore Devereux's comprehensive
a highly-respected Washington-
center allowing people to try both
based public interest group that
software and hardware before
services to children, adolescents, and
adults who have a wide range of
advocates for the rights of children
purchasing it.
and adults who have developmental
For additional information,
emotional, developmental, psychiatric,
disabilities. MHLP has concentrated
contact Elaine or Wally Hackett, P.O.
and neurological disorders.
its advocacy efforts on test-case
Box 12750, Cincinnati, Ohio 45212,
Explore Devereux's residential and
litigation, policy advocacy, and
(513) 351-8519.
day treatment programs throughout
educational outreach and has made
the nation.
significant differences in the lives of
NATIONAL FEDERATION OF THE
persons with developmental
BLIND SCHOLARSHIPS
Explore Devereux's caring environ-
disabilities.
ment, quality treatment, therapeutic,
educational, and vocational programs.
MHLP began the Early
In recent years, the National
Intervention Advocacy Network in
Federation of the Blind has devoted
Explore Devereux's legacy
and its
response to the passage of Public
substantial effort and resources to its
future.
Law 99-457's Infant and Toddler
scholarship program. This has been
Program. Participants in the
done in the belief that if the blind are
For information, contact:
Ted Enoch, National Director
Network regularly receive updates
to achieve first-class status in society,
Marketing and Admissions
on implementation of 99-457 and
they must have the opportunity to
19 South Waterloo Road
"Alerts," periodic communications
compete with others on terms of
Devon, PA 19333
about upcoming events, such as
equality. This is another way of
1-800-345-1292, X 3045 (outside of PA)
public hearings on state applications
saying that the blind must be able to
215-964-3045 (within PA)
for Infant-Toddler Program funds.
attend institutions of higher learning.
Participation in the Early
To that end they continue to
Intervention Advocacy Network is
strengthen their scholarship
free of charge. For more information,
program.
contact Margaret Lorber or Beth
In 1989, twenty-six outstanding
The
Carter at MHLP, 2021 L Street, NW,
blind students will receive
Devereux
Suite 800, Washington, D.C. 20036,
scholarships from the Federation,
Foundation
(202) 467-4730.
totaling $69,000 in cash plus payment
54
EXCEPTIONAL PARENT
MARCH 1989
WHAT'S HAPPENING
of their expenses to the National
programming alternatives, support
to Parent programs around the
Federation of the Blind convention in
to postsecondary administrators,
country have responded to these
Denver during early July. Ten blind
counselors, and related student
needs by pairing "veteran" parents
scholars will receive awards of
support staff and a national
who have successfully handled many
$1,800; two will receive awards of
newsletter, "Postsecondary LD
of the challenges present in families
$2,000; ten will receive awards of
Network News," which includes the
who have a child with a disability
$2,500; three will receive awards of
latest information on conferences,
with parents who have recently
$4,000; and one (the student judged
resources, and "best practices" for
learned of their child's disability. In
to be the most outstanding blind
service providers.
these programs, often called "Parent
scholar in the nation) will receive a
The Center is designed to ease
to Parent," "Pilot Parents," "Parents
$10,000 scholarship award.
the transition from high school to
Helping Parents," or "Parents
The scholarship application
any postsecondary setting so that
Reaching Out," experienced parents
form will be sent to every college and
young adults with learning disabili-
offer emotional and informational
university in the country, every
ties can reach their maximum poten-
support to referred parents through
agency doing work with the blind,
tial. For additional information, or
this match.
every congressional office, every
questions about LD post-secondary
In order to find out more about
NFB state president, and every
transition issues, call (203) 486-4036.
the way Parent to Parent programs
member of the Scholarship
operate and what makes them
Committee. They will also be sent to
PARENT TO PARENT NATIONAL
successful, the Parent to Parent
anyone requesting them. These are
SURVEY PROJECT
National Survey Project at the Beach
worthwhile scholarships, which will
Center on Families and Disability at
be of real assistance to blind
Parents caring for a child who
the University of Kansas, is
students.
has a disability often find that their
conducting a national survey of
To receive forms or to obtain
best resources are other parents who
parent support groups that use the
further information, contact Peggy
have been there and understand
parent to parent approach. As this
Pinder, Chairman, National
firsthand their feelings and their
information is compiled and made
Federation of the Blind Scholarship
experiences. Since the 1970's, Parent
available to families and
Committee, 814 4th Avenue, Suite
200, Grinnell, Iowa 50112; phone
(515) 236-3366. Forms can also be
had by writing to: Scholarships,
The Handicapped's Source®
National Federation of the Blind,
Computer Products For
1800 Johnson Street, Baltimore,
Maryland 21230. Forms must be
received by March 31, 1989.
Complete Computer
Systems
NATIONAL LD HOT LINE
Alternate Input Devices
Software for:
The Learning Disability College
Basic Living Skills
Unit of the University of Connecticut
Problem Solving
has announced the establishment of a
Evaluation / Utility
national 24-hour hot line which will
Creative Development
Educational / Entertainment
provide assistance and support
services free of charge for LD service
providers and college students with
learning disabilities. This hot line
has been developed as part of the
Call or write
new "National Center on
IRM
today for our FREE
Postsecondary Transition for
Authorized
.
comprehensive
Students with Learning Disabilities,"
Personal
Computers
Authorized Va
Added Reseller
catalog!
which will be housed in the Special
®
Education Center at the University.
ComputAbility
Among the services provided by
highly qualified staff are the
The Handicapped's Source®
dissemination of relevant current
ComputAbility Corporation
publications and information on
101 Route 46, Pine Brook, New Jersey 07058
Call Order Line: (201) 882-0171
EXCEPTIONAL PARENT
MARCH 1989
55
WHAT'S HAPPENING
professionals, the Beach Center staff
Parent Network, discover the
style program was created. The
hopes that it will be useful in the
characteristics of Parent to Parent
program provides physically
development of a national Parent to
programs that lead to successful
disabled youth the opportunity to
Parent Network that can help
programs, and learn about training
enjoy the benefits and rewards
programs learn from each other and
and technical assistance
associated with sports and
assist new groups with start-up
opportunities.
recreation.
tasks.
We are pleased to be working
The first Junior Wheelchair
Programs that use the parent to
with EXCEPTIONAL PARENT
Sports Camp was held in 1981,
parent approach are encouraged to
magazine. We look forward to
offered free of charge to youth
call or send a postcard with the
reporting the results of our work in
between the ages of seven and 18
name, address and telephone
EXCEPTIONAL PARENT.
and provided instruction in various
number of a program representative
sports (tennis, archery, basketball,
by April 30, 1989, to Betsy Santelli,
WHEELCHAIR TENNIS
physical conditioning, track & field
Project Coordinator or Ann Turnbull,
and aquatics) by physically disabled
Co-Director for the Beach Center.
There is a tremendous need
athletes who serve as role models for
Reply to: Parent to Parent National
throughout the country for organized
the campers. The overwhelming
Survey Project, Beach Center on
sports and recreation of physically
success of the first camp has led to
Families and Disability, Bureau of
disabled youth. In an effort to satisfy
the development of additional
Child Research, 4138 Haworth Hall,
this need the National Foundation of
programs in other areas.
University of Kansas, Lawrence,
Wheelchair Tennis (NFWT) has
The following is a schedule of
Kansas 66045-2330, (913) 864-4950.
created the Junior Wheelchair Sports
camp programs available across the
A positive response will enable
Camp Program.
country. If you have any questions,
participants to find out about and
In 1981, the NFWT focused its
please contact the National Founda-
share materials with other Parent to
attention on developing programs
tion of Wheelchair Tennis, 940 Calle
Parent groups, be included in the
for physically disabled youth: the
Amanecer, Suite B, San Clemente,
development of a national Parent to
future of wheelchair tennis. A camp
Calif. 92672, (714) 361-6811.
A BARRIER-FREE LIFE
For the severely disabled child or young adult, life can present obstacles that are internal as well as
external.
At Matheny, students develop the self-confidence and the functional skills necessary to explore options
and determine lifetime goals.
Each student's individualized program combines special education, therapies, vocational training,
personal care, social and psychological services, medical treatment and rehabilitation engineering. Our
older students also receive assistance in forming realistic plans for long-term living arrangements.
TO learn more about Matheny, or to arrange a visit, contact:
Matheny
Peapack, N.J. 07977
201/234-0011
Founded 1946
56
EXCEPTIONAL PARENT
MARCH 1989
WHAT'S HAPPENING
CALIFORNIA
MICHIGAN
Adaptive
California State Uniersity, Chico
Allendale
Products
Contact: Eric Snedeker
Grand Valley College
(916) 895-6116
Contact: Jennifer Knight
6938B N. Raintree Milwaukee, WI 53223
June 19 - June 23
(616) 242-0454
Introduces
August 7- - August 11
Mission Viejo
The Posture Chair™ TM
Saddleback College
TEXAS
Contact: Jan Bugalski
(714) 361-6811
Houston
March 21 March 25
Houston Parks and Recreation
Contact: Kathy Feuillan
Northridge
(713) 643-7366
California State University,
Nancy Meade
Contact: Dr. Nick Breit
(713) 855-2246
(818) 885-3205
Date to be announced
Specially designed to promote upright
June 26 - June 30
posture and independent functioning of
your child
Pomona
CORRECTION: SSI REVISIONS
For the ambulatory or pre-ambulatory
child with mild to moderate neuromotor
Casa Colina Hospital and
problems (CP), down's syndrome,
Rehabilitation
In the November/December
learning disabilities, attention deficit
Contact: Jim Miller
1988 EXCEPTIONAL PARENT, in
disorders; for ages 2-8
(714) 593-7521, ext. 412
our What's Happening column, we
Attractive, comfortable, functional solid
July 26 July 29
ran an article entitled, "SSI (Supple-
oak construction, adjustable for growth
mental Security Income) Revisions."
Includes adjustable student desk
Santa Barbara
The last sentence stated, "For more
Covered by most healthcare plans
University of California
information, contact your local SSI
at Santa Barbara
office." This is incorrect.
Contact: Bill Hamilton
The Social Security
The Wing Chair™
(805) 962-1474
Administration (SSA) administers
August 22 - August 26
the SSI Program under Title XVI of
the Social Security Act. Therefore,
COLORADO
any and all matters concerning the
SSI program must be handled
Englewood
through your local Social Security
Cherry Creek High School
office. There is no such thing as an
Contact: Beth Nyhoff
SSI office per se, and our readers
(303) 694-3142
could possibly be misled by this
June 12- June 16
statement.
Specially designed to assist upright
We would like to thank Layne
sitting of your child
FLORIDA
M. Herber, District Manager of the
For the non-ambulatory child with mild
to severe/profound disabilities, ages 10
Social Security Administration in
months to 3 years
Sorrento
Billings, Montana for sending us this
Attractive, functional, oak veneer
Easter Seal Society
clarificiation.
construction
Contact: Shana Stearn
Includes adjustable contoured desk
(904) 383-4711
Covered by most healthcare plans
Date to be announced
Send for more information
Name
ILLINOIS
Address
Champaign
City
University of Illinois
Contact: Brad Hedrick
State
Zip
(217) 333-4606
Mail to: Adaptive Products, Inc.
6938B N. Raintree
July 2 - July 9
Milwaukee, WI 53223
©1988 Adaptive Products, Inc.
EXCEPTIONAL PARENT
MARCH 1989 57
FROM THE BOOKSHELF
development. While you are playing
be most interested in playing with
with your child, you can be helping
and most ready to learn from. These
THE
him increase his language skills.
guidelines are based on language
LANGUAGE
And you can have fun together at the
developmental ages. Each child has
of TOYS
same time. We know your child can
his own unique profile for all
benefit from these times with Mom
developmental areas, including
and Dad. We also know this
cognition, motor, social, self-help,
Teaching Communication Skills
play/work time is dramatically more
and language. A child may make
to Special-Needs Children
important for children with delays in
progress in different areas at different
Sue Schwartz, Ph.D.
their language development. They
rates. The result is wide variation in
Joan E. Heller Miller, Ed.M.
will need the extra effort that their
the developmental picture for each
A Guide for Parents and Teachers
parents can give them to help
child, regardless of his chronological
develop their language skills.
age. For example, a three-year-old
When speech and language
child with a twelve month language
therapists or teachers work with
delay may have "normal" cognitive
children with language delays, they
development or motor skills but
usually use toys they think will
speak on a two-year-old level.
encourage certain words or sounds.
Alternately, a four-year-old child
There is no "magic" to the toys they
with "normal" language may have
use. Rather, the toys are chosen
very delayed motor skills.
The Language of Toys:
carefully to be teaching aids. This
We have individual suggestions
Teaching Communication
book will help you to choose and to
for modifying your play to
use toys like the professionals to
accommodate the specific learning
Skills to Special-Needs
enhance the development of
needs of each child. We are sure that
Children - A Guide for
language in your child. Although we
we haven't addressed every
Parents and Teachers
have selected certain toys for this
individual need but we feel that you
by Sue Schartz, Ph.D. &
book, we want to assure you that
will be able to adapt our suggestions
Joan E. Heller Miller, Ed.M.
there are many other toys that can be
to your own child. The toys and
bought or made which can serve
exercises in this book are arranged by
The following excerpt has been
equally well.
language developmental ages. Each
reprinted with permission from the
The Language Of Toys is divided
section covers several months and
publisher, Woodbine House, Inc.
into two parts. In the first part, we
presents toys and dialogues that are
explain important background
appropriate for your child's
Developing communication is
information about language, its
particular level of language
as much a basic human need as
sequential development, some of the
development. There are similar
seeking food and comfort. For many
causes of language delay, the value of
guidelines throughout the book to
children this is a relatively simple
play, how play can enhance language
help you pick toys that are the most
process, while for others there may
development, and your role in all
appropriate for your child's level of
be significantly delays in this area.
this. In the next section - which is
language development.
There are a wide variety of causes for
the heart of the book we recom-
In addition to toys you can buy,
a language delay in this area.
mend toys that we have found to be
we also include at least two
Regardless of the cause, the results
useful in stimulating language
homemade toys for each of our
are usually the same: a child with
development and show you how to
language development levels. Many
delayed language development and
use these toys in playing with your
people enjoy making toys and there
concerned parents.
child. For each toy in the book we
is a lot of benefit - including saving
These concerned parents want
provide you with sample language
money - in this. In our work, we
to help their children with special
dialogues to help you get the most
have found that children and parents
needs learn language skills but often
from that toy. We encourage you to
treasure these homemade toys long
don't know the best way to go about
use these ideas in your play to
after other toys have been packed
it. Through our years of teaching
encourage language development.
away.
and raising our own children, we
We have designed this book to
Remember, our suggestions are
have seen that an amazing amount of
be used with any child who has a
only suggestions. Expand and
language can be pulled from even
language delay, whatever the cause
create. There are many books in
the simplest toy. Our book, The
may be. We have given you
libraries and in bookstores which
Language of Toys, shows you how to
guidelines which should help you
will tell you more about homemade
use toys to aid your child's language
decide which toys your child would
toys. We have included several in
58
EXCEPTIONAL PARENT
MARCH 1989
FROM THE BOOKSHELF
our reference list at the back of this
want you to enrich your child's
when they build independence and
book.
language long before that time.
develop imagination. We believe,
Parents often ask, "When
If your child is an older
however, that parents, teachers,
should we start?" You can start the
preschooler and you have just gotten
families, babysitters, and others can
exercises in this book even before
the diagnosis of a language delay,
enhance the development of richer
your child's language delay has been
then you can start this book at
language by playing with toys with
formally diagnosed. If you already
whatever level your child is placed
children for part of the child's
know that your child has some
and work from there. You might
playtime.
special needs, you have to consider
even be working with a therapist or
Follow your child's lead. If he
the possibility that he is language
school at this time. Show them this
is interested in farm animals, explore
delayed too.
book and explain how you want to
that area in your play. If you see that
Do not wait until you have a
integrate our ideas with your child's
he has no interest at all in cars and
specific diagnosis of language delay
specific plan. You will probably find
trucks, then put that idea aside for a
to begin. Often your child's
that our examples fit right in with
while. Your play should be fun,
diagnosis has to wait until you are
your child's individual education
interesting, and meaningful.
able to test him and in many cases
plan.
Experience your childhood again and
that doesn't happen before age two.
We do not expect, or want, you
enjoy the time you will spend in
You can always work on his
to turn into a teacher for your child
playful learning with your child.
language skills even before getting a
or to lose your role of parent.
diagnosis. It can only help him in
However, you can combine both
Copies of The Language of Toys
the long run.
roles in a way that is fun for both you
may be purchased through the
As you will see in our chapter
and your child. There is also no need
Exceptional Parent Library at $12.95
on language development, you
to occupy your child's every waking
per copy, plus postage and handling,
would not expect your child to be
moment with the exercises in this
see page 75.
talking in understandable language
book. There at times when children
much before one year of age. We
should play alone because that is
Pear Mom and Dad.
Toddy I went to the
Special Olympics and
I man a meda 1.
Love,
Joe
"To help each resident reach his or her highest level of achievement,
whatever it may be."
THE WOODS SCHOOLS
The Woods Schools is committed to
For complete details, call the Director of Admissions
providing services of the highest quality.
at (215) 750-4031 or write: The Woods Schools,
In addition to being fully licensed by the
Commonwealth of Pennsylvania, The
Langhorne, PA 19047.
Woods Schools is accredited by CARF.
EXCEPTIONAL PARENT
MARCH 1989 59
FROM THE BOOKSHELF
Outdoor recreation experiences
are among the best that life has to
The following excerpt has been
offer. Nothing seems to refresh me
ACCESS AMERICA
reprinted with permission from the
more than being outside in the
An Atlas and Guide to the National Parks
for Visitors with Disabilities
publisher, Northern Cartographic, Inc.
natural environment. Although I
enjoy a wide range of activities, the
Most maps and guidebooks of
adventure of outdoor experiences
parks are just that - one-dimension-
always gives me a new perspective
al catalogues of information design-
on my routines.
ed to orient the reader to a particular
Unfortunately, the potential
outdoor space or feature. In stark
"adventure" can easily turn into
contrast, Access America: An Atlas
frustration and exclusion. Many
and Guide to the National Parks for
outdoor experiences are simply not
Visitors with Disabilities, is the antithe-
as available to persons with
sis of the traditional guidebook.
disabilities as they are to non-
Access America represents the
disabled persons. Many times I, and
NORTHERN CARTOGRAPHIC
most multi-dimensional attempt to
others with disabilities, have set off
make the parks not only accessible,
to explore and enjoy a park only to
but usable, to people who represent
be confronted by a myriad of
the full spectrum of human abilities.
barriers.
Because of the variety and depth of
In some cases unavailability is
Access America: An Atlas
information provided, the prolific
compounded by the lack of reliable
and Guide to the National
use of maps and other graphics, and
information. For example, I have
the addition of a genuine human
Parks for Visitors with
telephoned sites or read guides that
element (through the inclusion of a
have labeled places "accessible",
Disabilities by Northern
series of personal essays), the readers
only to find when I arrived, that there
Cartographic, First Edition
is taken on a multi-faceted journey.
were accessible parking spaces or an
accessible toilet, but no way to enter
the nature center or picnic area or
Special games
campground, nothing available in
large print, and no telecommunica-
tion devices for deaf persons.
for special children.
The authors of Access America
have demonstrated a remarkable
awareness and understanding of the
difficulties, both natural and man-
All ages and ability levels are sure to enjoy our
made, faced by persons with
hardwood board games, action games, strategy
disabilities. The final product is a
games, and puzzles. Handcrafted of the finest
testament to the rigorous process,
materials and built to last for
including extensive surveys and site
years, our games are an
visits, employed to develop this book
outstanding way of developing
and the many years that went into its
production.
specific motor skills and
It is often said that too many
strengthening hand-eye
cooks can spoil the broth. In this
coordination.
case the use of nearly sixty
consulting editors, many of whom
Send for our FREE catalog!
are persons with disabilities,
certainly enriched the broth. From
my perspective, having been
involved in many projects using
WORLD WIDE
editorial boards, I think having sixty
GAMES
R
advisors was a brave feat in itself!
Reading this book as both a
Dept.EXP3
person with a disability and as the
Colchester, CT 06415
Executive Director of the National
60
EXCEPTIONAL PARENT
MARCH 1989
FROM THE BOOKSHELF
NORTHERN CARTOGRAPHIC
New!
Council on the Handicapped, it is my
have gained and are continuing to
view that the contribution made by
Access
gain access to more opportunities.
Access America is broad and far-
I believe that all Americans,
America
reaching. Access America reinforces
whether disabled or not, have the
two major themes currently
right to experience recreation and
An Atlas and Guide to
emerging from the disability
have access to recreation facilities
the National Parks for
and spaces. I commend the National
Visitors with Disabilities
Park
Potash
Headquartors
Park Service for its initiatives to
make the out-of-doors accessible to
A new, full color, 464-page atlas of America's
greatest parks, for "exceptional visitors".
Horseshoe
Canyon Unit
Island the Sky
persons with disabilities.
"The benefit of this project is immeasurable
I applaud the effort of Northern
this book will enable all Americans to ex-
Willow Flat
Buck Canyon
Overlook
Cartographic, Inc. to create a
perience the heritage of their land." William
Penn Mott, Jr., Director of the National Park
resource that will greatly enhance the
Service.
Grand View Point
Overlook
outdoor recreation experiences of
"This atlas is a major breakthrough in access-
persons with disabilities and their
ing park opportunities for all people who are
families and friends. The interest,
disabled." John Nesbitt, Ed.D., President, Spe-
The Maze
Needles Information Station
cial Recreation, Inc.
curiosity, and commitment
Squaw Flat
demonstrated by the authors are
"A beautiful atlas." 'Stuart Mace, Program Ser-
The Needles
vices, National Easter Seal Society.
exemplary.
It was my pleasure for me to
"Nothing less than a masterpiece
highly
provide a foreword to such an
recommended." Library Outreach Reporter.
N
miles
historic document. My wish is that
"Where can I find enough superlatives for this
Canyonlands N.P.
so much progress will be made each
stupendous achievement?" Justin Wright, The
Consult official Park maps and guides for complete listing of features.
Itinerary Magazine.
year that supplements will be needed
movement - independent living
to provide information about new
"Beautifully produced a staggering amount
of information relevant to the whole spectrum
and equal opportunity. The essence
and better accessible features.
of disabilities." United Retirement Bulletin.
of independent living involves
Park visitors with disabilities
"I frequently receive information on accessibil-
people with disabilities making their
must use this book not as the final
ity. I have never seen anything as wonderful
own decisions and being involved in
step in their research and planning of
as this guide." Susan Kniestedt, Ex. Dir., Spe-
cial Recreation Council of Greater St. Louis.
every aspect of life. Frequently,
a visit, but as a good first step -
recreation choices have been ignored
a first step that leads to questions
"Splendid piece of work." U.S. Senator Robert
T. Stafford, Senate Subcommittee on the Han-
or given a low priority. Access
and follow-up at the level of the local
dicapped.
America will enable persons with
park. If the atlas accompanies the
"It is truly a groundbreaking publication."
disabilities to make their own choices
visitor to the park, it should not be
Robert Montague, Ex. Dir., Special Olympics.
about which parks to visit and which
used as the exclusive source of
The phrase "Access America" is the trademark of the
experiences within those parks they
U.S. Architectural and Transportation Barriers Com-
accessibility information but as a
pliance Board. Northern Cartographic disclaims any
select.
basis of further inquiry to confirm,
relationship with this federal agency.
Evidence of equal opportunity
clarify and particularize every
is also apparent. Equal opportunity
situation.
for persons with disabilities means
Changes occur and mistakes get
having the same access to
made; there is no substitute for
opportunities as non-disabled
vigilance. Through correspondence,
persons and not being discriminated
telephone calls and on-the-spot
against because of an individual's
interrogation of National Park
disability. By virtue of the fact that a
Service personnel, visitors must
Request your local library
to acquire Access America
book on accessibility exists to
judge their own personal abilities in
describe what is accessible and what
relation to each feature and offering
"Access America", 464-page atlas and guide
text, special binding, full color, 250 maps. List
is not accessible implies that
of an individual park.
price $89.95. 25% discount on personal copies
opportunities are not equal.
or non-profit orders = $72.45 postpaid.
Brochure available. Send to: Northern Carto-
However, movement toward
Copies of Access America: An
graphic, Dept. B, P.O. Box 133, Burlington, VT
equal opportunity has occurred.
Atlas and Guide to the National
05402. Or, call 802-655-4321.
Fifteen years ago, the majority of
Parks for Visitors with Disabilities
Name
accessible features described in
may be purchased through the
Access America did not exist. The
Exceptional Parent Library at $89.95
Address
fact that progress has been made
per copy, plus postage and handling,
City
means that persons with disabilities
see page 75.
State
Zip
EXCEPTIONAL PARENT
MARCH 1989
61
FAMILY LIFE
"I'm not still at home
full time."
Problems in Summer Planning
C
harles Crowley, a short
seemed to me and Judy that when
year, we gave Paul, who was 12, and
energetic-looking man, in his
they had trouble they didn't do
Betsy, who was 11, some extra money
mid-30s, spoke quickly. "We
anything and certainly did not tell us
if they would either play with or try
are having a problem with planning
about the problems.
to include John in their activities.
our son John's summer. It came to a
"Last year John asked to stay
They probably each spent an hour
head last week when our older son,
home like the other kids in the
and a half a day at it. We also hired a
Paul, who is 13, asked to go to
neighborhood. We live right across
tutor to come three afternoons a
overnight camp. Paul has several
from a nice playground with a large
week for an hour.
friends who have been going to the
play area and some activities,
"All in all, things seemed to be
same camp for some years, and
although not particularly well
much more relaxed for John. The
January is the time to do something
year before he was in no mood to go
if we want him to go this year.
back to school; it took him a month
"After he left the room, my wife
to really settle down. Last summer
Judy wanted to know what we were
he talked to a lot of the kids in the
going to do for our eight-year-old
neighborhood and played with some
son, John. He has difficulty walking
of them. He seemed to be better off
because of a minor disability and he
when he entered school, probably
also has problem in learning at
because he had made some friends.
school. We have never had an easy
"I've also felt that we have such
time planning for his summer
high expectations of our kids. We
vacations.
expect them to work year-round and
"Two years ago, we sent John to
never to have any fun or relaxation.
a YMCA program and it was a total
When I was growing up, my mother
disaster. We took turns taking him to
and father always had me into
the camp in the morning because he
something. In the summer, I went to
wouldn't go on the bus. Every day
day camps or overnight camps. I
he used to cry before going. He was
always wished I could just stay home
exhausted and upset at the end of
and relax. You work so hard in
each day; and the people at the
school during the year that it seems
camp didn't seem to know what to
"I feel that we have too high
unfair to be expected to work in the
do with him.
expectations of our kids.
summer also.
"For some years the Y had
"This is a special problem with
talked about including kids with
supervised. Lots of kids are around
John because we don't want him to
disabilities in their program; that
in our neighborhood and they
fall further behind. He does do
summer was the first time they tried
usually do something with the
things a little slower, but it seems to
it. Although the staff seemed to be
counselors at the playground and
me, though, that he should have
very enthusiastic before the program
then come home for lunch and play
some chance to relax instead of
began, they didn't seem to follow
with each other. Because of the
dealing with all kinds of new
through when things got tough. It
summer problems of the previous
problems in the summer.
62
EXCEPTIONAL PARENT
MARCH 1989
FAMILY LIFE
"Judy enjoyed going to summer
what the kids should do, what the
you, I am the one who has the
camp. She liked not being
goals should be, how we should
increased responsibility during the
supervised by her parents all the
share household arrangements. We
summer if all the kids are home.
time. Judy will tell you that she
always have agreed. What we have
And particularly last summer, it
would like John to try another
differed on is what to do with our
made it look to Charlie like Paul and
program this year. She felt he
own vacations. This has become
Betsy did the work and Sam Turner,
accomplished very little last
more complicated because of the
who came to do the tutoring, did the
summer."
kids, particularly now that the focus
teaching. But I still had to be
is on John. But I wouldn't want to
available all day, because things
ummers and vacations are
"S
forget Paul or Betsy either.
didn't always work out. Some days
the only areas in which
"I think Paul wants to go to
Paul wanted to go off, or Betsy had a
Charlie and I have any
overnight camp so he won't have the
friend over, or John didn't want to go
disagreements. I'm not still at home
responsibility of taking care of John.
out. And I tell you, by the end of the
full time like he seems to think."
Last year he was an important part of
summer I was so tired I wasn't at all
Judith Crowley, a short, slender,
John's summer program.
ready to return to school.
youthful-looking woman, spoke
"I am a schoolteacher, so I don't
"For Charlie, winter vacations,
softly. "We agree on everything else,
work in the summers. Let me tell
when he is home with the kids, are
Illustration by Natalia Raphael
Raphash
EXCEPTIONAL PARENT
MARCH 1989
63
FAMILY LIFE
alright; they fit his work schedule.
teach that extra work in the summer
discussed how to settle this, we
Those are times that we obviously
doesn't help that much. What I
thought of you because you know
can get somebody, my sister or
expected from the tutor was help in
about education, as well as about
Charlie's brother and his wife, who'll
summer planning."
take the kids for a week. But I have
to have some rest before the new
school year starts. It may sound
T
he Crowleys came because of a
selfish, but it seems to me that we
disagreement over summer
also have to think of the other kids,
plans for their son John.
as well as ourselves.
Judith Crowley agreed that the last
"I also think that sooner or
summer arrangement had been
later, John has to do things outside of
helpful but demanded too much of
the family. We are a close family. I
her time and attention as well as that
think the kids are terrific and very
of their other children. She felt that
helpful all the time. But they're
John was ready to profit from a more
growing up and pretty soon they're
organized community based
going to leave home. In another few
program. She also agreed that they
years, John is going to have to go to
would have to find a better program
the junior high, which is combined
than the one from the previous
with the high school on the other
summer that had been a failure.
side of town. Sooner or later he is
Charles Crowley thought his
going to have to learn to accommo-
"It may sound selfish, but we
son should be allowed to stay at
date people he doesn't know and
have to think of ourselves."
home as he had the previous
kids he doesn't get along with.
summer. He believed that the school
"I also wonder how much
knowing John's problems, so we
year was such a challenge that a
schoolwork he should do in the
could help his teachers more in the
more peaceful summer would be
summer. I know from the kids I
fall. That's partly why, when we
appropriate for him.
The role of summer programs is
debated by families. Parents have
their own history and experience
Put Laureate's award winning
with summer programs that shape
their attitudes and behavior toward
software to work for your child.
their own children.
Mr. Crowley had felt that when
he was growing up, he was not
Computers are powerful tools. Effectively harnessed, they
listened to and was sent to summer
can open new worlds for your child.
camp against his own best wishes.
But quality software is essential. You need programs
Mrs. Crowley believed that going to
camp had broadened her view of
designed by people who understand children with special needs.
herself, expanded her skills and
Programs that are easy-to-use, exciting, flexible, and
exposed her to youngsters she would
effective.
have never known.
Laureate offers the quality you need.
When a youngster in a family
To learn how your child can benefit from
needs special help, it influences the
decisions parents make about how to
Laureate's special education
utilize family resources, both
software, write or call. Ask
emotional and financial. The
for our free catalog.
Crowleys had invested a great deal
of time and energy in helping John.
They had not spent as much time
considering their own personal
needs and wishes or those of their
Laureate Learning Systems, Inc.
other two children.
Dept. E-7
Their older son's request to go
110 East Spring Street
to an overnight camp was the first
Winooski, VT 05404
time the Crowleys had to consider
(802) 655-4755
64
EXCEPTIONAL PARENT
MARCH 1989
FAMILY LIFE
balancing the needs of all of their
Two years earlier, the Crowleys
children. His request also forced the
had tried a day-camp program for
Crowleys to review the arrangements
John that did not work out well.
DMP
of the previous summer.
This made Mrs. Crowley more
As families grow and develop,
willing to focus on John's needs and
DURALINE
their needs, resources and decision
abdicate her own during the
MEDICAL
making styles need to change. A
previous summer. For the coming
style that might be appropriate when
summer, she wanted to include the
PRODUCTS
a couple first gets married may need
interests of herself as well as her
to be considerably different when
older son and daughter.
they become parents. As their
Sometimes when a family has a
children grow older, further changes
child who has special needs, parents
DURALINE offers home
may be necessary.
focus their interest and time on that
service of ostomy and in-
In the Crowley family, once
child and do not make the necessary
continent products with
their younger son John entered
adjustments and considerations for
the understanding and care
school, Mrs. Crowley returned to her
other members of the family. As a
a customer deserves.
profession as an educator. Prior to
result, the parents may end up not
that, family vacations were
listening to anyone's needs, includ-
organized around Mr. Crowley's
ing their own. It was important for
the Crowleys to include their
children in a family discussion about
the summer. This would enable
them to know what each child
thought would be important. Even
when a parent cannot do everything
a child wants, it is important to
actively demonstrate interest.
The Crowleys arranged for a
meeting the following week. They
were surprised at how eager
everyone was to discuss summer
plans with each other. Initially, each
child presented his or her own
summer plans in terms of what he or
Toll Free
she thought their parents wanted
1-800-654-3376
and expected.
John knew that he had
"FRIENDS" informative
presented problems for his parents
monthly newsletter
work schedule and the children's
not only during the school year, but
Medicaid and Medicare
school schedules. This pattern
also during the summer. He thought
accepted for many states
continued even as the children grew
that staying at home would present
Orders shipped within
older and Mrs. Crowley returned to
the least demands on his family.
24 hrs. via UPS
work.
Paul, the older son, was
Automatic delivery
Nevertheless, family decisions
concerned about the family's
Member of HIDA,
were often made as if the Crowleys
finances. The previous summers he
NAMES, and OADMEC
only had one child with a mother at
wanted to stay around the house
Call or write for catalog
home and a father at work. Mrs.
because he thought this was the least
Free Samples
Business hours 9 to 9
Crowley found herself fatigued by
costly. He raised the question of
Monday thru Friday
the end of her school year, and she
overnight camp for this year because
wanted to recoup her energies
he had assumed that the family's
DISCOVER
VISA
during the summer as well as take
finances had improved, and because
some courses that would enhance
he felt he had been putting off
her own career. As a result, she had
something he had wanted to do for a
DMP
DURALINE
been interested in finding more
long time.
structured programs for all three
7-13 E. MAIN
P.O. BOX 67
Mr. and Mrs. Crowley also
children.
LEIPSIC, OH 45856
discovered that Betsy had really
EXCEPTIONAL PARENT
MARCH 1989
65
FAMILY LIFE
wanted time to be with her mother,
directors often lacked a clear
John had friends who were
and had been spending the summers
understanding of the challenges and
going to the YMCA day camp. He
at home in order to be close to her. It
expectations.
had heard how much they had
was also clear that Betsy was better
Parents often have difficulty
enjoyed the previous summer, and
able to structure her activities
planning for a child with a disability.
he wanted an opportunity to try
around the playground than either of
New programs may remind them of
again. Mr. and Mrs. Crowley went
her brothers.
the inadequacies of their previous
with John to meet the camp director
Mrs. Crowley was able to
activities with the youngster. Parents
and discuss the activities that they
discuss her wish to have some time
are often puzzled about finding or
could expect and the kinds of
during the summer in which they all
evaluating a camp program for a
adaptations that would help John be
were together as well as to have
child who has special needs.
included. The family agreed to meet
some time during the summer for
Parents do know their
once more in the middle of June to
her own activities. Mr. Crowley
children's limitations and what
have a last chance to discuss their
realized how, while he was busy
helps them adapt to living and
summer plans.
taking care of the family in his own
playing at home, in the community
way, he had assumed everybody was
and at school. This information can
-M.J.S.-
doing what they wanted to do. At
now be supplemented by their
the meeting, he also raised the
meetings with school personnel in
problem of finding an appropriate
planning their child's school
This case has been selected from private
program for John.
program. They may also have a
practice and consultation files. The
In recent years, community-
chance during the spring to meet
names and circumstances have been
based summer programs have
with their youngster's teacher to
changed to preserve confidentiality.
expanded to include a whole range
get suggestions for the summer
of children who had not been served
recess. This knowledge becomes
before. When this first began to
the basis for evaluating any summer
occur, both parents and program
program.
Technology for children
Bancroft
Early vocational evaluation
A Tradition of Excellence
Individually tailored training prescription
Haddonfield, NJ
Supervised job placement
Mullica Hill, NJ
Owls Head, ME
(609) 429-0010
66
EXCEPTIONAL PARENT
MARCH 1989
FAMILY FORUM
LETTERS TO THE EDITORS
fundamental in Massachusetts and in
other states and will be even more
Continued from page 6
lists for admission for substantial
widespread when P.L. 99-457 is
lengths of time. In most areas of the
implemented. In particular, the
PROSPERING IN THE
country, there are no other
family focus of early intervention
MAINSTREAM
developmental services available for
programs in this state differs from
infants and toddlers and parents
the habilitative programs exclusive
When I read the article about
have no opportunity to select among
child focus described in the article.
Jason Elias mainstreaming
programs offering different
We encourage early referral because
(Prospering in the Mainstream,
philosophies of treatment.
admission to a program does not
September 1988) in the Rincon Valley
There are some commonalties
mean a child automatically receives a
School District in Santa Rosa,
of program design that are
particular prototype of services.
California, I recalled how well my
own son, Kevin Harrington, was
treated when he attended Madrone
School, Rincon Valley District, 1975-
76 school year.
Mulholland Positioning Systems'
Kevin has muscular dystrophy.
At that time, third grade, Kevin
Walkabout™
attended school half days because he
was just about ready for a wheelchair
but could still walk (much difficulty).
Designed to Put
Kevin was mainstreamed into a
Physically Involved
regular class and the district assigned
Children a Step Ahead.
an aide for him. This was right at the
beginning of Master Plan and many
schools had just started to think
Walkabout from Mulholland
was designed as an ambulatory
about compliance. The district really
aid for children who lack trunk
wanted Kevin to be part of a regular
stability or balance.
class and peer group.
Apparently, they have kept up
Combining precise postural
the good work. Recently, I substitut-
support with maneuverability,
ed in Jason's classroom at Binkley
the Walkabout gives the child
proximal control and
School, one of the district's middle-
external balance for
grade schools, and it seemed that,
hands-free, self-initiated
indeed, Jason acted and was treated
movement through
just like a regular student.
space.
The Walkabout is not
Marian Harrington
only an effective aid in
Santa Rosa, Calif.
gait development, it also
increases independence, self
THE PRESSURES OF EARLY
confidence and psychological
INTERVENTION
well being.
The article entitled "The
Pressures of Early Intervention"
Fully adjustable over a wide
Folds quickly without tools
(September 1988) highlights the
range of sizes and
for easy transport
variability in program goals and
positions.
gives the impression that choices in
Seat height adjusts from
Constructed of anodized
12" to 20"
early intervention programs are
aluminum alloy with
readily available. Here in
stainless steel fasteners
Easy to clean vinyl nylon
Massachusetts, over 1,000 are
for lightweight durability.
upholstery
clamoring for services - - not
postponing the decision to enroll - -
because they have been on waiting
Mobility Plus
215 North 12th St./P.O. Box 391
Santa Paula, CA 93060 (805) 525-7165
EXCEPTIONAL PARENT
MARCH 1989
67
FAMILY FORUM
Instead, parents are considered to be
balanced information about the state-
EXCEPTIONAL PARENT
members of the team and decide
of-the-art of this very dynamic,
IS SOLICITING YOUR
when they want services to begin.
evolving field.
QUESTIONS!!!
They may avail themselves only of
parent support and resource options
Tracy Osbahr, President
Although we continue to
while they help create a treatment
Mass. Early Intervention
welcome letters from our readers on
plan that reflects their perspectives.
Consortium, Inc.
any subject, we would like to more
The early intervention program is a
Northampton, Mass.
systematically explore areas of day-
logical place for families to network
MORE KUDOS
to-day living. We are now soliciting
with others with similar concerns.
questions in the following areas:
Our goal is not "to begin the
process of remediation as soon as
The changes made last year in
1). Toileting needs of your child.
possible," but rather is to begin
your format made EXCEPTIONAL
2). Genetic counseling procedures
helping the family adjust to their
PARENT much easier to read. The
and practices.
particular situation as soon as they
format makes the information easier
3). Feeding.
are ready. Programs are just as
to find and use, particularly when
focused on addressing the support
referring to back issues.
I have been a subscriber for
Please send all questions to:
and informational needs of the
family as on meeting the therapeutic
several years, and the past two years,
QUESTIONS,
and developmental needs of the
in particular, I have found the articles
EXCEPTIONAL PARENT,
child.
to have greater substantive value and
1170 Commonwealth Ave., 3rd Floor,
We applaud the increasing
the resource sections to be well-
Boston, Mass. 02134.
attention to early intervention
organized and informative. Keep up
afforded by EXCEPTIONAL
the quality!
PARENT and look forward to
Janis Boyd Hudson
additional articles that provide
Beaumont, Texas
HELP YOUR CHILD TOWARDS
BETTER COMMUNICATION
INTERACTION, EDUCATION, AND PLAY
The new Minspeak™ Application Program from Prentke Romich
Working in Augmentative and Alternative Communication affords many challenges.
One of the greatest challenges is finding enough time - time to select vocabulary,
time to organize and code it, time to store it into the device. Only after that is done
can you address your therapy goals.
Interaction, Education, and Play gives you that time. A starter set of vocabulary has already been selected, organized and coded
by Joan Bruno, Ph.D., CCC-SLP, a recognized clinical expert with this age group. And it comes on a computer disk, ready to load
into a Touch Talker or Light Talker*.
Interaction, Education, and Play gives your children the opportunity:
TO
Vocabulary and activities range from
TO
Stories, songs, and nursery rhymes teach
DEVELOP:
preschool to early academic level. A set
PLAY:
children to communicate through play.
of new icons targets children's individual
needs and interests.
TO
Interactive dialogues and a vocabulary
TO
A flexible vocabulary promotes freedom of
INITIATE:
of 100 different sentences, representing
CREATE:
expression. A core vocabulary of 500 words,
a range of pragmatic functions, facilitate
including articles, pronouns, prepositions,
the development of interaction skills.
and different verb tenses, enables nonspell-
ing children to generate new messages.
TO
Vocabulary facilitates active participation
LEARN:
in a variety of classroom activities.
TO
Expressing feelings promotes social-
EXPRESS:
emotional well-being. Icons depict a
variety of emotions.
Interaction, Education, and Play gives you time - time to
PRC
Prentke Romich Company
help your children learn the program, to acquire new language
1022 Heyl Road . Wooster, Ohio 44691
skills, to be better communicators. Interaction, Education, and
(216) 262-1984 or 1-800-642-8255
Play helps your children toward better communication.
FAX (216) 263-4829
Loading requires a Memory Transfer Interface
WP-33C
68
EXCEPTIONAL PARENT
MARCH 1989
CLASSIFIED DIRECTORY
SHOPPING MART
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in both traditional camp activities and academics.
Field trips, elective activities, cabin unity days,
If you have any
SIGN LANGUAGE. Personalizing available - Fund
Raising - FREE Catalog - SIGNS OF THE TIMES,
special activities. Program stresses positive
problems with your
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recognition, reinforcement and goal setting. Caring,
supportive staff. Experienced R.N. on site. Located
subscription, we
(405) 943-8657 V/Tdd.
Apt.#
in National Forest on lake and river. Two sessions:
want to solve them
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6/13-7/14, 7/18-8/18. ACA accredited. Contact R.
S. Bauer, 3811 W. Broadway, Mpls., Minn. 55422,
to your complete
STRATEGIES FOR SUCCESS
(612) 536-9749.
satisfaction. You
IS YOUR CHILD HYPERACTIVE, HAVE
LEARNING, ATTENTION PROBLEMS? Strategies
Missouri
can help us by
for Success: best book available for parents, teachers.
Practical help: discipline, self-esteem, treatment
attaching your
PINE VIEW CHRISTIAN HOME
decisions, best teaching methods. "Showed me
what works." Shares years of clinic and research
A loving Christian atmosphere for brain injured
magazine label here,
experience. $14.95 ppd. Or free brochure. Write
children. We provide physical and occupational
or copy your name
Strategies, Dept. E, Southwest Children's Center,
therapy for the development of the child. Contact
and address as it
7400 Louis Pasteur, San Antonio, TX 78229
Pine View Christian Home, Route 2-Box 47,
Summersville, Mo. 65571, (417) 932-4557.
appears on your
SCHOOLS, CAMPS,
New Jersey
label. Send this,
along with your
RESIDENCES
BANCROFT CAMP
An unusual opportunity for children & adults with
correspondence, to:
developmental disabilities. Structured educational
EXCEPTIONAL
Connecticut
and recreation activities. On the water in beautiful
Owl's Head, ME. Programs based on individual
PARENT, P.O. Box
CAMP HORIZONS
abilities. Staffed by caring, energetic professionals.
3000 Dept. EP
Ten years of serving children and young adults who
2 week to 2 month sessions. ACA accredited, For
Name
Address
information, contact: Director of Admissions:
Denville, NJ 07834
City
State
are mentally retarded. Year-round residential
camping: summers, weekends and school
The Bancroft School, Hopkins Lane, Haddonfield,
vacations. Structured activities. ACA accredited.
NJ 08033, (609) 429-0010.
Camp Horizons, Babcock Hill Road, South
MOVING?
Windham, Conn. 06266, (203) 456-1032.
North Carolina
Florida
Simply attach the label from this
CAMP SKY RANCH
CAMP THUNDERBIRD
Real camping for the special child since 1948. Four,
magazine and write in your new
Educational overnight camp for children and adults
2-week sessions or any combined sessions. Lake
address below. Please allow 4 - 8
ages 6-up who are mentally handicapped. 20 miles
and heated swimming pool, boating, horseback
NW of Orlando in Wekiwa Springs State Park. 6,
weeks.
riding, crafts, planned programs, nurse on staff.
12, 19, 26 day sessions June thru August. Multiple
Camp Sky Ranch, Route #1, Box 540-C, Blowing
dates possible. Independent living / social skills,
Rock, N.C. 28605. Jack and Betty Sharp, Owners,
swimming, sports, games, singing, campfires, camp
MY NEW ADDRESS IS:
(919) 854-1141. Dan C. Norman, Director, (704) 264-
craft. High counselor / camper ratio - ACA
8600.
Accredited. 909 E. Welch Road, Apopka, Fla.
32712, (407) 889-8088.
Pennsylvania
Name
LEE MAR SUMMER CAMP
Address
UNIQUE TRAINING PROGRAM
Apt #
For moderately mentally handicapped. 36 years of
Unique residential and vocational independence-
camp leadership. Co-ed 5-18. Unique program
oriented training program. Limited to 21 mildly
City
offers academics, speech & language therapy, motor
retarded adults. $1775 per month. Telephone (407)
perceptual training, plus innovative social,
597-2315 or write T&M Ranch, P.O. Box 874,
recreational & athletic activities. Excellent facilities
State
Zip
Indiantown, Fla. 34956.
& staff. Ms. Lee Morrone, 360 E. 72 St., A-711, New
York, N.Y., (212) 988-7260.
Georgia
Tennessee
AGAPE VILLAGE
SUBSCRIPTION RATES
Private, non-profit, residential community for
TALL PINES CAMP
mildly/moderately retarded adults.
Tennessee summer camping for mentally retarded,
Individualized instruction provided in
Order 8 issues of EXCEPTIONAL
co-ed, ages 7-50. Nineteen years experience.
independent living and social skills. Vocational
Activities: swimming, arts/crafts, horseback,
PARENT for only:
training, job opportunities available in Agape
boating, archery, riflery, field trips, fishing, Outdoor
Nurseries, greenhouses, tree and shrub farm, or
camping activities structured in individual abilities.
Village Industries, small contract work. Monthly
$16 per year for individuals.
Professional staff. Self-care emphasized.
residential fee $900. For information, telephone
3 and 6 week sessions. $225 per week. Enrollment
$24 per year for libraries, schools
(912) 471-3700, or write 3711 Agape Village Rd.,
limited to 60. Contact: Ron Eydt, Route 2, Box 194
and agencies.
Macon, GA 31210
A, Tellico Plains, Tenn. 37385, (615) 261-2138.
Foreign Postage, add $5.00 per year
Massachusetts
Virginia
Renewal
New Order
RIVERBROOK
FAITH MISSION HOME
Check Enclosed
Bill Me
A private residential facility designed to meet the
Loving, christian, residential care and training for
needs of moderately, mentally-handicapped girls.
ambulatory, mentally-retarded and brain-injured
Mail to:
The gracious estate houses twenty-five students in a
children and young adults. HCRI, Box 114, Free
warm family atmosphere. Ice Glen Road,
EXCEPTIONAL PARENT
Union, Va. 22940 (804) 985-2294.
Stockbridge, Mass. 01262 (413) 298-4926.
P.O. Box 3000 Dept. EP
Denville, NJ 07834-9919
EXCEPTIONAL PARENT
MARCH 1989 69
FAMILY ALBUM
A
LETTER
TO OUR
SON
By Debbie Charette
Dear Anthony,
What better a time than your first birthday to
let you know how very dear you are to us (Daddy,
Mommy, and your brother, Joey). Unfortunately,
the depth of the love we have for you could
never be sufficiently expressed through words,
but nonetheless I will try.
They say God works wonders, and you, our dear son,
have been a true blessing in disguise. I must admit at birth a lot of
emotions tried to take center stage, but the strongest emotion of all, that being
our immense love for you, made all else seem less important to us. Don't get me
wrong, there are those days when your future chokes us with frightened uncertainty,
but your father and I have come to realize that if given the opportunity your brother
Joey's future could cause us the same fears and anxieties. What we must focus our
energies on is today, not tomorrow or yesterday! Sometimes the matters of today
will have an effect on your tomorrows, so we can only pray that we gain strength
and knowledge to make those tomorrows the best they could possibly be for you!
We have many hopes for you, dear son. Hopes that we, as a family, can help you
obtain your fullest potential. Hopes that somehow we could return to you all the
love you have given to us, and that you are so deserving of. Most importantly
though, hopes that you give yourself the same unconditional love, and that you
accept Anthony for the beautiful and special person he is.
I will end in saying Anthony, that in days to come if you ever find yourself in
need of a great big hug from Daddy, Mommy, or your brother, Joey, and if for some
reasons we are not in arms reach, you can always take out this letter and know that
your family has always loved you for who you are-our Anthony!
Happy First Birthday, dear son!
All our love - all your life!
70
EXCEPTIONAL PARENT
MARCH 1989
Practical and Up-To-Date Resource Books
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the Family:
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-Rehabilitation Literature
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Making an Exceptional Difference is a compila-
with Susan Cashee photographs Malley and Mary
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tion of articles that provides practical information
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With Disabilities by Harilyn
These articles were chosen because they:
Rousso with Susan Gushee O'Malley and Mary Severance.
Difference
1. are written clearly and require no previous
This book offers young women with disabilities empower-
technical knowledge to be understood.
ing role models and the powerful message that they do not
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have to be or become any one thing because they are dis-
3. communicate the possibilities computer tech-
abled and female--they have full lives ahead of them. It
nology is opening up for people with disabili-
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ties without exaggerating the value of the
people learn that making choices--about school, work,
computer as a miracle cure.
family, and love--is what being disabled, female, and proud
is all about.
"You do not have to be or become any one thing because
you are a woman or because you have a disability.
There are a range of possibilities from which you can
Are children with physical, mental, emotional,
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-Harilyn Rousso
medical or other disabilities welcome to attend
"Don't overstate your disability and don't ignore it. Be
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integrating children with special needs into child
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FAMILY ALBUM
A
VERY
SPECIAL PERSON
by Emilie Lawrence
Photo by John Beckman © Quadrant 1988
Emilie, 11, and her mother,
Susan, do Christi's hair.
Emilie wrote this story
for a school 4-H contest.
This is a story about my sister, Christi. I want you
But as Christi got older, her seizures got worse. In
to know about a person who has had a lot of troubles in
about five years, she got stitches in her chin, her lip, her
her life. In spite of these things, she has become the best
eyebrow, and her head. She also broke her leg once, her
person she can be.
ankle twice, and her arm once. These injuries were all
Christi was born on March 24, 1971. She was
caused by seizures.
perfectly normal. On April 21, 1971, four weeks after
After our family thought about it we decided
Christi was born, she was in a car accident. They took
Christi should have a surgery that would help her
her right to the hospital. Even though she had a severe
seizures. She had the surgery on May 29, 1986. She was
skull fracture, the doctors didn't think she had brain
at the University of Minnesota hospital after the surgery
damage.
for seven weeks. When she came home she had to be
When Christi was six months old, the doctors
fed by a tube in her stomach, but since then she has
decided she had brain damage and epileptic seizures.
learned to eat by mouth again. The surgery was not
These two problems caused her to walk and talk more
successful, and has left her paralyzed. But, as always,
slowly than others.
Christi has learned to make the best of her life.
When Christi was four she went to a special school
And even though Christi can't walk or talk
called Msgr. Pitt. As Christi got older she went to
anymore, she can still do a lot of things, like when she is
another school called Churchill Park. When Christi was
happy she smiles and kicks her legs. And when she is
nine she was in the Special Olympics in swimming. She
unhappy she cries and frowns to let us know how she
was in the Special Olympics for four years, she won
feels. She goes to high school now. She likes to watch
seven medals and 14 ribbons. Christi has gone camping,
me compete in gymnastics. Last summer our family
hiking, and boating with her family. On vacation she
spent a lot of time together at the lake. Christi was able
has gone to Washington, D.C., Holiday World, and
to go down the hill to go swimming and boating in a
Disney World three times.
special trailer pulled by a tractor that our Grandfather
Another special time that Christi had was first
fixed up for her.
communion. Christi didn't know enough about God
I have told you everything about Christi and I just
when she was seven to make her communion, but she
want to say I am very proud of my sister.
was able to make communion with me when I made it.
72
EXCEPTIONAL PARENT
MARCH 1989
FAMILY ALBUM
My
Brother
Benjamin
by Jennifer Carlson
My brother is retarded,
but that doesn't mean that
that's
we can't play and help
each other. He's a great
washt
was't
3/ XFALR
player, and I help him say
words and stuff, like I am
in this picture. Being
you you
retarded doesn't mean
that people are gross or
anything, it's just the way
they are born.
Jennifer Carlson, nine, wrote this
story about her brother Benjamin,
-
four, who has Down syndrome.
Also pictured is their baby sister,
Kisa. The Carlsons live in Spring
Valley, Minn.
EXCEPTIONAL PARENT
MARCH 1989
73
FAMILY ALBUM
Special Olympics
by Tom Moritz
TAFFOR
53
SLC
HAWKS
Mike celebrates his winning day at the
Special Olympics.
HT
June 4, 1988,
The day Mike Moritz went to the Special
Henniker
Olympics. The first event was the standing long
TIGERS
jump. Mike jumped three times. He won fifth
place in the long jump.
His next event was the softball throw. He
threw the softball three times. Mike won fifth
place in the softball throw.
His last event was the 50-meter dash. Mike
was in the lead for most of the time. Then this kid
started to gain on Mike. He and Mike had a tie for
the gold medal. They ran out of gold medals.
Tom Moritz, 11, is in the fourth grade at
Mike got a ribbon, and they sent a gold medal in
Henniker Elementary in Henniker, N.H.
the mail.
He wrote this story about his brother's trip
to the Special Olympics. Mike is 8 and
has Down syndrome.
74
EXCEPTIONAL PARENT
MARCH 1989
EXCEPTIONAL PARENT LIBRARY AT THE B.U. BOOK STORE MALL
NOW YOU CAN ALSO ORDER ANY BOOK YOU WANT FROM US.
Simply list your selections on the order form below.
CIRCLES OF FRIENDS by Robert and
THE SPECIAL CHILD: A SOURCE
EDUCATING THE DEVELOPMENTALLY
Disabled,
Martha Perske. $9.95
BOOK FOR PARENTS OF CHILDREN
DISABLED; MEETING THE NEEDS OF
Female,
WITH DEVELOPMENTAL DISABILITIES
CHILDREN AND FAMILIES by Jan S.
FINANCIAL PLANNING FOR THE
by Siegfried M. Pueschel, James C.
Handleman & Sandra L. Harris.
HANDICAPPED by Don P. Holdren.
Bernier and Leslie E. Weidenman.
$25.00
and Proud!
$32.50
$22.50
HELPING CHILDREN OVERCOME
STORIES OF TEN WOMEN
HANDICAPPED INFANTS AND
NEW PERSPECTIVES ON DOWN
LEARNING DIFFICULTIES
WITH DISABILITIES
CHILDREN: A HANDBOOK FOR
SYNDROME by S.M. Pueschel, C.
by Jerome Rosner. $16.95
by Harilyn Ramo
PARENTS AND PROFESSIONALS
Tingey, J.E. Rynders, A.C. Crocker &
with Susan Gushee Malley and Mary Severance
by C. Tingey-Michaelis. $24.50
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HANDBOOK OF MICROCOMPUTERS
photographs by Flo Fox
IN SPECIAL EDUCATION
OUR SPECIAL CHILD: A GUIDE TO
DOWN SYNDROME: AN
edited by Michael Behrmann.
SUCCESSFUL PARENTING OF
INTRODUCTION FOR PARENTS (Rev.
$31.00
HANDICAPPED CHILDREN
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MUSIC ACTIVITIES FOR RETARDED
DISABLED, FEMALE AND PROUD!:
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GUIDE FOR HELPING CHILDREN WITH
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HOME CARE FOR THE CHRONICALLY
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ILL OR DISABLED CHILD;
edited by Carol Tingey. $29.00
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THE DISABLED CHILD AND THE
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CHILDREN AND ADULTS by I.L. Rubin
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MAKING AN EXCEPTIONAL
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CHILDREN CAN ENJOY LIFE TO ITS
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edited by G. Gordon Williamson
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CHILDREN WITH HANDICAPS; A
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THE SPECIAL EDUCATION
WHEN THEY'RE NOT IN SCHOOL?
MEDICAL PRIMER by M.L. Batshaw
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HANDBOOK: HOW TO GET THE BEST
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STRATEGIES FOR HELPING PARENTS
GUIDE TO THE NATIONAL PARKS FOR
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CHILDREN WITH SPINA BIFIDA -
BROTHERS & SISTERS: A SPECIAL
Northern Cartographic, First Edition.
Milton Seligman. $19.95
EARLY INTERVENTION AND
PART OF EXCEPTIONAL FAMILIES
$89.95
PRESCHOOL PROGRAMMING
by Thomas H. Powell. $18.00
SPECIAL EDUCATION NATURALLY by
edited by G. Gordon Williamson
THE LANGUAGE OF TOYS: TEACHING
Gary M. Robb, Mark D. Havens &
and Margery Szczepanski. $25.00
COMMUNICATION SKILLS TO
MENTAL RETARDATION
Jefrey P. Witman. $18.50
SPECIAL-NEEDS CHILDREN - A GUIDE
HANDLING THE YOUNG CEREBRAL
DOWN SYNDROME: A RESOURCE
DUE PROCESS IN SPECIAL
FOR PARENTS AND TEACHERS by Sue
PALSIED CHILD AT HOME
Schartz & Joan Heller Miller. $12.95
HANDBOOK edited by Carol Tingey.
EDUCATION by Milton Budoff.
by Nancy Finnie. $8.95
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ENCYCLOPEDIA: THE COMPLETE
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Name
book on children's health issues.
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A FAMILY'S JOURNEY FROM GRIEF by
Jane Bernstein. $17.95
State
Zip
DISABILITY AND THE FAMILY: A GUIDE
Telephone
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INTERBANK
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Please allow 4-6 weeks for delivery. Returns must be
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For each additional item.
made within 4 weeks of delivery. No overseas returns.
EXCEPTIONAL PARENT
MARCH
1989
75
FUN STUFF
IN THE
Have
CAR
2. Pump
your child
gas
help you:
by D.J. Orr
Some children do not" "pick-up" new skills as easily as
other children. They often need to review and
practice skills before the skill is actually learned.
1. Figure
mileage
3. Plan a
vacation route
5. List rhyming words,
find consecutive letters
S
of the alphabet, and find
as many different license
4. Read
plates as you can.
a map
visid,
C
vive
16/1/11
with
II/I/N
11/1/21
11/11/16
S
STOP
whill
6. Note differences
whilly
in shape, size and
0
color of things you
can see
11/1/11
11/1/11
76
EXCEPTIONAL PARENT
MARCH 1989
Exceptional Equipment
For Exceptional Kids
Reprinted by permission of
© Therapeutic Equipment Corporation 1989
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Jay® Cushion Child
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Ortho-Kinetics Pony II™- Medium
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Jay® Protector™
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Fortress Scientific 2000PD (S550 Seat)
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Fortress Scientific 2000PD (14" Seat)
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E&J Posture Commode Trainer
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199.00
Tumble Forms® Products:
Footrests (For Model Above)
74.00
49.00
Deluxe Floor Sitter — Small
136.00
122.00
E&J Commode-Posture Chair
330.00
249.00
Deluxe Floor Sitter - Medium
188.00
169.00
Above Model With Neck Support,
Deluxe Floor Sitter - Large
262.00
236.00
Tray & Footrests
551.00
399.00
Feeder Seat - Small
88.00
79.00
Ortho-Kinetics TLC™ Bath Chair (48")
295.00
229.00
Feeder Seat — Medium
123.00
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Ortho-Kinetics TLC™ Bath Chair (52")
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Feeder Seat - Large
203.00
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Headrest (For Models Above)
75.00
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Carrie Seat™ — Pre-School
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Ortho-Kinetics Adaptive Commode
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Carrie Seat™- - Elementary
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Invacare® Erick
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Columbia Medical Car Seat
429.00
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Invacare® Maxit
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379.00
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Don't Keep Off The Grass
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Travel from your home, to the school bus, to the classroom - and the Carrie
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Call Toll Free 800-631-7277
Forms®
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EXCEPTIONAL
PARENT
®
Parenting your child
with a disability
Volume 19, Number 3
April 1989 $3.50
BEGINNING IN THIS ISSUE
MAKING YOUR HOME WORK
REN
LOOHOS
Social Skills
04
0 7447074152 7
E
verest
&
e
n
n
1
n
S
All wheelchairs are made
for children to sit.
Hot Wheels TM is designed
for children to grow.
Jamie ats years
Oxx
-
Janue's 4th Birthday Party.
Soon a whole new generation of
can easily adjust the chair's width
on the go, contact your nearest Hot
kids will be growing up with an
and depth yourself. In a matter of
Wheels dealer listed here.
advanced new design in power
minutes. Without costly rebuilding.
And discover why growing up in a
wheelchairs.
What's more, Hot Wheels is
wheelchair has never been easier.
Introducing Hot Wheels.
portable, quickly disassembling into
TM
Unlike other wheelchairs which
four convenient components.
are little more than scaled down
And because it's from Everest &
adult versions, Hot Wheels was
Jennings, you can be sure of
Hot Wheels
designed especially for kids.
dependable performance for years
It features an innovative modular
to come.
Hot Wheels is a trademark owned by and used under license
frame. So as your child grows, you
So if your child is on the grow and
from Mattel Inc. © 1988.
Everest
&
Jennings
See Hot Wheels™ on display at these Everest & Jennings Dealers.
A-Ability Med Equipment
Care Medical Supplies
Glasrock Home Healthcare
J.D. Brown & Company
Orthopedic Appliance
Tampa, FL
Mt. Vernon, IL
Jacksonville, IL
Joliet, IL
Birmingham, AL
813/932-6818
618/244-4949
217/243-5807
815/723-0611
205/322-0384
Aaro Medical
Castlebury Medical
Glasrock Home Healthcare
J.E. Medical
Owens Healthcare
Greenville, SC
Wichita, KS
Tampa, FL
Eau Claire, WI
Houston, TX
803/242-6791
316/267-2805
813/626-1437
715/832-1685
713/661-5668
Aaro Medical-Primedica
Clinishare Health
Green Bay Home Medical
Keene Medical Products
Pledge Medical
Norcross, GA
Chatsworth, CA
Green Bay, WI
Lebanon, NH
Rockville, MD
404/242-1301
818/709-6221
414/432-2120
603/448-5225
301/986-1031
Abbey Medical
Colonial Medical Supply
Hamilton Health Aids
Kirson Medical Equipment
Pulmocare Medical Supply
1-800-421-5126
Orlando, FL
Cincinnati, OH
Baltimore, MD
Champaign, IL
CA: 1-800-262-1294
407/849-6455
513/923-3300
301/391-1811
217/352-7483
For your local branch
Conva-Care Service, Inc.
Harrisburg Healthcare
Knoll Patient Supply
Rehab Equipment Centers
Access Ability
Bedford, IN
Harrisburg, PA
Topeka, KS
Southington, CT
Tulsa, OK
812/279-3563
717/238-9683
913/232-5972
203/621-6339
918/583-9902
Cortech Inc.
Healthcare Equipment Inc.
Koebers, Inc.
Rehab Equipment & Supply
Adaptive Wheelchair
Waynesboro, PA
Durham, NC
Chicago, IL
Peoria, IL
Detroit, MI
717/762-8141
919/489-7408
312/434-1420
309/679-6054
313/882-6078
Denman Medical
Health Mart
Kraemer Rx
Rehab Solutions Inc.
Albany Surgical Supply
Quincy, IL
Bakersfield, CA
Elizabethtown, PA
Brick, NJ
Albany, NY
217/224-9164
805/327-3706
717/367-1262
201/458-5155
518/449-5716
Dettmer Brace
Health South
Lewis Wheelchair Repair
Rehab Specialists
Alan's Wheelchair Repair
Orlando, FL
Winter Park, FL
Long Beach, CA
Mt. View, CA
Orange, CA
407/425-2795
305/297-0967
213/597-1026
415/965-8282
714/639-8222
Economy Medical
Health South Orthotics
Loyal La Plante
Shield Healthcare Center
Allied Medical
Concord, CA
and Prosthetics
Tulsa, OK
San Leandro, CA
Westland, MI
415/686-3323
Birmingham, AL
918/835-6381
415/895-0200
313/729-7800
Economy Medical Equipment
205/592-0226
Medical Rehab Services
Stein Medical
Americare Medical
Concord, CA
Hooks Convalescent Aids
Atlanta, GA
Appleton, WI
Equipment Inc.
415/680-0638
Merrillville, IN
404/458-1329
414/733-1010
Savannah, GA
Elmira Homecare
219/769-1065
Metro Rehab Services
Suburban Medical Service
912/355-7055
(Div. of Linde Homecare)
Home HealthCare Equipment
Evergreen Park, IL
Newtown Square, PA
Anderson's Wheelchair
Elmira, NY
St. Louis, MO
312/423-0081
215/353-7014
Rochester, MN
607/734-1626
314/968-1616
The Medical Store
Tom's Convalescent Aids
507/288-0113
Environmental Mobility
800/223-3660
Plano, TX
Appleton, WI
Bach Medical
Madison, WI
Home Medical Equipment
214/423-7525
414/733-4552
Springfield, MO
608/244-2034
Company
The Medical Store Ltd.
United Medical Mart
417/883-2661
Equipos Pro-Convelchia
Largo, FL
S. Burlington, VT
Florissant, MO
Badger Medical
Rio Piedras, Puerto Rico
813/584-8605
802/864-0908
314/838-3100
Madison, WI
809/751-6800
Home Medical Equipment
Nascott Rehab Services
608/256-1801
University Orthopedics
Faison Medical
Supply
Washington, D.C.
Urbana, IL
Bay Medical Homecare
Van Brocklin Medical
St. Petersburg, FL
202/832-1900
217/344-0446
Richmond, CA
Davis, CA
813/545-0626
National Medical Homecare
415/232-4867
Western Rehab Systems
415/835-3639
Home Medical Supply
(Homedco)
Vallejo, CA
Berwind Medical
Flint Medical (Comfort Care)
Phoenix, AZ
Folcroft, PA
707/644-4889
Philadelphia, PA
Flint, MI
602/263-1129
215/586-2100
Winchester Home Healthcare
215/457-5800
313/733-6250
Homex Healthcare Corporation
National Wheelchairs
Charlotte, NC
Binson's Hospital Supply
Florida Surgical Supply
Arlington Heights, IL
Little Rock, AR
704/332-1217
Centerline, MI
Sarasota, FL
312/364-1620
501/664-1404
313/755-2300
813/366-2343
Hudson Home Health
Wright and Filippis
North Penn Medical
Rochester, MI
Brownfield, Inc.
Functional Rehab, Inc.
Newington, CT
Lansdale, PA
313/853-1888
Boise, ID
Pewaukee, WI
203/667-4871
215/855-3545
208/342-4659
414/691-4587
Indiana Home Health
Young's Medical Equipment
Northside Surgical Supply
Easton, PA
Indianapolis, IN
Rochester, NY
215/258-1585
317/923-4663
716/544-9060
For more information, please contact the Hot Wheels dealer nearest you.
Everest
Jennings
R
3233 E. Mission Oaks Blvd. Camarillo, California 93010
EXCEPTIONAL
EDITORS DESK
PARENT
S
Editor in Chief: Maxwell J. Schleifer, Ph.D.,
Professor of Psychology, University of Mass.
ocial experiences are valuable opportunities that enable us to learn
Editor: Stanley D. Klein, Ph.D., Professor of
about other people. They are the basics of developing and maintain-
Psychology, New England College of Optometry
Assistant Editors: Robert K. Hermansen,
ing mutually satisfactory relationships throughout life.
Sarah J. Niemczycki
Editorial Intern: Bridget Flynn
This issue, we focus on ways to develop social skills for the entire
Editorial Typist: Amy Gluckman
family - Putting the FUN Back by Shari Weitzner is full of helpful
Design Consultant: Andrea Golden
Mechanical Artist: Al Bertelsen
suggestions on how parents of a child with a disability can socialize;
Business: Ann E. Foote, Mgr., Fredrica L. Strumpf,
A Day with "B," photo essay for this month, features Bjorn
Janice Bielot, Johnette R. Hill
Assistant Publisher: David Jones
Kirkland, a boy mainstreamed in the Haverhill, Mass. public school
Book Editor: Cory Moore
system; Social Integration: A Parental Challenge, Brad and Stephanie
Allen's article, describes how to develop your own techniques for
ADVERTISING DEPARTMENT:
managing your child in social situations; and But Not Enough To Tell
National Sales Offices: Edie Shack, Dir.
1170 Commonwealth Ave., Third Floor
The Truth by Helen Stavros and Richard Boyd, detailing how to serve
Boston, Mass. 02134, (617) 730-5800
the needs of the non-disabled sibling.
West Coast Sales Offices: Sandi Escalle,
Pattis 3M, 1800 N. Highland Ave., Suite 717
Finally, following last issue's theme of summer camp programs,
Hollywood, Calif. 90028 (213) 462-2700
Ann Shannon provides an useful alternative to camp in the article,
EDITORIAL OFFICES:
Peer Companion.
1170 Commonwealth Ave., Third Floor
Boston, Mass. 02134, (617) 730-5800
MAKING YOUR HOME WORK: A NEW DEPARTMENT
SUBSCRIPTIONS: EXCEPTIONAL PARENT,
P.O. Box 3000, Dept.. EP, Denville, N.J. 07834.
Most readers are concerned about the day-to-day life of children
who have, and are likely to continue to have, some difficulties getting
around by themselves. For some youngsters, their disability impairs
Senator Gerard
their capacity to walk unassisted. In addition, many youngsters have
D'Amico Award
1986
For an outstanding contribution
MEDIA AWARD
disabilities that interfere with eye-hand coordination or with the
to Early Childhood Intervention
by The Mass
THE PRESIDENT'S COMMITTEE ON
Early Intervention Consortium
EMPLOYMENT OF THE HANDICAPPED
control of their arms and hands. As a result, they have difficulties
1984
eating, washing, dressing and participating in other everyday
activities without the help of another person.
This month's installment, Getting In & Out of Your Home,
describes how parents can utilize specific adaptive aids and other
EXCEPTIONAL PARENT (ISSN 0046-9157) is published 8
kinds of equipment to help children get around and enjoy life as much
times a year (Jan, Mar, Apr, May, July, Sept, Oct, Nov) for $16
per year to individuals; $24 per year to organizations, libraries,
as possible while, at the same time, reducing a child's dependence on
schools and agencies by Psy-Ed Corporation, 1170
Commonwealth Ave., Third Floor, Boston, Mass. 02134.
his or her parents' physical endurance. This issue will feature
Canadian subscribers: if paying in Canadian currency please
adaptive aids designed to improve access to the family home for the
add 30%. Additional postage: Canada, Latin America, and
other foreign countries, $6 per year. Mail to EXCEPTIONAL
person with the disability. Future issues will move from room to room
PARENT, P.O. Box 3000, Dept. EP, Denville, N.J. 07834.
Second-class postage paid at Boston, Mass. (USPS 557-810)
within the home, as well as include information on travelling.
Microfilms of all issues are available from University
Some parents may be able to construct adaptive equipment or
Microfilms, 300 North Zeeb Road, Ann Arbor, Mich. 48106.
install it on their own. This series of articles will identify the issues
Libraries: No claims accepted prior to 45 days after issue
mailing date (first day of cover month). No claims honored 90
and illustrate commercially available solutions. Parents interested in
days past mailing date. Back issues requested thereafter incur
exploring making products themselves can check with the clinical
a charge of $7 each and depend upon availability.
team and advocacy organizations for plans, suggestions, and, in some
Postmaster: Please send address change to EXCEPTIONAL
PARENT, P.O. Box 3000, Dept. EP, Denville, N.J. 07834.
areas, specially trained architects and contractors.
EXCEPTIONAL PARENT® "Exceptional Parent" is a registered
trademark of the Psy-Ed Corporation. Copyright © 1989 by
Psy-Ed Corporation. All Rights reserved. Nothing may be
MAY/JUNE ISSUE
reprinted in whole or in part without written permission from
the publisher. Authorization to photocopy items for internal or
personal use, or the internal or personal use of specific
clients, is granted by Psy-Ed Corporation for users registered
We are pleased to report that we have heard from the White
with the Copyright Clearance Center (CCC) Transactional
Reporting Service, provided that the base fee of $1 per copy,
House that President George Bush will be responding to our Open
plus $.50 per page is paid directly to CCC, 27 Congress St.,
Letter in the March issue in time for our May/June issue. Our May
Salem, Mass. 01970. For the organizations that have been
granted a photocopy license by CCC, a separate system of
issue will also include the first report of the findings of the respite care
payment has been arranged. The fee code for users of the
Transactional Reporting Services is: 0046 9157/89/$1.00+.50.
survey that was distributed with our October issue.
Editorial Information: Contact Sarah Niemczycki,
EXCEPTIONAL PARENT, 1170 Commonwealth Ave., Third
Floor, Boston, Mass. 02134. Return postage must accompany
all manuscripts, drawings and photographs submitted if they
are to be returned. Publisher assumes no responsibility for
unsolicited material.
2 EXCEPTIONAL PARENT
APRIL 1989
EXCEPTIONAL
®
Parenting your child
PARENT®
with a disability
Social Skills
Volume 19, Number 3
APRIL 1989
FEATURES
14
Putting The Fun
18 Photo Essay:
20
Social Integration:
26
Making Your
Back: The Right To A
A Day with "B"
A Parental Challenge
Home Work: Getting
"Normal" Life
Photos by Cheryl Cullen
by Brad & Stephanie Allen
In & Out of Your
by Shari Weitzner
A visit to a mainstreamed
Suggestions for managing
classroom.
Home: Ramps, Elevators,
Learning how to socialize.
your child in social situations.
Lifts and Doorways
36
ACLD Position
38
But Not Enough
42
Peer Companion:
Paper:
To Tell The Truth
An Alternative
Eligibility for Services for
by Helen Stavros and
To Camp
Persons With Specific
Richard Boyd
by Ann Shannon
Learning Disabilities
Helpful guidelines for
serving the needs of siblings.
DEPARTMENTS
4
Family Forum
13
Editorial
22 Resource Section
48 What's
Letters to the Editors
Social Skills: Coming of Age
Augmentive/Alternative
Parents Search
Happening
Communication Resources
Parents Respond
52
From the
56
Family Life
65
Family Album
68
Fun Stuff
Bookshelf
"This has been a
My Fishing Trip
by D.J. Orr
Ordinary Families,
miserable fall."
Stride for Stride
Family Learning
Special Children;
Problems of moving to
Opportunities: Hobbies,
Living with Difference
a new community.
Crafts and Games
Cover photo: Steve Fogg reads to Bjorn Kirkland in English class. Bjorn's story is featured on page 18. Photo by Cheryl Cullen.
EXCEPTIONAL PARENT
APRIL 1989
3
FAMILY FORUM
many deaf persons and to educators
LETTERS TO THE EDITORS
in the field of deafness, this is the
least restrictive environment. Main-
We welcome all contributions to
however inadequate they may be.
streaming, on the other hand, limits
Letters to the Editors. Please send your
Our jobs as professionals and parents
deaf students to a narrow world of
questions, ideas and responses to:
is to continue to improve our
restricted communication and
Letters to the Editors,
practices and to renew our vision to
restricted interactions.
EXCEPTIONAL PARENT,
reach that goal.
1170 Commonwealth Ave., 3rd Floor,
Ginny Duncan
Boston, Mass. 02134.
Parnel Wickham-Searl
Harrisburg, Pa.
Coordinator, Special Education
MAINSTREAMING
Dowling College
I am a parent of a six-and-a-
Long Island, N.Y.
half-year-old child with Down
The letter from Ronee Groff
syndrome. Matthew has a twin
(January/February 1989, Letters to
I agree with the letter by Ronee
brother, Michael, and a younger
the Editors) serves as a reminder of
Groff regarding her concerns about
brother, Mark. As a family, we have
the distance we still have to go to
mainstreaming. For many years, my
strived towards normalizing our
achieve full integration of children
interest has been with deaf children,
lives to the maximum. Unfortunate-
with disabilities in our public
both as a speech-language path-
ly, we reside in a community that
schools. We tend to congratulate
ologist and as a counselor.
believes in segregation instead of
ourselves on the accomplishments
I have witnessed, in many
integration.
of special education since the imple-
cases, the tremendous isolation that
Matthew is currently enrolled
mentation of P.L. 94-142 in 1975, but
deaf students experience when
in our own community school in a
Groff jolts us back to reality. Clearly
placed in mainstreamed settings.
special education class. He rides to
Groff believes her child is not
Educational isolation occurs when
school on the bus with his brother
reaping the benefits of those
teachers are not adequately prepared
and is allowed to mainstream during
accomplishments.
for the placement of a deaf student or
recess and lunch.
As the author suggests, our
when ancillary personnel (speech-
colleges and universities do need to
language pathologists, counselors,
EDITORIAL ADVISORY BOARD
take a more responsible position in
psychologists) know little about deaf
HAROLD S. BARBOUR, ED.D., President Emeritus, The Woods
training teachers to enable students
culture or sign language.
Schools, Langhorne, PA
T. BERRY BRAZELTON, M.D., Clincal
Professor of Pediatrics, Harvard Medical School
FRANCES P.
to succeed both academically and
My other, and perhaps greater
CONNER, ED.D., Professor Emeritus, Special Education,
socially in mainstream education.
concern, is the social isolation faced
Columbia University
ALLEN C. CROCKER, M.D., Director,
Developmental Evaluation Clinic, Children's Hospital, Boston
We in teacher preparation programs
by these students. They cannot, in
ELI FACTOR, D.M.D., President, Wheelchair Motorcycle
tend to overlook or simplify the very
many cases, communicate easily
Association, Brockton, MA
MURRAY FEINGOLD, M.D.,
Physician-in-Chief, National Birth Defects Center, Kennedy
real problems that exist in the
with peers, cannot participate in
Memorial Hospital, Brighton, MA.
SANDRA B. FLEISHMAN,
schools' mainstreaming efforts.
after-school activities, cannot deve-
Parent, Administrative Assistant, Pelham Public Schools,
Pelham, N.Y.
BRUCE M. GANS, M.D., Associate Professor of
However, even though prob-
lop those relationships that are so
Rehabilitation Medicine, Tufts University School of Medicine,
lems continue, and teachers are not
important in the development of
Boston SOL GORDON, Ph.D., Professor Emeritus, Child and
Family Studies, Syracuse University
HERBERT J. GROSSMAN,
prepared as well as they should be,
positive self-esteem. Even with an
M.D., Professor, Pediatrics, Neurology, and Psychiatry,
there is no evidence that we should
interpreter, relationships are difficult
University of Michigan Medical School, Ann Arbor, MI
GOODWIN D. KATZEN, Executive Director, Rockland County
abandon the goal of integration. We
because of the adult "middle-man."
Center for the Physically Handicapped, New City, N.Y.
EDWIN
know for sure that all children learn
Deafness is unique, with its
W. MARTIN, Ph. D., President, Human Resources Center,
Albertson, N.Y.
JEAN B. McGREW, Ph.D., Superintendent,
academically and socially in main-
own language and culture. Deaf
Glenbrook School District #225, Glenview, IL
EDWARD
streamed settings, and that main-
persons are proud to be deaf and
NEWMAN, Ph.D., Director, Temple University Developmental
Disabilities Center, Philadelphia
BETTY PENDLER, M.S.,
streaming, when done well, is
are proud of their heritage. Deaf
Member, New York State Developmental Disabilities Planning
preferable to segregated education
children will grow up to be deaf
Council HARVEY PRESSMAN, President, Corporation for
Opportunity Expansion, Newton, MA JEROME ROSNER, O.D.,
for many different reasons.
adults. They need a sense of their
Professor of Pediatric Optometry, University of Houston
We need to keep in mind what
past and a vision of the future -
HARILYN ROUSSO, A.C.S.W., Director, Disabilities Unlimited,
New York, N.Y.
BARBARA J. SEABURY, M.A., Director,
we are striving for: individual
through studies in deaf heritage
Activities Services, Rhode Island Hospital, Providence
achievements for our own children
and contact with deaf peers and
HOWARD SHANE, Ph.D., Director, Communications
Enhancement Clinic, Children's Hospital, Boston
SUSAN
K.
and full social integration of all
deaf adult role models.
SHUSTER, Ph.D., Professor of Special Education, Indiana
persons with disabilities.
For years, center-based pro-
University at Bloomington
CAROL TINGEY, Ph.D., Parent,
Associate Professor, Developmental Center for Handicapped
Mainstreaming remains a goal
grams for the deaf have provided a
Persons, Utah State University, Logan, Utah
HAROLD
that propels our educational systems
vast range of educational and social
TURNER, D.D.S., Associate Professor, Retired, School of
Graduate Dentistry, Boston University
IRVING KENNETH
and teacher preparation programs,
opportunities to deaf students. To
ZOLA, Ph.D., Professor and Chairman, Dept. of Sociology,
Brandeis University, Waltham, MA.
4
EXCEPTIONAL PARENT
APRIL 1989
Introducing the
revolutionary new Dynamic Posture Chair
from Ortho-Kinetics.
While better postural alignment and control in
The economically-priced Dynamic Posture Chair
involved children is often achieved in therapy, it
is designed for children with varying degrees and
has always been difficult to carry this control over
types of involvement, and it's easily adjustable
into everyday activities.
from child to child. Which makes it ideal for home
Until now. Now therapists have a valuable
or school applications.
new ally to enhance the carryover of physical,
The Dynamic Posture Chair. It's making health
occupational and speech therapy goals into func-
care professionals everywhere sit up and take notice.
tional activity. The Dynamic Posture Chair
For more information, call 1-800-558-7786.
from Ortho-Kinetics.
In Wisconsin, 1-800-522-0992.
This unique new adaptive chair employs the same
concepts therapists use in treatment to obtain active
trunk and lower body control. By elevating the
pelvis higher than the knees in sitting, and tilting
it forward 5 to 10 degrees, the trunk is required to
Ortho-Kinetics, Inc.
maintain a more upright posture. And weight bear-
ing is improved by bringing the center of gravity
P.O. Box 1647, Waukesha, WI 53187
Phone: 1-800-558-7786
forward and elevating the hips.
(In Wisconsin, 1-800-522-0992)
© 1988, Ortho-Kinetics, Inc.
FAMILY FORUM
SPINAL CORD TUMOR
fingers. We are contemplating
beautiful attitude and personality.
tendon transfers for his useless
We have learned a lot from him.
Our son was born with an
thumbs.
However, the struggle is on-
extensive lipoma (fatty tumor) in his
His balance is fair and he has to
going. We know of no one else
spinal cord. Matt is now seven years
wear a foot brace to him from toe-
having this condition and so have
old and had half of the tumor
walking on his right foot. He also
been on our own. We feel like trail-
removed when he was nine months
wears a body jacket to hopefully
blazers and pray that we are doing
old.
prevent, or at least slow down,
the right things for Matt so that he
It has affected much of his
progressive kyphosis, a bending over
can grow to be a "healthy" and fine
body, specifically the T-2 and T-3 area
of the spine.
adult. Please correspond with us if
of nerve function. This includes his
Matt has come a long way in
you have any information to share
lack of shoulder mass, contractures
dealing with his disability. He is a
about spinal cord tumors!
of his elbows, weak wrists and
smart and sensitive child with a
C.W.
New York
USHER'S SYNDROME
Just glide inside, fasten your
Our five-and-a-half-year-old
seat belt
and go.
son has a profound hearing loss and
very mild cerebral palsy. He uses
sign language to communicate and
does very well with it. We are very
pleased with his progress.
Recently, he has been diag-
KneelKar lowers itself to near ground
level with just the push of a button.
nosed as having Usher's syndrome
A lightweight ramp folds out allowing the
- a form of Retinitis pigmentosa.
Amigo or wheelchair user to glide in. An
We have been able to find very little
easy to use tie down system attaches to
information on this. We know it is a
the Amigo or wheelchair at all the corners
genetic disorder that causes hearing
and a seat belt goes securely across the
loss and degeneration of the retina,
passenger. When the passenger is secure
the KneelKar pops back to driving position
which eventually leads to tunnel
by pushing the "UP" button
vision. It is also quite rare.
We would love to hear from
KneelKar is the master of keeping
parents of children with Usher's
things simple.
syndrome or from anyone who
Its interior combines convenience and
would have information to share
comfort, while offering an exceptional view.
with us.
KneelKar is made from either a Plymouth
or Dodge mini van. They are designed to
fit the customers needs. Each mini van is
D.C. & C.C.
built to please each customer. KneelKar
Alberta, Canada
helps everyone get there comfortably and
conveniently.
Editors' Note: A reference book on
KneelKar is roomy enough to provide
Usher's syndrome, Usher's Syndrome:
ample space for the wheelchair user and
What it is, How to Cope and How to
up to 5 more people. The mini van can be
Help, is available from Charles C.
modified to be driven by the selfdriver or
Thomas, Publisher, 2600 South First
carry the wheelchair user as a passenger.
St., Springfield, Ill. 62794-9265,
All KneelKar conversions benefit from a Limited Warranty of seven
(217) 789-8980, for $24.75, plus $3
years or 70,000 miles, whichever comes first.
postage and handling.
AAR
Ask for a demonstration or information:
This book was sponsored and
MEDNET Inc.
partially supported by the Center on
name
544-546 WaWeeNork Dr.
address
Deafness, Western Maryland College,
Battle Creek, MI 49016-0948
city
state
zip
Westminster, Md. 21157. The center
Telephone: 616/962-3800
telephone ( )
welcomes correspondence regarding
Usher's syndrome.
8
EXCEPTIONAL PARENT
APRIL 1989
Continuing
The Chrysler Motors
Physically-Challenged
Assistance Program
(P-CAP)
Customer Benefits:
Cash allowance in addition to existing
corporate incentive programs.
Up to a maximum of $50000 on adaptive
driving aids installed in 1988 or 1989 cars
and trucks.*
Physically-Challenged Resource Center
information network.
*
Fleet rebates are not eligible to participate.
For more information, consult your dealer
representative or contact the Chrysler Motors
Physically-Challenged Resource Center at
1-800-255-9877.
CHRYSLER
MOTORS
FAMILY FORUM
NON-VERBAL CHILDREN
When he does, he will require much
planning bathroom and kitchen
bracing.
modifications and selecting types of
I am the mother of a six-year-
Therefore, we are requesting
flooring material most suitable for
old child with a developmental
information on architecturally
wheelchairs.
delay. She learned to walk at age
modifying a home for him. Since
We would like to hear from
five. She is almost completely non-
Gavin's birth, we have moved about
architects, contractors, landscape
verbal. She uses some signs, but
every 18 to 24 months, and he has
architects, manufacturers and
because of poor fine motor skills,
always been small for his age. Stairs
suppliers, etc. Also, we'd like to
her signs are difficult to distinguish.
and flooring types have not been a
correspond with other families to
She is a bright, social child and
major obstacle in our homes.
share experiences, ideas and
is able to understand much more
However, our next move will
suggestions with us since we are so
than she can communicate. I am
be permanent, which means that we
uninformed on this subject.
interested in learning about any
need to place top priority on Gavin's
We would like to see an issue of
studies, research and/or programs
future needs for mobility, safety,
EP devoted to this subject.
involving non-verbal children.
access and independence when
Thank you for being such a
purchasing a home for our family.
wonderfully supportive magazine.
T.V.
We probably will be relocating
Washington
in the Denver, Colo., area, where
T.B.
most housing is multilevel with
Montana
ARCHITECTURAL MODIFICATION
stairs and limited access to all areas
of the home - both potentially
Editors' Note: A new series on adapting
Our six year old son, Gavin, has
dangerous conditions.
your home begins this month, see page
spina bifida at the T-12 level, some
So we need information on
26 for the first installment of Making
fine motor skill deficits and upper
building ramps, installing lifts,
Your Home Work.
trunk instability. He uses a wheel-
constructing sloping walkways and
chair for most of his mobility, but we
accessing the outside of a house,
hope to see him walk someday.
widening doorways, removing stairs,
KEEPING HEARING AIDS ON
Does anyone have a suggestion
on how to keep hearing aids on a
Day, Weekend & Weeklong Trips for
very active 16-month-old baby. Born
People with Developmental Disabilities
three months premature, my son,
Christopher, was not expected to
live. His twin brother had no prob-
lems except low birth-weight.
Christopher has broncho-
pulmonary dysplasia and had a
severe intraventricular hemorrhage.
As he developed, the neurologist
diag-nosed cerebral palsy, and I was
told he would never walk without
assistance.
Now, four months later, he is
walking, climbing and even running
if he's in a hurry. His hearing loss,
Founded in 1979, Sprout, Inc. offers trips to individual partici-
however, is substantial, and he needs
pants. Each group consists of 10 participants (high - moderate
to wear the hearing aids at all times.
functioning level) and 3 Sprout leaders. Through our Custom
While his brother, Travis, is
Design Program we also plan and implement trips
babbling and saying words, I have
specifically for organized groups.
yet to have Christopher say "ma-
ma." I've tried everything to keep
Sprout, inc.
the aids on, but he pulls them right
back out.
204 W. 20th Street
sprout
New York, NY 10011
C.B.
(212) 431-1265
Arizona
10
EXCEPTIONAL PARENT
APRIL 1989
'Access America'
'The African Queen'
'I am a Mime'
'The Absent-Minded Professor'
'Maps and Landmarks'
'Alice in Wonderland'
'Basic Bread Making'
'Witness'
'Adapting to Parenthood'
'The Beast Master'
'Lasers: An Introduction'
'Raising Arizona'
'Jagged Edge'
'No Mercy'
'You and the Law'
'Encounter with Disaster'
'An American Tail'
'Time Changes the Land'
'Romeo and Juliet'
'Ferris Bueller's Day Off'
'Enemy Mine'
'Purple Rain'
'Star Trek IV: The Voyage Home'
'Blind Date'
'Children of a Lesser God'
'Extreme Prejudice' 'Ballet with Edward Villella'
'The Color of Money'
'Back to the Future'
'The Miracle Worker'
'Gardens of Stone'
'Chaucer's England'
'Electricity'
'Harry and Son'
'Sesame Street: Follow that Bird'
SEE WHAT YOU'VE
BEEN MISSING!
Take a look at our free-loan captioned programs - over 3,500 educational and
theatrical titles. Your only cost is return postage on 16mm films - return
postage on VHS videocassettes is pre-paid by Modern.
Operated on a free-rental basis, this
For more information, write or call:
captioned film/video program is made
available by the U.S. Department of
NAME
Education and distributed by Modern
Talking Picture Service. Paul New-
SCHOOL-ORGANIZATION
man, William Hurt, Glenn Close - even
ADDRESS
Big Bird - are only a few of the stars who
rate your attention. For children, there's
CITY
STATE
ZIP
"Cinderella," "An American Tail," "Lady
and the Tramp" Various age groups
Check Program of Interest:
can tune into titles such as "Children of
EDUCATIONAL
THEATRICAL
Users of educational titles should have a
a Lesser God," "Crocodile Dundee" and
class or educational setting that contains
RETURN COMPLETED FORM TO:
"Platoon." What's more, our educational
at least one hearing-impaired person.
CAPTIONED FILMS/VIDEOS
titles range from anthropology to
FOR THE DEAF
Users of theatrical titles should have a
zoology! Order more information today
general audience setting that contains
Modern Talking Picture Service
and see what you've been missing!!
5000 Park Street North
some hearing-impaired persons.
St. Petersburg, FL 33709
(813) 541-7571
(800) 237-6213 (voice/TTY)
EXP/APR 89
FAMILY FORUM
PARENTS RESPOND
physicians, therapists and others
treating children with these problems
is the American Cleft Palate/Cranio-
The following letters are in
out a newsletter every few months.
facial Foundation located at 1218
response to E.A.F.'s request for informa-
I think they could be a source of
Grandview Avenue, Pittsburgh, Pa.,
tion on Goldenhar syndrome (Parents
support for you, and perhaps head
15211, (412) 481-1376.
Search, November/December 1988).
you in some appropriate directions.
The American Cleft Palate/
I would be interested in finding
Craniofacial Foundation has infor-
We have a four year old son
out more about Matthew. Kevin has
mation available on hemifacial
with hemifacial microsomia. Our
accepted his physical disability very
microsomia and also maintains a list
Kevin has done very well, and will
well - he says his ear is "turned
for the National Cleft Palate Parents
have ear reconstruction surgery
over" and that we will "get it fixed"
Association members.
beginning at about age six, as well as
when he is older.
Additional information dealing
jaw surgery when he is in his teens.
with hemifacial microsomia can be
His hearing is very good, even
S.R.
obtained from the National Cranio-
though he has no hearing, other than
Texas
facial Foundation in Dallas, Texas.
conduction, in his affected ear.
There is also information available
We have been in touch with the
I read the article regarding
through the National Organization
the National Craniofacial Founda-
hemifacial microsomia - Goldenhar
for Rare Disorders (NORD), P.O. Box
tion, 3100 Carlisle St., Suite 215,
syndrome in your recent issue of
8923, New Fairfield, Conn. 06812.
Dallas, Texas 7520, since Kevin was
EXCEPTIONAL PARENT. There are
two weeks old, and they have been a
numerous resources available to
Marilyn A. Cohen
source of wonderful support and
families of children with Goldenhar
Regional Cleft Palate Program
information.
syndrome and other oral-facial and
Cooper Hospital/
They have a toll-free telephone
craniofacial disabilities. The national
University Medical Center
number, 1-800-535-3643, and also put
professional organization for
Camden, N.J.
HELP YOUR CHILD TOWARDS
BETTER COMMUNICATION
INTERACTION, EDUCATION, AND PLAY
The new Minspeak™ Application Program from Prentke Romich
Working in Augmentative and Alternative Communication affords many challenges.
One of the greatest challenges is finding enough time - time to select vocabulary,
time to organize and code it, time to store it into the device. Only after that is done
can you address your therapy goals.
Interaction, Education, and Play gives you that time. A starter set of vocabulary has already been selected, organized and coded
by Joan Bruno, Ph.D., CCC-SLP, a recognized clinical expert with this age group. And it comes on a computer disk, ready to load
into a Touch Talker or Light Talker*.
Loading requires a Memory Transfer Interface
Interaction, Education, and Play gives your child the opportunity:
TO
Vocabulary and activities range from
TO
Stories, songs, and nursery rhymes teach
DEVELOP:
preschool to early academic level. A set
PLAY:
children to communicate through play.
of new icons targets children's individual
needs and interests.
TO
Interactive dialogues and a vocabulary
TO
A flexible vocabulary promotes freedom of
INITIATE:
of 100 different sentences, representing
CREATE:
expression. A core vocabulary of 500 words,
a range of pragmatic functions, facilitate
including articles, pronouns, prepositions,
the development of interaction skills.
and different verb tenses, enables nonspell-
ing children to generate new messages.
TO
Vocabulary facilitates active participation
LEARN:
in a variety of classroom activities.
TO
Expressing feelings promotes social-
EXPRESS:
emotional well-being. Icons depict a
variety of emotions.
Interaction, Education, and Play gives you time - time to
PRC
Prentke Romich Company
help your child learn the program, to acquire new language skills,
to be better communicators. Interaction, Education, and Play
1022 Heyl Road . Wooster, Ohio 44691
helps your child toward better communication.
(216) 262-1984 or 1-800-642-8255
For further information, please contact your
FAX (216) 263-4829
local PRC consultant, or contact us directly.
WP-33D
12
EXCEPTIONAL PARENT
APRIL 1989
EDITORIAL
SOCIAL SKILLS:
Coming of Age
I
n his valedictory address on the occasion of his
society's overemphasis on appearance and physical,
graduation from a suburban high school noted for
athletic skills. In reference to appearance, a recent letter
its high academic standards, a young man with a
from a reader objected to advertisements in our
severe hearing impairment expressed, via sign language,
magazine illustrated by children who are not disabled,
that his high school years had been lonely ones for
as seen by the letter writer. The reader suggested that
himself, and for other students with disabilities, because
such illustrations demonstrated that society does not like
they had been excluded from the after-school life of their
the appearance of children with disabilities.
classmates.
How does a child with a disability look? On our
Today, as more and more youngsters with
covers, we have tried to illustrate that children with
disabilities are being mainstreamed in educational
disabilities can be happy participants in the joys of
settings, they are learning to make friends. Younger
growing up. At the same time, we have acknowledged
children are learning the basics of taking turns and
again and again in the pages of the magazine the
sharing the attention of others, learning to use the
importance of helping children learn to wash, to dress,
telephone, and enjoying the giggly play and birthday
and to "look" appropriate in order to facilitate social
parties of their young friends. Older children are
acceptability. At times, such efforts are criticized as
learning to share and trade collectibles, to visit at a
trying to cover up and conform to the cultural
friend's home, to stay over with a friend and stay up
expectations generated by Hollywood standards of
too late, or just to hang around and talk or play. And
attractiveness.
teenagers are learning about the complexities of the
In our efforts to "discover" children and adults for
adolescent social scene.
our covers, we have been thrilled by the excitement of
parents and children who want to be seen as they are.
These parents and children love each other regardless of
Some children with disabilities have
external appearances, intellectual skills, or athletic
prowess - these are powerful messages for all of us.
an especially difficult time becoming
Positive interactions between children with
involved in opportunities to learn social
disabilities and other children are the foundation of
skills when other children mirror our
inclusion in a greater society. Many events have
society's overemphasis on appearance
contributed to changing the expectations of children and
adults in their interactions with children with
and physical, athletic skills.
disabilities. The greatest change has come from personal
acquaintances.
As larger and larger numbers of children with
disabilities have entered our schools and our
Social experiences are valuable opportunities that
communities, and as adults with disabilities have begun
enable all of us to learn about other people. They are the
to play a more visible role in community life, people
basics of developing and maintaining mutually
without disabilities have discovered that those people,
satisfactory relationships with other people throughout
young or old, with disabilities, are people with attitudes
life. Until recently, learning specific social skills has been
and skills and wishes and desires like everyone else.
left to the informal learning process of the playground,
In that sense we have all begun to change the
the neighborhood, and the family. Recently, we have
attitudes of society. In that process, people with
begun to introduce the teaching and learning of social
disabilities — children and adults - have become more
skills in classrooms, as we have understood how
attractive.
necessary they are for coping with the changing
challenges of growing up from pre-school through high
school.
Some children with disabilities have an especially
-M.J.S. & S.D.K.-
difficult time becoming involved in opportunities to
learn social skills when other children mirror our
EXCEPTIONAL PARENT
APRIL 1989 13
Putting
the
FUN
Back
A child does
The Right To A "Normal" Life
not take away
your right for
Recently, I was asked to give a speech to parents of very young children with
happiness and
disabilities on the topic "How to put the fun back in your life after having a child
independence.
with a disability."
I was struck by the complexity of the subject. So many of my friends and
neighbors are "stressed out" from jobs, family life and daily living without the
day-to-day emotional roller coaster of living with a child with a chronic problem.
How can we then handle this added burden in addition to all the other demands in
our "push-push" lives?
I looked the subject up in several
with other parents.
sources and obtained some valuable infor-
Let me give you a little more
mation. I was able to document the reality
information. I've been married for 19 years
of the serious, long-term
to the same man and have two children.
effects of the burden we carry,
My 16-year-old daughter, Sally, is mentally
such as the increased rates of
retarded. She was born with several
divorce and depression in our
medical problems including a heart defect.
families.
Her first year of life was rough with several
Although this informa-
hospitalizations and medical crises. Sally
tion is important, mostly I
has a severe speech impediment, making
want to speak from the heart,
her very hard to understand. My second
because, although I am a
daughter, Jill, is 14 and perfectly fine.
professional in the special
education field, my real expertise and un-
EVERYTHING CHANGED
derstanding (and I'm a snob about it) comes
from being there, from having a child with a
The first year of Sally's life is still
by
disability. I consider this to be a gift that my
vivid to me. It was a frantic time. I was
Shari Weitzner
daughter has provided me with - it gives
depressed, anxious, stressed, uncommu-
me an advantage when communicating
nicative, despondent, panicky and totally
14
EXCEPTIONAL PARENT
APRIL 1989
206
====
Shari and her husband,
Jeff, relax after a race.
absorbed in my new baby. Everything
comment of a marriage counselor we
changed. My husband and I were no longer
sought for help when Sally was three and
a young, healthy, carefree couple anticipat-
Jill was one. After unburdening myself to
ing a normal family life. We began the
him and explaining my unhappy emotional
process of grieving.
status, he blithely commented that my
Basically, my
problems bore no
entire personality
relation to Sally. He
changed. My
said I was "copping
husband's did too,
out" in suggesting
but to a lesser extent
that she could
since he went off to
produce any stress
work every day. I
in my life!!!
stayed home
Through the
dealing with the
years, my behavior
definite added
with Sally has
demands of a child
revolved around a
with a disability.
couple of themes, at
My husband's
first on more of an
upsets were certain-
unconscious level,
ly a reaction to my
but now more
depression. The
obvious to me.
marriage became
quite strained. Sally
I COULD MAKE
became the focus of
HER NORMAL
my life; essentially,
she controlled my
First, I
life.
thought that if I
I'll never
worked hard
forget, as our
enough with her I
Shari Weitzner with her
marriage continued
could make her
two daughters, Sally (left)
to be stressed, the
normal. And when
and Jill.
EXCEPTIONAL PARENT
APRIL 1989
15
INDEPENDENCE
Taking a break will affect you in a positive way.
one is focused in this one direction, it's pretty hard to
relax and enjoy life. My frantic interventions with her
The I*TEC Independent Transport System is a ceil-
were constant when she was younger and only with
ing mounted or free standing electromechanical system
which provides horizontal and vertical mobility for the
strong self-discipline have they decreased recently.
severely disabled. I*TEC systems offer increased
After all, here I was a special education teacher. If I
independence at home.
could teach other children, I could certainly teach
Dressing, bathing, rising from bed, transferring
Sally.
to a wheelchair; all are easily possible for quadraplegics
My behavior with her and my other daughter
without the assistance of round-the-clock attendants.
has been different. I would always engage Sally in
For Information Call
some "important" educational game, something
714/898-9005 CA
800/622-ITEC US
therapeutic. Neither she nor I were happy. I often
TEC
Patented
Dealer Inquiries
worked with her to the point where I would be in
&
5482 Business Drive, Unit C
Welcomed.
Huntington Beach, CA 92649 USA
tears, and she would be on the verge of a tantrum. I
was so intense that my husband would have to order
me to stop working with her.
SACRIFICING MYSELF
The other component of my behavior was the
idea that if I sacrificed and worked hard enough with
Sally, I could rid myself of the guilt I felt for in some
way causing her problems. Psychiatrists would have a
lot to say about this. Guilt is powerful. It's hard to
enjoy life while you are wallowing in it.
Guilt is non-productive, as is blaming yourself,
your husband, your doctor, the food you ate while
pregnant, or anything or anyone else for your child's
problem. While I was engaging in this obsessive-type
behavior I had little time for other people, other
interests or for myself. I believed that no one could
help Sally as well as I could and that no one else knew
how important these constant interventions were to
her future.
TRUTH HURTS AND HEALS
Rx : 365 Independence Days Every Year
Your disabled child deserves physical and social inde-
This all brings me to the hardest part --
pendence at home, at school and in the community. Let our
acceptance of the truth. It hurts, and we can all arrive
expert rehabilitation staff work with you and your child to
prepare an effective prescription for her future.
at this acceptance only gradually over time. When we
Please write or call today for more information.
are able to come to grips with our children's problems,
to face them squarely and rationally, then we can
Kluge Children's Rehabilitation Center
begin to find peace.
Serving Special Children and Adolescents from Birth to 21 Years
This is the key. You cannot do it all, change it all
University of Virginia Children's Medical Center
or fix it all. To help your special child, you must take
2270 Ivy Road
Charlottesville, VA 22901
804-924-8184
16 EXCEPTIONAL PARENT
APRIL 1989
care of yourself as well as the needs or your husband
or wife and other family members.
Give your child safety,
GETTING OUT BY YOURSELF
independence and
So begin by getting out by yourself or with your
proper support!
spouse. If this causes apprehension, start leaving for
very short periods at first. Where should you go?
Anywhere - movies, a walk, dinner - but go by
The toilet supports designed for:
Durability
Convenience
yourselves and without guilt. Gradually try to let go
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Safe, secure support.
of the notion that your existence revolves only around
your child. The child does not take away your right
for happiness and independence. Your state of
Now your child can sit independently
and well-positioned in the safety of
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our toilet support. A perfect match
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For some, getting out and finding other outlets
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models. They install in minutes on
any home or institutional toilet. And
children with disabilities. This is often very
they conveniently lift off, out of your
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way, when not in use. We know you'll
world of exceptionalities is not really a respite.
agree they are the most durable,
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Bowling, for example, is. As a matter of fact, physical
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exercise is wonderful. I have been jogging now for
over 10 years, and my half-hour run really allows me
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Now that I have stressed the need for free time
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NAME
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EXCEPTIONAL PARENT
APRIL 1989
17
A
DAY
WITH
"B"
8:00 A.M.
Bjorn Kirkland is affectionately
known to his classmates as "B" at the
In the morning, Bjorn meets Curtis
Consentino Elementary School in
Neavill, 11, and his aid, Dorette
Haverhill, Massachusetts. Bjorn is 12
Sims, for an early breakfast.
years old and has hypsarrhythmia, a
brain wave disorder. We follow him
on a typical day in the mainstream.
8:15 A.M.
Curtis helps Bjorn on his morning
walk before classes.
CK.TO
S
H
9:00 A.M.
Bjorn in Mr. Mendelson's math class.
18
EXCEPTIONAL PARENT
APRIL 1989
10:00 A.M.
In Mrs. Ryan's English class, Bjorn
is read to by Chrystie Madore.
Students regularly take turns
reading to Bjorn.
IIIIII
12:00 NOON
Bjorn eats at the cafeteria with
Curtis.
2:00 P.M.
Bjorn plays ball in gym class with
some of his friends.
Photos by Cheryl Cullen
EXCEPTIONAL PARENT
APRIL 1989 19
SOCIAL
INTEGRATION:
Developing your
own special
techniques for
A PARENTAL CHALLENGE
managing your
child.
Brad Allen gets a big hug from his sons, Jeff and Clayton.
A
S the parents of children with
of their voice! Amidst the icy stares and
developmental disabilities, we've
loud whispers of condemnation, you can't
all been there. The waiter has just
help but wonder how South America is this
left your table with an order for your
time of year.
favorite meal. The restaurant's atmosphere
Needless to say, the experiences we've
is very soothing, and you're looking
just described, or ones like them, can have a
forward to an enjoyable evening out with
profound effect on how you plan future
the family. Just as you feel yourself relax,
family activities. The feelings of
out of the corner of your eye you see the
embarrassment and frustration are beyond
blur of your son's or daughter's arm as it
words. Yet we continue to involve our son,
snatches up a fork and, with amazing
Jeff, in as many social events as possible
accuracy, tosses it toward the group of very
despite ours and other people's misgivings.
large people seated at the adjoining table.
Still, every now and then, especially
by
Or, as your minister, priest or rabbi
after going through several difficult
Brad and
makes that dramatic pause in a special
experiences in a relatively short period of
Stephanie
sermon, your son or daughter decides, for
time, we find it necessary to re-evaluate
Allen
no apparent reason, to review his or her
Jeff's needs and how we can best provide
vocabulary of four letter words - at the top
for them.
20
EXCEPTIONAL PARENT
APRIL 1989
NORMALIZATION
Many times effective time manage-
ment is the key element in managing Jeff's
Before becoming parents, we were
behavior. Consequently, it is extremely
(and continue to be) professionals in the
important that activities flow smoothly so
field of developmental disabilities. After
that there aren't any long delays.
spending years working with many socially
Finally, we always try to reward Jeff
isolated and lonely people, we felt
when he exhibits appropriate behaviors
compelled to adopt the "Principle of
with praise, hugs, etc. so that he will
Normalization," which is based on the idea
eventually learn the behaviors that are
that people with disabilities have a right to
expected from him in certain social
live as "normal" a life as possible.
situations.
Consequently, with a sense of moral
obligation, we set out to
LONG TERM
include Jeff in the events and
COMMITMENT
Jeff and his brother, Clayton,
activities that are typical of
try on Dad's shoes.
other children his age. As we
As the parents of a
soon realized, our efforts
young man with a
resulted in our becoming
developmental disability,
behavioral specialists of sorts.
we've been faced many
times with the dilemma
PLANNING AHEAD
of whether or not we
should take our son to
We have often found the
social activities because
most effective technique to be
of his disruptive
a combination of disarming
behaviors. As we've
our son's disruptive behavior
learned over the years,
quickly, while anticipating
our approach to this
situations that might lead to
"We set out to include Jeff
problem is a life-long
these behaviors.
commitment to certain
Perhaps our greatest
in activities that are typical
goals for our son, not a
area of proficiency is our
of other children his age."
single, simple decision.
ability to evaluate his mood
That is, we have commit-
and plan appropriate activities accordingly.
ted ourselves to include our son in as many
For example, if Jeff is in a "bad" mood, he is
social activities as possible because we feel
capable of many disruptive and socially
that these experiences will enrich his life.
inappropriate behaviors such as swearing
However, we also feel that we must
loudly, throwing objects, engaging in self-
not impose our ideals on other people to the
abusive behavior, and striking out at people
point that we interfere with their freedoms.
around him. When he is in this state, we try
By developing our own special techniques
to choose family activities where we can
to assist our son with managing his behav-
control the physical environment as much
iors, we are able to support his participation
as possible.
in many social activities and, at the same
Bright lights, loud noises, extreme
time, not interfere unduly with the activities
temperature and large crowds usually
of the people around us. This is the true
exacerbate Jeff's negative mood. It is also
challenge for parents who want to socially
important that we avoid activities that
integrate their child with special needs.
restrict Jeff's movements since he can
become very agitated if he can't move
around freely when he's unhappy.
Although we try to ensure that he can
Stephanie Allen (pictured right) is the Services
move freely about, at the same time we try
Director for Advocates for Retarded Citizens
to limit his accessibility to objects and/or
(ARC) and is currently working on a B.A. in
management. Brad Allen has a Ph. D. in
people if he's displaying aggressive
educational psychology from Marquette
behaviors. The best strategy at these times
University and is fulfilling the requirements for
is to try to limit or eliminate his
licensure in psychology. The Allens live in
opportunities to act out in a socially
Shorewood, Wis., with their two sons,
inappropriate manner.
Jeffrey, 14, and Clayton, 2.
EXCEPTIONAL PARENT
APRIL 1989
21
RESOURCE SECTION
Augmentative/Alternative
Resource Directories:
Communication Directory
Closing the Gap
(Feb/March Resource Directory )
P.O. Box 68
Wenderson, Minn. 56044
ASSOCIATIONS AND
Pacific Northwest Non-Vocal
(612) 248-3294
ORGANIZATIONS
Communication Group
Membership Committee
Rehabilitation/Education Resource
Special Education Software Center
Dept. of Rehabilitation Medicine
Book 3 - Computer Software &
Building B, Room S312
PJ-30
Hardware, by Sara Brandenburg &
333 Ravenswood Ave.
University of Washington
Greg Vanderheiden
Menlo Park, Calif. 94025
Seattle, Wash. 98185
Trace Research & Development Ctr.
For technical assistance, call 1-800-
S-151 Waisman Center
223-2711; TTY: 1-800-435-7639
COPH-2
1500 Highland Avenue
For software information,
(The Committee on Personal
Madison, Wis. 53705
call 1-800-327-5892
Computers and the Handicapped)
2030 W. Irving Park Road
IBM Software for Education,
The Boston Computer Society -
Chicago, III. 60618
(August 1986)
SNUG (Special Needs Users Group)
Link & Go Newsletter
IBM Corporation, Dept. 8WH,
One Center Plaza
P.O. Box 2150, Atlanta, Ga. 30035.
Boston, Mass. 02108
Association for the Advancement
(617) 367-8080
of Rehabilitation Technology
Education Software Directory, (1985)
(Previously RESNA)
Electronic Communications, Inc.,
International Society for
1101 Connecticut Ave., NW,
1311 Executive Center Dr., Suite 220
Augmentative and Alternative
Suite 700
Tallahassee, Fla. 32230
Communication (ISAAC)
Washington, D.C. 20036
P.O. Box 1762, Station R
Software Directory
Toronto, Ontario, M4G 4A3, Canada
Augmentative Communication
for Communication Sciences
Enterprises, Inc. (ACE)
and Disorders American Speech -
Computers Users in Speech and
551 East Columbus Ave., Suite 102
Language Hearing Foundation
Hearing (CUSH)
Springfield, Mass. 01105
10801 Rockville Pike
School of Hearing & Speech
(413) 737-7368
Rockville, Md. 20852
Science
Attn: Publication Sales
Ohio University
SOFTWARE: DIRECTORIES,
Athens, Ohio 45701
DEVELOPERS AND VENDORS
Software Developers/Vendors:
American Voice I/O Society (Voice
Public Domain Sources
Peggy Barker,
Input/Output Society)
for Education Software:
Rehabilitation Engineer
P.O. Box 60940
Children's Hospital at Stanford
Palo Alto, Calif. 94306
Software Shopper
520 Sand Hill Road
Compiled by: Sandra Hart-Davis
Palo Alto, Calif. 94304
The Council for Exceptional
Developed by: Outreach,
Children (CEC)
Pre-College Programs, Gallaudet
Institute on Applied Rehabilitation
Center for Special Education
University, Washington, D.C.
Technology
Technology Information Exchange
Available from: D & H Associates
Children's Hospital
1920 Association Drive
1391 Meadowbrook, N.E.
300 Longwood Avenue
Reston, Va. 22091
Palm Bay, Fla. 32905
Boston, Mass. 02115
Technology and Media Division
(305) 725-5558
(617) 735-6466
9366 Mellenbrook Road
Columbia, Md. 21045
Public Domain Software
Don Johnston Developmental
Colorado Easter Seal Society, Inc.
Equipment
Northeast Communication
Computer Resource Center
981 Winnetka Terrace
Enhancement Group (NCEG)
5755 W. Alameda
Lake Zurich, III. 60047
P.O. Box 241
Lakewood, Colo. 80226
(312) 438-3476
Winchester, Mass. 01890
(303) 233-1666
22 EXCEPTIONAL PARENT
APRIL 1989
RESOURCE SECTION
Exceptional Children's Software
Davidson & Associates
P.O. Box 4758
6060 Groveoak Place, 112
Overland Park, Kan. 66204
Rancho Palos Verdes, Calif. 90274
(213) 378-3995
REWARDING
Laureate Learning Systems
110 East Spring St.
Computer Learning Materials, Inc.
reading
Winooski, Vt. 05404
P.O. Box 13325
(802) 655-4755
Ann Arbor, Mich. 48103
(313) 996-1619
College-Hill Press
4284 41st St.
Brain-Link Software
San Diego, Calif. 92105
317 Montgomery
1-800-854-2541
Ann Arbor, Mich. 48103
(313) 995-0604
Parrot Software
Ben's Story
P.O. Box 1139
UCLA Intervention Program
A Deaf Child's
State College, Pa. 16804
1000 Veteran Avenue Room 23-10
Right to Sign
Lorraine Fletcher
(814) 237-7282
Los Angeles, Calif. 90024
(213) 825-4821
Ben's Story explores the strug-
Peal Software
gles of a young couple to get sign
5000 N. Pkwy Calabasas, Suite 105
DIL International Inc
language instruction for their
Calabasas, Calif. 91302
2115 Bolvin
young son. Inspiring reading.
(818) 883-7849
Ste. Foy, Quebec,
276 pages ISBN 0-930323-47-5 $7.95
Canada G1V 1N6
R. J. Cooper & Assoc.
(418) 687-9788
2144 S. 1100 East, Suite 150
You and Your
Salt Lake City, Utah 84106
Dunamis, Inc.
Hearing-Impaired Child
(801) 263-1388
A Self-Instructional Guide
3620 Highway 317
for Parents
Suwanee, Ga. 30174
John W. Adams
Schneier Communication Unit
(404) 932-0485
An indispensable guide for par-
Cerebral Palsy Center
ents of hearing-impaired children.
1603 Court Street
Edu-Ware Series, Inc.
This friendly book gives parents
Syracuse, N.Y. 13208
22222 Sherman Way, Suite 203
insight and practical advice.
(315) 455-7591
Canoga Park, Calif. 91303
150 pages ISBN 0-930323-40-8 $9.95
(213) 346-6783
Sunburst Communications
39 Washington Avenue
Hartley Courseware, Inc.
The Gallaudet
Pleasantville, N.Y. 10570
Dimondale, Mich. 48821
Survival Guide to Signing
(914) 769-5030 or
(517) 646-6458
Leonard G. Lane
1-800-431-1934
Illustrated by Jan Skrobisz
Life Science Associates
This handy pocket guide illus-
Sunset Software
1 Fenimore Road
trates about 500 signs in the
11750 Sunset Blvd., Suite 414
Bayport, N.Y. 11705
American Sign Language system.
Los Angeles, Calif. 90049
(516) 472-2111
-Booklist
(213) 476-0245
208 pages ISBN 0-930323-34-3 $3.50
Midwest Publications
Trace Center
P.O. Box 448
S-151 Waisman Center
Pacific Grove, Calif. 93950
800 FLORIDA AVENUE, N.E.
1500 Highland Avenue
(408) 375-2455
WASHINGTON, DC 20002
Madison, Wis. 53705
1-800-451-1073 (V/TDD)
(608) 262-6966
Psychological Software Services
P.O. Box 29205
Washington Research Foundation
Indianapolis, Ind. 46229
U District Bldg., Suite 322
(317) 291-5909
1107 NE 45th St.
GALLAUDET
Seattle, Wash. 98105
university press
EXCEPTIONAL PARENT
APRIL 1989 23
RESOURCE SECTION
Robert J. Sbordone, Ph.D.
Learning Company
Mindscape, Inc.
13412 Donegal Drive
6493 Kaiser Drive
3444 Dundee Road
Garden Grove, Calif. 92644
Fremont, Calif. 94555
Northbrook, III. 60062
(714) 638-1728
(415) 792-2101 or
1-800-852-2255
Springboard Software, Inc.
Sublogic Communication Corp.
7808 Creekridge Circle
713 Edgebrook Drive
MarbleSoft
Minneapolis, Minn. 55435
Champaign, III. 61820
21805 Zumbrota N.E.
(612) 944-3915
(217) 359-8485
Cedar, Minn. 55011
(612) 434-3704
TOYS AND ADAPTED DEVICES
Milliken Publishing Co.
1100 Research Blvd.
MECC
How to Modify Toys and/or
P.O. Box 21579
3490 Lexington Avenue N.
Adaptive Devices:
St. Louis, Mo. 63132-0579
St. Paul, Minn. 55126
(612) 481-3640
Augmentative Communication
Broderbund
Assessment Resource,
P.O. Box 12947
Thinking Works
Goossens, C. and Crain, S.
San Rafael, Calif. 94913-2947
P.O. Box 468
Don Johnston Developmental Equip.
St. Augustine, Fla. 32085
900 Winnetka Terrace
Activating Children Through
(904) 824-0648
Lake Zurich, III. 60047
Technology (ACTT)
There is a wealth of information in
27 Horrabin Hall
Teacher Support Software
this two-book series (the other
W. Illinois University
P.O. Box 7130
volume is Augmentative
Macomb, III. 61455
Gainesville, Fla. 32605
Communication Intervention
(309) 298-1014
(904) 371-3802 or
Resource). See pp. 140-144 for
1-800-228-2871
instructions on battery adaptations.
No More ROBOT Voice for Me !!!
66
The portable DECtalk™ is here! Finally, excellent quality
synthesized speech is now portable and affordable.
DECtalk has been recognized as the cadillac of synthesized speech technology. Now
non-speaking youngsters and adults, using dedicated communication devices and/or
personal computers, can select any one of eight (8) standard speech options as their own
personalized voice! Only nine pounds, the portable DECtalk is powered by a rechargeable battery, and
can easily be connected to personal computers and many dedicated augmentative communication aids.
In addition to instructional manuals, personalized expert technical and applications support is available at
no extra charge.
Price: $1585.00 plus shipping. Price includes one (1) cable
SPECIFICATIONS
for specified application plus applications support materials.
Size: 8" X 11" X 3"
This substantially reduced price is made possible through
Weight: 9 lbs.
generous Digital Equipment Corporation support.
Compatibility with other devices:
Personal computers having RS232C serial output
Warranty: 90 days. Satisfaction Guaranteed. A full refund is
including:
-Apple, Macintosh and IBM computers
available if the DECtalk is returned within 14 days of receipt.
Dedicated, portable communication aids including:
The excellent quality of the DECtalk will speak for itself!
- Prentke Romich: Light Talker and Touch Talker
To hear it all you are invited to call (617) 735-6882,
-Adaptive Communication System: Speech Pac &
Scan Pac
Monday through Friday, 4-7 p.m. EST.
-Words +: Equalizer
-Zygo: Lightwriter
For additional information or to order, please contact:
Institute on Applied Rehabilitation Technology
Voices: Eight (8) options: young child, 3 adult men,
The Children's Hospital, 300 Longwood Avenue, Dept. EP,
3 adult women and custom
Boston, MA 02115, (617) 735-6466
24 EXCEPTIONAL PARENT
APRIL 1989
RESOURCE SECTION
Homemade battery powered toys
Oklahoma State University
Organizations and Associations:
and educational devices for severely
Stillwater, Okla. 74078
handicapped children,
(405) 624-7650
LEKOTEK
More homemade battery devices for
613 Dempster
severely handicapped children with
Technology for Independent Living
Evanston, III. 60201
suggested activities., Burkhart, L.
Sourcebook, Enders, A. (ed.)
(312) 328-0001
Linda J. Burkhart
RESNA
8315 Potomac Ave. or
1101 Connecticut Avenue, Suite 700
USA Toy Library Associations
8503 Rhode Island Ave.
Washington, D.C. 20036
1800 Pickwick Avenue
College Park, Md. 20740
(202) 857-1199
Glenview, III. 60025
(312) 724-7700
Guidelines for Adapting Toys
From Toys to Computers: Access
(Information plus newsletter)
for the Physically Handicapped,
for the Physically Disabled Child
Higgins, J.
(1985),
ACTIVE
Jayne Higgins
Wright, C. and Nomura, M.
Play Matter/NTLA
California Avenue School
Christine Wright
Seabrook House
215 W. California Avenue
P.O. Box 700242
Darkes Lane
Vista, Calif. 92083
San Jose, Calif. 95170
Potters Bar, Herts, ENGLAND
EN6 2HL
Homemade Switches and Toy
Adaptive play for special needs
Adaptations for Early Training
children: Strategies to enhance
This Resource Section is excerpted
with Non-Speaking Persons, Coker.
communication and learning (1985),
from The Northeast Communication
William B. Coker, Jr.
Musselwhite, C.
Enhancement Group's Fall 1988
Cincinnati Ctr. for Dev. Disabilities
College-Hill Press
Newsletter, which included a more
3300 Elland Avenue
4284 41st St.
extensive listing. Write to NECEG,
Cincinnati, Ohio 45229
San Diego, Calif. 92105
Box 241, Winchester, Mass. 01890,
(Also published in Language
1-800-854-2541
for more resource information.
Speech and Hearing Services
in the Schools, 15(1), pp. 32-35.)
The Handicapped's Source®
Toy Modification Note:
Build-it-Yourself-Battery-Insert,
Computer Products For
Vanderheiden, G.
Trace Center
1500 Highland Avenue, S-151
Complete Computer
Madison, Wis. 53705
Systems
Alternate Input Devices
Touch Toys and How to Make Them
Software for:
(primarily toys for blind)
Basic Living Skills
Touch Toys
Problem Solving
P.O. Box 2224
Evaluation / Utility
Rockville, Md. 20852
Creative Development
Educational / Entertainment
Simple switch modifications for use
in augmentative communication
Casby, M. (1984)
Refer to Language, Speech and
Call or write
me
Hearing Services in Schools, 15(3),
today for our FREE
Authorized
216-220.
Value Added
comprehensive
Personal
Authorized Value Added Reseller
catalog!
il
Computers
pell
Switching Mechanisms for Special
®
Needs - A Project Manual,
ComputAbility
Lynn, W.
National Clearinghouse of
The Handicapped's Source
Rehabilitation Materials
ComputAbility Corporation
115 Old USDA Building
101 Route 46, Pine Brook, New Jersey 07058
Call Order Line: (201) 882-0171
EXCEPTIONAL PARENT APRIL 1989 25
MAKING YOUR HOME WORK
GETTING IN & OUT
OF YOUR HOME
Ramps, Elevators,
Lifts and Doorways
Making Your Home Work is a new department that will focus on informing
parents about adaptive aids and other kinds of equipment to help children get
around and enjoy life as much as possible.
RAMPS
extension makes the climb even
When the amount of outdoor
easier so a ratio of 1:14 may be better
space is limited, a ramp can be built
Since few homes or apartments
- if there is enough space at the
with the proper slope by using "L" or
are accessible at ground level
entrance to the home. In fact, if the
"U" shaped turns (called
without stairs or thresholds, ramping
ramp rises more than two feet, a
switchbacks). When this is done, it is
can be a big help. In selecting the
slope of 1:20 is likely to be much
usually helpful to have a landing at
best place for an entry ramp to a
easier. However, when space is very
the switchback (turn) as a rest area.
home, convenience, adequate
limited, a steep slope of 1:8 may be
It is suggested that landings be level
outdoor space, and ease of
workable.
and at least 48" in each direction.
maintenance aré key
Landings for rest are also
considerations. Ideally, a ramp
recommended on long straight
would be sheltered from bad
ramps. For every 30 inches of
weather; or, at least, protected
rise, a landing 36-42" long is
from the "side effects" of bad
usually suggested. Landings can
weather such as snow falling
also be helpful at the top and
from a roof onto the ramp.
bottom of a ramp. These should
The slope of a ramp, the
provide sufficient level space to
relationship between the length
turn, maintain balance, and open
of the ramp and the height of the
the door. Sometimes, at the end
ramp, is critical. The generally
of the ramp, where it is likely to
accepted ratio for slope is 1:12;
meet an already constructed
that is, for every one foot of
structure, a so-called safety curb
height, a ramp must extend 12
may be helpful for a smooth
feet so that the slope will be
transition.
reasonably gentle. A longer
The width of the ramp
depends on needs of the
individual and on the mobility
A stair lift from National
aid used. For example, if a child
Wheel-O-Vator Company
26 EXCEPTIONAL PARENT
APRIL 1989
MAKING YOUR HOME WORK
Telescopic Channel Ramps
made by Lakeshore
Products
was learning to walk with crutches
the sides. If small children are likely
narrower (usually 26" wide) than
needing an adult alongside for
to use the ramp, sides or some
permanent ramps and are usually
assistance, a ramp would need to be
protective material along the sides
hinged in the center for folding and
rather wide.
can prevent falls.
have handles for carrying. The
For a person in a wheelchair,
The surface texture of a ramp
length of these ramps can vary from
the individual's ability to control the
should be designed to minimize
30" to 10 ft and are of various
chair and how much leeway is
slipping in wet weather. If the ramp
weights depending on the materials
needed from side to side both
is wooden, the wood planks should
used. Smaller sections can be bolted
contribute to determining sufficient
run across the ramp rather than up
together for longer distances and
width. Based on "typical
and down. If the ramp is concrete, it
adjustable support legs can be used
wheelchairs," a width of at least 36"
should be textured. Metal ramps are
at the connecting points of separate
or more, up to 40-44", is usually
designed to minimize slipping.
sections.
suggested. A narrower width (30")
Concrete ramps are permanent
Track or telescoping ramps
may sometimes be adequate.
while metal and wood can be
consist of two separate channels for
When the child is going to use
considered semi-permanent.
the wheels of a wheelchair. Channels
handrails to help propel himself up
Commercially available ramps come
come in various lengths and are
the ramp, then steady and secure
in sections of various sizes that can
usually hinged for folding and
handrails on both sides of the ramp
be dismantled, called modular
carrying. Sometimes the channels
are needed and the distance across
ramps. All ramp materials should
telescope into each other for ease of
from one rail to the other must be
be fireproof.
transport. There have been some
measured carefully. This distance
efforts to attach telescoping ramp
will be narrower than the ramp and
PORTABLE RAMPS
channels directly to wheelchairs so
will depend on the personal comfort
that the individual can bring his or
of the child. The handrails can be
Two kinds of ramps are
her own ramp.
square or round in shape, with round
portable and can be moved from
Portable ramps may need rails,
being preferred if the child is going
place to place. Depending on the
curbs, or landings depending on how
to be holding on most of the time.
skills of the individual who needs the
they are to be used.
A small curb (at least 2" high)
ramping, another person may be
along the sides of the ramp will
needed to set up the portable ramp.
prevent the chair from slipping off
Portable standard ramps are
EXCEPTIONAL PARENT
APRIL 1989
27
MAKING YOUR HOME WORK
AnneCarlsen
School
serving the physically
and ulti-handicapped
Jamestown, North Dakota
A place of opportunity
for 45 years
Disabilities (cerebral palsy, spina bifida,
muscular dystrophy, paraplegia and quadri-
plegia, arthritis and other health impairments).
Developmentally delayed, learning disabled,
SMH, EMH and TMH, autistic.
OPEN FOR INDIVIDUALS AGES 3-21
Ramping system with ANSI-approved handrails made
On-Site Services Offered:
by Lakeshore Products.
Accredited education
Residential care
Special education
24-hour nursing care
LIFTS
Pre-vocational training
Adaptive physical ed.
Physical therapy
Psychological services
People and wheelchairs can also get to an
Occupational therapy
Therapeutic swimming
Speech development and
Equipment adaptations
entryway via an outdoor lift or elevator. Stairlifts and
therapy (services for
Scholarship programs
elevators can also be used indoors.
non-verbal communication)
Extra-curricular activities
Driver's education
Prosthetics/Orthotics
Stair elevators or vertical lifts may be in an
encased shaft (elevator) or can be open, fitted onto
For more information call Vernon Fleming, principal,
(701) 252-3850 or write to Anne Carlsen School,
guide rails or wall tracks. These devices can provide
301-7th Avenue N.W., Jamestown, N.D. 58401.
access to a porch or can be placed alongside steep
stairs. They can also be used indoors if there is
sufficient space in stairwells. Enclosed elevators need
sufficient lighting and may need a communication
device, like a telephone, in case of trouble. Special lifts
A child's
are available to provide entry to a motor home.
Stairlifts are usually designed for straight
potential deserves
stairways inside a home. Stairlifts are platforms with
to be developed
various types of seating (or standing), supports, and
controls. The platform travels up and down the
staircase on tracks on the stairs themselves or on the
Marblesoft Early
adjoining wall. Some are designed for the person to be
Learning programs
were developed by
seated on the lift itself; others can accommodate a
experienced special
person in a wheelchair. If a stairlift only
education teachers
who understand that
accommodates a seated person, the ease of transfer
no two children
from the child's wheelchair to the lift needs careful
are alike.
assessment.
We've developed a
Stairlifts, while expensive, are likely to be a less
series of programs with a wide range of skill levels and options
for pre-school, early elementary and learning disabled stu-
costly alternative to bedroom and/or bathroom access
dents. These programs teach and reinforce pre-reading, basic
than creating a bedroom and full bathroom on a
math, sequencing, pattern recognition and money skills.
ground floor. If a home has two sets of stairs, two lifts
Program options include: single switch input, speech output,
are probably needed. Curved rails for staircase turns
large keyboard/power pad overlays and Touch Window access.
are available. Stairlifts should not use all the room on
At Marblesoft, we believe that once children start learning they
stairways.
shouldn't have to stop.
Lifts should provide smooth rides, without
For more information, write or call:
jerkiness, and be easy to operate. Safety belts and
gates are probably needed as is sufficient room at the
MARBLESOFT
top and bottom of the lift to exit or enter safely.
Finally, lifts, like any powered equipment, are subject
21805 Zumbrota N.E. Cedar, MN 55011
to power failures SO some safety mechanism should
612-434-3704
protect the rider in such an emergency.
Programs compatible with Apple systems.
28
EXCEPTIONAL PARENT
APRIL 1989
MAKING YOUR HOME WORK
ALL YOUR
PROFESSIONAL INPUT
MEDICAL SUPPLIES
UNDER ONE ROOF
Members of a child's clinical team can help
parents review the possible aids that are available
and discuss how each product might help meet a
West Medical offers the most complete catalog
child's current needs as well as the child's probable
of medical supplies delivered to your door!
future needs.
* 100 PAGES *
The team can also share its knowledge about
* MORE THAN 1200 ITEMS *
where products can be purchased, as can help
*
REPRESENTING 70 MANUFACTURERS *
identify other families who are using the same or
similar products. In addition, the team can suggest
Call 1-800-222-6800
adaptive equipment professionals (sometimes
West Medical features: Incontinent Care Products,
called medical equipment dealers, or just dealers)
Home Medical Equipment, Nursing Care Products,
who may be able to help by demonstrating
Diabetic Home Testing Equipment & Supplies,
products, explaining the pros and cons of various
Pediatric Rehabilitation Equipment, Enteral
choices, and sharing their wisdom about how to
Feeding Equipment and Nutritional Supplements.
finance the purchase of specific products.
Key questions for parents and the team to
SHOP AT HOME
discuss are how the child can get around now and
what the future might look like. For example, can
CALL OR WRITE FOR FREE CATALOG
the child walk with crutches or a cane, or is the
10% DISCOUNT ON FIRST ORDER
child likely to need a stroller or wheelchair for
mobility? For children who will need a chair, who
West Medical, Inc.
or what will provide the push power? Can the
411 Waverley Oaks Road
child learn to wheel himself or herself using his/her
own strength, or will he/she need a motorized
Waltham, Massachusetts 02154
system? Or will the child need the help of another
person to push the chair?
These questions are complex ones because the
answer can depend a great deal on the specific
setting being discussed. For many children, the
answer may be that the child can learn to move the
chair either by his/her own power or motor power
and, sometimes, parents or others may need to help.
Overall, the decision to purchase any equipment
requires careful discussion and, whenever possible,
EPICS Messenger Newsletter
$20
opportunities to try before you buy and/or review
with other consumers using the product.
"Finding the Balance"
$35
A video tape of two Indian mothers sharing their
experiences as parents of children with handicaps
Stair tracks are a completely different way to get
a person in a wheelchair up stairs. The person in the
"Listen with Respect"
$35
wheelchair is wheeled onto the tracks (and frame).
This video tape explores the communication
With another individual at the controls, the stair track
problems that can arise between Indian parents of
climbs the stairs. Stair tracks can be battery operated
children with special health care needs and non-
and portable.
Indian health care professionals.
DOORS, DOORWAYS
EPICS provides information and training to parents
of Indian children who have disabilities or special
Once a person in a wheelchair, or walking with
needs. For more information or to order call or
crutches or cane(s), reaches the top of the stairs to a
write:
home, the door needs to be opened. For a person in a
wheelchair to get through a doorway, an opening of at
EPICS Project
least 30" is essential. To accommodate a wheelchair
P.O. Box 788
propelled by a person's hands, with sufficient room
Bernalillo, N.M. 87004
(505) 867-3396
EXCEPTIONAL PARENT
APRIL 1989
29
LEADING THE WAY IN CREATIVE PLAY
MAKING YOUR HOME WORK
All educational toys aren't small.
Self-confidence is a key to both
physical and mental develop-
ment. Self-confidence can be
attained at an early age,
through creative play, as
in a WOODSET play
structure. WOODSET
offers a variety of
standard designs
coupled with
creative solu-
tions
to
mobility and
positioning
concerns.
SPECIAL
FOR PEOPLEOPLE! PLAYSETS SPECIAL
1-(800) 638-9663
WOODSET
Box 2127, Waldorf, MD 20604
EXPANDABLE 4 X 4 BACKYARD PLAY STRUCTURES
Talking Computer Systems
12 Riverside Street, Suite 1-3
Watertown, MA 02172
The Stair-Trac made by Garaventa Ltd.
617-926-1919
for both arms and elbows, usually requires 36", based
on studies of average sized adult wheelchair users.
Introducing:
Interior doors which are often 32" wide may be
sufficient. However, doorway widths can be deceiving
KURZWEIL
because when a door is swung open, a few inches of
width can be lost. Special hinges that allow a door to
PERSONAL READER
swing completely open can solve this problem.
Finally Print Access for the
Another consideration is which way a door
should swing open to offer the best amount of
Visually Impaired
clearance space. Spacewise, a sliding door can be ideal
as long as the channel for the bottom runner of the
EUREKA A4
door is set in the floor so it does not become a barrier.
Special handles can make a door easier to open
A Total Braille Input
than dealing with round doorknobs. Heavy rubber
Speech Output Student Workstation
bands or nonslip strips can make round doorknobs
easier to turn. In addition, a door may need a special
handle to help the person close the door once through
the doorway. For the person in a wheelchair, doors
probably need kickplates since the person is likely to
push the door with the metal footrests of the
wheelchair.
CALL OR WRITE FOR MORE INFORMATION
At entry doorways, a shelf for packages or
30
EXCEPTIONAL PARENT
APRIL 1989
MAKING YOUR HOME WORK
bookbags will be helpful as will a handy light switch.
Florida's Best
Doormats need to be recessed or out of the way.
Whenever possible, entry doorways should be covered
to provide weather protection. Storm doors can add
Sunrise Community for the Retarded Since
additional complications since two doorways close
1969 Excellent services, modern facilities, dedicated
together must be managed. As a result, some people
staff and a rural sub-tropical setting all in one place
in cold climates use a single heavier door instead of
storm doors.
Thresholds, or doorsteps in any doorway, can be
ACDD Accredited (Sole Florida agency)
an extra problem. It may be necessary to construct a
Recipient of National Residential
wooden wedge; or a doorstep ramp can be purchased.
Services Award (NAPRFMR 1986)
This article was prepared with the help of the
Full-time physician on staff
following people: Melody B. Dill, President, Rehab
Specialists in meeting individual needs
Marketing Management, Milwaukee, Wisconsin; Terry
of children/adults with moderate to
B. Grall, Ph.D., President, Consumer Care Products
severe developmental disabilities.
Inc., Sheboygan, Wisconsin and Elaine Trefler, O.T.R.,
Locations throughout Florida
M.Ed., Director of Educaton, Rehabilation Engineering
Program, University of Tenn., Memphis.
We would also like to thank ABLEDATA for
Contact:
assistance in developing the list of companies included
Michael J. Hart,
in this article. ABLEDATA is a database with over
Director of Admissions
15,000 products useful to persons with disabilties from
22300 S.W. 162 Avenue
over 1,900 companies. ABLEDATA is funded by the
SUNRISE
Miami, Florida 33170
National Institute on Disability and Rehabilitation
(305) 245-6150
Research of the U.S. Department of Education.
Further information is available from
ABLEDATA, Adaptive Equipment Center, Newington
Children's Hospital, 181 East Cedar Street, Newington,
CT 06111, (800) 344-5405 or (203) 667-5405 (CT) voice
ot TDD. Reports are free up to eight pages
Attends®
(approximately 24 product reports). There is a
nominal cost for longer reports.
BUY THE CASE
A sample product printout from ABLEDATA is
shown below.
Doc Number: 014478.
Attends
Generic Name: CURB RAMP.
Brand Name: WHEELCHAIR CURB RAMPS, F70610
NEW YOUTH SIZE!
0000, F70610 0001.
*
Manufacturer: Maddak Inc, 6 Industrial Road, Pequannock,
NJ 07440.
FREE SAMPLE
Code Number: 0184.
Availability: Manufacturer.
1-800-538-1036
Cost: $205.50 (folding); $175.50 (rigid), 1987.
Description: Wheelchair curb ramps available in single 36
Home Delivery
inch length (F70610.0000) or 36 inch folding type
Incontinent Supplies Co.
(F70610.0001). Overall length of folding unit is 24 inches
including carrying handle, 5 inches wide, 1 3/8 inch high
For Sample Mail To: HDIS, P.O. Box
safety edges. Made of polyester fiberglass. Double
52043, St. Louis, MO 63136
crossbars keep ramps aligned at 22 inch centers. Ribbed
rubber treads improve traction. Rubber pads on the bottom
of both edges prevent slippage. Maximum rise of 4 inches
Now try the newest
Name
recommended.
Attends designed,
Keywords: Architectural Elements. Vertical Lift. Ramps.
for children from
Comments: This category contains remarks regarding
the leader in home
Address
products and may not appear on every product entry.
delivery.
The following pages list companies that manufacture
City
State
Zip
the types of equipment discussed in the article.
* One sample per family.
(
)
while supplies last
Area Code
Phone #
EXCEPTIONAL PARENT
APRIL 1989
31
MAKING YOUR HOME WORK
"Providing Maximum
CURB RAMP
Opportunity for
Success and Well
MADDAK INC 6 Industrial Road, Pequannock, NJ 07440 (800) 443-4926
Being to Individuals
PORTABLE RAMP/TRACKS
Unable to Attain
Such on Their Own"
FRED SCOTT AND SONS 1444 W Rand Road, Des Plaines, IL 60016
SHERRY PRODUCTS INC 2410 West Carson, Torrance, CA 90501
FRED SAMMONS INC Box 32, Brookfield, IL 60513
Annandale
INTER AM MANUFACTURING INC 1826 Dawns Way Fullerton, CA 92631
HANDI-RAMP INC, P O Box 745, 1414 Armour Boulevard, Mundelein, IL
60060-0745 (312) 566-5861
Located Near
MEDICAL LINE WAREHOUSE, P.O. Box 20609, Sarasota, FL 34238
Atlanta, Georgia
Village
CRUMP PRODUCTS INC 333 Guthrie Green, Louisville, KY 40202
MED WORLD Route 2, Box 37, Chipley, FL 32428 (904) 638-7156
THOR-WELD INDUSTRIES 137 Millwick Drive, Weston, Ontario, M9L 1Y7
Canada
Annandale at Suwanee is a non-profit corporation
AFW CO OF NORTH AMERICA Exchange Bank Building, 201 N Union
founded in 1969 to provide residential care and
Street, #311, Olean, NY 14760 (716) 372-2935
social/vocational services to developmentally
ALUMNI RAMP 855 Chicago Road, Quincy, MI 49082 (517) 639-3815
disabled adults. Situated on 125 acres of rolling
BRUNO INDEPENDENT LIVING AIDS INC 430 Armour Court, P.O. Box 84,
hills, woodlands, pastures, and farm land, with a
Oconomowoc, WI 53066 (414) 567-4990
15 acre lake, the Village is comprised of more
GUARDIAN PRODUCTS INC 12800 Wentworth Street, P.O. Box C-4522,
than 20 buildings. Well-suited to living and learn-
Arleta, CA 91331-4522, (818) 504-2820
ing, the Village continues to expand its facilities
HOMECARE PRODUCTS CO P.O. Box 58997, Seattle, WA 98138 (206)
251-9183
and personnel to offer a broader range of quality
programs and services. For further information
JH INDUSTRIES, INC 8901 E Pleasant Valley Road, Independence, OH
44131 (800) 321-4968
contact the admissions director.
THE KURB RAMP P.O. Box 1826, Murphys, CA 95247 (209) 728-2075
Annandale at Suwanee, Inc.
MAC'S LIFT GATE INC 2801 South Street, Long Beach, CA 90805
(213) 634-5962
P.O. Box 7, Suwanee, Georgia 30174
NEW ERA TRANSPORTATION INC 810 Moe Drive, Akron, OH 44310
(404) 945-8381
(800) 325-9649
TRANS AID CORP 12800 Wentworth Street, P.O. Box C-4522, Arleta, CA
91331-4522, (818) 504-2820
PORTA RAMPS Div Of Young Enterprises, 5592 East La Palma, Anaheim,
CA 92807
equipment sh
ELECTRIC MOBILITY CORP #1 Mobility Plaza, Sewell, NJ 08080
(800) 662-4548
P.O. BOX 33, BEDFORD, MA 01730
TRAVEL RAMP INC P O Box 616, Mcintosh, FL 32664 (904) 373-7267
EZY RAMP COMPANY 4502 North Armenia Avenue, Tampa, FL 33603
(813) 875-6302
MODULAR / PERMANENT RAMP
We like
making
LUMEX INC, 100 Spence Street, Bay Shore, NY 11706 (800) 645-5272
ALUMNI RAMP 855 Chicago Road, Quincy, MI 49082 (517) 639-3815
kids happy.
TRAVEL RAMP INC P O Box 616, Mcintosh, FL 32664 (904) 373-7267
EZY RAMP CO 4502 N. Armenia Ave, Tampa, FL 33603 (813) 875-6302
HANDI RAMP INC 1414 Armour Blvd, P.O. Box 745 Mundelein, IL 60060-
0745, (312) 566-5861
Send for free
JH INDUSTRIES INC 8901 E Pleasant Valley Road, Independence, OH
catalog of
44131 (800) 321-4968
adaptive
MAC'S LIFT GATE INC 2801 South Street, Long Beach, CA 90805,
equipment.
Physicball
(213) 634-5962
MED WORLD Route 2 Box 37, Chipley, FL 32428 (904) 638-7156
NEW ERA TRANSPORTATION INC 810 Moe Drive, Akron, OH 44310,
(800) 325-9649
TRAVEL RAMP INC P.O. Box 616, McIntosh, FL 32664 (904) 373-7267
QUICK DECK INC P.O. Box 607, Livermore, CA 94550
GymnastikBall
FREEDOM RAMP P.O. Box 876, Libby, MT 59923
Physicial
RAMP CARRIER FOR WHEELCHAIR.
TRAVEL RAMP INC P O Box 616, Mcintosh, FL 32664 (904) 373-7267
STAIR LIFT
INCLINATOR OF AMERICA 2200 Paxton Street, P O Box 1557, Harrisburg,
PA 17105 (717) 234-8065
maslikBall
32
EXCEPTIONAL PARENT
APRIL 1989
MAKING YOUR HOME WORK
AMERICAN STAIR GLIDE CORP 4001 East 138th Street, Grandview, MO
64030 (800) 821-2041
CHENEY COMPANY 2445 S Calhoun Road, New Berlin, WI 53151-0188
(800) 782-1222
BRUNO INDEPENDENT LIVING AIDS INC 430 Armour Ct, P.O. Box 84,
Oconomowoc, WI 53066, (414) 567-4990
THE NATIONAL WHEEL-O-VATOR CO, INC P.O. Box 1308 3519 Hwy 182,
Patterson, LA 70392, (800) 551-9095
PRIDE HEALTH CARE, INC 71 S Main Street, Pittston, PA 18640,
(717) 655-5574
TRANS AID CORP 12800 Wentworth Street, P.O. Box C-4522, Arleta, CA
91331-4522, (818) 504-2820
PEAL
TOCE BROTHERS P O Box 369, Broussard, LA 70518 (800) 782-1222
ECONOL STAIRWAY LIFT CORP 2513 Center Street, Cedar Falls, IA 50613
FLINCHBAUGH CO INC 390 Eberts Lane, York, PA 17403 (717) 854-7720
Programs for Early Acquisition of Language
GRAVENTA CANADA LTD P O Box L-1, Blaine, WA 98230 (800) 663-6556
Language Intervention Software
WHEELCHAIR LIFT
for Children from 14 months
ROBERTSON CUSTOM ELEVATORS 777 Warden Ave, Scarborough,
Ontario M1L 4C3 Canada
RICON CORPORATION 11684 Tuxford Street, Sun Valley, CA 91352
EXPLORATORY PLAY™
(414) 782-1100
REPRESENTATIONAL PLAY™
FRED SCOTT AND SONS 1444 W Rand Rd, Des Plaines, IL 60016
AMERICAN STAIR GLIDE CORP 4001 East 138th Street, Grandview, MO
New!
ACTION/MUSIC™
64030 (800) 821-2041
KEYTALK™
FLORLIFT OF NEW JERSEY 41 Lawrence Street, East Orange, NJ 07017
(201) 429-2200
New!
/ CAN SPELL IT™
CHENEY COMPANY 2445 S Calhoun Road, New Berlin, WI 53151-0188
(800) 782-1222
PEAL SOFTWARE
FLINCHBAUGH CO INC 390 Eberts Lane, York, PA 17403 (717) 854-7720
P.O. Box 8188, Dept E, Calabasas, CA 91302
GARAVENTA CANADA LTD P O Box L-1, Blaine, WA 98230 (800) 663-6556
(818) 883-7849
GIANT LIFT EQUIPMENT MFG CO INC 136 LafayetteRd., North Hampton,
NH 03862 (603) 964-512
TOCE BROTHERS P O 369, Broussard, LA 70518 (800) 782-1222
ECONOL STAIRWAY LIFT CORP 253 Center Street, Cedar Falls, IA 50613
A rural community for children
MAXTON MANUFACTURING CO 007 S Main Street, Los Angeles, CA
90061
with mental retardation
REB MFG INC P O Box 276, Carey, OH 43316
and other handicaps
CONCORD ELEVATOR CO. 2445 S. CALHOUN RD., NEW BERLIN, WI
53151 (800) 882-1222
Beautiful homes with permanent house-
STAIR TRACKS
parent families, small groups, no shift workers,
GARAVENTA CANADA LTD P O Box L-1, Blaine, WA 98230 (800) 663-6556
natural foods, live-in staff.
Waldorf Education curriculum emphasiz-
HOME ELEVATOR.
ing creativity, with academic and practical
ROBERTSON CUSTOM ELEVATORS 777 Warden Ave, Scarborough,
skills for mind, heart, body.
Ontario M1L 4C3 Canada
Curative approach toward individual needs.
BRUNO INDEPENDENT LIVING AIDS INC 430 Armour Court P.O. Box 84,
Wide variety of therapeutic treatments,
Oconomowoc, WI 53066 (414) 67-4990
resident doctor.
CHENEY COMPANY 2445 S Calhoun Road P.O. Box 188, New Berlin, WI
53151 (800) 782-1222
Diverse social and recreational opportun-
AMERICAN STAIR GLIDE CORP 4001 E 138th St. P.O. Box B, Grandview,
ities, custom-built homes, community cen-
MO 64030 (800) 821-2041
ter, school building, craftshops, 60 acres
GIANT LIFT EQUIPMENT MFG CO, INC 136 Lafayette Road P.O. Box 626
N Hampton, NH 03862 (800) 524-4268
rolling woodland.
MED WEST 702 S 3rd Ave, P.O. Box 1557, Harrisburg, PA 17105
International affiliates, founded 1939, nation-
(800) 247-7594
ally recognized.
CONCORD ELEVATOR CO. 2445 S. CALHOUN RD., NEW BERLIN, WI
53151 (800) 882-1222
MCGRAW ENTERPRISES P O Box 642, Plymouth, MI 48170
BEAVER RUN
WAUPACA ELEVATOR COMPANY P O Box 246, Wauapaca, WI 54981
INCLINATOR OF AMERICA 2200 Paxton Street P O Box 1557 Harrisburg,
CHILDREN'S VILLAGE
PA 17105 (717) 234-8065
ECONOL STAIRWAY LIFT CORP 2513ad Center Street, Cedar Falls, IA
FOR INFORMATION CONTACT:
50613
Camphill Special Schools, Inc.
DOVER ELEVATOR CORP Elevator Division, P O Box 2177, Memphis, TN
38101
Glenmoore, PA 19343
(215) 469-9236
EXCEPTIONAL PARENT
APRIL 1989 33
Inva
Great choices
Youthmobile 5000
Youthmobile Jaguar
You're looking at the choice of therapists, parents,
wheelchairs. The Jaguar allows your child more
and kids. Invacare, the industry leader in wheel-
independence and mobility than ever before. Avail-
chairs offers you the widest variety of chairs, colors
able with MCC (Micro Computer Control) features,
and options to meet all the special growing needs
the Jaguar offers the widest range of adjustability
of kids.
and driving control options available in a power
Great choices are what the Invacare Youthmobile
wheelchair.
series is all about. From the Jaguar, our kids power
The Youthmobile 5000 series is our most flexible
chair, to the durable 9000 series. From the sporty
line of kids chairs. Sporty and lightweight, no other
5000 series to our Alvema line of portable strollers.
chair grows with your child like the 5000. Plus it
We help make it easy to make the best choice.
comes in the colors kids like most.
The Jaguar is the right choice in rugged power
The Youthmobile 9000 series combines contemporary
R
care.
in kids' sizes.
Youthmobile 9000
Alvema Erick
design with durability and adjustability. Its comfort
growing needs.
and dependability are just two of the reasons the
For more information write: Invacare Corporation,
9000 offers the most value of any chair in its class.
899 Cleveland Street, Elyria, Ohio 44036. Call
Our Alvema line features outstanding durability,
Toll-Free, Nationwide: 800/INVACARE; In Ohio:
proper positioning and allowance for growth. Thera-
800/362-7415. In Canada, call 416/670-3333 or
peutically designed for exceptional children, the
Toll-Free: 800/668-5324. In Ontario, call
Alvema line offers exceptional looks, portability
800/668-5354.
and maneuverability.
So before you decide on a chair for your child, look
into the outstanding choices Invacare offers you.
INVACARE®
We're sure to have just the right one for your child's
Innovation in Health Care T. TM
ACLD, INC. POSITION PAPER
Eligibility for Services for Persons
with Specific Learning Disabilities
The following is an excerpt from a position paper on the
social skills, appropriate work, good family
eligibility for services for persons with specific learning
relationships, and even the activities of daily living.
disabilities which was approved by the ACLD Board of
Since it varies in its manifestation, the Specific Learning
Directors and the Delegate Assembly.
Disabilities condition in some persons undermines social
interactions in spite of the person's high level of
PREAMBLE
academic attainment.
ACLD recognizes that twenty years have passed
PART II: THE DIAGNOSIS
since the condition or Specific Learning Disabilities was
defined in federal legislation as a handicap. Today, there
The diagnosis of the Specific Learning Disabilities
are still serious questions concerning Specific Learning
condition requires clinical judgment derived from
Disabilities. These include etiology, incidence,
multiple data. No specific test, battery, nor formula can
diagnostic and identification procedures, eligibility
substitute for clinical judgment. The professional or
criteria for services and continuation of services, and
team making the diagnosis is responsible for the
types and intensity of services.
judgment. To help ensure valid diagnostic decisions,
ACLD's position is that Specific Learning
appropriately trained professionals require extensive,
Disabilities is a lifelong handicapping condition and
clinical training with this population. ACLD believes
once validly diagnosed, the existence of this handicap
strongly that the validity of the Specific Learning
need not be questioned again. While the manifestations
Disabilities diagnosis increases when the responsibility
of the condition may change over time, the inherent
for making the judgment is placed with clinicians who
condition persists. Reassessment is needed to monitor
hold advanced professional degrees in generally
progress and develop appropriate plans but is
accepted fields and who have two or more years of
unnecessary to verify whether an individual has Specific
clinical experience with the relevant age group of the
Learning Disabilities.
Specific Learning Disabilities population.
ACLD believes that both the individual and the
In the public schools the determination of the
family have a right to know when the Specific Learning
Specific Learning Disabilities condition must be made by
Disabilities condition is suspected or diagnosed and the
an interdisciplinary team under the regulations for P.L.
right to full information from diagnostic studies even
94-142. ACLD endorses the use of interdisciplinary
when there is no immediate need for special services.
teams.
When an individual has a handicapping condition,
PART I: THE SPECIFIC
she/he has a right and a need to know it. In the case of
LEARNING DISABILITIES CONDITION
Specific Learning Disabilities, the sooner the individual
and her/his family are aware of the condition, the
Specific Learning Disabilities is a chronic
greater the likelihood that early intervention can lessen
condition of presumed neurological origin which
the effects of the Specific Learning Disabilities condition
selectively interferes with the development, integration,
on her/his life. Schools are in a unique position to help
and/or demonstration of verbal and/or non-verbal
ensure an early diagnosis of the lifelong condition and
abilities.
open opportunities for early and continuing
Specific Learning Disabilities exists as a distinct
intervention.
handicapping condition and varies in its manifestations
ACLD reiterates its position that the Specific
and in degree of severity.
Learning Disabilities condition selectively interferes
Throughout life, the condition can affect self-
with one's abilities; consequently, the use of composite
esteem, education, vocation, socialization, and/or daily
scores is inappropriate. Thus a person with Specific
living activities.
Learning Disabilities may have one learning rate and
Specific Learning Disabilities is not synonymous
level of performance for language arts; a second for
with underachievement.
math, handwriting, and logic; and a third for social
The Specific Learning Disabilities condition is
competence. Similarly, composite scores within a single
lifelong and pervasive in nature, and can selectively
subject area may be inappropriate with many persons
interfere not only with learning in school settings, but
with Specific Learning Disabilities. The diagnosis must
also with the attainment or maintenance of acceptable
provide a full description of how the individual learns
36 EXCEPTIONAL PARENT
APRIL 1989
ACLD, INC.
NORTHERN CALIFORNIA
ADAPTIVE LIVING CENTER
and the types of learning that are affected by the
condition together with intervention methods which
can offset those areas of deficit. ACLD believes that it
"A very special
is often preferable that the diagnosis be made by an
home for children
agency other than the one(s) to be accessed for
with special needs."
services.
Once a valid diagnosis of the Specific Learning
Disabilities condition has been made for an
24-HOUR RESIDENTIAL AND EDUCATIONAL
individual, the existence of a life-long handicap need
SERVICES FOR CHILDREN WITH SEVERE
not be questioned again. Acceptance of this
DEVELOPMENTAL DISABILITIES AND
statement should help clarify the issue that the
PROBLEM BEHAVIORS
diagnosis of the condition is a separate issue from the
need for services.
INDIVIDUALIZED PROGRAMS IN
SELF-CARE
PART III: ELIGIBILITY FOR SERVICES;
COMMUNICATION
INCLUDING ACCOMMODATIONS
RECREATION
ACADEMIC SKILLS
COMMUNITY PARTICIPATION
Once a valid diagnosis has been made, the
individual is eligible, and remains eligible, for services
that are appropriate to his/her needs. Some
individuals with Specific Learning Disabilities may
not require specialized services beyond the provision
FOR MORE INF ORMATION
of information about the condition and its effects,
CALL OR WRITE
reasonable accommodations, and appropriate self-
EXECUTIVE DIRECTOR
NORTHERN CALIFORNIA ADAPTIVE LIVING CENTER
advocacy. Others may not require specialized services
P.O. BOX 369 DURHAM, CA 95938
at all times or in all environments. Still others will
(916) 894-2726
require extensive services in order to have the
opportunity to achieve independent living.
All individuals with the Specific Learning
Disabilities condition are guaranteed certain rights,
local laws, regulations, and programs. All such
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EXCEPTIONAL PARENT
APRIL 1989
37
BUT NOT
ENOUGH
TO TELL
THE
TRUTH
Helpful
Developmental
guidelines for
serving the
Needs of
needs of
Siblings
siblings.
"S
ometimes," offered Jenifer,
participated in a four-session workshop for
"when I've done something that
siblings of children with special needs. The
I know my parents are gonna
workshop was designed to help siblings
yell at me for, I tell them Randy did it. Like
express their feelings and concerns, and
when I forgot to flush the toilet and Dad
learn how to handle common, yet thorny
yelled 'who forgot to flush the toilet!' I told
situations. The children's parents
him Randy did it. Then I went into my
participated in a separate group held
brother's room and told him what I had
concurrently.
done. I felt guilty."
The meetings covered material
"Yeah," agreed Nicole, "that's like the
presented in the Sibshop Manual developed
time I broke the cookie jar in the kitchen.
at the University of Washington, and in the
When Mom started yelling, I told her Jason
book Living with a Brother or Sister with
did it. I felt guilty, but not enough to tell the
Special Needs. In particular, common
truth."
conflict and problem situations that siblings
Jenifer is a 10-year-old girl who has a
might encounter were presented, and the
twin brother, Randy, with Down syndrome.
children were asked how they would
Randy has few verbal skills and frequently
handle them. Time was also allotted to
creates situations that are embarrassing for
discuss disabling conditions, special
his three siblings, who are close in age.
education and simple behavior
Nicole, also 10, has a three-year-old
management principles.
brother with Down syndrome. While
The children expressed many feelings
Nicole's brother has not yet embarrassed
about their siblings with disabilities
her through his behavior, Nicole finds it
through role play, group discussion and
by
difficult to tell her friends and neighbors
sharing family stories. When asked to
Helen Stavros and
about his condition.
describe typical feelings, virtually all of the
Richard D. Boyd
Nicole and Jenifer, along with four
children listed embarrassment, pride and
other children aged eight to twelve, had
jealousy: embarrassment when they came
38
EXCEPTIONAL PARENT
APRIL 1989
into contact with the world outside the
became embarrassed or angered by the
family, pride when their sibling learned
ignorance and insensitivity of others. And
something new, and jealousy when their
one eight-year-old girl explained away her
parents spent a disproportionate amount of
brother's delayed development by telling
time with their sibling with a disability.
people he has a hole in his heart, even
Envy was also mentioned by some
though she knew she was not being
whenever a sibling with a disability had
completely honest in doing so.
little or no homework, few household
This gap between the knowing and
responsibilities and fewer expectations
the doing presents an interesting challenge
placed on them by the parents.
for non-disabled children and their parents.
"Sometimes,
The children proved to be
As the children in this group clearly
when I've
knowledgeable and aware of what it means
articulated, they felt guilty whenever they
done something
to have a sibling with a disability,
failed to respond in the way they knew to
benefitting from having open and informed
be best. Their parents, in turn, often became
that I know my
parents. Yet it became apparent that these
frustrated when they saw their non-
parents are gonna
bright and forthright kids had great
disabled children "falling short." Yet it
yell at me for,
difficulty translating knowledge into
would be easy and foolish for parents to
I tell them
appropriate and effective action. Their
vent anger at the non-disabled child, as this
reactions were often based more on the
would only increase that child's sense of
Randy did it."
feelings aroused by a situation than on what
guilt, foster resentment toward the sibling
they knew to be the best response.
with a disability, and deny them the
One 10-year-old girl, for example, told
support and understanding they need to
how she was unable to control her temper
become more assertive.
when her brother waved his hands in front
Children in the preteen years
of her face, even though she could clearly
commonly lack the ability to assert
state that ignoring him was the best
themselves, having been trained most of
response. Others knew how to explain to
their lives to respect authority and avoid
friends or strangers that their brother or
conflict. Those parents who recognize and
sister was disabled, but confessed that their
understand the implications of this
performance broke down when they
developmental stage will be in a better
EXCEPTIONAL PARENT
APRIL 1989
39
EXCLUSIVE RESIDENTIAL SCHOOL
FOR THE SEVERELY RETARDED
& MULTIPLY HANDICAPPED
Private, Non-Profit
Birth to 22 years
Unusual Syndromes (including Rett)
Intense, round-the-clock trained stimulation
Children make substantial progress
24 hour medical services
Extensive physical therapy
Monthly orthopedic clinics
Feeding programs
position to help their children become more assertive.
Augmentative communication
While non-disabled children need to know how
Parental involvement welcome
to handle certain situations, they also need
Community-based Victorian homes
understanding from adults who can provide a forum
Year-round
for discussing what goes wrong and how to behave
differently. Workshops provide one such forum, but
Contact: Gail Charpentier, Dir.
the best and most enduring forum is created by open,
BERKSHIRE CHILDREN'S
honest and caring parents.
COMMUNITY
What can parents do to serve the needs of all
their children? While any answer must, ultimately,
41 Taconic Ave.
depend upon individual circumstances, here are some
Great Barrington, MA 01230
guidelines that can prove helpful:
(413) 528-2523.
Be sure that your expectations for your non-
disabled child are realistic. It's easy to forget,
sometimes, that they are children first, and we cannot
expect them to handle difficult situations like little
adults. For example, it would be unrealistic to expect
Say-It-All and Say-It-Simply
a young child to be able to supervise, alone, a
disruptive sibling while in public.
Let your child know that you also get upset
sometimes and often wish you could have been more
assertive in a particular situation. Sharing an account
of your own shortcomings can ease the sense of shame
and guilt that the non-disabled child might feel over
some incident of his own.
Praise your child whenever she's done
something of which you want to see more. Let her
know specifically what it was that you liked, such as
saying, "I liked the way you played with your brother
today while I was fixing dinner."
Don't expect too much too soon. Progress
often comes in short, sometimes halting steps. Neither
should you be surprised by occasional setbacks, being
sure to give corrections in a gentle, positive manner.
Keep the lines of communication open, paying
Say-It-All and Say-It-Simply are easy to use, voice output com-
munication aids. Features include highly intelligible speech in
attention to the feelings underlying what your child
8 selectable voices, recall of stored phrases with a single key
tells you. Let him know that his observations,
press, built in text-to-speech and detailed manual with step-by-
concerns and suggestions are valued and worthy of
step examples.
discussion.
While Say-It-All is lightweight and has a standard keyboard,
Say-It-Simply allows the size of the response area to be varied
Remember that the non-disabled sibling will
from 1 inch to 12 inch squares.
have occasional negative feelings toward the child
Call us today!
with a disability and that these feelings are normal
Innocomp
and best approached with understanding and not with
33195 Wagon Wheel Drive
Solon, Ohio 44139
(216) 248-6206
shame or guilt.
40
EXCEPTIONAL PARENT
APRIL 1989
WHEELCHAIR ACCESSIBLE
Most importantly, show your child how you
want him or her to behave. There is no substitute for a
HOUSE PLANS
positive example, especially when it is coupled with
the opportunity to practice appropriate behavior
under the watchful eye of a warm, supportive parent.
Finally, help establish a sibling program in
your community by encouraging organizations for the
disabled, schools and early intervention programs to
have a "sibling day" or to sponsor a sibling workshop.
Parents can also establish informal sibling support
groups through their own networks.
Having a child with a disability in the family is
an opportunity for those living with that child to
At Ramsey and Associates our goal is to develop
understand human differences in a way most people
warm, liveable house plans with beautiful exteriors for
never get a chance to experience. Non-disabled
that special person in your family. Our house plans
siblings are in a position to teach others compassion
offer carefully studied features to enhance the quality
of life.
and concern for those less fortunate. Furthermore,
THE LIMITLESS PORTFOLIO
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they have a chance to develop coping skills most
Distinctive Homes with the Physically Disabled
children with siblings don't develop.
in mind with Construction Blueprints Available
For that opportunity to be realized, however,
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these children need positive models and help from the
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adults in their lives if they are to learn to handle
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situations for which there are often no easy solutions.
There will be many lapses between the "knowing" and
Send check or money order to:
the "doing," and the parent who understands this will
Ramsey and Associates
be in a better position to help and will, ultimately,
Department MS
have competent and compassionate children.
RAMSEY
P.O. Box 220
AND
Vilonia, Arkansas 72173
ASSOCIATES
(501) 796-2981
VISA
The authors would like to thank John Hill,
M.S.W., at the Education & Support Program at
Children's Hospital in New Orleans for assisting in the
development of the sibling program.
The Sibshop Manual and Living with a Brother or
Communication
Sister with Special Needs by Donald Meyer, Patricia
Vadasky & Rebecca Fewell are available from
... your child's future depends on it
Exceptional Parent Library. To order, see page 67,
under New Titles.
The Institute of Logopedics
meets the communication,
educational, medical and
behavioral needs of children
with multiple handicaps.
Full-year and summer
Helen Stavros received a master's
programs
in social work from Tulane
University. She is currently a
Daily speech-language
clinical social worker in the child
therapy
psychiatry department of Ochsner
Clinic in New Orleans, Louisiana.
Experienced in
augmentative systems
Call toll-free (800) 835-1043
Richard Boyd has a Ph. D in
In Kansas (800) 937-4644
behavioral disabilities from the
University of Wisconsin at
Madison. He is working as a staff
psychologist at the Golden Gate
Regional Center in San Francisco,
INSTITUTE OF LOGOPEDICS
California, where he lives with his
2400 Jardine Drive Wichita, Kansas 67219
wife, Susan.
Since 1934
EXCEPTIONAL PARENT
APRIL 1989 41
PEER
COMPANIONS
An Alternative
to Summer Camp
by Ann M. Shannon
OUT OF A SERIES of good news/bad news scenarios,
evolved a unique and rewarding summer program for our
son, Eamon, soon to be 12, who happens to have Down
syndrome.
In early spring, Eamon was invited to participate in his
school district's summer program. It is a good combina-
tion of reinforcing basic skills in speech, reading and
math, as well as important components of fun such as
parades and celebrations that convey a camp-like spirit.
38
42 EXCEPTIONAL PARENT
APRIL 1989
Eamon attended last year and enjoyed the
Should I cancel teaching a course, "Survey of the
experience. In late spring, Eamon's Annual Review
Exceptional Child for the Regular Classroom Teacher,"
Team made the decision that he had "abilitied out" of his
at Chicago's St. Xavier College, 35 minutes in the
placement in DLP (Developmental Learning Program)
opposite direction? Should the whole house be upset at
and now belonged in Cross Categorical (a program that
dinner because one of us went to camp? This was the
offered more challenges academically). A side effect of
second good news/bad news scenario.
this decision was that Eamon
For a week we
was no longer eligible for the
vacillated. What would
summer program. That was
be best for Eamon?
the first good news/bad
What would be best for
news scenario.
our entire family?
We applied immedi-
McPike
Eamon has three
ately for SEASPAR, South
siblings, aged 18, 17 and
East Association of Special
15. We have a very busy
Parks and Recreation in
active household.
Illinois, a six-week nationally
One morning that
recognized summer day
lazy second cup of
camp. Although we did not
coffee helped me put a
have first hand knowledge of
lot of pieces together.
the program, parents from
There were three
our local Department of
Eamon and Brian set up for the "Domino Spill."
essential components as
Special Education continual-
far as we were
ly praise not only the creative slant but also the involve-
concerned when it came to a summer program.
ment of their children in these programs.
1). It should be fun.
In early summer, Eamon was accepted. We were
2). It should be with age-appropriate peers.
thrilled. Our excitement was short-lived, however,
3). It should offer an avenue for involvement in
because we quickly learned that the Village of Western
the larger community.
Springs, Ill., where we live, is not a resident member of
Given these components, the concept of a summer
SEASPAR. This meant, among other things, that Eamon
peer companion began to emerge. I phoned the mother
was not eligible for transportation. UGH!!! The nearest
of Brian, a 13-year-old boy who "babysat" for Eamon
child to us had grandparents who were willing to car
several times during the school year. She seemed
pool. But that would have meant a travel time of one-
excited about the possibilities of Brian's "job." (At this
and-a-half to two hours, depending on traffic. The more
point all was so tenuous that the term "job" seemed a
I thought about six weeks of rush-hour car pooling, the
bit like an illusion of grandeur. We soon learned from
more my stomach churned. What were our alternatives?
the amount of Brian's paycheck given each Friday that
EXCEPTIONAL PARENT
APRIL 1989
43
Outdoor
Freedom
The Baby Jogger
R
Mobility and comfort combine for both parent and
child! The Baby Jogger offers new models to suit
Eamon and Brian show their final art projects.
a variety of special needs. Go anywhere with the
this was a real job.) Next, Brian and I spoke. Then
ultimate all-terrain stroller. Travel over gravel, grass,
Brian, Eamon and I spoke. We tried to define the
curbs, even sand and snow with "The stroller for
ground rules. Everyone had input and everyone
runners." Trips to the beach or park are easy with
agreed to the following guidelines.
the smooth-rolling three wheel design. A variety of
1). This was a paid position. Three dollars per
models available for children of all ages. FREE
BROCHURE.
hour was the fee. Brian was to buy a notebook and
bring it each day. In this book he was to keep track of
Racing Strollers Inc.
516E N. 20th Ave.
his hours and any other expenses. On Friday he
Yakima, WA 98902
1-800-548-7230, ext. 6
would tell me his hours. (Incidentally, Eamon always
Safe, stable, endorsed by pediatricians.
checked to see if Brian had remembered the notebook.)
2). TV watching was unacceptable. In fact, this
was the only non-negotiable.
3). Brian would teach Eamon various games and
sports. Upon reflection these included Parchesi,
CHILDREN WITH CEREBRAL PALSY
Chinese Checkers, card games, magic tricks,
NEED COMPREHENSIVE,
basketball, volleyball and skateboard. At one point
Brian asked his mother for new high tops for himself
INTENSIVE PROGRAMS
because Eamon was making more baskets. Brian
figured high top shoes would make the difference.
Because of their multiple handicaps, many children with
4). Each day the boys had the option of walking
cerebral palsy need:
to town, three blocks away, for lunch. Brian's parents
Physical Therapy
Special
own an ice cream and sandwich shop. A running
Occupational Therapy
Educational Programs
account, settled weekly, alleviated daily counting out
Speech and
Specialized
of money. It also gave the boys a freedom. Boland's
Language Training
Medical Attention
Ice Cream Shoppe has a new hamburger as a result of
Communication
Adapted
these lunches, the Eamon Burger, replete with ketchup,
Aids
Recreational Activities
mustard and mayonnaise. Brian couldn't believe that
These and other services are available for children 2 to 21
Eamon never deviated from that order
for an entire
years of age at HMS School for Children with Cerebral Palsy,
summer!
formerly Home of the Merciful Saviour for Crippled Children,
5). The boys would go to the library on alternate
a non-sectarian, residential, licensed private school. Qualified,
experienced staff members work closely with an active group
Fridays. Each afternoon they would select a book and
of consultants in several medical specialties, psychology,
read aloud, alternating pages.
education and speech pathology to provide high quality,
6). The boys would attend the following
individual habilitation and education programs. For
activities at Kaleidoscope Children's Center, a section
information write to:
of our local Department of Recreation, which involves
Diane L. Gallagher, Director
the children in "learning by doing":
HMS School for Children
Cardboard Carpentry
3 sessions
with Cerebral Palsy
Tie-Dye Shirts
4400 Baltimore Avenue
Philadelphia, PA 19104
Art Kids Love Mothers Hate
2 sessions
Domino Spill
(215) 222-2566
44
EXCEPTIONAL PARENT
APRIL 1989
7). Brian would be responsible for walking with
Eamon and picking him up after the classes only
Eamon was taking. These included:
Building an Ant Farm (Big Problem
no ants!)
Kids in the Kitchen (3 sessions
Great Success)
Computers (4 sessions held on Friday afternoon
late, too late)
8). The boys had the option of going swimming
at the community pool. The great by-product was that
Eamon learned the procedures to a tee. He knows
exactly what to take and what is the correct behavior
for a "cool dude," which enables him to get along with
and be accepted by his peers at the pool.
Special Care for
To keep track of all these comings and goings we
made a huge poster for Eamon's closet bulletin board.
Special People
Each morning the boys would run upstairs to see what
Progressive education, home en-
was on for the day. With very little guidance or
vironment for the mentally handi-
supervision, they would decide on the day's doings.
capped child and adult. Opportunity
for educational progress at any age.
A wise pediatrician once told me that parents
Year-round program. Multiple recre-
only get points by hindsight. If that is true, then
ational and social activities - a full
perhaps I should build into my day a lazy second cup
life-style among friends on a 600-
acre bluegrass estate. Est. 1893.
of coffee. By all scales the summer companion
program was a tremendous success. Brian's mother
Phone 502-875-4664 or
write for brochure
THE STEWART HOME SCHOOL
Box 20,, Frankfort, Ky. 40601
Summer Vacation
John P. Stewart, M.D., Resident Physician
July
General
Teeth cleaned
Miller
June
20
11:00
checked
TIGER
Dr
fick
June
COMMUNICATION SYSTEM, INC.
Cut
155 East Broad Street #325
Hair
Rochester, New York 14604
SPIKE
(716) 454-5134
Talking bar code materials
for augmentative communication
A huge poster kept track of all the summer's activities.
and I had lunch a few weeks ago to evaluate the
DRINK
TIGER
summer. These were our observations.
JR.
Eamon, who has definite couch potato
Texas instruments
tendencies, was totally involved; by dinner he would
MAGIC WAND
be exhausted but exhilarated. He was in the
A LOW COST PORTABLE
average bar
VOICE OUTPUT UNIT
community and part of the community all summer
code height:
23/4 inches
Bar Code height 1" tall
long. He wasn't there holding his mother's hand or
standing by her side. He was there with one of the
LAMINATED
3-RING BINDER
guys.
If Eamon used inappropriate language or
56 pages
TIGERbook
responses, Brian would simply say: "Hey, Eamon, we
360 bar codes
5c
NICKEL
don't do that." Amazing how behavior, good and bad,
With a camera strap
for shoulder-carrying
can be taught and caught.
Expansion
In the process both boys became friends, though
vocabulary sheets
PRICES:
Eamon always introduced Brian as "my companion."
TIGER Jr. plus Magic Wand:
$150.00
He understood that Brian was paid to be his
TIGER Jr. alone:
$ 85.00
companion, but that didn't seem to be a problem
TIGERbook Expansion Vocabulary
because they had so much fun. They would spend lots
Sheets; 41 pp.; 940 word Lexicon.
$ 50.00
Bar codes are photocopyable and enlargeable.
EXCEPTIONAL PARENT
APRIL 1989
45
of time in the drug store pondering which comic book
LOOK WHO'S
to buy that week. The pharmacist told me the other
day that he really misses the fellows and perhaps they
could stop in soon.
TALKING!
The train sets came off the shelves and so did the
boxes of Lego. Brian told his mom that he had
forgotten how much fun some of these toys were and
that he was glad to play with them again. After one of
the classes, teasing about girls began. Both boys blush
easily at the mention of a certain girl.
Initially Brian cautioned his mother: "Don't tell
anyone." He was scared to death. He worried about
the comments his peers would make when they saw
him with Eamon. After the first day Brian was ready
to quit. "You don't know what it's like to work so
hard," he told his mother. Her response: "You are
getting paid to work. You are seeing a part of life we
We are. People are.
haven't seen in our family. Someday, Brian, this
To find out what they're saying,
experience might be part of your life work which is
unknown to us now."
call us.
"Classes broke the ice," related Mary Boland.
Brian, at 13, was the oldest participant. He didn't
seem to mind because each event was structured at the
MORE MEMORY
VOiS 136
TAPE BACKUP
individual level. Each worked at his own pace, all the
MULTIPLE USER CAPABILITY
TEN VOICE PITCHES
OVER 12,000 ENTRIES
PORTABLE
LONG BATTERY LIFE
LIGHTWEIGHT
while sharing and learning and caring.
LOCAL SUPPORT
FUNDING INFORMATION
Was this a one-way experience? I don't think so.
A classmate of Brian's somewhat in awe told her
))))IIIPhonicEar 250 Camino Alto, Mill Valley, CA 94941, 800/227-0735
mother about Brian Boland's great job.
The owner of our local family supermarket tells
about watching two boys just being boys. "It's neat."
Brian's parents say he has become more self-
confident. He engages in conversation more freely.
He is very proud of his earnings and his purchases.
He lights up when Eamon goes into Boland's for a
snack or they meet unexpectedly on the street.
In late spring and early summer the good
news/bad news scenarios were filled with ambiguity.
How were we to know it would turn out to be a very
special summer for two boys, their families and the
community.
A transitional residential/vocational
Anne Shannon received her
program for 30 young adults with
master's in education from Trinity
College in Washington, D.C. She
learning disabilities, ages 17-35.
is currently a lecturer at St. Xavier
Individualized instruction in independent
College in Chicago, where she
living, work habits, job acquisition, and
teaches a survey course on
exceptional children for the regular
social skills. Licensed. Founded 1972.
classroom teacher. Mrs. Shannon
Call (203) 397-1714.
lives in Western Springs, Illinois
with her husband, Peter, and their
children, Peter, 19, Stephen, 17,
Chapel Haven
Heather, 16 and Eamon, 12.
1040 Whalley Ave., New Haven, CT 06515
46
EXCEPTIONAL PARENT
APRIL 1989
"I
CAN"T."
At Apple Computer, we're working to eliminate the two
most disabling words in the English language.
That's why we've established the National Special Education
Alliance — a growing network of community centers where
individuals with disabilities can find valuable resources. Discover
how microcomputers can foster independence. Share ideas with
experts and peers. And learn about the latest enabling technology.
If you'd like additional information concerning the NSEA,
call 800-732-3131, ext. 275. It could add a lot to your life. And
subtract a couple of words from your vocabulary.
The power to be your best.™
© 1988 Apple Computer, Inc. Apple and the Apple logo are registered trademarks of, and The power to be your best' is a trademark of Apple Computer, Inc.
WHAT'S HAPPENING
SUPPORT GROUP NEWS
syndrome with another family. The
and Education, Scott and White
Network hopes to bridge this gap.
Clinic, 2401 South 31st St., Temple,
In Touch With Kids is a net-
The Network will not be affili-
Texas 76508, (817) 774-2350.
work established by the National
ated with any hospital, craniofacial
Spinal Cord Injury Association to
center, etc. The founders, Hope
TRIPOD
help parents with similar experiences
Charkins-Drazin and David Drazin,
get in touch with each other. It is a
are parents of a young son with
TRIPOD is a non-profit organi-
support system intended to provide
Treacher Collins syndrome, as well
zation committed to helping families
an opportunity for sharing ideas,
as being mental health professionals.
raise their hearing-impaired children
feelings, resources and innovative
The Network is already a co-
in an informed and positive way. Six
problem solving techniques and
llaborative effort among families.
years ago, parents, educators and
solutions through telephone and
Fifteen families from throughout the
community leaders dismayed by the
written communication between
United States have already expressed
confusion surrounding childhood
families of children with spinal cord
an interest in participating. The first
deafness and the lack of quality
injury. NSCIA's quarterly magazine
newsletter will be published soon,
education for hearing-impaired
Spinal Cord Injury Life will feature a
for which a mother has designed the
children joined forces and founded
section to keep you "In Touch With
logo and a family is researching and
the TRIPOD school.
Kids."
writing an article comparing differ-
But children are not TRIPOD's
To become a member of NSCIA
ent models of bone conductor
only students. Parents, grandparents
and get "In Touch With Kids,"
hearing aides.
and family friends are welcome at
annual dues are $10.00. For more
For more information and to
TRIPOD and participate as
information contact NSCIA, 600 West
join, contact: The Treacher Collins
volunteers, learn communication
Cummings Park, Suite 2000, Woburn,
Family Network, P.O. Box 5,
skills and get up-to-date information
Mass. 01801. Telephone: (617) 935-
Concord, N.H. 03302, (603) 226-4371.
from the Grapevile, our national toll-
2722 or 1-800-962-9629.
free hotline. Medical and educa-
Families with children who
tional professionals are always on
Sick Kids [need] Involved
suffer from Intractable Seizure
hand to answer questions and talk
People, Inc. (SKIP) has announced
Disorder are invited to join a new
about concerns. Basic, fundamental
the availability of a new family
support group.
information is provided so each
support handbook entitled, Families
The founders hope to exchange
family can make its own, informed
to Families: The Home Care
information, request suggestions for
decision as to what is best for their
Experience. Written by Karen A.
special problems, keep each other
child.
Shannon, Karen Crawley Buckholtz
abreast of the latest in research and
The Tripod Grapevine is a
and Linda Jennings, R.N., the
technology, and in general allow
national, toll-free hotline for anyone
handbook offers insight for new
each member to know that they are
with questions about raising and
families who have children with
not alone. A newsletter for the mem-
educating a hearing-impaired child.
disabilities who may need medical
bership is also planned.
In operation since 1983, this service
support management. Topics range
For more information on the
handles more than 100 calls monthly.
from sharing initial feelings to
organization and newsletter, contact:
Nationally call 1-800-352-8888; in
answers resolving conflicts such as,
Barbara Schwan, 29 Melrose Terrace,
California call 1-800-346-8888. Both
"Is it my turn to help?"
Middletown, N.J. 07748, (201) 957-
numbers are voice and TDD
The handbook is available
0714.
accessible.
through SKIP, Inc., 216 Newport Dr.,
Severna Park, Md. 21146 at $7.50.
The USA Sotos Syndrome
SOCIAL SKILLS PUBLICATION
Parent Support Group's next
The Treacher Collins Family
meeting is planned for July 22 & 23,
The National Information
Network is an emerging organ-
1989. The meeting will be in
Center for Handicapped Children
ization whose primary goal is to act
Arlington, Texas, close to Six Flags
and Youth's (NICHY) News Digest
as a support for and provide a net-
and other entertainment. There will
No. 6 discusses "Social Skills." This
work to families affected by Treacher
be an invited speaker, and an inter-
short report offers insights into
Collins syndrome.
esting program is being planned.
methods that have been used to
Due to the rarity of the syn-
Parents and professionals interested
change children's behavior and help
drome, many families feel isolated
in learning more about the history of
them acquire social skills.
and do not have the opportunity to
Sotos syndrome are invited to attend.
Write for the free booklet:
meet another Treacher Collins child
For more information please
NICHY, P.O. Box 1492, Washington,
and discuss issues particular to this
contact Marilyn Brandon, Research
D.C. 20013.
48 EXCEPTIONAL PARENT
APRIL 1989
WHAT'S HAPPENING
AFB INFORMATION NETWORK
from thoughtlessness or prejudice
Law and the Handicapped in Los
against people with disabilities. "We
Angeles. Most recently he served
Need information on
plan to go wherever we are needed
as deputy constituency director for
legislati ve issues affecting blind and
to rid this nation of disability dis-
presidential candidate Mike Dukakis.
visually impaired people? If so, the
crimination," said Timothy M. Cook,
Filed in February, the class-
American Foundation for the Blind
founder and director of the NDAC.
action suit also names the Metropoli-
(AFB) has established the "AFB
The NDAC's first act was to file
tan Transportation Authority and
Information Network" to provide
a class action suit in U.S. District
various officers and directors of the
timely and accurate details on
Court in New York against the Long
L.I.R. and the MTA as defendents.
legislation and regulations of concern
Island Railroad, alleging that it
For more information about
to blind and visually impaired
reconstructed four commuter rail
the NDAC and its work, contact:
people, their families and friends,
stations without providing disability
Timothy M. Cook, Director, National
and professionals in the field.
access. Federal and state law require
Disability Action Center (NDAC),
To enroll in the Network, write
that access must be provided when a
2021 L St., N.W., Suite 800,
American Foundation for the Blind,
station is rebuilt.
Washington, D.C. 20036,
Governmental Relations Department,
The suit contends that the
(202) 467-5730 (Voice/TDD).
1615 M Street, N.W., Suite 250,
entrances at each of the four stations
Washington, D.C. 20036 or call Alan
were completely redesigned and
TECH-TAPES ANNOUNCEMENT
Dinsmore, legislative network
rebuilt but remain inaccessible to
coordinator, (202) 457-1495. You will
people with physical disabilities.
Effective March 31, 1989, the
receive a card listing a wide range of
Cook, 35, who has a walking
Center for Special Education Tech-
concerns, from aging and appropria-
disability, has advocated for dis-
nology is no longer operating the
tions to transportation and voting
ability rights for the past 10 years.
TECH-TAPES message service.
accessibility.
He worked for the Civil Rights Divi-
When TECH-TAPES was intro-
Indicate on the card which
sion of the U.S. Department of Justice
duced in late 1985, the Center's goal
issues interest you, and about six
and also served as the executive
was to provide current information
times a year the Network you will
director of the Western Center for
about technology and its use in
receive alerts targeted to the issues
you selected. These alerts will briefly
tell you what the legislation or
regulation is, what advocates are
doing about it, and specifically how
Put Laureate's award winning
you can be involved. If you notify
the Network that you responded to
software to work for your child.
an alert, you will receive a follow-up
report that tells you the results of
Computers are powerful tools. Effectively harnessed, they
your advocacy efforts.
can open new worlds for your child.
All alerts will be posted on
But quality software is essential. You need programs
popular databases including
CompuServeᵀ, 4-SightsᵀM,
designed by people who understand children with special needs.
SpecialNet™, and SCAN™.
Programs that are easy-to-use, exciting, flexible, and
effective.
NATIONAL DISABILITY ACTION
Laureate offers the quality you need.
CENTER
To learn how your child can benefit from
The National Disability Action
Laureate's special education
Center (NDAC), a new civil rights
software, write or call. Ask
advocacy organization headquar-
for our free catalog.
tered in Washington, D.C., seeks to
provide representation to persons
with physical and mental disabilities
who have been subjected to exclu-
sion, segregation or any other form
Laureate Learning Systems, Inc.
of discrimination.
Dept. E-7
The NDAC plans to identify
110 East Spring Street
Winooski, VT 05404
incidents of discrimination stemming
(802) 655-4755
EXCEPTIONAL PARENT
APRIL 1989
49
WHAT'S HAPPENING
DMP
special education. At that time there
Critical Consumer Reports address
was a need for basic, introductory
the technology needs of teachers,
information about technology and
parents and adults with disabilities.
DURALINE
few resources provided such
Both the Critical Consumer
MEDICAL
information.
Reports and the Resource Inventories
A recent assessment of the
PRODUCTS
are available by writing to: Center
system showed that the information
for Special Education Technology,
provided by TECH-TAPES is, in its
1920 Association Drive, Reston, Va.
present form, outdated. The service
22091.
DURALINE offers home
is no longer the source of current and
service of incontinent and
timely information. The Center also
HOUSING NEWSLETTER AND
ostomy products with the
recognized that the number of alter-
FINANCE GUIDE
nate sources of information has
understanding and care
a customer deserves.
increased dramatically over the last
The Housing Technical Assis-
three years. Basic information about
tance Project announces the publica-
technology and its use in special
tion of its guide to finance strategies,
education is more readily available
which is designed to increase oppor-
now than it was in 1985. As a result
tunities for housing for people with
of these findings, the decision was
disabilities. This free guide should
made to discontinue the TECH-
be available in the spring.
TAPES service this year.
The Project is a joint effort of
The Center will continue to
the Association for Retarded Citizens
provide support to those seeking
and the National Association of
introductory information about the
Home Builders and its National
use of technology. Over the next
Research Center to provide technical
three years, the Center will focus its
assistance in the financing and
development efforts on selected
designing of housing for people
topics or themes within special edu-
with disabilities. The project is
cation technology. New information
funded under a contract with the
products will be developed to
Department of Housing and Urban
address high interest topics. These
Development (HUD).
will include state and topical
In addition to the publication of
"Resource Inventories" and a series
this guide, the project provides infor-
Toll Free
of "Critical Consumer Reports."
mation and technical assistance and
1-800-654-3376
The inventories have been
is publishing a free monthly bulletin
developed to encourage wider use of
with updates on project activities and
"FRIENDS" informative
existing information resources. The
current information on the design
monthly newsletter
Center will produce a technology
and finance of housing for people
Most orders shipped within
inventory for each state as well as
with disabilities. The bulletin is
24 hrs. via UPS
inventories on specific subjects that
Automatic delivery
distributed upon request.
will include national information.
Member of HIDA,
The Finance Strategies Guide
NAMES, and OADMEC
The first six topical Resource
will include tips on the housing
Inventories available will be:
Call or write for catalog
development process, descriptions of
Free Samples of selected
assistive devices, augmentative
funding mechanisms and profiles of
items
communication, Apple Alliance
some successful and innovative
Plain packaging upon
members, Rehabilitation Engineering
projects to provide housing options
request.
Centers, product availability
in integrated settings.
Business hours
resources and a general national
The guide focuses on the deve-
9 to 5 E.S.T.
technology inventory. In the future,
lopment of linkages among members
Monday thru Friday
the topical inventories may expand
of the nonprofit community, the
to cover disability specific
housing industry and people with
DISCOVER
VISA
technology as well.
disabilities in order to address the
The Critical Consumer Reports
need for affordable, accessible
DMP
DURALINE
are fact sheets aimed at specific
housing. Cooperation among these
populations of special education
groups can help to ensure the deve-
7-13 E. MAIN
P.O. BOX 67
technology users. The first three
lopment of workable projects spon-
LEIPSIC, OH 45856
50
EXCEPTIONAL PARENT
APRIL 1989
WHAT'S HAPPENING
sored by nonprofit groups, while
The network matches students,
Currently, there are about 80
also improving access to housing in
some with special needs, from the
schools on-line, including some
the community and providing
United States, Canada, New Zealand,
special education programs. Third
consumers meaningful choices.
Great Britain, France, Germany,
and fourth grade classrooms are the
For more information on
Sweden, Japan and South America
most active users of the service, but
housing issues, the Fair Housing
to establish a fun and educational
some in-home private users are
Amendment of 1988, technical
exchange between the countries.
involved in Pals Across the World.
assistance in finance and/or design
International computer
Users can choose international
or to receive the free guide and/or
communication is possible through
or domestic computer pals. Pals
bulletin, contact: The Association
each country's electronic mail
Across the World charges $5 a month
for Retarded Citizens, Governmental
service. Participants simply send
for basic services, and costs average
Affairs Office, Bill Mitchell, Project
messages to another system through
$30 a month for an active, inter-
Coordinator, 1522 K Street NW,
an international network of phone
national correspondence; domestic
Suite 516, Washington, D.C. 20005
lines and satellite connections.
costs are significantly lower.
(202) 785-3388.
In the United States, Pals use
For more information about
the Dialcom electronic mail system,
Pals Across the World, contact Jim
PALS ACROSS THE WORLD
which is accessible through either
Erwin, 4974 S.W. Galen, Lake
TELENET, TYMNET or a national
Oswego, Ore. 97035, (503) 697-4080
Pals Across the World is an
toll-free number. Any computer with
or (503) 635-0338.
international computer writing pro-
a modem and telecommunications
ject for students grade three and up.
software can reach Dialcom.
Now truly a worldwide system, the
A class of youngsters with
network began as the "Australaskan
physical disabilities in Great Britain
Writing Project," which matched a
is organizing a chess tournament by
class in Fairbanks, Alaska, with
electronic mail, as well as natural
students in a school in Australia.
and social history projects.
Elementary and Secondary
St. Coletta School
Pre-Vocational and
Special Education
Vocational Training
JEFFERSON WISCONSIN
St. Coletta School, founded in 1904, offers
Additional services enhancing the academic program include:
a year-around academic residential program
Counseling - personal and vocational
for mentally retarded children and
Socialization skills
adults (ages 6-25).
Personal living skills
Transitional home living
Speech and language development
Music and art
Adaptive physical education and swimming
Other St. Coletta programs include habili-
Physical and occupational therapy
tation/vocational training, adult worker, Alverno
for further information contact:
unskilled nursing care home and Coletta-James
Sister Elaine Weber, Administrator
transitional group home.
St. Coletta School
Route 1, Box 43
Jefferson, Wisconsin 53549
Telephone (414) 674-4330
EXCEPTIONAL PARENT
APRIL 1989 51
FROM THE BOOKSHELF
reported that they continued to feel
welcome. Respite services are not
sad long after they first learned of
available in some communities,
their grandchild's disability, but 57%
making this a most valuable contri-
expressed eventual acceptance of the
bution to the family. Furthermore,
ORDINARY
problem.
because of their community contacts
FAMILIES
Grandparents may be
grandparents may be able to provide
mourning at the same time as the
the family with access to services
Spacial
parents. In the crisis-laden initial
within the community. For example,
period of discovery, both the parents
as noted by Vadasy and colleagues
CHILDREN
and the grandparents may be experi-
(in press), through the grandparents'
encing great loss and grief; they may
church group, the family might gain
A SYSTEMS APPROACH
therefore be unable to be supportive
access to child care, special equip-
TO CHILDHOOD DISABILITY
of one another. According to Gable
ment, and other types of support.
and Kotsch (1981), grandparents may
Perhaps the most important
be in a state of "diminished capacity"
type of help from the extended
for providing help to the child's
family is emotional support. The
Milton Seligman and Rosalyn Benjamin Darling
parents. Whatever the initial reac-
support of grandparents during the
tions, professionals need to be
initial diagnostic and "first knowl-
cognizant of what different family
edge" phase and throughout the
Ordinary Families,
members are experiencing so that
child's development adds immea-
Special Children:
they can take these reactions into
surably to the parents' ability to
account in counseling.
cope, and it provides excellent role
A Systems Approach
[W]e have suggested thus far
models for siblings as well.
to Childhood Disability
that grandparents, through their lack
"You think that after you've
of support, can be a source of consid-
raised your children you can stop
By Milton Seligman, Ph.D. &
erable consternation to the nuclear
being a parent and become a person
Rosalyn Benjamin Darling, Ph.D.
family of a disabled child. The sense
again. And then your adult child
of threat and vulnerability, the loss
experiences tragedy or loss, and your
The following excerpt from Chapter Six:
they experience, the ambiguity the
heart aches with the knowledge of
Effects on Fathers and Grandparents
situation holds for them, their denial
your own importance and how you
has been reprinted with permission from
and lack of acceptance can indeed be
yearn to go back to the days when a
the publisher, Guilford Publications,
burdensome for the family. How-
Bandaid and a kiss could fix any-
Inc.
ever, perhaps for most families with
thing. Who are we to try to advise
a disabled child who have living
our children? How can we see
Although we know little about
extended family, the situation may be
beyond the moment, how can we
how grandparents react to the birth
more positive. Indeed, as Vadasy
diminish their pain or give them our
of a grandchild with a disability, it
and Fewell (1986) report, mothers of
patience and our constancy, and try
is likely that they experience a
deaf-blind children ranked grand-
to keep our own hope alive" (Click,
mourning period for the loss of the
parents high on their list of supports.
1986, p. 3).
idealized grandchild they had
Grandparent contributions to
"From the very beginning,
expected. Just as the parents experi-
the nuclear family can be many and
there was no question that she was
ence the "death" of the expected
varied. For example, Vadasy and
accepted, just like any other child
normal, healthy child, so, too, may
colleagues (in press) conceive of
born in our family. I remember how
the grandparents feel a great loss and
grandparents as valuable resources
the whole family rallied. They said
mourn the death of what they had
to their grandchildren and the rest of
that she would be fine, and it meant
wished for. They may go through
the family. Due to their experience,
a lot to us to have that family sup-
the same stages as the parents:
grandparents have much to offer in
port. They sent us cards and flowers
denial, grief, anger, and eventually
advising about child care, providing
and gifts and did all the things you
acceptance. Reporting on the react-
access to community resources, and
do when a baby is born. And I think
ions of grandparents who attended
in sharing coping strategies that
that was so important, because, after
the grandparents' workshops at the
helped them in the past. Because
all, she was a baby first, and then a
University of Washington, Vadasy
they also have time available, they
baby who had problems" (Vadasy et
and colleagues (in press) report that
can assist with shopping, errands,
al., in press).
their initial reactions were most often
and child care; and any type of
Grandparents can thus be a
sadness (67%), shock (38%), and
respite from the daily chores of
source of emotional support and
anger (33%). Forty-three percent
caring for a disabled child is
instrumental assistance; but, as noted
52 EXCEPTIONAL PARENT
APRIL 1989
FROM THE BOOKSHELF
above, they can also add to the
alistic expectations for their grand-
ject at Vanderbilt University (Gabel &
family's burden when they are not
child's potential. Conversely, they
Kotsch, 1981). The extended family
accepting of their grandchild and
believe that access to accurate infor-
component consists of bimonthly
fail to be supportive. The question,
mation can contribute to the grand-
evening clinics for grandparents and
then, is how professionals can help
parents' acceptance and resultant
other kin. During the clinics, thera-
those grandparents who wish to be
support.
pies are explained, educational pro-
involved and useful as well as those
From their research, Vadasy
grams are reviewed, and a portion of
who are struggling with their
and colleagues (in press) found that
the meeting is opened to questions.
feelings and, as a result, find it
grandparents were lacking in a
Gabel and Kotsch report that the rel-
difficult to come to terms with the
number of areas. For example, they
atives are more understanding and
family's crisis.
wanted to have more information on
helpful after attending the family
Vadasy and colleagues (in
available therapies for their grand-
clinics. Sonnek (1986) reports on a
press) believe that grandparents have
child, know more about the child's
number of localities that have
similar needs to those experienced by
disability, have some idea of what
extended their programs for disabled
the parents, namely, support and
the child's potential might be, and
children to include nuclear and
information. Based on the notion
the like. They often questioned
extended family members. Although
that most grandparents want to be
whether they were doing the right
the inclusion of the extended family
supportive and can potentially be
thing with their grandchild and
in existing programs seems to be
helpful to the family emotionally and
expressed concern about the future.
gaining more acceptance, there is
instrumentally, Vadasy and col-
Based on these and other concerns,
little empirical evidence regarding
leagues developed the grandparents'
the University of Washington grand-
these individuals' effectiveness in
workshop model at the University
parents' workshop model was
supporting the immediate family.
of Washington in Seattle. The Seattle
developed (Meyer & Vadasy, 1986).
Based on the belief that grand-
researchers believe that grandparents
Another program sensitive to
parents are important resources and
can add to family stress if they lack
the needs of the extended family is
that their involvement benefits them-
adequate information or have unre-
the Family, Infant, and Toddler Pro-
selves as well as the nuclear family,
WORKOUT
U.S.A.
THE TIME IS NOW
Bancroft
A Tradition of Excellence
Haddonfield, NJ
Planning the future for the individual with
Mullica Hill, NJ
developmental disabilities is a Bancroft specialty.
Owls Head, ME
(609) 429-0010
EXCEPTIONAL PARENT
APRIL 1989 53
FROM THE BOOKSHELF
we agree with Vadasy and colleagues
Meyer, D.J., & Vadasy, P.F. (1986).
(in press) when they remark that "all
Grandparent workshops: How to
professionals would be wise to look
organize workshops for grand-
parents of children with handicaps.
more closely at the extended net-
LIVING with
Seattle: University of Washington
works of the families in their pro-
Press.
DIFFERENCE
grams to appreciate the contributions
that extended family members, like
Sonnek, I.M. (1986). Grandparents
grandparents, make, and to recog-
and the extended family of handi-
capped children. In R.R. Fewell
nize and foster their concern for the
& P.F. Vadasy (Eds.), Families of
Families with
child and family." Sonnek (1986) also
Handicapped Children (pp. 99-120).
Dwarf Children
supports this view when she states
Austin: Pro-Ed.
that "it appears the grand-parents, to
date, have been an unrecognized and
Vadasy, P.F., & Fewell, R.R. (1986).
Mothers of deaf-blind children.
possibly an underutilized resource in
In Fewell & Vadasy, Familes of
JOAN ABLON
the study of the nuclear family"
Handicapped Children (pp. 121-48).
(p. 108).
photographs by Daniel Margulies
REFERENCES:
Reprinted with permission from
Click, J. (1986). Grandparent concerns:
Ordinary Families, Special Children
Living with Difference:
Learning to be special. Sibling
by Milton Seligman and Rosalyn
Families with Dwarf
Information Network Newsletter, 5,
Benjamin Darling, © 1989 The
Children
3-4.
Guilford Press, New York. Copies of
the book may be purchased through the
Gabel, H., & Kotsch, L.S. (1981).
By Joan Ablon
Extended families and young
Exceptional Parent Library at $30 per
handicapped children. Topics in
copy, plus postage and handling, see
The following excerpt from
Early Childhood Special Education,
page 67.
1, 29-35.
Appendix B: Impact of Child
Disability and Physical Difference on
the Family has been reprinted with
permission from the publisher, Praeger
SNUG AS A BUG IN A
SNUG SEAT!
Publishers. Although written for
professionals, this book has valuable
information for parents.
Cummings et al. (1966) noted
that most parents are profoundly
affected by the attributes of their
children. Variations in physical or
mental characteristics that are con-
sidered "deficiencies" or "handicap-
ping" conditions may seriously
influence parents' perceptions of
their own identity and self-worth,
bringing forth expressions of anxiety,
loss, and depression. Parents' own
fulfillment and evaluations of them-
A completely adjustable seating system designed for infants and small
selves thus may be at stake in the
children that provides proper positioning, without looking like "special"
persons of their children and the
equipment. The "SNUG SEAT" comes with a standard set of poly-
normalcy for the family.
ethylene foam pads which are used to support and position the child. In
[I]n a remarkable study of the
less than an hour, a qualified seating specialist can fit a child on site,
mothering of thalidomide children,
place the cover over the shell, and the system is ready for use. The
Roskies (1972) presented a psycho-
"SNUG SEAT", which comes in two sizes, is versatile enough to be used
social working model for the presen-
as a crash approved car seat or interface with stroller and trolley bases.
tation and analysis of her data.
A multi-positional acrylic tray is available for feeding and table top
Stated Roskies:
activities. For more information, please call or write:
We formulated, then, a working
SNUG SEAT, INC.
model in which, basically, we
P.O. BOX 1141, MATTHEWS, NC 28106 704-847-0772
54
EXCEPTIONAL PARENT
APRIL 1989
FROM THE BOOKSHELF
hypothesized that the birth of an
In common with mothers of all
REFERENCES
obviously defective child could
children, the course of development
Cummings, S.T. (1966). Effects of the
create a very specific type of crisis.
exacts a continuous process of adap-
Child's Defieciency on the Mother:
The essence of the crisis lies not
tation and readaptation of a chang-
A Study of Mothers of Mentally
only in the narcissistic injury to
ing mother to a changing child. In
Retarded, Chronically III and
the parent, or the need to mourn
this sense the rearing of a disabled
Neurotic Children. American Journal
the wished-for normal child
child resembles the rearing of a
of Orthopsychiatry, 36, 595-608.
(Solnit and Stark, 1961), but also
normal child. But for the mother of
Roskies, Ethel. (1972). Abnormality and
in the fact that the existing child
the disabled child, the normal devel-
Normality: The Mothering of
embodies a basic contradiction.
opmental crises are intermingled
Thalidomide Children. New York:
To put it in its crudest terms,
with an additional continuous crisis.
Cornell University Press.
living children are taken home,
The unclear and constantly changing
Solnit, A.J., and Startk, M.H. (1961).
caredfor, loved, and identified
amount of normality and abnor-
Mourning and the Birth Defective
with, while dead children are
mality embodied in the handicapped
Child. Psychoanalytic Study of the
buried. The child who is living
child makes the mothering of such a
Child, 16, 523-37.
but defective is an unknown
child an adventure in two different
combination of the two. Thus,
cultures. At times, the rules of the
immediately, the mother is con-
culture of normality are more rele-
Reprinted with permisssion from
fronted by the dilemma of
vant, while at other times the rules
Living with Difference by Joan
deciding whether her child is
have to be taken from the culture of
Ablon, © 1988 Joan Ablon, Praeger
normal enough to induce the
abnormality. Often it is difficult to
Publishers, New York. Copies of the
mutuality of mother and child,
predict in advance which would be
book may be purchased through the
or whether he is so defective
most relevant. And frequently the
Exceptional Parent Library at $39.95
that he no longer arouses the
choice involves an overt conflict
per copy, plus postage and handling,
emotions and responses
between two equally valid but incon-
see page 67.
habitually aroused by a child
gruent possibilities (pp. 20-21).
Pear Mom and Dad.
Toddy I went to the
Special Olympics and
I won a meda 1.
Love,
Joe
"To help each resident reach his or her highest level of achievement,
whatever it may be."
THE WOODS SCHOOLS
The Woods Schools is committed to
For complete details, call the Director of Admissions
providing services of the highest quality.
at (215) 750-4031 or write: The Woods Schools,
In addition to being fully licensed by the
Commonwealth of Pennsylvania, The
Langhorne, PA 19047.
Woods Schools is accredited by CARF.
EXCEPTIONAL PARENT
APRIL 1989
55
FAMILY LIFE
"This has been a
miserable fall."
Problems of Moving to a New Community
"T
his has been a miserable
It wasn't clear to either of of us what
assure him that we were happy with
fall, and we really don't
was happening.
his school performance and we felt
know what to do," Tim
"At first we discussed the
- or certainly I did - - that sooner or
Charles explained. "Our nine-year-
problem with Billy. He would just
later he would do better.
old son, Bill, is miserable in school.
look sad and get teary. As unhappy
"This didn't seem to help very
Bill has cerebral palsy; he is in a
as he seemed to be, it also seemed to
much. So I suggested that Ruth talk
wheelchair. Also, when people first
me that he was learning a great deal.
to his teacher. That meeting only in-
meet him, they may not understand
I just looked at the books he was
creased our concerns. Ruth said that
everything he says. Since we have
bringing home and the work that he
Mrs. Abrams was understanding of
just moved to this town, Bill has
Billy's struggle academically and
started a new school. Ruth and I had
explained that he was doing as well
mixed feelings about moving. I was
as any new child does in adjusting to
promoted in my company about a
a new school. She was described her
year ago, but my new office was in a
efforts to reassure Bill. Ruth also
building in the next town.
noticed was that this was a much
"Billy was doing very well in
more openly-structured classroom
the school that he was in, and we
than the school Bill came from and
had a nice life in that community.
there are a lot of kids competing for
We had grown up in the town; we
the teacher's attention.
had a lot of friends, and Billy was
"In the old school the children
doing as well as we could expect.
had to wait to take their turns. In his
So we didn't move, and I commuted
new class, where Billy is reluctant to
almost 100 miles a day. At the end of
speak up, Ruth feels he is getting less
the year I was exhausted. It seemed
than he needs. When she watched
to me I was spending more and more
the playground during recess, she
time on the road and less and less
also noticed that kids were teasing
time with Ruthie and Billy.
Billy and that he was alone while the
"We had both heard good
other kids were playing. Basically
things about the schools in the town
"Ruth is afraid that I would
nobody was talking to Billy. And
that we now live in. Supposedly
only make things worse."
even in the classroom, she recalled,
they are excellent academically, and
he sat by himself.
we heard they also have had some
was producing. There is no question
"About a week ago I decided
success with children with disabili-
that this school system is much more
that I should go take a look myself.
ties. So, we moved. I was more
demanding than Billy's previous
We began to ask Billy about friends;
anxious to move than my wife.
school. But at the same time, his
he was in tears. He said that the kids
"From Billy's first day of school
grades aren't as good. I thought that
in this town just were different. They
there have been problems. He was
that was the reason for his disap-
didn't like him, and he would never
reluctant to go to school the first day.
pointment. I spent a lot of time at
be liked. I called Mrs. Abrams about
Ruth spent a lot of time taking him
night asking Bill if he wanted help
the teasing and she seemed very
to school and trying to reassure him.
with his homework. I was trying to
resistant and I sounded resentful.
56
EXCEPTIONAL PARENT
APRIL 1989
FAMILY LIFE
It was almost as if I was talking
again. I'm happy with the house
mid-30s spoke softly. "Tim is much
about something that would damage
and the neighborhood and especially
more self-assured than I am. He is
the image that they had of
with the short commute.
much more willing to speak his
themselves as a school. I also noticed
"It's here where Ruthie and I
mind. He's happy with his work
that the youngster next door doesn't
disagree. Although she doesn't
and things are easy for him.
play with Billy at all. Occasionally
really say it, she spends a lot of time
"Until Billy was five, he didn't
I've heard him mimic Billy's speech
talking about the old neighborhood.
spend much time with him. Tim
in the backyard.
I wish that she would begin to see
seemed to be much more depressed
"I think something should be
something more positive about
about Billy's progress than I was.
done. I want to talk to our neighbor
where we live. She also is much
But once Billy entered school and he
and I want to talk to the principal of
more reluctant to challenge what's
began to show that he could learn,
the school, and I'm prepared to talk
going on."
Tim's interest increased. So for Tim,
to whomever is necessary to make
the fact that this is a better school
sure that there's more acceptance of
don't think Tim under-
"I
system and that Billy is doing more
Billy. Ruth is afraid that I would
stands either Billy or me."
in school is pleasing to him.
only make things worse. At the
Ruth Charles, a short,
"The town that we grew up in
same time I don't want to move
somewhat chubby woman in her
was just simpler for all of us. We
Illustration by Natalia Raphael
Rapharl
EXCEPTIONAL PARENT
APRIL 1989
57
FAMILY LIFE
knew we were destined to get
without any trouble. But I still
work again. I haven't been in touch
married since we were in high
haven't found ways to fill my days.
with my old friends because it's a toll
school. We both have families and
They just seem sort of empty. I
call to where we used to live;
friends there. When Billy was born,
nobody's dropping by; nobody's
there were a lot of people who we
coming by; and the few times we
could turn to for help. Even during
have visited it's a big effort to get
Billy's first year, when I don't know
Billy pulled together, get the wheel-
what really went on except that both
chair in the car and drive back.
Tim and I were so depressed, there
"I'm not sure how often we've
just seemed to be somebody around
talked to our new next-door neigh-
all the time - his family or my
bors. I'm sure that doesn't help,
family or our friends.
because the next door neighbor -
"As a result, Billy has always
the kid - isn't very friendly. I'm not
been around other people: kids,
sure what to do.
cousins, friends of ours. So when he
"But I'm sure that going to the
started school, everybody knew he
principal over Mrs. Abrams's head
was coming. He even had the same
might just alienate her. And it might
first grade teacher that I had. Even
give us the reputation of being
though this woman is sort of old
pushy. That isn't the way we would
now, I knew her and she knew who
have done things before. I'm not
we all were. So Billy really was
really comfortable with doing it this
accepted, and I certainly felt at home.
way now."
"I'm not sure that was as big a
"Tim is much more self-
deal for Tim. We had long discus-
assured than I am."
sions about whether to move or not.
I think if it wasn't for Billy we
T
he Charles family came
worked part-time before we moved
because of their concerns
probably would have just moved
and I'm sure I could find part-time
about their nine-year-old son,
Bill. Bill, a youngster with cerebral
palsy, was having difficulty adjusting
"Hartley programs keep my slow readers
to school in their new community.
excited and interested in using the computer."
Tim Charles believed that Bill was
Sandra Haynes, Chapter One Reading Teacher
doing well academically and that his
social troubles would resolve them-
Alaiedon Elementary School
selves in a period of time. Ruth
Great programs like Kittens, Kids and
Charles thought her husband
a Frog and Chariots, Cougars and
focused so much on achievement
Kings support the philosophy underlying
the new definition of reading. I can get my
that he didn't understand the daily
kids involved, work with their prior
struggle that Bill was having or how
knowledge and build excitement about
increasingly difficult things were
the content.
The graphics are fantastic and the
becoming for her.
large type is perfect for my lower-level
Mr. Charles felt that his wife
students. The lessons follow the same
was exaggerating their son's diffi-
format, so I don't have to give new
culties. They both agreed they had
instructions each time we move to a new
different views about their recent
story. The teacher options let me do
anything I want. My favorite option is the
move. Mrs. Charles had been reluc-
ability to print out student scores. I like to
tant to move from the community
send them home to parents, since parent
where she had lived all her life and
motivation is so important with Chapter
where she had a network of friends
One students.
Basically, with Hartley programs, I feel
as well as professional contacts that
like I'm in control instead of the other way
had made her life and her son's life
around!
easier. Both felt stuck in terms of
what needed to be done next.
Hartley"
Moving to new communities
and starting new schools is a com-
doesn't forget the teacher.
mon phenomenon in the life of all
CALL 1-800-247-1380 FOR A FREE CATALOG.
youngsters. Almost 25 percent of all
58
EXCEPTIONAL PARENT
APRIL 1989
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FAMILY LIFE
children in a school system are new
system that was much more competi-
and find new networks of relation-
in any given year. As a result, a
tive. It placed much more emphasis
ships, children also settle down.
greater understanding of the
on high achievement than his pre-
Mr. and Mrs. Charles agreed
challenges that the new child and
vious school system. Youngsters in
that Bill had become a focus of the
family must confront has developed.
highly competitive systems often feel
unresolved disagreements they had
Teasing and scapegoating are
continuously vulnerable. They often
about the importance of friendships,
common phenomena for all new
are fearful that any less than perfect
the nature of Mr. Charles's career and
children. Children tend to focus on
performance will doom them to a life
the supports that each supplied for
the youngsters in school who are the
of failure. Under such pressures,
their son. It is common, when
most vulnerable. In general, the
children tend to be uncooperative
families enter a new stressful
vulnerable children are the ones who
and, when anxious, to focus on the
situation, for problems that they had
are new to the community and are
vulnerabilities of others. Bill was
struggled with in the past to re-
not supported by the loyalties and
vulnerable because of his newness to
emerge. It is not surprising, then,
friendships of other children. We are
the community and his disability.
that the Charleses were reminded of
also aware that children with dis-
Adults also have difficulties
their earlier struggles with finding a
abilities are likely to be scapegoated.
moving. But it's not as socially
comfortable family style for living
Bill was having the typical struggles
acceptable for adults to express the
with Bill and helping him grow.
of many children who are new. He
same range of concerns that we
Much of Mr. and Mrs. Charles
had not yet developed a network of
expect children to express about
current dilemma stemmed from their
new friendships or ways of using his
making new friendships, finding
different styles of handling problems.
non-school time.
new patterns of living and finding a
Mr. Charles was an active man. He
Although teasing is a phe-
group to fit in with. It is also com-
attacked problems directly. If there
nomenon of childhood, it is intensi-
mon for parents to focus on their
were a dilemma, there had to be an
fied in situations in which children
child's problems and friendships
immediate solution. He was much
are encouraged to be competitive.
rather than their own. When parents
more likely to depend on himself and
Bill's new school was part of a
themselves feel more comfortable
on his own inner resources for
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EXCEPTIONAL PARENT
APRIL 1989
One man
making a difference.
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When Ralph Braun began building equipment for his personal mobility
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FAMILY LIFE
solving problems. He had also been
together as a husband and wife and
bridge that gap. He began to invite
concerned about the move. His solu-
as parents. They also agreed that
friends from work and their families
tion was not to move the family at
once a month, they would include
to their new home. This helped to
first and to commute to the new job.
Bill in their meeting.
develop a new network in the com-
On the other hand, he had not
The first meeting with Bill gave
munity for the entire family.
recognized the amount of support
them a new view of their struggles as
As Mrs. Charles found herself
that his wife had given to him to ease
a family. Bill was very aware of the
more comfortable in the community,
some of the dilemmas of commuting.
differences of opinion between his
she found that it was easier to call
Mrs. Charles' style was to turn
parents. He felt that if he said pos-
her old friends and to begin to re-
to her network of friendships for
tive things about his new school,
establish a new pattern of relation-
help. Because of the availability of a
although he would please his father,
ship with them. As the family felt
vast network of friends and relatives
he would be siding against his
more involved with each other, Bill
in the past, she was able to help her
mother. At the same time, he felt
found it easier to approach other
son develop a sense of mastery and
that if he discussed his loneliness,
youngsters. At times he was dis-
acceptability, which eased his negoti-
he would be criticizing a man who
appointed, but he gradually was able
ations with other children in the
Bill knew cared about him deeply.
to establish a new network of friends
neighborhood and at school. When
The Charleses began to discuss
with whom he could spend after-
faced with stress in their new com-
how Mr. Charles' approval was im-
school and weekend hours.
munity, Mrs. Charles did not have
portant to his wife and his son. Mr.
this network available. At the same
Charles realized that he already had
-M.J.S.-
time, she had underestimated her
a large number of people he knew in
husband's concern for herself and
the community through his new job.
for Bill.
Although traditionally Mrs. Charles
This case has been selected from
The Charleses were encouraged
had been the one who arranged their
private practice and consultation files.
to continue to meet during the year
social life, he felt that he could take a
The names and circumstances have been
and to discuss how they worked
more active role in helping his wife
changed to preserve confidentiality.
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EXCEPTIONAL PARENT
APRIL 1989
CLASSIFIED DIRECTORY
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PINE VIEW CHRISTIAN HOME
A loving Christian atmosphere for brain injured
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CAMP HORIZONS
children. We provide physical and occupational
or copy your name
Ten years of serving children and young adults who
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are mentally retarded. Year-round residential
Pine View Christian Home, Route 2-Box 47,
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Windham, Conn. 06266, (203) 456-1032.
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PARENT, P.O. Box
Educational overnight camp for children and adults
careers in human services. Upon graduation they
ages 6-up who are mentally handicapped. 20 miles
are qualified to work with young children, normal
3000 Dept. EP
Name
Address
NW of Orlando in Wekiwa Springs State Park. 6,
or handicapped, as well as infants/toddlers and
City
State
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12, 19, 26 day sessions June thru August. Multiple
senior citizens. NYU-PEC, One Washington Place,
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Accredited. 909 E. Welch Road, Apopka, Fla.
North Carolina
32712, (407) 889-8088.
CAMP SKY RANCH
Simply attach the label from this
Real camping for the special child since 1948. Four,
magazine and write in your new
UNIQUE TRAINING PROGRAM
2-week sessions or any combined sessions. Lake
Unique residential and vocational independence-
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address below. Please allow 4 - 8
oriented training program. Limited to 21 mildly
riding, crafts, planned programs, nurse on staff.
weeks.
retarded adults. $1775 per month. Telephone (407)
Camp Sky Ranch, Route #1, Box 540-C, Blowing
597-2315 or write T&M Ranch, P.O. Box 874,
Rock, N.C. 28605. Jack and Betty Sharp, Owners,
Indiantown, Fla. 34956.
(919) 854-1141. Dan C. Norman, Director, (704)
MY NEW ADDRESS IS:
264-8600.
Georgia
Pennsylvania
Name
AGAPE VILLAGE
Private, non-profit, residential community for
LEE MAR SUMMER CAMP
mildly/moderately retarded adults.
For moderately mentally handicapped. 36 years of
Address
Apt #
Individualized instruction provided in
camp leadership. Co-ed 5-18. Unique program
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City
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perceptual training, plus innovative social,
Nurseries, greenhouses, tree and shrub farm, or
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State
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Zip
residential fee $900. For information, telephone
York, N.Y., (212) 988-7260.
(912) 471-3700, or write 3711 Agape Village Rd.,
Macon, GA 31210
Tennessee
SUBSCRIPTION RATES
Maine
TALL PINES CAMP
Tennessee summer camping for mentally retarded,
BANCROFT CAMP
co-ed, ages 7-50. Nineteen years experience.
Order 8 issues of EXCEPTIONAL
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Outdoor camping activities structured in individual
$16 per year for individuals.
Owl's Head, ME. Programs based on individual
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3 and 6 week sessions. $225 per week. Enrollment
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$24 per year for libraries, schools
information, contact: Director of Admissions:
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and agencies.
The Bancroft School, Hopkins Lane, Haddonfield,
Foreign Postage, add $6.00 per year
NJ 08033, (609) 429-0010.
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FAITH MISSION HOME
Loving, christian, residential care and training for
Check Enclosed
Bill Me
RIVERBROOK
ambulatory, mentally-retarded and brain-injured
A private residential facility designed to meet the
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Mail to:
needs of moderately, mentally-handicapped girls.
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EXCEPTIONAL PARENT
The gracious estate houses twenty-five students in a
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EXCEPTIONAL PARENT
APRIL 1989 63
Practical and Up-To-Date Resource Books
About Disabilities from Exceptional Parent Press.
"The Disabled Child & The Family seems ideally
The Disabled Child
suited to the needs of parents and professionals
Disabled,
the Family:
alike. It offers a balanced examination of legitimate
concerns for both these groups and poignantly
Maswell
emphasizes understanding the child as a whole indi-
and Female, Proud!
vidual rather than as a symptom or a disability.
This book vividly illustrates that mutual respect
for everyone's knowledge and experience--parents'
and professionals'--c open the way for children
with disabilities to reach their full potential."
STORIES OF TEN WOMEN
"Highly recommended"
WITH DISABILITIES
-Rehabilitation Literature
by Harilyn Rousso
Exceptional Parent Press
proudly announces the
publication of Disabled,
Making an Exceptional Difference is a compila-
with Susan Gushee Malley and Mary
Female, and Proud!:
Making Exceptional an
tion of articles that provides practical information
photographs by
Stories of Ten Women
about applications of technologies and approaches.
With Disabilities by Harilyn
Rousso with Susan Gushee O'Malley and Mary Severance.
Difference
These articles were chosen because they:
1. are written clearly and require no previous
This book offers young women with disabilities empower-
technical knowledge to be understood.
ing role models and the powerful message that they do not
2. describe ways in which computers can be
have to be or become any one thing because they are dis-
used to make significant impact on people.
abled and female--they have full lives ahead of them. It
3. communicate the possibilities computer tech-
offers parents and educators a unique way to help young
nology is opening up for people with disabili-
people learn that making choices--about school, work,
ties without exaggerating the value of the
family, and love--is what being disabled, female, and proud
computer as a miracle cure.
is all about.
"You do not have to be or become any one thing because
you are a woman or because you have a disability.
There are a range of possibilities from which you can
Are children with physical, mental, emotional,
choose."
-Harilyn Rousso
medical or other disabilities welcome to attend
"Don't overstate your disability and don't ignore it. Be
assertive. Figure out what you want and don't let people
School-Age Children
Extended Day Programs, Latchkey Programs, Kids
who say you can't get there convince you that you can't
With Special Needs
Clubs, and other school age child care programs
which have established across the U.S. in recent
do it. Keep fighting, keep using your head, keep finding
Dale Fink
years? Or are they and their parents finding them-
as many avenues toward where you want to go as you
selves shut out of these new initiatives?
can."
-Adrienne Asch
School Age Children With Special Needs exam-
"Value yourself, and realize your worth, and realize
ines the answers to these and other important ques-
you' a person too. You have a lot to offer, so offer it.
tions. It describes programs that are successfully
Go for it!"
-Linda Young
integrating children with special needs into child
care programs with their school age peers.
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FAMILY ALBUM
I went on a fishing trip with
my Grandpa.
We packed some lunch so
we could eat it at the park. We
packed my fishing poles, my
worms and a bucket.
MY
We went to Gedney Park.
We found a pond that has lots
of fish.
FISHING
First we put together the
fish-ing pole. We put the string
TRIP
on it. Then we put the float on it
and then the hook. Grandpa
showed me how to cut the worm
By Jason Kingsley
and put it on the hook, just by
pushing the worm.
Then we stood on the rock
and we fished, while my
Grandpa took another fishing
pole with a reel.
First we cast it out and let
the float float on the water and
wait until the fish comes. We
took 10 fish. They are called
sunnies. But there is one fish that
we kiss for good luck and throw
back in the water. That is the first
fish. That is an old family
custom.
It was great and nifty.
Then we ate some lunch. I
ate a tunafish sandwich. I
learned how to eat tunafish at
camp.
When we got home, my
family took a look to see how
many fish we got. My family
counted the fish one by one and
was proud of me.
My Grandfather scraped off
the scales of the fish and then cut
Jason Kingsley, 14 1/2, is
it with a big knife. He took the
pictured with his grandfather,
Alan F. Perl.
faces off and threw them in the
Jason lives in Chappaqua,
garbage. And we eat the bodies
N.Y., and attends the eighth
grade at Lakeland-Copper
for dinner. But for me, I'm
Beech Middle School.
having fishsticks from the
Jason is an aspiring actor who
freezer.
has appeared on the TV shows
Sesame Street and The Fall Guy.
THE END
EXCEPTIONAL PARENT
APRIL 1989 65
FAMILY ALBUM
individuals. More feelings are experienced when the
college students, who are counselors at camp, volunteers
STRIDE
at school or in the community or graduate students
doing research, leave for jobs to benefit more persons
with disabilities. Thinking that these good friends used
me as a guinea pig just to obtain their education has
been a hard task. I have suffered through times of
FOR
discontent, loneliness, love, frustration and anger over
these people. The following poem suggests more deep
STRIDE
feelings about this issue:
To Thy Self
Are you willing to water the flowers?
Do you expect a good fragrance
From doing this deed?
The clock strikes seven o'clock in the morning.
What growth analysis can be anticipated?
A new day begins with tasks to be done, obstacles to be
Do you promise thy self that these
overcome and feelings to be experienced. As a victim
Flowers will live?
of cerebral palsy, I, Scott Tooke, have lived through
Is there any hope of them living on
many daily experiences. Just as a jockey pursues a
Independence?
career of conditioning to race horses, I have seized the
Would it be a miracle if they lived?
opportunity to achieve academically and socially. The
following two questions still persist in my mind as
Then, what happens to them when they
Are abandoned?
they do in the minds of many other disabled friends:
Is the triumph of living worth the risks? Do others
Do they stop blossoming?
Do the friends even care?
assist us in our lives just to acquire that good, warm
feeling inside of them?
At the present time, I am a junior at Texas Tech
Abandonment is a very severe pain, although my
University. My major point of academic interest is in
friends are probably still watching every move that I
technical writing. I am hoping to land a decent job one
make. The feelings are still here; however, my friends
day, so that I can support myself and a family. During
are worth a great deal to me. Every friend in the world
my high school career, I maintained a 4.2 grade point
is a precious jewel.
average to graduate with high honors. The faculty at
Thus, as nonverbal persons live in their fixed
Coronado High School honored me with the "Who's
environment, they are urged to put out extra effort to
broaden their world of communication. A few are
Who" award in my sophomore and senior years. In
order for these achievements to become realities, three
keeping up stride for stride, attempting to advance to a
communication devices, the Autocom, the Light Talker
more abundant life. Others are reaching out to more
and the SpeechPac, have played major roles in
people with their unique way of communicating.
accomplishing these thrills of victory!
Of course, this fame and honor builds pride deep
down within me. However, being this noble, and com-
municating in a unique way, set the stage for some
special, yet normal feelings and emotions. Just as a
professional athlete assumes a label as a star, I have been
considered the "guy with the neat machine." This has
caused a bit of loneliness.
Scott D. Tooke, pictured
Part of the problem lies in my ability to broaden
with his SpeechPac
my communication horizon to include more people.
communication board,
The other part of the problem lies in our naturalistic
is a student at Texas
society. Another common feeling is frustration.
Tech University in
Lubbock, Texas.
Many disabled persons use adapted equipment on a
Tooke is a member of
trial-and-error basis. When equipment does not func-
Alpha Phi Omega and
tion properly, it places limitations on their abilities.
is also active in
Frustration also comes out when nonverbal persons
Lubbock Independence
attempt to show certain kinds of affection to selected
for Everyone.
66 EXCEPTIONAL PARENT
APRIL 1989
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MANAGING PHYSICAL HANDICAPS
DOWN SYNDROME: AN
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INTRODUCTION FOR PARENTS (Rev.
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PLEASE DON'T SAY HELLO by Phyllis-
JOURNEY THROUGH GRIEF by
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Elizabeth Brooks Farnsworth. $7.95
MUSIC ACTIVITIES FOR RETARDED
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FINANCIAL PLANNING FOR THE
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STORIES OF TEN WOMEN
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OUR BROTHER HAS DOWN
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$35.75
TEACHING THE INFANT WITH DOWN
SYNDROME by Shelly Cairo. Two
by Harilyn Ramo
SYNDROME by Marci J. Hanson.
sisters talk about their brother, who
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OUR SPECIAL CHILD: A GUIDE TO
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I HAVE A MENTAL HANDICAP by
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I USE A WHEELCHAIR by Althea.
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IMPLEMENTING EARLY INTERVENTION
A MANUAL AND SOURCEBOOK FOR
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CHILDREN CAN ENJOY LIFE TO ITS
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MAKING AN EXCEPTIONAL
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DIFFERENCE: ENHANCING THE
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IMPACT OF MICROCOMPUTER
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COPING WITH CEREBRAL PALSY;
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DOWN SYDROME: A RESOURCE
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BOOK FOR PARENTS OF CHILDREN
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HANDLING THE YOUNG CEREBRAL
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EXCEPTIONAL PARENT
APRIL
1989
67
FUN
STUFF
With
HOBBIES,
your child,
or your child
CRAFTS and
1. Collect flowers,
leaves, rocks, coins,
alone:
GAMES
stamps, shells, etc.
and talk about them.
by D.J. Orr
Some children do not "pick up" new skills as easily as
other children. They often need to review and
practice skills before the skill is actually learned.
3. Exercise,
4. Watch and
swim, run,
identify birds
2. Plant
bicycle, hop-scotch,
an indoor
jump rope
garden
5. Play an
instrument
6. Paint, and
mix colors to
make new ones
7. Build models
8. Read
9. Build something
out of wood
11. Make things
by sewing, macrame,
crocheting, knitting,
needlepoint, leather craft,
mosaics, decoupage, candlemaking,
whittling, sand art, bread sculpture,
10. Work
flower arranging, etc.
on a car, bike
Exceptional Equipment
For Exceptional Kids
Reprinted by permission of
© Therapeutic Equipment Corporation 1989
At Exceptional Prices!
Retail
CCS
Retail
CCS
Cushions:
Three-Wheeled Scooters:
Jay® Cushion Jr.
$225.00
$183.00
Ortho-Kinetics Pony II™- Small
$1765.00
$1365.00
Jay® Cushion Child
225.00
183.00
Ortho-Kinetics Pony II™- Medium
1865.00
1460.00
Jay® Protector™
125.00
103.00
Fortress Scientific 2000PD (S550 Seat)
2580.25
1935.00
Fortress Scientific 2000PD (14" Seat)
2480.50
1859.00
Bathroom Aids:
E&J Posture Commode Trainer
265.00
199.00
Tumble Forms® Products:
Footrests (For Model Above)
74.00
49.00
Deluxe Floor Sitter — Small
136.00
122.00
E&J Commode-Posture Chair
330.00
249.00
Deluxe Floor Sitter — Medium
188.00
169.00
Above Model With Neck Support,
Deluxe Floor Sitter - Large
262.00
236.00
Tray & Footrests
551.00
399.00
Feeder Seat - Small
88.00
79.00
Ortho-Kinetics TLC™ Bath Chair (48")
295.00
229.00
Feeder Seat - Medium
123.00
109.00
Ortho-Kinetics TLC™ Bath Chair (52")
315.00
249.00
Feeder Seat — Large
203.00
183.00
Headrest (For Models Above)
75.00
59.00
Carrie Seat™ - Pre-School
675.00
595.00
Ortho-Kinetics Adaptive Commode
520.00
399.00
Carrie Seat™ - Elementary
685.00
599.00
Ortho-Kinetics Shower Chair
395.00
299.00
Carrie Seat™- — Junior
795.00
699.00
Carrie Seat™ — Small Adult
895.00
799.00
Strollers:
Miscellaneous:
Ortho-Kinetics Kelly™
495.00
389.00
Invacare® Erick
630.00
499.00
Columbia Medical Car Seat
429.00
349.00
Invacare® Maxit
766.00
575.00
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498.00
379.00
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Don't Keep Off The Grass
or the beach or the trail, if that's where you and your child want to go.
Other chairs can make it difficult to venture beyond the sidewalk. But the
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Travel from your home, to the school bus, to the classroom - and the Carrie
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positioned properly. So go to the park, and
don't keep off the grass. You may even want
to pick the flowers!
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