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RESOURCE
GUIDE
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There
are many resources available that provide information on cerebral
palsy, as well as providing assistance or help to those in
need. The following is a list of readings, organizations and
special agencies that will educate you on cerebral palsy and
other disabilities
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LEGAL
HELP
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LAWYERS
INCORPORATED, P.C.
Lawyers
Incorporated, P.C. is a national medical malpractice law firm
handling cerebral palsy birth injury cases throughout the
country. Their staff includes a Board Certified Obstetrical
Doctor and Registered Obstetrical Nurses. For more information
visit their web site at www.lawyersincorporated.com
or call ( 800) 888-LAWS.
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ABLEDATA
8455
Colesville Road, Suite 935
Silver Spring, MD 20910
(800) 227 - 0216
Web page:
http://www.abledata.com
ABLEDATA
is a national database covering information on assistive technology
and rehabilitation equipment. Consumers can search the database
free of charge from the ABLEDATA web site, or can have an
information specialist perform a search for a small fee. ABLEDATA
publishes an assistive technology fact sheet and consumer
guides.
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Able
Net
1081 Tenth Ave., SE
Minneapolis, MN 55414-1312
(800) 322-0956
Web page:
http://www.ablenetinc.com
This
company designs and manufactures simple technology for people
with severe or profound disabilities.
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American
Association of University Affiliated Programs for Persons
with Developmental Disabilities
8630 Fenton Street, Suite 410
Silver Spring, MD 20910
(301) 588 - 8252
Web page:
http://www.waisman.wisc.edu/aauap
Many
universities offer programs and services for children with
disabilities and their families. Most University Affiliated
Programs offer diagnosis and treatment of disabilities and
conduct research on disabilities and methods of teaching.
You can obtain a list of all University Affiliated Programs
by writing to the AAUAP at the above address.
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American
Physical Therapy Association
1111 N. Fairfax Street
Alexandria, VA 22314
(703) 684 - 2782
Web page:
http://www.apta.org
The
APTA has a free list of publications, "Publications of Interest
to Parent and Educators of Handicapped Children." They can
also direct you to the APTA chapter in your area. Call and
ask for information Central.
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Association
for the Care of Children's Health
7910 Woodmont Ave., Suite 300
Bethesda, MD 20814-3015
(800) 808-2224
(301) 654-6549
Web page:
http://www.biausa.org
The
association has information available on resources and facilities
for care. They publish a bi-monthly newsletter as well as
the National Directory of Brain Injury Rehabilitation Services,
which lists over 350 facilities and programs.
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Hydrocephalus
Association
870 Market Street, Suite 955
San Francisco, CA 94102
( 415 ) 732 - 7040
Web Page:
http://neurosurgery.mgh.harvard.edu/ha/
This
membership organization educates, advocates for, and provides
support for families. They have a booklet in English and Spanish
discussing all facets of hydrocephalus and they and they publish
a quarterly newsletter. They also offer many other services
and resources.
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Learning
Disabilities Association of America
4156 Library Road
Pittsburgh, PA 15234
( 412 ) 341 - 1515
web page:
http://www.ldanatl.org
The
LDA is a grass roots national organization with over 500 local
offices to meet the needs of those with learning disabilities.
They can provide information on school program development,
legislative action, advocacy and publications.
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March
of Dimes Foundation
1275 Mamaroneck Ave.
White Plains, NY 10605
(888) 663 - 4637
Web page:
http://www.modimes.org
The
March of Dimes is dedicated to preventing birth defects and
publishes many brochures and pamphlets of interest to parents
of children with special needs. They also have a resource
center number that parents may call with specific questions
about their child's disability.
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National
Easter Seal Society
230 West Monroe St., Suite 1800
Chicago, IL 60606
( 800 ) 221 - 6827
web page: http://www.easterseals.com
The
National Easter Seal Society is dedicated to helping people
with disabilities and their families by offering screening,
advocacy, public education and other services. The society
also publishes many valuable booklets and pamphlets.
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National
Information Center for Children and Youth with Disabilities
(NICHCY)
P. O. Box 1492
Washington, D.C. 20013-1492
( 800 ) 695 - 0285
Web page:
http://www.nichcy.org
This
clearinghouse provides information on educational programs
and other special services to parents of children with disabilities.
You may call or send in questions. For a nominal charge NICHCY
also provides fact sheets, information packets, and "State
Sheets" which list each state's resources for people with
disabilities. Publications can be downloaded for free from
their web site.
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United
Cerebral Palsy Associations
1660 L Street, N.W., Suite 700
Washington, DC 20036
(800) 872 - 5827
E-mail ucpnat@ucpa.org
Web page:
http://www.ucpa.org
UCP
is a national organization for people with cerebral palsy
and their families. Through its local chapters, it provides
a variety of services, including information and referral,
parent support, advocacy, and educational and work programs
for people with cerebral palsy. Fact sheets on selected issues
related to cerebral palsy are available, as well as publications
from a variety of publishers and organizations. Many publications
can be downloaded from the web site for no charge.
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Reading
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Batshaw,
Mark L. Children with Disabilities.
4th ed. Baltimore, Paul H. Brookes, 1997
This
is a one-stop reference book for information on a variety
of common childhood disabilities. Included are substantial
chapters on prematurity, cerebral palsy, seizures, mental
retardation, and learning disabilities. There is also practical
information on daily care issues that confront parents of
children with disabilities in general, including nutrition,
feeding, and behavior management.
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Coleman,
Jeanine G. The Earl Intervention
Directory. Bethesda, MD: Woodbine House, 1993
Words
and abbreviations from the fields of medicine, child development,
early intervention, special education, and various therapies
are defined in parent-friendly terms. A useful companion when
deciphering medical reports, evaluations, or textbooks.
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Finnie,
Nancie R. Handling the Young Cerebral
Palsied Child at Home. 3rd ed. Newton, MA: Butterworth-Heinemann,
1995
This
informative, illustrated guide clearly describes abnormal
movements and postures, and explains how to cope on a daily
basis with the management and development of a child with
cerebral palsy. Considered a classic among parents as well
as professionals.
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Manginello,
Frank P. and Theresa F. DiGeronimo. Your
Premature Baby: Everything You Need to Know about Childbirth,
Treatment, and Prevention of Premature Infants.
New York: John Wiley & Sons, 1991.
If your
child has cerebral palsy as a result of prematurity, this
book will help you understand the causes of your child's disability.
Possible medical complications and treatments are thoroughly
discussed, and stories from several families are included.
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Miller,
Freeman and Steven J. Bachrach. Cerebral
Palsy: A Complete Guide for Care giving. Baltimore:
John Hopkins University Press, 1995.
This
comprehensive guide covering a wide range of topics specific
to cerebral palsy, with emphasis on the medical aspects. The
book also covers many daily care concerns that arise from
birth through early adulthood. Included are an extensive glossary
of terms, lists of resources, and recommended reading and
toys.
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Pueschel,
Siegfried M., Patricia S. Scola, Leslie E. Weidenman and James
C. Bernier, James C. The Special
Child: A Source Book for Parents of Children with Developmental
Disabilities. 2nd ed. Baltimore: Paul H. Brookes,
1995.
This
is an excellent resource for parents of children with disabilities,
with one chapter devoted specifically to cerebral palsy. The
book covers topics from diagnosis to care and education and
legal issues, along with a resource guide and suggested reading
list.
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Schleickhorn,
Jay. Coping with Cerebral Palsy:
Answers to Questions Parents Often Ask. 2nd ed.
Austin TX: Pro-Ed, 1993
The
author answers questions parents often have about the nature
and causes of cerebral palsy, medical problems, surgery, educational
concerns, and therapies. The book is a compilation of material
from parent interviews.
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Sweeney,
Wilma. The Special-Needs Reading
List: An Annotated Guide to the Best Publications for Parents
and Professionals. Bethesda, MD: Woodbine House,
1998
This
is a useful guide for parents seeking information on a wide
range of disability issues. The book lists and describes hundred
of publications and other resources that provide information
on specific disabilities, including cerebral palsy and physical
disabilities, as well as information on issues common to all
disabilities, such as daily care, family life, educations,
technology, recreation, and community integration. Many Internet
sites are included.
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Featherstone,
Helen. A Difference in the Family:
Life with a Disabled Child. New York: Penguin,
1981.
Drawing
on her personal experience as well as interviews with parents
and professionals, the author movingly shares what is like
to raise a child with multiple disabilities.
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Kramer,
Laura Shapiro. Uncommon Voyage: Parenting
a Special Needs Child in the World of Alternative Medicine.
Winchester, MA: Faber and Faber, Inc. 1996.
A very
personal story of a mother's search for alternative treatments
for her son who was diagnosed with cerebral palsy at ten months.
With its very touching Foreword by Kramer's 12-year-old son
Seth, this book is a good guide and resource for an alternative
approach.
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Marsh,
Jayne D.B., ed. From the Heart: On
Being the Mother of a Child with Special Needs.
Bethesda, MD: Woodbine House, 1995
Included
in this book are many short reflections and anecdotes contributed
by mothers of children with a variety of disabilities, including
multiple disabilities and complications of prematurity. Among
the topics covered are coping, education, and family life.
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Metzger,
Lois. Barry's Sister.
New York Puffin Books/Penguin Group, 1992
This
is a great story for older siblings. In it, Ellen Gray, an
only child learns to deal with the birth of her brother who
has been given a diagnosis of cerebral palsy.
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Meyer,
Donald J. Uncommon Fathers: Reflections
on Raising a child with a Disability. Bethesda,
MD: Woodbine House, 1995.
The
heartfelt essays in this collection are essential reading
not only for fathers of children with disabilities, but also
for the women who want to understand their feelings and perspective,
Included are nineteen essays by fathers of children with cerebral
palsy, mental retardation, multiple disabilities, and other
special needs.
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Meyer,
Donald J. Views from Our Shoes: Growing
Up with a Brother or Sister with Special Needs. Bethesda,
MD: Woodbine House, 1997.
For
siblings who are in third to seventh grade, this book would
be an excellent source of information and support. Included
are short essays by nearly fifty children, aged four to nineteen,
about what it is like to have a brother or sister with special
needs. Six essays were contributed by sibling of children
with cerebral palsy.
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Miller,
Nancy B. Nobody's Perfect: Living
& Growing with Children Who Have Special Needs.
Baltimore:
Paul H. Brookes, 1994.
The
author wrote this coping guide in consultation with mothers
of children with spina bifida, autism, Pierre Robin Sequence,
and mental retardation. Throughout, she emphasizes that the
are many "right" ways to cope, and that individual families
need to do what they think is right for their families.
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Papazian,
Sandy. Growing Up with Joey: A Mother's
Story of Her Son's Disability and Her Family's Triumph.
Santa Barbara, CA: Fithian Press, 1997.
The
author of this autobiography has four children, including
a son with cerebral palsy. She writes of the daily events
that sometimes make her life seem overwhelming as well as
the satisfaction and happiness that come with each small victory.
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Thompson,
Mary. My Brother Matthew.
Bethesda, MD: Woodbine House, 1992
This
illustrated story for children in grades K-5 is told from
the perspective of David, Matthew's older brother, David speaks
candidly about what it is like to have a brother who moves,
talks, and behaves differently from other children.
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Suggested
Children's Literature
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Cross,
Molly. Wait for Me!
New York: Random House in conjunction with the Children's
Television Workshop, 1987
It's
hard for Elmo to keep up with his friend because he is so
much younger and smaller. But Elmo finds a way to make his
own fun, and when his older friend Grover arrives home, Elmo
realizes that it is Grover who has missed out on the fun.
This book can help children deal with the feeling of being
left out and left behind.
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Exley,
Helen. What it's Like to Be Me.
2nd ed. New York: Friendship Press, 1984.
A beautifully
illustrated and written book by young people with disabilities.
The authors explain what it feels like to be treated differently
from others and how they would very much like to be like all
able-bodied people.
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Fassler,
Joan. Howie Helps Himself.
Morton Grove, IL: Albert Whiteman, 1975.
A picture
book for young children about Howie, a little boy with cerebral
palsy who wants to learn to operate his wheelchair independently.
Howie deals with frustrations as well as successes in coming
to terms with his disability.
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Mayer,
Gina, and Mercer Mayer. A Very Special
Critter. Racine, WI: Western Publishing Co., 1992.
Alex
is a "Little Critter" who uses a wheelchair. When he first
joins the class, the other critters are struck by his differences.
They very quickly learn, however, that Alex has his own special
abilities and is not so different after all.
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Wanous,
Suzane. Sara's Secret.
Minneapolis: Carolrhoda Books, 1995.
Sara
loves her little brother, Justin, who has cerebral palsy and
mental retardation. But Sara does not want her friends to
know about Justin, as she fears they will tease her about
him. Fortunately, things turn out much better than she expected
when the secret gets out. This illustrated book would appeal
to children from about grades 3-6.
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Periodicals
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Closing
the Gap, P. O. Box 68, Henderson, MN 56044 ( 612)
248 - 3294.
A bimonthly
newsletter that focuses on technology in special educations
and rehabilitation. Publishes a comprehensive resource annually.
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Disability
Resources Monthly, Disability Resources, Inc. 4
Glatter Lane, Centereach, NY 11720 . ( 516 ) 585 - 0290
This
newsletter provides monthly reviews and notices about disability
related publications, software, videos, and databases.
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The
Exceptional Parent, P.O.
Box 3000, Dept. EP, Denville, NJ 07834-9919. (800) 562-1973.
A long-respected
source of information and guidance for families of children
with disabilities. This magazine not only has wonderful articles,
but also has an annual tax guide, annual resource guide, and
an abundance of advertisements for special equipment, clothing,
and toys.
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Pacesetter,
Parent Advocacy Coalition for Educational Rights (PACER),
4826 Chicago Ave., Minneapolis, MN 55417. ( 612) 827 - 2966.
This
free quarterly newsletter focuses on special educations issues.
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Tuesday's
Child, P. O. Box 270046, Ft. Collins, CO 80527.
( 970 ) 416 - 7416.
This
glossy bimonthly magazine contained articles of interest to
parents of children with all disabilities, as well as articles
on issues related to children with specific disabilities.
Each issue also included product reviews, as well as a forum
for parents to share questions and comments with other families.
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