RESOURCE GUIDE

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

LEGAL HELP

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Reading

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Suggested Children's Literature

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.

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.

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.

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.

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.

Periodicals

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.

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.

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.

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.

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.