Because cerebral palsy can be such a devastating illness that affects both patients and their families, support groups play an especially important role in helping loved ones live the best lives they can. The condition affects the patient, siblings and parents differently as the child with cerebral palsy develops and grows from being a baby, to a young child, and a teenager through adulthood.
Support Groups for Different Stages of Life
Support groups are available for each stage of a patient’s life. Parents and families of babies and children with cerebral palsy need the most support during the patient’s younger years. But, as the cerebral palsy patient matures and develops, he or she benefits from the support of others facing the same problems and situations.
Support Groups for Patients and Their Parents and Families
Doctors and therapists — physical therapists, psychologists, psychiatrists, social workers and speech pathologists — may conduct support groups themselves or are excellent referral sources to help find a group that is a regional or national association, or a local group that fits the family’s needs. The internet is another rich source for finding groups, chat sites, and cerebral palsy organizations.
Many internet sites offer information and support for patients with cerebral palsy and their parents and families. Cerebral palsy patients with or without speech difficulties will find the following links, some of which include chat rooms, especially helpful.
- United Cerebral Palsy is one of the largest charities in the U.S. It has a thorough web site with a wealth of information about CP for parents as well as links to other sites specifically for parents and families. http://www.ucp.org/
- American Academy for Cerebral Palsy and Developmental Medicine This is another large web site with a special section for parents and families. It has links to other especially useful sites and a list of chat rooms. http://www.aacpdm.org/
- International Birth Defects and Information Systems A web site devoted to birth defects, genetics and teratology. http://www.ibis-birthdefects.org/start/cp.htm/
- Lash & Associates Publishing is a publisher’s web site, listing: books, DVDs, CDs, and injury products by topic. It has a blog page as well. http://www.lapublishing.com/
- Cerebral Palsy and Neuromuscular Scoliosis has information, a forum, books, and links. It also has a social networking site. http://www.livingwithcerebralpalsy.com/
- Cerebral Palsy International Research Foundation has fact sheets, many news articles, videos, and links to other sites. http://cpirf.org/
- American Association for People with Disabilities is the largest national non-profit cross-disability member organization in the U.S. http://www.aapd.com/site/c.pvI1IkNWJqE/b.5406299/k.FBCC/Spotlight.htm/
- The March of Dimes Foundation is a leading nonprofit organization that has a large website with information on birth defects, educational resources, links to other sites and a newsletter. http://www.marchofdimes.com/