Having a child with special health care needs, such as birth defects, can affect the entire family. It might be helpful to talk with
families or others who are living with similar conditions to address some concerns and questions you have. Talking with other people may provide emotional support and hope for the future.
Children's Medical Services (CMS) is Florida's Provider of Services for Children with Special Needs. They offer programs and have services for expecting parents, babies, infants, toddlers, children, adolescents and young adults. All of their services are provided by health care professionals. Please call their central office at (850) 245-4200 or visit their statewide office page to find your local CMS provider http://www.cms-kids.com/home/contact/area_offices.html. Remember that the choices of one family might not be best for another family, so it's important to understand all options and discuss them with a health care provider.
There are many ways to connect with other people, including in person, on the Internet or by telephone. The following sources can help you get started:
- Health Care Providers
- The person's health care provider is one of the most reliable sources for contact information about support groups. The health care provider could be a primary care physician, genetic counselor, neurologist, neurosurgeon, orthopedist, developmental pediatrician, or a physical or occupational therapist. Hospitals in your area might also sponsor support groups.
- National and Community Organizations
- A national organization that focuses on the specific birth defect, such as Spina Bifida Association, might exist. Most national organizations have state or local branches, such as Spina Bifida Association of Central Florida. State or local area March of Dimes offices could also be helpful. United Way offices may be able to point out resources. Look in the phone book or on the Internet for phone numbers and addresses.
The following organizations have information about support groups
- The Arc
The Arc website provides information to help children and families with Autism, Down syndrome, Fetal Alcohol Syndrome, and many other intellectual and developmental disabilities. The Arc is an advocate for individuals with intellectual and developmental disabilities, providing support and services for affected children and families.
- Brave Kids
The Brave Kids website has an online resource for children with special needs and their families. There are message boards, resources, and games.
- The Compassionate Friends
The Compassionate Friends website offers help to families in dealing with grief following the death of a child of any age.
- Family Village
The Family Village is a web site for children and adults with disabilities and their families. Family Village brings together thousands of online resources in a organized, easy-to-use directory, including information on assistive technology, legal rights and legislation, special education, leisure activities, and more.
- The Father's Network
The Fathers Network provides information and resources to help families raising children with special health care needs and developmental disabilities.
- March of Dimes
MOD works to assure that babies are born healthy. Through research, outreach, education, and advocacy, MOD addresses issues such as prematurity, low birth weight, and birth defects.
- Mended Little Hearts
Mended Little Hearts is a program of the Mended hearts Inc., and works nationally and in
communities to support children with congenital heart defects and their families.
Free Materials link
The CDC has free factsheets, brochures, posters, and educational materials http://www.cdc.gov/ncbddd/birthdefects/freematerials.html