Every parent is special; so is every child. For most parents, hearing that their child is special simply means that their child is unique -- unlike other children in her class because of her interests or sense of humor. For a parent of a child with a disability this word "special" is an introduction to a whole new world -- the world of "special needs." It is a world filled with new language, such as "special education" or "in-home supports," and new people -- case managers, therapists and more specialists than one would think existed.
As each child is unique so is his or her disability. It is often hard to find an exact diagnosis.
Disability is not a disease; a child's disability usually has no known cause and no known cure. Giving the disability a diagnosis, a name, may take several years of medical and psychological testing. The disability may need more than one diagnosis to describe it. A child may have Down syndrome and attention deficit disorder; or both a physical disability and mental retardation.
The diagnosis helps parents begin to understand their son's or daughter's potential, but it doesn't give parents a complete picture of the future needs of their child. Disabilities manifest themselves in different ways for each child. The severity of the disability and the areas of functioning that are affected differ from person to person. Some adults with mental retardation can read; others cannot.
Because there are many sources of support and services for families of children and adults with disabilities, it can be hard for families to identify what they really need and who can provide it. They need to find specialists and consultants who know and understand their child's unique disability.
Parents also need folks who are not "specialists" -- eye doctors and dentists who can work with patients who cannot communicate; shoe stores that sell hard-to-find sizes; baby sitters who understand behavior management techniques; churches that are inclusive and supportive.
During the past several years, providers of services for people with disabilities have begun working together to help families negotiate the maze of agencies and organizations available to them. A single plan is created to help the family cope with their medical and support needs and the many agencies that provide them. Families can request a service coordinator who will help choose the services and aid in making changes as the familiy's needs change.
Families also may use advocate services to aid them in talking with school officials or service providers. An advocate is a professional, another parent, or a friend who offers emotional support and advice. The Arc of Douglas County offers advocate services for families who have a member with a developmental disability. Arc staff will attend meetings with schools or service providers, share ideas and help families learn about services.
Parents also need to know when new ideas or technologies change the way a service should be offered. The Arc helps parents learn about these changes through their education effort for families. In January, the Arc will host a presentation on financial programs offered by Social Security to people with developmental disabilities.
-- Barbara Bishop is the executive director of The Arc of Douglas County.