No parent wants to be told that her child has a developmental disability. The initial diagnosis is the beginning of a long and difficult journey which, at times, can be quite overwhelming. Parents often indicate initially that they can’t accept the diagnosis. This feeling often turns into generalized anger at everyone and everything. All of the hopes and dreams you had for your child will not be realized – or so you think. It is hard for parents of very young children to look ahead and see that there are many options for adults with disabilities. At the beginning, parents are afraid and they need a tremendous amount of social and emotional support.
The first thing that parents need to realize is that this is a long-term process which is very stressful. Parents need to take care of themselves, each other, as well as the other children in the family. Many parents of children with disabilities work themselves until they finally collapse. For the sake of the family, parents need to set limits and goals that are realistic and reasonable. For parents of children with disabilities, there is also a gnawing sense of guilt which lurks under the surface: “Am I doing enough?” As a parent, if you get sick, who is going to take care of your family? No one is going to be able to do what you do for your child. But there are other people who can function in supportive roles.
Parents of children with disabilities now have access on the Internet to a wealth of information concerning programs and services within their community. For social networking and emotional support, parents need to find organizations which have been developed by parents for parents. Local organizations provide parents with lectures, seminars, and advocacy support groups. There are national organizations for parents who want to become involved with expanding services to children with disabilities. For parents who are having difficulty understanding the educational system, Wright’s Law (www.WrightsLaw.com) is a very popular website for parents who have legal questions.
There are special education programs and services which are available for every stage of a child’s development. Each state has a website for its education department. Every state education department has a breakdown of programs and services for infants, preschool and school age children. Parent guidebooks are also usually available online. So for example, in New York State, the web site is www.nysed.gov which provides a great deal of program information as well as a search section. If there are specific topics that are of interest, parents can “Google” key words such as: autism, Long Island, parent groups to see what comes up in various communities. In addition, most organizations serving individuals with disabilities are not-for-profit, service-oriented agencies which can also serve as a resource. Most of these agencies will be happy to speak to you, answer your specific questions, and give you advice.
When in doubt, formulate a question and call someone for an answer. Do not be afraid to attend meetings and call people about upcoming seminars in your community. Try to speak to other parents who are further along in the process than you are. Parents will usually provide you with their experiences as well as their honest opinions about practitioners, therapeutic services, special education programs, and legal issues. Knowledge is a powerful tool. Your search for information will give you a purpose and a sense of direction. It will also provide you with a course of action which is empowering. There are many, many options for parents of children with disabilities. In fact, there are so many options that parents often complain that they don’t know how or what to choose. This, of course, is in contrast to the educational field in the 1970’s which offered almost nothing for children with disabilities!
Dr. Ellenmorris Tiegerman is the Founder and Executive Director of the School for Language and Communication Development (SLCD) in Glen Cove and Professor Emeritus at the Derner Institute for Advanced Psychology Studies at Adelphi University. She can be reached at 516-609-2000 and www.slcd.org.
"The Unwanted News," Long Island Press