We began the process of applying for services 3 1/2 years ago, and in that time, we have only seen the need for them increase. Our son Sam was diagnosed with Asperger's Syndrome at age 4 1/2, so was never eligible for early intervention, and received only limited services under CPSE due to the timing of his diagnosis. His developmental functioning level at the moment is at approx. the age of four years. Sam cannot attend school in our home school district, and therefore must be bussed 20 miles each way to attend a self-contained BOCES classroom. He has a history of outbursts and impulse control that cannot be managed in a regular, even integrated classroom. Impaired social interactions with peers are the very essence of his disability. His anxiety level proceeding and during such encounters is so profound that it is often counter-productive to even attempt them. He cannot function independently in activities that neuro typical children commonly engage in- in fact he has great difficulty functioning in these types of settings even with extensive adult intervention. Acute anxiety is also present upon any kind of change that occurs in his life. It generally takes the first 1-2 months of the school year for him to become acclimated to a new environment, then regression is seen after school breaks, and even from day to day. He often has difficulty settling into his morning routine at school. These difficulties are reflected in behavior issues, inability to attend to even simple tasks, and disrespect to adults and peers alike. Any new activity that is introduced either at school or at home needs to be repeated many times over before he reaches a certain comfort level with it. Often teachers, therapists, and even us, his parents, are not patient enough to see things through to a satisfactory ending.
At home, Sam is very dependent on mom and dad for all of his needs. He needs prompting to do nearly every basic task from dressing himself to brushing his teeth. He has never gone to a friend's house to play unsupervised, does not answer the phone, and does not initiate any kind of independent moves away from mom and dad. Mom cannot work outside the home because she must be available to consult with teachers at a moment's notice, maintain Sam's familiar schedule, and manage his therapy and paper work.
We have been working with a family therapist for the last 3 years. While we have seen some progress, clearly there is still a long way to go. Our concern is that we want Sam to be able to function on his own as an adult and not become a ward of the government. We feel that the time is becoming critical to keep him on the right path toward achieving this goal. The therapy is very costly, both in terms of meeting with the therapist and with subscription to a web site that augments the program we are using. With only one income, the financial burden is becoming increasingly harder to bear, and of course insurance covers nothing. We seek the Medicaid waiver service, Res Hab services to help get Sam out into the community and start working on those critical social skills, and Respite for mom and dad to get a much needed break now and then.
Actually, I feel like Sam is kinda on a good streak right now. Life at home is tranquil, school seems to be pretty even-keel, and he gets the jokes. He seems to be growing a little right now- maturing and handling things a little better. I don't plan to let anyone at Medicaid know that, though.
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