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Published: Apr 30, 2008 06:37 PM
Modified: Apr 27, 2008 09:42 AM

Loss of services and a loss of hope

Catherine Rohweder and Simon. He was diagnosed early after a friend who knew about autism suggested Rohweder and her partner have the child tested.
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I stood in the bathroom at the Preschool Intervention Program's office, trying to choke back the sobs.

We had just been told that my darling son Simon, who had been diagnosed with autism at 18 months, would lose the last of his therapeutic services. His speech therapy -- gone. His play therapy -- gone. His in-home TEACCHing sessions -- gone. And now his special needs slot at his wonderful daycare -- gone. All because he turned 3 years old.

It made absolutely no sense to me. Why start to save a child with autism and then abruptly stop? Why throw a rope down into the well, pull a child nearly to the top, then take the rope away to see whether he can climb out on his own? What if he can't?

Simon is a poster child for early intervention. He was diagnosed early, thanks to a family friend who had knowledge of autism and the courage to tell us Simon should be evaluated. Within six months we had a full array of services, many of them home-based and paid for by the state. We were also lucky enough to get a slot at a high-quality child-care program where a team of therapists and teachers worked diligently every day at treating Simon's symptoms. He blossomed into the happy, sweet, friendly, talkative, funny 3-year-old boy that he is today. We felt truly blessed.

But then he turned 3, and everything changed.

He is still firmly "on the spectrum," according a recent evaluation using the Autism Diagnostic Observation Schedule. He still struggles with social interaction, imaginary play and requires significant prompting to initiate tasks. But while the Chapel Hill-Carrboro school system deemed him eligible for services, they will only provide him with 60 minutes of special education and 30 minutes of speech therapy per week.

To make matters worse, we have to remove Simon from his classroom and drive him to a separate location to receive services, despite the fact that his goals involve peer interaction and daily routines. The rationale? "He has normal cognitive and verbal skills. We do not provide early intervention," they said. "Developmental day placements are only for children who are failing," they said.

But I have never heard or read that children with high-functioning autism should have their services drastically cut at age 3. I have never read that intensive efforts to treat autism should come to a halt if they are proving to be successful. Autism is a life-long brain disorder, right? So why does the school system dismantle the foundation on which Simon's success was built, at the tender age of 36 months?

I understand that much of the problem lies with federal and state regulations. But we do not want to play Russian roulette with Simon's life and wait until he regresses so that his services can be reinstated. So we are paying for private services out of pocket, pleading with administrators, therapists, and teachers, scrambling to find other programs, and worrying ourselves sick over whether the new rope we are putting together will be strong enough to keep him from falling back down into the well.

The educational system is not working for many families whose children have autism. Who will fix it?


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