Yesterday, we took Ava to a new developmental pediatrician in Manhattan. She is a "guru" of sorts and is known for her very detailed reports. She also runs an autism school in NYC. Ava was evaluated for 2 hours and then we had a 90 minute consultation with the doctor. The doctor gave us a diagnosis -- autism spectrum disorder, told us Ava has a neurological sleep disorder and apraxia. The doctor gave us a prescription for an anti-depressant for the sleep disorder and urged us to get Ava in speech/oral motor therapy right away.
Ava scored frighteningly low on every developmental category with the exception of gross motor skills. I credit the physical therapy sessions she had at Hackensack Hospital for her improvement. In gross motor, she scored like a 20 month-old child. It was a big improvement over the last time she was evaluated. But all the other developmental categories remained the same. For cognitive she is at the level of a 17 month-old, for receptive communication a 4 to 10 month-old, for expressive communication, an 11 month-old and for fine motor skills, a 10 month old. As a parent it is hard not to panic.
I wish I had seen this doctor sooner. The doctor recommended intense therapy and a lot of it - 25 to 30 hours per week. We've heard this before - namely from the executive director of one of the best autism schools in the country. If we had seen this doctor six months ago, Ava would have had a plan of action that would have put her on the right path to recovery. Right now, she is floundering after six months of "treatment" by Early Intervention. What are our other options?
I called the Outreach Program administered by a local autism school. The cost? $8,000 per month -- and that does not include speech or occupational therapy. Who can afford that? Certainly no one middle class! Not even the wealthy! I know families who have gone privately and it is crippling.
So we are stuck with state services. There are good state-hired therapists, but the state does not want to give out service hours. They balked when I asked for 20! So what do we do? How can we get our daughter treated? And if the state gives us more hours, will the therapists be reliable and committed and not cancel all the time?
Who is willing to treat my little girl? Who will give us the hope that she can recover? We have hired an advocate to help us and we have a meeting with the state in a few weeks. My stomach is in knots already.
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Comments (2)
It is a scary venture. My suggestion try to see what you can do at home with Ava to supplement what the therapists do. Ask them for homework. I learned ABA (Applied Behaviour Analysis) so that I could give my son the hours that I couldn't afford to pay.
SIGH sorry I couldnt give much help
I'm sorry for your anxiety..but I can say this. Three of my four children are on the spectrum. P.D.D. (nos) Classical autism and aspergers. It is amazing what can be accomplished at home..there is so much that you can do..Please don't think that the school that you mentioned is the only place she will succeed. What wahzat said in the above comment is very true. I am glad that you have an advocate-because you should (and probably will have to fight to get more-but it is not impossible) I am hoping that the specialist that you saw told you positive things about your daughter as well. Children learn and grow and develop at different rates-but they continue to do so..My son with classical autism-was mostly non verbal until he was four..he had fine motor delays..large motor delays..he did not interact with anyone. He is now nine. He still has difficulty with pragmatic language-but he's coming along. He is also in the third grade in a regular classroom doing grade appropriate material.(all of my kids are in regular classrooms-doing grade level work) He has an aid-to help keep him focused-but he is doing incredibly. BTW-an "expert" scored him with an I.Q. of forty..
If you have a problem with therapists cancelling-by law it is required that the time be made up.
I hope this was helpful..hang in there :)
Please try not let the anxiety get to you..