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So That Autism Thing...

Posted Nov 10 2010 8:01am
This seems to be a never ending saga . Heh, right along with every other saga we have going on. Perhaps the blog name should be changed, take your pick Sneak Peek at Saga, or maybe Sneak Peek at Drama?

Anyway. I missed the boat on that whole speak out on Autism earlier this month. But heck, I'm sure since I'm new to this Autism mom role, you'll cut me some slack, right. Cool. Thanks.

So I finally got a chance to see the Psychological evaluation completed by Regional Center. The long and short of it: PDD-NOS. That is Pervasive Developmental Disorder - Not Otherwise Specified , for those not into Autism Spectrum Disorder lingo.

They are also terminating his services as this diagnosis is not debilitating enough. Which means it does not interfere with his life enough.

Excuse me?

I dunno, call me crazy, but he doesn't make eye contact or speak. Now if he doesn't want to look at someone, well that's probably not a HUGE deal for most kids...but when you are trying to communicate with him via ASL. Well then not looking in my direction is kind of a HUGE deal.

So basically, we are screwed. In September his RC coordinator sounded fairly confident that a PDD-NOS (provisional) diagnosis would mean a continuation of his services. Last week I got the denial letter .

So in a few weeks we will be saying good bye to his Speech Therapist, Physical Therapist and Occupational Therapist (Feeding and Sensory Issues.)

This will leave Austin in therapy limbo basically.

Based on his IEP , he will be getting 3 hours of Special Ed instruction and 1 hour of Speech Therapy per week provided by the school district. And that's it.

Last week I contacted the Boone Fetter Clinic to have him evaluated there on the recommendation of his CHLA Speech Therapist. She is concerned and feels that he needs more services and an independent evaluation. I agree. So far I am playing phone tag with the Intake Coordinator.

Alternately, I have the option of paying OOP $800.00 to have him evaluated at another clinic. Either way I have to appeal the RC decision in order to get him some behavioral therapy. With any luck, some time after next summer we will have a Fair Hearing to work it out. {Oh fun times.}

In the meantime, we are trying to engage him more in structured activities and stop the twirling as needed. I think the new schedule, therapies in the AM and "school" in the afternoon will help him. We are going to implement a picture schedule ( PECS ) and hope he will work well with that. His Special Ed teacher is also a Kindergarten teacher for Autistic children, so far they have worked well together.

***

Now here is a little eye candy.

Austin met his new cousin, 10 day old Zachary.

New Baby

It was Love At First Sight!!

BTW that blue blanket was once Austin's too!


Thanks for peeking,


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