Saturday, September 3, 2011

Update on Sam

While I am grateful to be back in the Orlando area with doctors that know Sam and everything he endured as an infant/toddler, I do NOT have faith in the school system we are part of. A shining light so far has been the assistant principal.

After a discussion with the sped coordinator at the school, where I was informed they'd be removing the "developmentally delayed" coding from his IEP and placing him under "speech and language impaired," I set about making some phone calls. I should note here, I registered him for school the first week of August and here it was the start of September and they had not yet requested his records from his school in Michigan. All they had was his IEP, no evidence of testing. ????? I gave her the name of the school, telephone number and the name of who she needed to talk to. Why was she so surprised that I knew this information?

Anyway, first I called and left a message with the pediatrician's nurse. I stated I needed to know what could be in Sam's file to help me do more than just an SLI coding. I got a phone call after hours direclty from the pedi. We spoke briefly and he said whatever I needed from him, including forms to be filled out, he'd do. (he's incredible, truly incredible)

My next call was to the pediatric neurologist. Thankfully, because it was less than three years (barely) since his last visit, they could still take him with his insurance. Got him an appt for yesterday.

When the school called again to say they were sending home paperwork for his IEP, she indicated they had a medical form. I asked for two so the pedi could do one as well as the neuro.

The appt with the neuro went very well. It was with one of hte Nurse Practitioners, but NPs down here are fairly common and we have yet to have one at a specialist's office that wasn't well-qualified. They picked up right where we left off in December 08.

An MRI with blood work is ordered (scheduled for Oct 20) and a referral for a neuropsych evaluation has been made. Just have to find one close enough.

When Sam had some work done three years ago, one urine test came back weird, so they want to redo that one. The MRI will give them a study of his brain to see if there's any seizure activity.

While so far no one believes Sam is ready for a full Autism diagnosis, he is definitely still on the spectrum. Keeping the PDD diagnosis was what was best for him at the time. There are tendencies, but nothing huge or outward. He just doesn't fit it.

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