And another update as this thread may be useful to someone else with a child like mine...whew...
When I last posted, we were high stress, DS was biting at the gym daycare, I was finalizing our first IEP as he was phasing out of EI and had a tough shoulder surgery right before Christmas...it's a wonder I didn't start biting people who pissed me off...
Anyway, the IEP team started him in PreK early which has been huge huge huge! It's only 2.5 hours a day but he loves it and is doing extremely well. He has stopped biting and is well behaved at school and even though we had a PT exemption, I did a boot camp the weekend after he started and that in concert with the other kids example has made him into a PT super star. I am so thrilled with all of his progress.
Right after the New Year I took him to the eye doctor because his sister needed to go and he had a strange occasional squint and lo and behold, he has accomodative esotropia which is a neurological eye condition where the brain allows the eye or eyes to cross to see things up close. If it is allowed to continue the child is at risk of losing his depth perception. Furthermore, the eye doctor says she sees this condition co-morbidly with ASD, which I find fascinating. He is wearing tiny little bifocals and with the exception of a streak of glasses throwing a few weeks ago, he has been amazingly compliant and his doctor is happy with his progress so far. Why this is important: A lot of his behaviors seem to be linked with his vision. He used to throw a tantrum every morning when I wouldn't carry him down the stairs (problem after shoulder surgery). He also didn't have a shared gaze or great eye contact (did some pointing but not a lot). Now he's much more normal in that department and his physical abilities seem to be catching up...he's a real dynamo at the playground, which makes me super happy.
At the same time we were getting the eye diagnosis, he had taught himself the shape and written name of all 50 states and started work on Europe and Africa. Also planets of the solar system and is full on reading...I started to do a daily schedule but instead of pictures, I just wrote words out and he would read and sequence the activities.
The behavior continued to be spotty though so I took him to a speech path here in Chicago, Phyllis Kupperman, who has written numerous papers on Hyperlexia and ASD and the connection between the two (or lack thereof). She assessed him to be reading at nearly a 2nd grade level. That paired with the speech capabilities around 2-2.5 places him squarely in the hyperlexic realm. She recommended a diagnosis of PDD-NOS but agrees that it is mild...i think it was a practical thing because what are you going to do with a hyperlexia diagnosis...for insurance purposes, it doesn't exist.
That same week I found out he was accepted into a public, full day Montessori program, which I think is the perfect solution for him, at least for now. The principal connected me with the family of another boy who has PDD-NOS and we ended up in his class (and he's getting a para this year which will help everyone). So I guess we are moving on to figuring out our next IEP revisions in light of the hyperlexia information and the context of a Montessori school.
He is so amazing and so confounding, and hopefully others will get some guidance from this post. I know I learned so many terms, including hyperlexia, from this post, and I am so grateful for the folks who shared their knowledge with me. If you compare my post from last summer to this one, I don't have all the answers but I am a hell of a lot more knowledgeable and my son is getting a ton more help, so, THANK YOU everyone! If anyone has any questions, I am more than happy to explain further...
