Thanks for all the input and sharing your stories! Can someone clarify for me what is meant by vision problems with EDS. Is it a problem with tracking moving objects and covergence/divergence, and depth perception? If I put a pencil in front of his face and move it slowly back and forth he has to put a great deal of effort into moving his eyes, literally can't keep his head from turning, and he screws up his mouth with the great effort of it. If an object is placed in the periphery, he can't find it without difficulty. He also now seems to have a bizarre ability to move his eyes in different directions on purpose, like one of those lizards.
I am currently taking him to OT and PT 1 time per week (privately), but I believe it is only approved through our insurance for 6-12 months. And even with that we still have large co-pays. dealing with insurance and getting him ongoing services is just as difficult as dealing with the school system. The second he meets a certain goal, he is exited. Then regresses.
In terms of the neuropsych, he wrote in the "Diagnostic Impressions" section: Cognigtive Disorder, not otherwise specified (due to history of language delays), Developmental Coordination Disorder, Mild Traumatic Brain Injury, Balanced Translocation, Possible Chiari-I malformation noted on MRI as an incidental finding.
In the past, various specialists (like the physiatrist) have also given him a diagnosis of hypotonia and flat feet and noted that he has joint hypermobility.
His IQ on the verbal section of the WISC IV was only in around the 85 percentile. But he has a history of language delays and speech dysfuction so I'm not sure if that is an accurate picture, or why there would be such a big gap between verbal and non-verbal (about 25 or 30 IQ points--non-verbal was in the 140's even with the block design that he didn't do very well on). I think he hit the ceiling on the other two tests. I believe that his advanced reading does not come from verbal ability, but because of hyperlexia (or something similar), or something like a photographic memory. He started reading a few years ago, but has never been very interested or done it very much. There was one other boy in his K class last year who read at an advanced level, so she had them read books like "The Mouse and the Motorcycle" together or to themselves, and then asked them questions about it. Should be interesting to see how the current teacher deals with reading. I noticed she does not have hard enough books (they only go to Level L on her shelf).
I asked his first grade teacher if he can do math on the computer in the classroom, and she said yes, but launched into a spiel about how even if the class is learning 2+2, DS would probably still enjoy manipulating blocks with the rest of the class to learn these concepts. DS is very laid back and will cheerfully go along with whatever she says, but I feel bad for him having to deal with stuff that is way too simple
I talked to the spec. ed director with the district and he said that obviously DS needs a comprehensive eval and the fact that he is 2e is causing issues. He told me that he can help ensure he gets a proper eval, since I believe the school will do a bogus one without intervention. I think he is kind of at a loss too, though, and so I'm looking for ideas of things I can ask for. I told him I want to wait and hear what the neuro-ophthamologist says on the 18th. The pediatric ophthamologist that I had been taking him to was completely unhelpful, at first telling me that most likely DS's sixth nerve palsy from the accident would never resolve and he would always have crossed eyes or loss of periphery vision, and then when he did improve after a few monnhs, she said his eyes were "perfect". She dismissed what I told her about the OT and PT's findings about his eye tracking.
