My son has recently been diagnosed with Ehlers Danlos. He is very similar to your son - has many of the same issues, particularly the motor issues. School was becoming a horrible place for him. Without a dx and accommodations, etc., he literally starting having a breakdown (resulted in an anxiety disorder Dx). It is actually such a relief to have the Ehlers Danlos Dx and I feel so much stronger with the school now. I also now undertsand a lot of symptoms that my son has that I never knew were part of the the condition (poor heat regulation (my son is always hot), trouble falling asleep, dental cavities, vision issues, etc).
Now, I have a report from a top genetist telling the school that handwriting accommodations, such as a scribe, computers, extra time, rest, etc. are "medically necessary;" and, no, you will not build his stamina forcing him to write and, no, he will not out-grow it. And, no, he is not fine just because he isn't your worst student at writing in the class. It took a lot of fighting with the school to get my son's accomodation (this board helped and supported me immensely)... Let me tell you how much more solicitous they are now with a top doctor (and lawyer) behind me. And a REAL PHYSICAL condition that the school can not dismiss or argue around. I can shut them down in second now. My son is thriving now.
I pursued testing him for the condition of EDS/connective tissue disorder based primarily on the information I got here - particularly from Lori H. It was recommended that my DS see a connective tissue specialist to me sort of off-handly by a doc I took him to in an attempt to get to the bottom of his hypotonia. But, the doctor recommending didn't seem to think it was a big issue and, like you, I didn't think his hypermobility was severe enough. When I posted about here Lori H told me the story of her son at my son's age. It was eerily similar. I made the appoitnment that day with the connective tissue disorders clinic. (But we had an over two month waiting time). My son has a mild form of it, he has the hypermobile type and I didn't think his hypermobility was all that severe (probably b/c I have it and never thought much of it; and, also, it is not nearly anything close to what you see on the internet). Nonetheless, he has it and it REALLY affects his fingers and wrist and hands. Like your son, his fine motor and motor-visual integration are deplorable. Anyway, it does sound like your son has it. I urge you to pursue testing and looking into it. Do not be dismissed or putt-off as it is not okay or normal for your son to be struggling the way he is. There is help! And you can MAKE the school help and accommodate. Can he click his joints? My son clicks his joints and lately I have found him "banging" (with his fist) certain joints back into place (ankles and knees). I never saw him do that before this month. I just noticed the banging recently and asked him about it - he said his symptoms come and go ...He goes through good periods/phases and less than good. he said he used-to occassionally have to bang his ankles on a chair or desk to get them back into place but his knees just recently started bothering him.
The genetist said DCD/Dyspraxia is very often co-morbid with Ehlers Danlos.
Last edited by Irena; 09/06/13 12:16 PM.
