Mary, my dd's vision therapy lasted a little bit longer than one year. We were given a plan at the start from the dr which spelled out what would be accomplished and how long it should take (the original estimate was 6-9 months). Our dd made huge gains during the first three months; I could see her ability to track (eyes together) improve within just the first few sessions and by the end of three months she was doing sooo so much better with tracking and that's when her reading ability really took off. She continued to make progress for another few months but by the end of the year she was no longer making much progress and started to refuse to do her exercises, so we all (myself, dd, her therapist, her eye dr) mutually agreed it was time to stop. Her challenges in addition to tracking had been double vision and one eye shutting down (both due to muscle weakness) and a severe lack of peripheral vision. Her double vision went away completely at some point in time during therapy and the signs (tilted head etc) that the vision in one eye was shut down also disappeared. Her peripheral vision improved (of course) when both eyes were working but it was one of the things she was still working toward when she quit. I wish she'd stuck with it until she was completely finished with her course of VT but her therapist was concerned that if she continued she would burn out and potentially slide backwards.
She quit VT at the end of 3rd grade, and she's going into 5th grade this fall so it's been a little bit more than one year since she quit. There have been a few times during the year when I know she was seeing double-vision, and during the past few months she seems to be reverting to her more bumping-into-things type of behavior which I think indicates her peripheral vision is declining. I think that once she is a little bit older we will probably offer her the chance to go back for more VT if she wants to; in the meantime we have a notebook full of the exercises she did which she can do herself at home as well as a few things that we learned in VT that she can do in school if she's having a tough time, and no one around her would realize she's doing something to help her eyes.
I'm not familiar with hypotonia, but my dd had low muscle tone in her trunk when she was younger (actually I think she still does... just not quite as bad as it once was). Between the low tone in her trunk muscles and her double vision, she fell off of most chairs (repeatedly... to be honest I think she sorta enjoyed falling off chairs...)... at home she usually stood up to eat instead of sitting in her chair. She has one of those cushions to sit on which she likes, but she'd fall off of that too. Her sensory OT suggested she wear a leotard under her clothes to school so that she'd have the sensation of the fabric right on top of her skin, and that helped a little bit with keeping her still when she needed to sit still. I'm not sure if there's an equivalent clothing solution for a boy... but maybe something like that would help. She also was allowed to stand at her desk to do her work as long as she wasn't distracting other kids or goofing off etc. We also had our dd swing to help strengthen her core muscles (it also helped her work off steam when she was frustrated).
"Most of the time school people don't realize that it's most likely more a physical thing than an ADHD or ASD thing (not that he has those diagnoses but I feel like people kind of hint at it)."
This has happened with both our dd and our ds - and I think part of it is simply that teachers more often see kids who have ADHD or are on the ASD spectrum so that's what they are familiar with. As a parent you just have to keep politely bringing up what your child's challenge is and how it impacts them at school. When our ds went through the IEP eligibility process ADHD was once again suggested as a "possible alternative" to SLD by the school district, so we purposely had him go through a private ADHD evaluation simply to rule it out. Had we not done the private evaluation our advocate had advised that when the school brought up ADHD we should formally request that the school do a functional behavior analysis - which is an analysis that includes input from teachers and parents.
"I'd love him to be able to take tests orally, etc... but will that only feed his diability? "
By feeding his disability, I think you mean will he become dependent on this at the expense of developing his handwriting skills etc? I don't think so - you can have him work specifically on handwriting at a time that *isn't* a test-taking time.
"All his plan now provides is OT weekly, a special cusion for sitting and that's it. I think it needs more but am lost as to what to ask for, what is reasonable to ask for, and what he needs. "
Have you asked his pediatrician and his OT what they think he needs in the classroom? You mentioned fatigue when answering questions - do you have any gut feeling re what causes the fatigue? Is it sitting too long? Something else? One thing I wonder about from your description - would it help your ds to have breaks where he can get up and walk around? My ds12 was allowed to get up and take a bathroom break when he hit a wall in trying to output written work (he has an expressive language disorder). He didn't really need to go to the bathroom but having that "break" allowed him to get up & walk and not look like he was just goofing off to the other kids. DS also has some other little tricks that he uses in school - one of them is to chew (either chewing gum or granola bar). DD keeps a water bottle at her desk (the kind with a straw in it) so she can suck on the straw when her eyes are bothering her. Those are both very specific to each kid so they probably won't apply at all to your ds, but the idea is that over time and with advice from the people who worked with them we came up with little tricks that helped them out individually. I suspect that is what will happen with your ds - so my last piece of advice is to hang in there, and don't worry if you don't have all the answers right now. You can always add an accommodation at a later point in time when you get the idea.
Best wishes,
polarbear
