Irena,
That's wonderful news that they are finally acknowledging and helpful re accommodations - YAY!!!
he gets so lost in that it seems like he's never on-task but a lot of it is due his getting lost in the transition and needing assistance and being behind because of that.
My ds had many of these same challenges when he was your ds' age. FWIW, I would not assume he's "lost" - it may be that the tasks he is being required to do take too long given the amount of time he has to do them in. My ds moves more slowly than other kids due to his DCD. It's not something that a person would necessarily notice unless they specifically looked for it, but it was something that I could ask ds about and that was obvious to me as his parent over time. I wonder if your ds' Ehlers Danos (? I forgot how to spell it - sorry!) doesn't impact him in a way that it's more of a challenge to do the tasks involved in transitioning than it is for his classmates. Even if it's just a tiny bit of a challenge, when you're looking at a transition period of only a few minutes where a child has to pick up material from their desk, put it into a slot or folder in another area of the room, go to their cubby to retrieve a different book etc it doesn't take much for it to look like a child who is slightly challenged with movement is lagging way behind.
There may be an organizational skills component involved too - my ds could not for the life of him get his homework turned in in his 4th grade classroom, even though from the teachers' perspective there was an obvious and well-marked and every-day repeated system. The problem for my ds was two-fold - what was obvious and well-marked to the teacher wasn't at all obvious to him, because he was at least a foot shorter than his teacher so the box he was supposed to turn it into didn't look as obvious when he was looking up. The box was also sitting on a shelf that was right next to the classroom door - from the teacher's perspective that was an obvious location because you should come into the classroom and right away toss your homework in the basket. From my ds' perspective, that area of the classroom was crazy-crowded in the morning with the teacher standing at the door greeting students and parents, with students hanging around trying to talk to the teacher before someone else talked to her, with kids lugging in backpacks and snow clothes etc. So what looked easy to the teacher looked like a mountain to climb to ds. And.. he was supposed to remember to turn in that sheet of homework at the same time he was coming in and supposed to take off his snow gear and put up his backpack and lunch and then go to his seat and start on whatever first-thing-to-do-task today was (there was always some short assignment listed on the board to do while everyone was getting settled). And that assignment involved handwriting 99% of the time. So he was overwhelmed with tryinng to remember everything he had to do and that mixed in with worry over not having a clue how to approach the writing.
Things we did to help - first, he was given organizational goals in his IEP. They weren't strong so there's really no reason for me to bother writing them out here, but the main goal was to have him become increasingly more successful in getting his homework turned in.
I think what he *needed* was:
1) A one-on-one instruction for the times he had specific tasks he needed to learn how to do that required organizational steps. These were the repeated things such as turning in homework in the morning.
2) He needed accommodations of some form to help him with getting ready to go to lunch and to recess. He didn't receive any, so he worked out his own - lunch came first, then recess, so he put on all of his snow clothes before he went to lunch so that he wouldn't be late for recess (he had his motivation lol!). He also took his own lunch to avoid having to stand in line waiting for hot lunch, therefore giving himself more time to eat. My preference would have been for him to be excused from the lunchroom 5 minutes early so he could put on his snow clothes then and not have to worry about missing recess. Things like that.
3) He did have a bit of an accommodation at the end of the day. Each student had to copy the night's assignments into their "daytimer"... and ds was not allowed to leave until his teacher had checked off that he'd gotten his assignments written down. Eventually the teacher implemented this step for all the students, so it didn't set ds apart and it helped the teacher because honestly, ds wasn't the only kid who wasn't keeping track of his assignments
I would have preferred that ds be allowed to take a picture of the board or that the teacher give him a written copy of the assignments or that ds be allowed to get a copy from another student... but the school felt it was important for ds to do the copying, even though he made copy errors due to dysgraphia and it caused wrist pain and fatigue.
4) I did a *ton* of support and scaffolding at home to help teach and reinforce organizational skills (and to help with self-confidence by seeing that he could be successful with organizational skills).
So that was elementary school. Things got a lot better in middle school for several reasons. The first is irrelevant to your situation, but ds moved schools, and I had better access at the end of the day so that I could go into school at pickup, and purposely go through all of his classes and homework assignments with him, double-check it against what was written on the board (with him) - and this was another area that the school changed help with - the teachers at his new school were much more organized... and they also kept their classrooms lit better - more on that in a minute. Anyway, we would also make sure he had every book and item he needed for homework in his backpack before he ever left school. I did this with him every day for at least a semester, probably more like almost the full school year. He didn't particularly like it because none of the other moms did it with their kids, so after about 1/2 year he proposed that I only check on Fridays, and he would keep up for the rest of the week. We tried that and it worked - not totally perfect right away, but it did work. I slipped back to only having to check about once every two weeks at the start of the next year, and by mid-way through 7th grade he was taking care of it independently and is doing *very* well.
Anyway, the reason I started the daily end-of-day locker check was two-fold - first, he needed it. But second - his SLP had been reading up on dysgraphia and thinking through the issues with automaticity, and she had pointed out to me that dysgraphic kids need a *lot* more repetition than neurotypical kids to develop automaticity - not necessarily just with handwriting but with other types of tasks. So when ds had something like that end-of-day organize yourself task that was challenging, I chose to approach it assuming he just needed a lot of repetition to help it become automatic.
And to be honest, I think going through puberty and maturing helped with the organizational stuff too. He still moves slowly thanks to the DCD but he's become much more capable of handling organizational-related tasks.
Hope some of that helps!
polarbear
re - ps, re the lighting. At ds' elementary school the teachers all kept very dark classrooms - his 2nd and 4th grade teachers both had issues with fluorescent lights. And we have relatively dark winters here, so there wasn't a ton of natural bright light flooding in through the windows of the classroom. His middle school is very brightly lit and I think that helped. We can even notice that it helps at home when it's a bright day.
