SiaSL, you've clearly put a lot of good thought into absorbing the diagnosis. It's a lot to handle.
The private evaluator (with whom he got the very worst results on visual memory) brushed it away as an artifact of testing. She said if she had been showing him pictures of reptiles he probably would have aced the test. She also ruled out LDs.
Well, that's good. AS tends to come with attention and processing issues built in; they're on the list of things to watch for at school. I guess at this point the proof is in the pudding: if you see executive function/working memory issues in real life (as opposed to the testing) you can deal with them.
My DS had, as part of his therapy, elementary instruction in following instructions. We would send him on errands all over the house (increasing complexity over time), and he had to do a job and then check back in to let us know he did it. This improved his ability to hold a task in his head for long enough to do it.
The most confusing has been the looking in the mirror, I guess. He is a lot like I used to be, except more intense and more socially clueless.
One of the interesting bits for us has been trawling through the family tree and noting where DS got various bits of the genetic package. And you know what, that mostly gives us hope. Yes, we are an anxious, perfectionist, absorbed-in-odd-topics, and (in part) socially clueless family; yet we are all functioning pretty well and even gainfully employed. That appears to give DS9 OK odds for the long term.
Well, bright, or little professor syndrome? It is kind of painful watching him attempt to lecture completely uninterested mothers of toddlers on obscure points of animal care at the local mini-zoo. The adult level of conversation/abnormal interest in narrow subjects is a symptom of AS, after all.
I sympathize. Mine went to kindergarten telling other children the Latin names of cloud formations and lecturing on astronomy. It was not all that fun.
Your job will be to broaden his world, to the extent you can. And yet-- I give you permission to sometimes just enjoy the astonishing memory and capacity for seeing categories in their complexity that comes with this territory. A kid like this CAN be bright or gifted. It doesn't fix the problems to be bright, the problems are still very real and take serious work (and as you've noted, "bright" can hamper others' recognition that there is a problem), but you might as well enjoy the ride you're on some of the time, too.
Bad: behavior issues (not listening to the teacher, not following instructions, many conflicts with peers a few of which got physical, complete social isolation). K was a nightmare, and while he wasn't formally assessed he was probably clinically depressed ("Mom, why don't I have any friends? It makes me very sad."). Was sent home from school for safety/behavior issues at least once a week the first month of 1st.
Good: his 1st grade teacher implemented a behavior plan of his own (completely unassisted by the school, mind you) and had the right combination of firmness and flexibility needed to handle him. His 2nd grade teacher looks like she will be the same.
Those teachers sound terrific. And those bad spots sound awfully familiar. Sorry you're going through this...
Things that helped us most:
--private ABA therapy, with a case supervisor who is also willing to observe and strategize with school staff. We started with 4 afternoons a week in Kindergarten, have backed off to 2-3 afternoons a week. This yielded the biggest gains in skills for both school and life. It included structured play dates to build social skills in a realistic setting. Cognitive-behavior therapy can be almost as good, and can be important for a child who is depressed, because it teaches resilient self-talk.
--working with school until they understand the needs AND meet them. This includes the IEP, which guarantees legal rights I would not wish to be without at this stage.
BTW they should not be routinely removing your DS from school for disruptive behavior; it rewards the behavior by providing escape. They need to work out a plan (preferably with the behaviorist!) that will reward the right behaviors and discourage the wrong ones.
--medication for anxiety and attention. This vastly improved DS's ability to participate at school.
--a class for DS in third grade that taught about AS. He was feeling terrible about himself; it was incredibly consoling for him to learn that it was AS causing his problems, not that he was a bad child. In retrospect, I should have done this even earlier.
Academics... I have ignored those. My husband (type A overachiever) is engaging into some cramming.
LOL. We completely ignored academics in K-2. We only thought about social skills. I think this was OK-- we put out the biggest fire first. After 2 it became clear that we needed to negotiate about academics too, but we're still glad that we dealt with the AS intensively in early elementary.
Go redo the IEP dance with the school to get help from a behaviorist. Last year's evaluation led to denial of service (all scores average smack at the 50th percentile, yipee!). The school lost all motivation to intervene when his teacher (who went above and beyond throughout the school year) finally figured him out. Once the behavior issues were under control (about 2 weeks before the initial IEP meeting) all the urgency that had pushed a fast and extensive assessment process just disappeared. The school psychologist, who had been the first to raise the possibility of AS, didn't even do the ADOS, although it was on the assessment list. That's what the private assessment was for. I am exhausted just thinking about it, and have been procrastinating on this far too long, actually.
I hear you. Can you get those awesome teachers to make a list of interventions they're already making, and use the IEP as a way to ensure their continuation? Those teachers may also have ideas on what supports could make their lives and your DS's better.
Your DS may benefit from services from a SLP, if he has pragmatic language issues. Michelle Garcia Winner's curriculum is good for this. My DS has quite a bit of daily time with a special ed teacher pushed into the classroom who works on his weak spots.
We have at times had to hire a special ed advocate to get what DS needed.
And we are (finally!) getting into a social skills group geared toward Asperger kids.
Good! We have had mixed experience with these, depends on the skill of the person running it and what the other kids are like. (At worst: a whole group of kids lecturing reciprocally about reptiles. At best: real conversation practice and increasing self-awareness about "what I do that annoys other people."). Surely worth a try.
You might also like the discussion board at
http://www.aspergersyndrome.org/ -- it has been important to my education.
DeeDee
