Sadness for your child

posted by Jeff | Wednesday, May 12, 2021, 9:45 PM | comments: 0

In the last few weeks, Simon developed a very serious tic, where he began to shrug his shoulders and tilt his head, violently and repeatedly. He's had stuff like this come and go before, like throat clearing and picking, but this came on fast. His teachers both let us know that they were observing it too. This one worried me a lot, because it seemed like there was some sudden and deep neurological problem. His doctor, however, chalked it up to stress, likely caused by the pointless state testing going on at school. It has mostly, but not entirely, subsided. He's very aware that he's doing it.

This was the latest thing, in a string of things, that have caused sadness on his behalf. He recently came home from school crying because there was some group activity where no one wanted to partner with him. Diana observed him on the playground, just before dismissal, hanging out with the teachers instead of playing with other kids. Tonight he expressed worry that once school was finished, he would never see his teachers again.

This certainly wears on us, and I live in a constant stream of guilt because I'm not there for most of it during the day. In fact, I'm usually just there for nightly routines that we can't seem to consistently make successful, and I lose patience quickly. It's just hard, all of the time, and it's emotionally draining.

I want to emphasize, Simon is not without joy. Last weekend, he got to hang out with a few of his neighborhood friends when our neighbor had a bounce house for his birthday. His return to a theme park last weekend was pure bliss. As usual, he loves to unlock achievements and play video games. But he is still emotionally immature, by a year or two, and coupled with all of the baggage associated with ASD and ADHD, he just doesn't fit in much of the time, and he knows it. I'll give him credit, he is surprisingly vulnerable most of the time, with us at least, about what he feels. Putting words on what he feels is something his therapist has worked with him on quite a bit.

We're also hopefully setting him up for success in school next year. While his grades this year tell a positive story, and his teacher and principal have been amazing, "the system" has largely failed him. His IEP process has been a total disaster. (One person from the district accounted for his poor handwriting as, "That's just how boys are.") The thought of him going to a middle school next year with 2,500 other kids seemed like a recipe for failure, so we made the decision to put him in a private school capable of meeting him where he is. Diana has been working on that for months, and she found a growing program that will suit him well. As with all things autism, there's a difference between intelligence and the interface to the world. For example, we don't know that writing is difficult for him because he can't compose a sentence, when it might be he just can't start when presented with blank lines and a deadline to put something on them.

I just want him to have more happiness, because I very much relate to his school experience, and those aren't good memories for me. I think we've got a solid reprieve coming, at least for a few months, with the end of school, and an opening world with fun things and a small network of friends with vaccinated parents. No kid should have to endure what he's enduring right now.


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