It was only a few weeks ago that I wrote about how Simon was struggling to roll with the testing that he inevitably has to deal with. There are some other things adding to the stress. His teacher feels confident about his progress, but Diana and I don't share her enthusiasm, in part because of what we see after school.
First off is the medication situation. Simon has rotated through a number of different medications, and even with (expensive) DNA testing to see what should be more effective for him, it doesn't seem like they're helping. When he first started more than a year ago, that first thing he took seemed to have immediate impact in his personality and focus, but it didn't seem to last. He's back on another flavor of amphetamine right now, but the doctor questionnaire that his teacher filled out seems to indicate that it's not working. They may suggest a higher dosage, but the problem with this one, and even more with the previous one he took, was it caused him to pick at his skin obsessively. The experimentation with different drugs is a long process, which sucks, because he ends up cycling through an academic quarter between doctor visits. It's hard to iterate that way, and that f'ing testing is on the horizon. My concern about getting out of third grade isn't just that being held back would mess with his already fragile self-esteem, it's that doing it over would make him bored and more disengaged.
Then there's the challenge of tutoring days. Simon gets extra help after school a couple of days a week, so on those days, he gets to school a little after 8, gets home around 4, then has homework and online lessons to do. I don't know if you remember what it was like to be 8, with our without ADHD or ASD, but that's a long day to be that plugged in. I'm generally of the philosophy that a kid has to learn to be responsible, and sometimes do stuff that they don't want to do, but we can see the difference between "wants to do other things" and "mentally spent." These long days definitely fall in the second category. Even the things that he's good at become difficult for him to engage in. I've seen him on a weekend plow through a reading exercise online, anxious to get back to something else, but on a tutoring day he can't even choose a lesson. There are tears for not getting your way, and there are tears from just not having anything left.
Most days, the worst of the drama associated with this has run its course by the time I get home after work, so not only do I stress about Simon's state, but also Diana's since she's on the front line. I don't know what to do to help two humans feeling defeated, especially when I'm a little spent myself from work. I can be supportive, but it doesn't resolve anything. What I feel like I need but can't provide is a faster iteration cycle around the drug experimentation (and I'm not an expert to say that it can even go faster) and the right kind of home instruction approach to get the boy feeling confident about simple things like remembering multiplication facts. And by the way, that's something to fit into the two and a half hours every evening that I'm there before he goes to bed.
I don't have any particular conclusion to reach for with this post... I mostly just want to get the words out and remember what this feels like. Simply talking about problems out loud helps me. Maybe tomorrow something will be more obvious.