"Mom, when your face looks nice but you say something mean, it just confuses me."
Sky said this to me a couple of days ago with a clear sense of conviction. He was responding to how calmly I'd told him that he needed to pick up his toys or they were going to Goodwill. And when he said it to me, I realized we were finally at the other end of a difficult three weeks with Sky. Not only did he properly identify what was bugging him, but he also clearly articulated it to me. (And in that simple sentence he also reminded me how hard he works to sort through and make sense of the myriad social cues he encounters every day. No wonder the kid acts totally nuts sometimes. Between the multiple confusing social cues and the incessant sensory static, he's got a lot on his mind. But that's another story...)
For the three or four weeks leading up to that moment, though, Sky had been way out-of-sync. He'd shown regression at school, with more outbursts and behavioral issues than usual. At home, we seemed to be stuck in a pattern of defiance and fits of anger. I can't imagine anything more heartbreaking and demoralizing than these regressive episodes that seem to come out of nowhere and that offer very little indication of how severe they will be or how long they will last.
This time, the regression started right before he got sick with bronchitis. I can always tell when he is about to get sick. His behavior noticeably deteriorates. In fact, his behavior has become a fairly accurate predictor of when something is going wrong with his body. (Unfortunately, not every regression is tied to illness. Because THAT WOULD BE TOO EASY! Sometimes it's stress, sometimes it's changes at school or home, and sometimes it's just Sky being a seven-year-old boy.)
Ever since his diagnosis, we've been left to our own devices in terms of figuring out what therapies to pursue and where to find them. Someone told me it takes at least six months post diagnosis to feel like you a starting to get a handle on things. By six months, we'd managed to get Sky into occupational therapy and speech therapy. We'd also managed to get him into a social skills group and had made considerable progress on getting support for him at school. We're almost 15 months post diagnosis now, and while Sky has made great strides in terms of his social and pragmatic language issues, there's still a variable--in my head I call it the "plus X"--that I haven't been able to figure out. We know that some of the unwanted stuff comes from his sensory issues. We also know things are worse when he is tired or sick. But lately, I've been trying to make more sense of the biomedical mechanisms involved in what goes on with him. (And, after much searching, I have finally found a doctor who is willing to engage with me in these conversations. Yay!)
I'd like to say that I feel enriched by this experience of trying to make sense of the kaleidoscope that is life with ASD, but I'd be lying. It's hard work, it's never-ending, and the target is always moving (and sometimes even shape-shifting). Am I glad my kid has ASD? No way! Do I love him any less? Of course not! Do I wish there was more support (social, cultural, and financial) for families with kids on the spectrum? Well, duh! But for now, we take what we can get and keep moving forward.
Check out this video from Stim Nation. With grace and humor, it reflects a bit of what it's like to have a kid on the spectrum.