Perception

The funny thing is that since the diagnosis was made "official" (having a neurodevelopment pediatrician at a renowned children's hospital verbally and in writing confirming the diagnosis), I seem to have developed a radar, of sorts, of seeing autism all around me.

This is not a unique occurrence. Every time we're plunged into something new, some major life change (especially one we hadn't foreseen), we become hyper-aware of people and situations that mirror our experience. When I first became pregnant with Hannah, suddenly everyone everywhere else was pregnant and babies and baby items were completely in the forefront, and everything else receded for a while. And when Hannah died, suddenly everywhere I turned, I encountered other people who'd lost their children. I think it's a way of trying to normalize and orient yourself when everything you know has turned upside down, or at least changed course.

So although I say that I've had Max's autism on my radar since he was at least a year old (with blog posts and correspondence and paperwork to confirm it), and I tell myself I knew this all along, I'm still reeling from having it confirmed, officially. Apparently having a child with autism is an entirely real-er and bigger thing than having a child who "may be" on the spectrum but who seems to be doing relatively well otherwise. When he didn't officially have it, there was a chance that we were mistaken, or he was just immature or needed some extra help with things and would grow out of it.

Now, however, it's real. He is high-functioning in that he has done reasonably well academically and behaviorally in mainstream elementary school classes thus far; he is obviously intelligent despite some communication delays; he is consistently progressing and improving. But I feel like suddenly I'm seeing him as others do, not as his mother, and when I look through that lens I can see where the diagnosis is obvious.

Today we sat together after school and did his homework, as we always do. For some reason, I felt extraordinary clarity and as though I were seeing into how his mind works, for the very first time. I could see that when he behaved as though he were distracted, or made lots of nonsense sounds or fidgeting behaviors, it was not just stalling tactics but that he was somehow overloaded and was stimming (and sometimes tuning out) as a way to cope.

We got off topic with a sentence about snakes and he started talking about what would happen if we had a pet snake in the house, and about how some snakes are venomous and some aren't; that if there were snakes outside right now they'd probably be hibernating because it's cold. He spoke very clearly and expressed his train of thought so much more efficiently than he normally does. I noticed also that he was much more responsive and logical in terms of conversation; he would answer a question fairly normally and in a reasonable time frame. He wouldn't always make eye contact but he was a lot quieter and calmer. He'd end sentences and look away from me, but I stroked his back and shoulders and it seemed to keep him centered and focused while he talked.

We got interrupted and he went right back to all kinds of stimm-y behaviors and is currently sort of jumping around/pacing around the living room, doing a mixup of a game and story about three Angry Birds play figures and how they fly and where they live. He stops periodically to flop on the couch next to me, sometimes crawling up and having me cuddle him, then he hops back down and continues the pacing and telling the story of the Angry Birds characters.

This feels so enormous right now. Logically I know that he has pretty much every chance of success (living independently + career based on his intelligence and skills), but I don't think I really saw him as he is until today. I have no idea how this happened; it was like pulling back a veil.

Maybe one of the reasons why I baby him is because if he stays a very young child (at least in my perception), then his behaviors and quirks are part of him being a cute little man, and don't have the potential for social repercussions and awkwardness with his peers and out in the world.

I know it's going to end up all right, and I know we are in it for the long haul -- while I was sitting there and feeling the reality of the situation for the first time, I also realized that I wouldn't trade it. I may wish for him to grow out of some of this and become highly skilled at coping with and managing himself and his environment, but I wouldn't want him to be anything other than what he is right now.

I think maybe I'm beginning to accept this. It is definitely a process like grieving. Not nearly as jagged or painful, but unnerving at times.