I wrote a post about how having an autistic child makes you alone in many ways, from what you deal with to having to pull back from society to celebrating individual triumphs and heartbreaks. Paradoxically, Xan's autism has also made me probably more involved and included in some ways.
This week has been light on entries because Xan is in camp and I'm volunteering up there. Six hours being in charge of a group of kids, with two of those hours spent walking around a pool in 95 degree heat to keep count of them, will wear you out and sweat you down.
I imagine I hear some people slapping their heads in a facepalm, saying "Heat...pool...gee, what can the missing answer to THIS equation be?" And contrary to majority vote and popular opinion, I'm not so dumb as to miss this body of cool water I'm pacing around. Once I did try swimming with him and my group. It was great, for a while - Xan and I played. He loves the water, he loves playing with me (possibly the only area where I outrank Mommy in anything), and while we were in the water, everything went swimmingly.
<insert groan here>
But when it was time to get out...
Xan was overexcited and didn't want to stop, and ended up so frustrated at the good times ending that he tried banging his head on concrete. Well, I say tried. More like succeeded. Thankfully, in response to my mixture of shock, fear and command voice, he only managed the one time. But still. Ow.
Any parent who has seen their autistic child headbutt something solid and strong like concrete, a wall, a table, etc. knows how amazingly tough and impervious to pain their skulls can be. I call Xan hardheaded as a statement of fact, in grudging admiration, and also more than a little fearful recognition. They'll also tell you they don't want it proven time and again, and in that spirit I don't get in the water with him much anymore. I get to watch him have fun, and that means a lot.
The volunteers at the camp can handle him well. But I like being there so I can try and end things before they start, head off problems before they become meltdowns, and warn unsuspecting people who think it's just adorable Xan's come up to them and taken their hands that "You're about to go for a spin." It's unknown how many squares acres of carpet cleaning have been avoided by my timely warnings. I stay away from his group but am always a short walk away.
In addition to this, if something is going on at Xan's school I also volunteer. I'm pretty much penciled in as soon as any field trip for his class is planned. It's good to do and sometimes I bend the rules and get him something from a gift shop - an impossibility if I'm not there. Doing good by doing well, as it were.
One of the nicer things about doing this is seeing what Xan can do. In this recent camp, he's made a friend he'll go to. He mainly manhandles this friend, pulling his head down so he can rub his hair or ask for tickle or things like that, and this guy is a saint in training to put up with it. He does, with a smile. Something we get crafts that seem to be more Xan's than the helper's hands - eyes off kilter, a casual regard of picture lines, some organized chaos of a picture that tantalizingly hints at some strange order I can just see out of the corner of my mind. Some of the school outings have also shown me more of Xan, like the time we were in an aquarium gift shop and he reached out and grabbed a white whale stuffed animal - after we had left the whale tank, where a white beluga whale had hovered at the second platform where Xan had been, right over him, and they stared at each other for some minutes.
(No, I don't think there was some communion of the minds or a recognition between two spirits or the like. That would be a miracle and I'm a cynical person. But on the other hand, Xan putting those things together like that was a kind of personal miracle all my cynicism crumbles in the face of.)
In being with him more outside the home, where in addition to the control and familiarity there's a lack of surprise and novelty, I get to be part of something else different, unexpected and unplanned. In helping out, I get paid back. I also get to be included in some of his successes, strides and surprises.
My son's exclusion from much of normal society has let me be included in some extraordinary moments.