A parade of sparklers from last summer, about a thousand years ago.
I think it is me who is regressing this January. We did a lot, learned a lot, and worried a lot in 2012. I am wiser but much less brave than I was a year ago, having gone from sending our boy away to camp for a whole summer to being reluctant to send him to school for even a day. Sickness and Sandy Hook (not to mention a totally dysfunctional Federal government) make me think we are more vulnerable than ever and while we have a plan (as of yesterday) to get him healthier I haven’t the slightest clue how to rebuild our confidence. We were always wary of the outside world; now the outside world is wary of us. When we ventured out over the holiday season I noticed that I stopped using the word “autistic” to explain odd behaviors – in fact I avoided saying anything at all to anyone about him, and made more of an effort to avoid eye contact. I am ashamed that I want to be invisible, angry that people are spreading ignorance and fear about autism and appalled that I have allowed it to affect my behavior. Still, we go out a lot and, like many parents these days, we do our best to show and tell our children how much we love them. And, quite literally, we hang onto them a little tighter than we used to.
We got the best hugs ever and spent much of the day just soaking up the feeling of being together again. It was hot and humid and so group activities where we could socialize and learn more about camp just seemed impossible – we strolled off in search of a breeze and found it on a hill overlooking the lake.
One look at his cabin made me feel so proud of our boy – living in close quarters in that heat (lots of fans) for so long would test the best of us. And of course this is no ordinary group of boys. They are quirky and sometimes challenging kids, and fortunately the counselors are young men with good hearts and lots of energy. It is clear that he copes by drawing – the walls next to his bunk are plastered with art in which every part of the paper is colored. Our girl found a little note written on the wall next to his pillow: “6 weeks can take forever and all summer.” At that moment it was hard not to whisk him to the car and bring him home, until I asked him what he missed most. He looked wistfully away and sighed. “Wireless internet.” Okay, he can stay.
And the reality is that he showed us he has the tools to stick it out for another couple weeks, and do so happily. His knee is great, he is taller (I think), more muscular (for sure), and much more self sufficient. He swims twice a day and has learned to water ski. He got and wrote some terrific letters; there’s an impressive pile of them next to his bunk. I am overwhelmed at the generosity of all of the friends and family who make the effort to write to him and send him care packages. It is an unexpected blessing of this whole enterprise that so many people would take the time from summer work and travel to think of him – he got packages and postcards from Europe, Ohio and California representing family, friends and teachers he has known at every age all the way back to preschool.
Our world – his world – is bigger than we thought. That alone is worth the price of separation.