Right now, as I write this, our girl and her dad are in the living room. She is reading aloud from a book called Barron's Painless Earth Science. I know, I know, this is not a very summery thing to be doing on the weekend after the 4th of July. Prepping for Regent's exams that she won't take until next June is just about no one's idea of summer fun.
But that's what we do. That's our sort of summer fun.
Just now I can hear her reading about the phenomenon of urban heat: how the concrete and asphalt of the city absorbs more solar radiation than the surrounding countryside, and so the city gets hotter than the country.
Even so, we're not headed to the beach (too bright, too hot, sand too scratchy, waves too loud). And we are not headed to the pool (too old for the kiddie pool we long enjoyed and the other pool is too big, too loud, too deep, with too many kids, and much, much too splashy.)
We're staying in, enjoying the miracle that is air conditioning, and reading earth science.
This year we stayed in: we watched the fireworks on TV. Our girl was thrilled -- she waved her American flag in front of the TV and exclaimed "Happy birth-day, America" as she reveled in the music of pop stars she knows (and that we don't).
"This," she exclaimed with unbridled joy, "is the best Fourth of July ever -- no crowds, no heat, and we can see everything!"
As Jess at Diary of a Mom writes beautifully, autism families adapt. That's what we do. That's how we roll.
The struggle, at least for me, still comes from the oughts, or what I long ago dubbed, the "ought-ism."
It's summer, so I feel as though we ought to go to the beach, or at least to the local pool. It's the Fourth of July, and we live in New York City, so I feel as though we ought to go to the Macy's fireworks show on the Hudson River. It's summer, and I feel as though she ought to go to camp, or on a cross country trip, or do something besides watching TV, playing video games, and reading the Barron's Painless Earth Science prep book. I feel as though she's 14, she ought to have a friend by now, even if that's just one good friend. And I feel as though I ought to be a better parent — ought to have her summer programmed for the greatest possible social, emotional, and academic growth.
And this whole litany of expectations banishes me from the magic of our lives together.
I try to shake it. I do my best to throw off what the Buddhists call the secondary suffering that takes what is and layers on top of it a set of judgments of what ought to be, of how we ought to be, about how I ought to be. Some days I get there, other days I just don't.
Oddly enough, this becomes just another in the litany of oughts: that I ought to always be present to the magic of her life.
Sometimes I'm not. Sometimes I wish things were different. I wish she was headed off to camp to meet up with friends who love her. I wish she were begging to go out to the swimming pool, and that she could swim well enough to make that possible. I wish we were bicycling on the Hudson River Park bike path. I wish we were headed across the country on a big impromptu "stop where you will" road trip, or off to Paris to visit her father's cousins and see the Eiffel Tower.
And then I have to stop, and look back to the beginning of this post: "Right now, as I write this, our girl and her dad are in the living room. She is reading aloud from a book . . .".
She is reading. Aloud. From a book.
That was "the ought" that got this blog started: that she ought to learn to read, even if her her genuinely devoted teachers at the time were finding this assignment too daunting.
So what ought we go for next? The social skills of friendship look every bit as daunting as reading once did. And then there are the ancillary recreational skills of swimming, bike riding, volleyball or tennis.
It's a delicate balance between acceptance and advocacy, between embracing the girl we have while opening the door for the young woman she's becoming.
I'd like to say that this balance is like bike riding: that once you've done it once it comes naturally. But it seems I'm still in need of training wheels.