One of the first things I learned living in New York City was that you had to shut the door at the end of the day. You had to have some slim barrier between you and the stuff that comes when eight million people are crammed into a space way too small. It would be nice if I could do that with Alex.
“Hey!” he says over by the couch, “okay okay okay. Oh no. Hey Mr. Ladder…” He bobs and struts to the inaudible sounds of the iPad. Who’s “Mr. Ladder,” and why does he sound so much like a villain from a superhero show I watched years before autism was in my life?
I’ve spent a lot of time with Alex this summer. Summer school takes only from 8 a.m. until about 3:30 p.m. Last winter, during the real school year, he left the house at 7 a.m. and returned home from an afterschool program around 5 p.m. – what must’ve been a delicious 10 hours for a young man pushing 14. But programs for Alex, who’s neither a child nor an adult yet, evaporate like puddles in the bright sun.
Depositing, I think, folks on our benches and in our doorways. Yesterday on the subway, a man sang to me for 10 minutes about rain, I think (it’s never Michael Jackson doing these things for change). This morning I saw a man bob and weave down the sidewalk and talk to pigeons. I can’t remember how many times I’ve walked by someone babbling on a park bench.
Home at 3 and straight onto the iPad. I know I should be doing, well, things with Alex, and that some parents have surrendered their lives and livelihoods to studying how to be with people like their children. I’m not one of those parents, though I’m coming to suspect I should be. So Alex plays his Elmo on the iPad and I write things like this essay and we go on until Jill comes home from work in a few hours.
Bob and weave, bob and weave over by the window. Chattering at about 5:30, darting into our bedroom to find the iPad. Out to the couch with all the living room lights on, to the couch where I hope he stays as I listen in a half-doze for the rest of the night. You must rest, you have to be able to shut the door. But we can’t.
(Oh no. Hey Mr. Ladder…)
When Jill and I fight – and that happens a lot more than it used to, believe me – there may be me and there may be her and there may be things, but overriding all for me is the feeling I get when I look at an Alex, who suddenly has a mustache and who is almost as tall as Jill. A blink ago he was squirming in the NICU, and in a blink he’ll be 21 and out of the protection of public education. Two hundred and fifty weeks or so until 21; I figured it out the other day in a mood inspired by beer and what Jill calls, in our fights, “unemployed depression.”
When he hits 21 and if we can put all the things in a row, he’ll go somewhere and we won’t see him as much. We’ll tell ourselves each night then that Alex likes this new arrangement – and hell, he’s no baby in the NICU anymore and he probably will like it – and that we need him in a place from us. We’ll get up then and lock the door.