Live And Learn
Dear Reader Judy writes: “I’ve noticed that lately your essays regarding Alex have reflected a kind of despair. I hope you’re feeling more positive again.”
I’d begun to agree with Judy two weeks before her note even arrived. At that time, I noticed that recent Ned essays were about cute stuff, like giving him cocoa or taking him to the movies, and recent Alex essays were dire reports on erratic new sleep habits or my terrors about giving him ADD meds.
Jill once said that no matter what I wrote about Alex in the NICU days, I always maintained his dignity. I hope I still do that. I’ve left the poop issue alone — haw haw – just in the interests of such dignity, and I do try to remember that Alex might someday read this stuff. If I want one of my kid scowling at me, I’ll tell Ned we’re out of cocoa.
I’ve also begun to fear Alex would never read much of anything at all. Maybe the last five years are catching up to me. Maybe I’m just tired. Maybe it’s the lengthening chats with Ned, how I’m getting to know him, and how it frustrates me that I don’t yet speak Alex’s language. “There’s somebody in there,” I told Jill the other night on the phone, “and I don’t know how to find out who he is.”
Jill was on Cape Cod with Ned, at a cousin’s house. I had elected to stay in New York while Alex finished his last week of summer school. I’d also stayed behind out of fear that being somewhere strange for a humid week with Alex might be more work than my aging frame could stand. It was sweaty enough trekking him from playground to playground as he and I kicked off the Week of Me and Alex. During that week, I’d pick him up from school and we’d head off hand in hand on a mission to tire him out enough so he’d pass out and let me watch “Star Trek” in peace at 8 p.m.
Not a lot comes from Alex, I told Jill on the phone. It’s sort of all about him and you have to guess what he wants.
One of the toughest things about being the parent of little kids is that’s hard to just stop and look around. Alex may not have cocoa or Nemo, for instance, but he’s got things going on. Jill asks if I think he has “abilities.” I do.
He’s submitting to tooth brushing better and better. He’s begun to sit at the dinner table with all of us, at least for a few minutes and especially if there’s company over. He’s even eaten Chinese beef. The evaluation from his year of music therapy arrived the other day; turns out he has an affinity for the ukulele. He sings “Sesame Street” tunes in what sounds to my tin ear as on key, and he carries the notes of Ernie’s “Imagine That!” in good pitch. He sure didn’t get this talent from his father.
Often now in the evening, when Ned has gone to sleep, Alex will sit beside me in the recliner and watch TV. The other night he turned to me out of nowhere and said, “Give me five!” and he held up his hand. His slap, palm to palm, was firm and manly. I’ve had nothing close to conversation with him, but “Anything he says, he says very clearly,” Aunt Julie notes.
Alex gets his biggest points lately for picking up stuff, like parts of the wooden train and his plastic letters. “Alex, time to pick up, clean up!” As if priming a pump, I’ll drop a few toys into the bin to get him started, and he generally keeps at it until the stuff is off the floor and the bin is sealed. He’s doing this quicker and quicker — which makes it more infuriating to me when he stops, stares vacantly, and puts one of the toys in his mouth. I don’t know what to do at such a moment. He’s never had seizures — not even, as far as I can tell, the infamous “Stop ‘n’ Stares.”
He climbs our living room furniture. He screeches. He kicks Ned, whom he has also bitten. On playgrounds, he roots in other people’s bags and carriages for the bright, crinkly bags of junk food. Most people don’t mind, but Jill tells me an old Chinese lady yelled at him on one playground the other day. “He didn’t go back to her, either,” Jill says.
He usually gets down when I tell him. The other night, during a screeching fit, I actually told him to “Shut up!” — not only was that wrong, it was useless — and Jill produced a scented candle and said that one of Alex’s special-ed. teachers told her once that smells can sometimes distract and quiet a screeching kid. Lately, he just puts his teeth on Ned. Ned hasn’t noticed the difference in the experience, but I have. I hope this gets reflected in my essays.
I see I haven’t done a good job here of accentuating the positive. Future Ned essays deal with taking him to an amusement park, and watching “Star Trek.” Future Alex essays will probably deal with the tough transition to kindergarten, and more worries about his “abilities.”
Yes, he has abilities. I know he can learn. We all can. Someday I might even learn how to talk to him.
Jeff Stimpson, 49, is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at http://jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, and The Autism Society news blog.Tweet