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JeffsLife
Wednesday, 15 August 2012
Dog Days

It’s been the humidity, which went up in mid-June in New York and never came down; even a day after a heat wave when the temp had retreated 15 degrees, the air stayed close. They warn the young and fragile about breathless days of high ozone, and Alex sort of continues to be both.

“It’s David,” says the voice on my cell phone. “Alex doesn’t want to go anywhere today…”

Jill’s got this thing about summer, spawned in the Mid-Atlantic region and the academic life of her now-gone uncle who had a place on Cape Cod. Being from Maine, I’d take a crisp October vacation any time. Point is, our summers have somehow and quietly ceased to be fun. I drink too much wine on too many June evenings and tell Jill in excruciating detail about how I dread the coming weeks when both boys will be loose from what society considers their education and I consider our babysitting. I’ve ruined a few summers in a row for her, and I don’t think either of us is sure how many more summers together we can handle.

Maybe Alex is picking up on this; maybe too he’s just a rebellious 14-year-old, like any normal person who’s 14. Often Alex doesn’t even want to go anywhere with David, the young man we hired a year ago to spend time with Alex and who has consistently come up with stuff to do for a few hours that Alex has liked.

This summer, my cell phone tingles in my pocket. “It’s David. Alex doesn’t want to do (whatever David had planned, which would have been fun). “We’ll be back home soon.”

Hard to believe Alex didn’t want to get on the train when he had a chance for Coney Island. Why’d he watch the roller coaster video the other night on the iPad? Still he didn’t want to go? What else didn’t Alex want to do? I’ve lost count: music stores; the Apple store; the Lego store. Alex is starting to give people a hard time as he tries to figure out the world.

Summer school seemed to bore Alex (who’s in what they call a “12-month” educational program). He just didn’t bounce up the steps of the morning bus like in some six summers past. His summer class mirrored the class of the regular school year – same school building, same classmates, On the last day, they sent home a construction paper Olympic torch. Nice work,  but Alex will be 15 next summer.

He goes to camp in a few days, and will be gone for 10 days. Maybe that will save this summer. Wish I was going to camp.


Posted by Jeff Stimpson at 4:15 PM EDT
Updated: Wednesday, 15 August 2012 4:16 PM EDT
Friday, 3 August 2012
The Door

 

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.


Posted by Jeff Stimpson at 4:29 PM EDT
Updated: Friday, 3 August 2012 4:32 PM EDT
Thursday, 2 August 2012
Guest blog today...
... at Occupy Healthcare. On communicating with doctors through the years, at  http://occupyhealthcare.net/2012/08/my-son-and-his-doctors/

Posted by Jeff Stimpson at 2:18 PM EDT
Updated: Thursday, 2 August 2012 2:19 PM EDT
Wednesday, 25 July 2012
Thank You for Calling

I'm wearing iPod headphones in the kitchen while making dinner -- and who in God's name would do that? -- when I hear the front door slam. I bolt around the corner and see Alex just taking his seat in the couch in the living room. Boy, that was a close one.

Until the phone rings. "This so-and-so in apartment such-and-such," a kind older lady's voice says. "I just wanted you to know that Alex was just in my apartment. I know who he is and it’s okay, but I wanted you to know that he just left, and I just wanted to make sure you knew he wasn't home."

Typical of my life that I'd hear this statement at the same moment I could look across the dining room and see him dancing to Elmo on the iPad. "I'm so sorry," I hear myself saying. "He did come back and thank you! I'm so sorry. I hope he didn't damage anything..."

"Well no," she says. "He just used my bathroom."

Jesus Christ. So sorry. He's home. It's all right. So sorry again. That's all right. Thank you so much for calling.

He's done this before. Like years ago, when the phone rang at 4 a.m. and it was a neighbor telling us that Alex had come in and turned on every light in her apartment. Like last summer, when it was almost a bolt an afternoon and a scramble to try floor after floor of our apartment building and listen in the stairwell for the telltale slam of a distant door.

Like two minutes ago, when I was scrubbing the bathroom floor (Alex's doing, too) and I heard our front door slam. I ran out and found Alex down the hall at the door of yet another kind neighbor who earlier was going out when we were coming in. "He's not home, Alex!" How many other less-kind neighbors hear me in the hall when I say things like that? Never has a shutting door sounded like it does to me in bolting times.

“Something about summer and Alex,” Jill emails. “Maybe you need to just take him out and accompany him in the elevator? Say ‘We will visit other floors. You can pick the numbers. We are not going to other apartments.’ It's just a suggestion.”

This afternoon I thought of writing a note of thanks to the lady from yesterday. “We’re sorry Alex intruded on you. We’ve talked to him about it, and it won’t happen again. Thank you for your understanding and kindness…” I felt like I was thanking someone for the gift of a Boggle game, and actually got half a sentence down before crumpling it up. What difference is a note going to make to someone who knows who he is and it’s okay? What makes me think it won’t happen again? 


Posted by Jeff Stimpson at 4:49 PM EDT
Updated: Wednesday, 25 July 2012 4:51 PM EDT
Friday, 6 July 2012
On the Edge

The small elephant sits on the edge of our dining room table next to the “3” scrawled in permanent marker. On the hutch sits the pig, the pirate, and the guinea pig next to the scawled “3A6.” The wooden figure that Alex swiped from his Saturday rec program, a blind Chinese man that he called “Uncle Rob,” sits on the right side of the entertainment unit next to the “2016” in black numeric stickers I bought at Staples because I thought Alex deserved a gift. To the left sit the plastic lion and lioness, flanked by the tiger, the big elephant, the rhino and the turtle.

Jill values all this furniture. The dining room table was her mother’s. The hutch and entertainment unit are Danish Modern and belonged to her beloved aunt and uncle, now long gone.

The stuffed moose and lobster are next to the “310” on one side of our coffee table. One rubber duck and “1168” in stickers sits on the other. The other sides feature the plastic cat, the plastic salamander and another rubber duck. The lamp table, the walls.

“Alex, cut it out!”

Autism and Destruction seem to go together like Peanut Butter and Chocolate (Googling "autism" and "destruction" nets 2.2 million hits; “chocolate” and “peanut butter” 26.3 million, but you get the idea.) Alex has had his obsessions:  black T’s, khakis, videos and YouYube on the iPad.

Fine, except the other night at dinnertime when he hovered around the table. “Alex, chicken?”

No. He bumped me aside and tried to position the tiny plastic elephant right where I wanted my stuffing. “Alex, I’m eating!” He doesn't eat like we do. If we'd been better parents he would eat like we do now, but we weren't so he doesn't.

He doesn't hesitate to pull out permanent Marks-A-Lot, either, and scrawl the numbers that mean something to just him beside the plastic animals on the edges. On the walls he uses crayons and pencils, which at least will vanish under Goo-Gone. "Lock up the pencils!" Aunt Julie suggests, taking time out of assisting her blind Chinese husband Robert. I picture a padlocked cage like at Michael’s where they keep the X-ACTO knives and the airplane glue.

On the walls Alex has pasted “Sesame Street” stickers and scrawled numbers. On the door of the linen closet he’s pasted a “1” and a “2” and scrawled what looks like two lines of “R’s”. Is it right that I call it “scrawled?” It makes him sound stupid, which I’m coming to see he's not. Just unknowable. When we get around to scrubbing the stuff off the walls, we will make him help us. That will make us good parents.
  


Posted by Jeff Stimpson at 3:40 PM EDT
Updated: Friday, 6 July 2012 3:42 PM EDT

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