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Alex the Boy from the publisher
JeffsLife
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
Monday, 2 July 2012
Voice

I've hauled Ned and Alex out for a Sunday afternoon. The streets of Manhattan are yellow, empty and hot. I steer the guys toward the shade, figuring this is the kind of street-smarts a good dad imparts. "Shade, guys. Hug the shade. Water's in Alex's backpack." Ned's wobbly. Alex walks and walks and then breaks into bobs and weaves. I wish he wouldn't do that. I'm sure he wishes he was home with his iPad.

"Michael's?" Alex says. This is the crafts store nearby -- and despite autism he sure as hell knows it's nearby -- where they sell the plastic animals he always and always seems to want. "Yes, Alex, we'll go to Michael's as soon as we go to the sporting goods store to buy Ned his baseball glove." Ned doesn't have a baseball glove. I had one by his age.

"Michael's?"

"Yes, Alex. We can go to Michael's now." Michael's is across the yellow hot street. It's 94 degrees. Is this the kind of future summer for the kids I brought into the world?

In Michael's Alex yanks my arm toward the aisle of plastic animals. Thing is, he got a plastic bear yesterday. Tomorrow, while Ned is at baseball, the plan calls for me and Alex to hit clothing stores to find the right cut of narrow pants and shorts that Jill insists -- and I agree -- he needs to look anywhere near, God, let's face it, normal. I think yet another plastic animal in our house would be a good reward for good behavior during clothes shopping, and tell him so.

"Fireman?" Alex says, holding up a $4 plastic fireman. I thought they just had animals.

"No, Alex. Tomorrow. If you're good while we're clothes shopping."

"Tomorrow..." Alex says. Does repeating words means he's moving ahead? We bob around this retail environment for a while: Alex fiddles with the idea of making me buy a wooden letter; Ned finds a wooden cruxifix and thinks you drive into the vampire's heart to kill him. I explain that no, you hold it up and keep the vampire away. I tried to show Ned "The Night Stalker" once. Ned didn't seem interested. "Alex, let's go!"

"Dad," says Ned, "how about some clam chowder?" He's referring to the pot of stuff at the next-door Whole Foods. I'm ashamed to admit it as a born New-Englander, but what they call chowder at this next-door retail environment isn't totally repugnant. "Okay, Ned." So we go next door into the air conditioning and scoop out chowder. They even have a place to sit down to eat it. "Ned, go find us a seat while I pay."

He does. I find him. Four chairs, three of us. In a normal life, that would be enough. "Nooooo!" says Alex. "Nooooo!" I don't know if it's the heat or the backpack or that he will eat nothing we eat, but he will not sit down. Ned has his little cup of chowder -- I've taught him to like the stuff -- and I have my big bowl and neither matters to Alex. I tell him to sit down and he bites his own arm.

"Alex, sit down! I want to eat my lunch!" Doesn't everyone want to eat their lunch? Isn't everyone entitled to eat their lunch? "Nooooo!" He bites. He squats on the floor. I feel and yet don't feel the stares of the people at the table behind us. "Alex, I just want to eat my lunch!"

Alex doesn't do lunch. Haven't I learned the simpliest lesson yet? I haul him outside. He squats on the sidewalk and when I order him to stand up he does and then squats down on the sidewalk again almost immediately. Ned appears. "Alex," Ned says, "what do you want? Do you want the iPad? The iPad isn't here. If you want the iPad we have to go home. You have to go home if you want the iPad."

I'm not sure I can reach Alex anymore. I'll know Alex 30 years if I'm lucky (at times I feel like I'll know him 40 years if I'm not). Ned may know him for 70 years, if the love and caring doesn't evaporate some afternoon on the floor of a place like Whole Foods. You have to go home if you want the iPad. That is the voice of a parent.


Posted by Jeff Stimpson at 1:58 PM EDT
Updated: Monday, 2 July 2012 2:07 PM EDT

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