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Father of an autistic 13-year-old boy,
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Two of a Kind

By on August 15, 2012 in Autism

 

To my 13-year-old Alex I give the command typically heard on a school morning: “Put on pants, socks and shoes.”

 

There’s this thing about the socks. Most people wear a pair that resemble each other. Alex doesn’t.

 

I take inventory of his sock drawer. Balled up: the green and dark-blue “Sunday 7” socks that my wife Jill bought at H&M. Separate: A pale green and a pale blue, each with white stripes. The black and orange I would wear if they were big enough. The “Monday 7.” The blue and black “Wednesday” (how come no number?). The “Tuesday 2,” the brown one with the white stripes. Why is there always this yellow and black “Saturday” without a partner?

 

I collect a pile on my knee of those 10 socks whose partners have been plucked, alone and ragged out, by an autistic young man.

 

Jesus, the other blue and black “Wednesday” in the bottom of the drawer. I ball them up. I find the dark blue ones with the light-blue stripes in the dark confusion of the opposite ends of the drawer, Lovers lost in a way to shatter a heart. I ball them up feeling a little like God. And there’s the light blue one with white stripes! I ball it up with its partner – not that Alex will keep it that way on the school morning of school mornings.

 

I’ve given up trying to match them when doing laundry. I drape the socks over the bars of the laundry cart one by one, each seeming to hope for their old partner or, as we all do in our hearts, hoping for a partner new and thrilling. Why is two of a kind beyond Alex?

 

He’s had clothing obsessions. Once upon a time it was black T shirts. His current one is khaki pants. Next? Some of the garments bear the fading STIMPSON of summer camps over the past few years.

 

How does Alex look to the world in mismatched socks and the old, short Kmart khakis, the only ones he’ll wear until they rag out? Does the world understand that? Does the world understand how he looks, and what do they think of me as I begin to rag out myself?

 

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Chow Down

By on June 21, 2012 in Autism

 

“Alex, dinner!” might sound like an echo across normal backyards the land over, except in our house it’s followed, every evening, by “Here are your hot dogs, Alex.” Hot dogs sliced by the width, about a half-inch a slice, and they have to be Hebrew Nationals because if you use any other brand you’re not fooling anybody.

 

Compared with the rest of his development, Alex’s diet is arrested (I’d say “retarded” but don’t for reasons that are also starting to feel scary), and it’s progressed little in several months. Vitamins and stuff like Benefibre help, but regarding food we’re still parked at La Crème pink yogurt (“pink” is not an official flavor; raspberry or strawberry, doesn’t seem to matter which, but try the pale vanilla or the orange-y peach and you’re not fooling anybody). Utz Dark Special pretzels, plain cracker flavor Goldfish. Chocolate chip cookies, with Chips Ahoy a favorite, though homemade from the mix will do. Just make them crunchy with no soft-and-chewy crap.

 

“Alex, try these kale chips!”

 

Kale has a rep worse than that of hot dogs that aren’t Hebrew Nationals, but recently my wife Jill found this recipe where you chop kale, spread it on a cookie sheet with olive oil, salt it like mad and broil it for 20 minutes. You wouldn’t believe how much the result tastes like junk food. “Alex, here-” I try our time-honored method of touching the tip of his finger to the stuff we want him to eat and then touching the fingertip to his lips and tongue. The salt! The oil! Who could resist? Alex twists his lips into a sad rectangle, downturned at the corners, and makes a sound like Snoopy when he’s unhappy. Blaaaah!

 

Alex (almost 14, PDD-NOS) used to eat the cheese off a slice of pizza, that sausage-substance patty from inside the McDonald’s breakfast biscuit, maybe a few berries mashed in his teeth and smeared across his lips. “Jill,” I ask, “what can you tell me about Alex and eating these days?”

 

“I dunno,” she says. “It’s just so difficult. I did get him to drink chicken broth the other night, but I didn’t strain it enough and he kind of gagged on a bit of vegetable…”

 

It isn’t a matter of what but also how: We want Alex at the dinner table. Ned sets placemats for him, but Alex just snatches his bowl of Hebrew Nationals and heads back to the couch to eat them over his iPad. I know we should drag him back, take away the food, starve him until he eats food in the place where we, his family members with the supposedly whole brains, know it needs to be eaten. People have given us this advice, I notice that the people who give such advice often don’t have autistic children themselves. We let him eat his hot dogs at the couch over the iPad for yet another night, but I know we’re just fooling ourselves.

 

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The Flood of Water

By on April 21, 2012 in Autism, Special Needs

I’m sitting there doing something when I being to feel I’ve heard the toilet flush about five times in a row. Then I hear my younger son Ned call, “Alex has flooded the toilet!”

I round the corner off our living room and there’s half an inch shining across the black and white tiles of the bathroom floor. My temper takes a predictable turn when I see the water. I step right into the water with my sneakers. Screw it. Except, to paraphrase Fargo, “He don’t say ‘screw’, if you get what I’m sayin’.”

“Ned!”

“What?”

“Ned, I need your help!”

How come I can’t call on Alex? How come all I can do is yell at him to get the hell out of the bathroom?

“Jeff, I’m coming!” says my wife Jill.

“I’m not talking to you! Ned, bring me the dustpans!”

The only bathroom trouble my 13-year-old son Alex has ever had – aside from aim, which as a guy I can tell you is over-rated – is a glass-eyed fascination with running water. He runs the faucet long enough when brushing his teeth to draw an environmental rebuke from Ned. His companion Daniel says he loves looking over the side at the Staten Island Ferry as the waves wash by; maybe it’s the whitecaps rising and fading, or the rushy sound.

I’m talking to no one as I use the dustpan (“Thank you, Ned! Good man.”) to scoop and dump splash after sort-of brown splash into the tub. The dustpan is flat and the floor is flat; doesn’t that make sense? Besides, months ago Alex, who has autism as if one couldn’t guess, ripped the crap out of the car-washing sponge we bought for these floods.

The flood has something to do with the toilet paper being near the end of its roll. Reports Jill, “I heard Ned telling Alex, ‘Stop using so much toilet paper!’” Sounds about right for my life.

“Ned, bring the Swiffer!”

Ned, who’s 11, helps: He lugs the sopping beach towels – it’s deep winter so who cares if we use them, and we use them to make the bathroom floor stop shining – in a bag to the basement laundry room. We sent him back in half an hour to put them in the dryer. He gets a laundry lesson, so that’s a plus.

We must look at the plusses. Alex has learned a lesson about flushing five times in a row – maybe. Ned has learned a household chore. We get the clean bathroom floor until Alex goes in there again, this time for legit business. Aim remains over-rated.

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Opinions

By on February 28, 2012 in Autism

My 13-year-old son Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfect normalcy ends.

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

Alex, who has autism, presses three (not our floor) and nine (our floor). “Alex, press five, please.”
“Noooo!” he says. “Alex, press five.” “Noooo!”

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”

“Noooo!”

I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though, because I don’t force his hand.

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.

Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

Alex, walk this way…  Alex, press five, please…  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting plain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

He has a home. The opinions we have of him there will do for now.

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Stage Fright

By on January 24, 2012 in Autism

My 13-year-old son Alex stands in the orange stage lights of his school’s spring talent show. He’s helping his physical therapist hold up a big sign that says either CHA CHA or DANCE. I don’t have a chance to tell which the spinning signs says before Alex vanishes stage left in the Speedy Gonzalas whirl.

“Maybe he’ll be part of your road crew next year,” I’ll tell his teacher later, after the PT escorts him back to his seat.

“He was cocooning himself in the curtain,” the PT tells me, “and we figured, ‘Not today.’” She sounds likes she’s trying to comfort me about this, and I’m trying to decide if I need to be comforted.

Alex’s school holds a talent show every year – at least they have since he got old enough to attend 6th grade. Before that, every spring they’d have a carnival of games and music and face painting and stuff like that. Alex used to run away there, too. Last year in the talent show, he drummed. Bongos. I sat there watching his face and its Matt Dillon brows and downturned W of a mouth as his para sat too close to him for it to be normal and he drummed and looked out at the lights.

What does anyone see when they look out at the lights in an audience, their stomach a knot? What did Alex, with autism, see?

The bongos came up again last summer, when Alex and I were walking home from Target where we’d bought milk and we passed a bodega store at E. 108th Street and Lexington Avenue, where a man was pounding a bongo with skill. As if waiting for Alex, a bongo sat empty next to the man, and Alex sat down. To this day, I’m not sure if anyone in the crowd cheering the man or Alex and the bongos or both understood that Alex has a problem. They cheered and told me there was no problem. And there wasn’t.

But the show this year. It started a half an hour late, which seemed like a long time to ask kids with special needs to sit, considering that some had filed in early. I kept craning for Alex’s orange hoody. When I spotted it, I assumed that under the hoody Alex was wearing the tie-dyed white T that a few weeks ago, in the “communication book” home, we were told was the uniform of his performance.

Alex’s was one of the last classes to file in. He saw me in my seat. I asked his teacher if she thought it’d be better for him if I moved. She didn’t say one way or the other. I moved anyway, and Alex kept looking for me until he found me, and I waved. “You’re on first,” I heard someone say to Alex’s class, and they went out a door. When Alex appeared in the orange lights a moment later, he was still wearing the hoody. Where was the tie-dyed T, with all the preparation behind it?

I watched him on stage; I wasn’t proud but I wasn’t ashamed, either, as I saw him bend down and bolt.

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Jeff Stimpson 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 jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such asAutism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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