The YAI Network Autism Community

Jeff Stimpson

Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism.

Sitting at the dinner table, I hear a strange noise from the bathroom and suddenly realize that Alex has been in there for almost the whole time it’s taken me to eat half my slice of salmon loaf. “Alex, what are you doing in there?”

He’s spinning spinning spinning the roll of toilet paper, until there are two piles on the floor, each up to his knees, and there’s barely a quarter inch of paper left on the roll. Then he tries to take the roll off the spool and, I imagine, wants to flush the entire thing down the toilet – an exercise which lately has been the most complete manner by which we have cleaned our bathroom floor before water starts dripping through our downstairs neighbors’ ceilings.

Alex whips off the roll faster than a cat on YouTube.

“Alex cutitout!”

He has this thing about toilet paper, usually after peeing. Perhaps it’s because he has had only female assistants in his schools; it’s been my understanding since about the embarrassingly advanced age of 23 that ladies need to wipe after peeing. For a long time, Alex has wiped afterward, and I think lately he’s gotten it into his head that he needs a heap of toilet paper to do it.

Maybe he just likes to watch the water rise in the bowl. Maybe he feels this practice is linked to good hygiene (maybe in fact it is). Back he darts. “Alex, no!” Back he darts, spin spin spin. “Alex, no!” What did they say at his school? Don’t say “no,” say something positive. Put pressure on the arms at the joints, pressure on the head; that seems to calm him down. I press his elbow. I press the top of his head. “Alex, you don’t have to do this. You don’t have to use this much paper to wipe. You can use less paper to wipe.”

“Blow my nose?” he says. He unrolls a few inches, balls them up, and blows.

“You don’t have to use this much toilet paper to blow your nose, either.” A pile higher than his knees. If he doesn’t cut this out, I’ll give him pressure on the top of his head…

“I have a question,” George Carlin once said. “When you take a piss, do you go like this?” Carlin wiggled in delight. Laugh laugh went the audience, mostly the men. “Me too,” Carlin said. “I think it goes back to the time when we didn’t hang on to it…”

“Can you make sure Alex understands that the shaking is fun?” Jill asks. Judging from his giggles when I introduce the subject after one tinkle, making Alex understand won’t be a challenge.

He passes through fixations: certain videos; certain plastic animals; lining up every toy barn in the house in the geometric center of our living room floor. Like so much in the bathroom, this too shall pass. Nevertheless, yet again we’re at that point where we might be sleeping some night – sweet and precious sleep – and Alex will hop out of bed and dart to the bathroom and clog the toilet with paper and flush, somehow and some way thinking it’s the most normal thing in the world to do.

It isn’t the toilet paper wastage I mind, by the way, as much as the mopping afterward. We have only a  Swiffer and not a real mop; recently we did buy two of those giant sponges you use for washing your car. We don’t own a car. We own a toilet, and Alex.

Jeff and Alex

Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism. Hear more from Jeff and his wife, Jill Cornfield, on their fantastic blog, AutismVox, and be sure to check out their podcast.

My wife, Jill, has always said that talking to Alex is like speaking a foreign language for which there’s no phrase book. Like much she says, so true. For years, Alex seemed to feel little need or desire to communicate in the way we all do; reciprocity wasn’t something that seemed in him.

Single words did emerge—crackers, Elmo, pret-ZULS—sometimes accompanied by his hand held up in nothing that I, one of the people most concerned with his eventually holding a job, could mistake as actual pointing. But he got his ideas across, and gradually I came to drill him in marrying simple sentences to his requests.

“Alex, ‘May I have pret-ZULs please, daddy?’”

“MayIhavepret-ZULspleaseDADDY!”

Sometimes I ask him to write and read his own requests, such as the other day when I had him write “I want the dog please” when he was searching for a little plastic toy dog. Tie desire to tasks, I’ve always found, and anybody can learn.

Lately, I find myself trying to get down—I hate to say “down,” but that’s how it feels—to Alex’s level of communication. His little brother Ned, typically developing, already does this when he wants to play with Alex. “Alex, play?” he’ll say.

“Ned,” I snap, “talk to him normally!”

Don't Walk

But I speak the same way, such as with the code I’ve worked out with Alex when walking the streets of Manhattan. Bolting being one Alex’s favorite pastimes and braking not being one of drivers’ favorite pastimes, I figured it might be nice to check Alex as he sprinted up to half a block ahead of me and Ned. (Alex’s mobility is terrific, by the way; trying to catch him can be like trying to catch a dragonfly.) Then it hit me.

“Alex, wait for Ned!”

And he did! In fact, he trotted all the way back to give Ned a hug and kiss. Next came curbs. “Alex,” I called, “street! Hand!” And he stopped right at streetside, waited for me, and when I’d caught up he held out his hand for me to take while we crossed the street.

I thought about this communication a year ago at a YAI conference, where Jill gave a presentation on people with autism in movies. She showed that famous scene from Rain Man where Dustin Hoffman starts to cross a busy street and the sign changes to a blinking “Don’t Walk,” and he stops and blocks traffic. How would I explain this to Alex if he’d been Dustin Hoffman?

“Alex,” I might’ve said, “you can walk when it says ‘Walk.’ When it starts blinking ‘Don’t Walk,’ walk faster and get to the other side.”

If I explained this to most people, they’d say, “Okay.” But Alex, I’m sure, would repeat pertinent parts of my instructions, such as “blinking” or “walk faster.” The point would be the same. “Blinking.” “Walk faster.” They wouldn’t mean he didn’t understand what I was trying to say. It would mean, however, that in many ways and for years to come, I’ll be trying to understand what he says.

Jeff and Alex

Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism. Hear more from Jeff and his wife, Jill Cornfield, on their fantastic blog, AutismVox, and be sure to check out their podcast.

We sent Alex to day camp the past two summers (total damage: $10,200). Alex is semi-verbal, and never could come home raving about his day of fun in the sunny woods or quietly confessing that he’d had a run-in with a bully. The only activity there he seemed to love was the Flying Squirrel, a sort of three-ring bungee  contraption where a kid is strapped in and then bobbed high in the air and then down again. Personally, I too would’ve love the Flying Squirrel (with a couple of beers, too), and I’d love the swimming and the baseball and having a cute counselor following me around all day; but not so Alex, at least as much as we could tell.

Whenever we visited his day camp over the past two years, he departed the pool early, tried to gather up the ball, glove and bat in his arms when asked to play baseball, and ran around turning all the cabin lights on and off during arts and crafts. The staff was great, the camp lovely; his counselor was, I think, his first crush. But did he enjoy it all to the tune of thousands of dollars?

So, like many parents this summer with needs special or otherwise, we’re pinching pennies. Alex will go to summer school. It’s free, and anyway doesn’t he try to run into every school building we pass when we’re out walking with him? Doesn’t he? He does. “It’s closed, Alex! Holiday,” we say as he yanks at the double doors and peers through the metal mesh on the windows.

Surely this yanking and peering means he’d rather ditch the Flying Squirrel and spend the hot months reading for a few moments then spending an hour on the playground with a teacher or two he already knows from his regular school year?

Maybe. I try to not think about when I took him to the first day of summer school about three years ago. I walked into the building confident, Alex’s hand in mine, waving hi to the teachers and admins we both knew well, marching him right into the cafeteria and handing him over to the teacher he’d known for a good three years, and watching him burst into tears.

Doesn’t that tell you something? you ask. It would, and clearly, if it wasn’t for the yanking and the peering and his ignoring everything except Flying Squirrel.

This summer, we plan some weekend trips to waterparks and such. Alex loved the water flume at Astroland as much as the next guy, and I must admit I’m looking forward to spending a blistering day with a day pass tucked in my trunks and surrounded by around about a billion mountainous water rides (plus beer). We also plan zoos, Connecticut and Rhode Island seashores, grandpa’s lake house. We’ll fill Alex’s days, and our own.

But does he like camp? Not sleepaway, I guess, where he goes in late August; the sight of the suitcase still makes him shake his head hard and rush to manhandle it back behind Ned’s bed (too bad – sleepaway is non-negotiable, as we just plain need the break). But we’re just not sure. Every time Alex passes the building where he picked up the bus for daycamp he says, “Camp? Camp?” At home, he’ll pull out the scrapbook of last year’s camp and flip through it wordlessly.

“Alex, summer school this year, right?” we say. “You’re going to summer school?” He flips the pages and doesn’t reply.

Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism. Hear more from Jeff and his wife, Jill Cornfield, on their fantastic blog, AutismVox, and be sure to check out their podcast.

I got my first sense of how people reach for labels when Alex was born: 27 weeks gestation, 21 ounces, living in the plastic box of an isolette in a gigantic hospital, wires stuck on his every limb and across his chest that was slightly smaller than a deck of cards. I learned the word “preemie.” Soon after, I learned that society often likes to glue the word “miracle” to the word “preemie.” To people who said such things I gave the Shocked But Hanging In There New Parent look.

Alex spent his whole first year in the hospital, wearing more wires than hang in the average hardware aisle in Duane Reade. I remember one afternoon, visiting him and playing a pinball game in the patients’ lounge. I love pinball, and have probably dropped three months’ mortgage in quarters down those slots. This game in the lounge was free, however, and I remember thinking that I hoped Alex would work his way down the road of miracles to the point where he’d go somewhere where the games of pinball didn’t have to be given away.

And he has. He’s played skee-ball in arcades with his younger brother Ned, my other son. Ned, who is typically developing, stood at the foot of the game and rolled the ball up the ramp and into the little holes under the metal grill, earning his points. Alex picked up a ball, ran up the ramp, and tried to place the ball under the screen and directly into one of the little holes. Makes perfect sense! people marveled. I gave them the That’s Not the Way My Son Should Play Skee-Ball And We Both Know It look.

Jeff and Alex

Last weekend, Alex kept trying to scoot through an open door in the basement of our neighborhood supermarket. The store wasn’t crowded and hardly anyone noticed me hauling him back to the checkout line except a young lady working the register. I saw her looking at Alex with the small smile and direct eyes that I’ve learned mean: She knows someone with autism. She stroked his head once. I appreciated the gesture; she might have stroked his head out of understanding the kind of life Alex is likely to have. Funny, though, how I wish she’d maybe felt comfortable yelling at him for trying to go into the basement, comfortable because he was normal and he shouldn’t be trying to run in the basement of a grocery store. I gave her the Tired Slightly Angry Parent look. That is rapidly becoming my favorite look because so many parents of the typically developing wear it half the time.

People – at least the people I’d like to have around Alex – seem to need to think there’s something beyond vulnerability to those with autism. Something special or beneficial to society, or at least likable and warm, like the message of movies like Rain Man, lessons tied up in what Richard Yates disdainfully called “a neat little dramatic package.” Yeah, there’s autism. But they can count cards, too!

Some of them can count cards. Some can paint. Some with autism can do all sorts of things, just like some of all of us can, and of course the verdict is still a long way off when it comes to Alex’s real abilities. I want people to stroke his head someday because he helped them, because he contributed in a way that brought him fulfillment at the end of his working day. And I just want to live to see him get that. I call that my Hopeful Outlook.

Read Jeff’s first post on YAI Autism Community here.