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Suddenly it is a decade ago when Alex’s Early Intervention therapist noted my son’s then-passion for shape sorters. “Someday that will become an affinity for letters and the alphabet,” said the therapist.
Today that therapist is the head teacher at Alex’s middle school, but that’s beside of the point of Alex and I having to pound 10 blocks on yet another hundred-degree afternoon to the only 99-cent store in New York City that sells the stick-on letters that Alex likes these days. They’re from a Lodi, N.J. company called Flomo, which sells packages of 420 gold foil letter labels perfect for the workbench, the crafts drawer, the hardwood floor, or for sticking on the wall above every frigging framed painting or picture in your parents’ tiny Manhattan apartment.
With the shape sorter, of course, Alex started with colored blocks. Then he moved on to magnetized fat plastic letters on the side of the bathtub (I don’t think he ever used the white board they were meant to be stuck to). These days it’s the stickers, which he’s used on top of our wall hangings (ball over one, cake over another), and to fill a cool Snoopy notebook Jill bought him a while ago.
In this book Alex has spelled ALEX, PIG, FARM, EGG, CHICKEN, TREE (ending with an m), BLUE and BERRY, APPLE, ZIT (I think Jill suggested this), PANTS, LUNCH, BUSSLN (busing), BREAKF (breakfast), GYM, BOWLIN, SNACK, WORK, BOOK, PLEASE, STREET, NED, JILL, JEFF, FOOD, JUMP, RUN, CLIMB, WALK, HOT, JIG, COLD, TUG, TIP, and WIG, among others. Jill writes the words and Alex pastes down the letters.
He also pastes gold letters in alphabetic order across the tops of sheets of typing paper. Across our floor he sticks random and single, often discarded, letters. The spent letter sheets are all over the house, with most of the good letters missing. One sheet with two U’s, a T, two R’s, two S’s, and the Roman numeral II. Sad old toy, this sheet.
Cheap toy, though. Two thousand letters for a fiver. Makes no noise; there are no parts to break off. Portable, too: Alex is carting several sheets and a new notebook (also from the 99-cent store) to sleepaway camp. I do realize that these letters are a little bit of a cheat, that it’d be better to just sit him down and get him to write stuff, like he does in school. All I can say is that home isn’t school for Alex, which is good because home isn’t school for so-called normal people, either. I just hope that the letters lead to an affinity for something else.
Alex is getting a grip on using language. “Good morning, Alex.”
“ ‘morning, Alex.”
“No. ‘Good morning, daddy.’”
“ ‘morning, daddy!”
I’m learning more about how he’s learning to speak. He’s pretty clear, for instance, but can’t seem to form his mouth around a V sound; he pronounces the words “fiking” and “scuba difer.” That seems more a matter for his speech therapist, though, so I’ve decided to just grab moments to teach him words and appropriate phrases.
“Which Elmo? You have several episodes to choose from here.”
“Which one? ‘Elmo Running’?”
“ ‘Elmo Exercise’!” It’s like a dawn. Perhaps the sun would come up more often if we could manage to move him on from Elmo.
I ask him to go the broom closet and bring me a roll of paper towels. He returns with a broom. I tell him I meant the linen closet. (The autistic mind can seem to forgive many things in a parent, but not misspeaking.) “To the linen closet, where we keep the towels.” He pulls out a roll of toilet paper. Pretty close. “Bring me the wastebaskets to do the trash” I also have to say four or five times, to be fair that’s no more than I have to say it to his little brother Ned.
“No, you’re Alex. I’m daddy and I’m the one who’s leaving. ‘Bye, daddy.’”
At grandpa’s lake house, Alex bursts into the dining room and barks, “Watch TV!” I turn him with a manly hand on the shoulder. “That’s not how you ask, Alex. How do you ask? You say, ‘May I watch TV please, daddy?’”
One of Alex’s strongest recent attempts at proper language came on the eve of Ned’s leaving for a couple weeks of sleepaway camp. Ned was nervous (see “bawling”) and Alex took a shot at comforting him by saying over and over “What’sa matter with you?” Then he kissed Ned and gave him a big brotherly hug (see “choke”) from behind. “What’samatterwithyou” – almost the name of Bullwinkle’s college – is kind of funny, like the time when Ned was three and Alex was five and Ned was crying and crying, and Alex came up and looked right at and hit Ned on the top of the head.
Maybe Alex is mimicking me. I do say “What’s the matter with you?” to him, but I mean it with love, the way Telly Savalas talks to his squad in Kelly’s Heroes. Am I doing all this right? As usual with autism, I have no idea.
Alex has never been one of those autistics obsessed with stuff. He has more like passions that fade in about a month than obsessions. Laundromats, however, seem to be one of more stubborn passions. What does he like, as he twists my arm – literally – to press his face against the glass, cup his eyes with his hands for shade, and peer inside. The rows of washers and dryers? The order? The sloshing around and around of the white suds? What, as he peers inside while the owners who run the joints peer back wondering why in hell anyone would be interested in washing machines?
Let’s not even mention how the first aisle he dashes to in every single store is the aisle with the Tide. “Alex, we don’t need laundry detergent right now. I just bought some. You’ll be the first person I tell when we need more… And if you’re so hyped on laundromats, why don’t you help when I do the laundry?” All I can do to get him to pick up what falls on the floor as I empty the dryers. It’s all I can do to keep him from opening the lids of toploaders while somebody else’s laundry is in them. (Alex, go get a magazine over there and look at it!)
He could be one of those guys. At this moment, for instance, I can’t get him to stop dumping glasses of water into the new flowers I just brought in for Jill. I can imagine the kind of overflow like that in The Sorcerer’s Apprentice. From what part of his mysterious brain does this hammering repetition spring?
Not that laundromats aren’t interesting. They are concrete; you can touch a front-loader, unlike a trend or a derivative or a put and call. Laundry played a major part in my early career, too, when I wrote for such magazines as Laundry News, American Drycleaner, and others, figuring out total numbers of dryers and washers, whether the business dared to have an extractor, how the owners decided how to design a store (not the easy question it seems!). I talked to owners of a Tucson mat who designed their place to double as a singles’ bar. One Staten Island owner was blind; he disassembled and re-assembled a dryer with sure fingers, and always knew where he’d set the screws. In one Arizona mat, a quarter-Navajo owner informed he it was better to be bitten by an old rattlesnake than a younger, since the older snakes never spend all their venom on one victim. But I never pressed my face to the glass unless it was in the line of duty or to get a freelance check.
It only there was a way to turn Alex’s face to the glass into a check. Then I’d buy him the Tide even if we didn’t need it.
I come home with a quart of milk and some ice cream and I’m sweating and have to go to the bathroom. Jill came home with a boys a few minutes ago, and she has the A/C running and is online. Ned is repairing his new balsa wood glider, and I hear Alex in the kitchen. Alex has been wanting chocolate ice cream all afternoon, and I have brought him some.
I find him in the kitchen and a frozen waffle on the sideboard in a dinner plate; the plate is filled to the brim with maple syrup. A puddle of syrup is on the floor tiles over the window, one of Jill’s good napkins soaking in it. A steam of syrup runs across the counter and in streaks down the front of the dishwasher like blood in a slasher flick. In the sink sit two empty jugs of maple syrup, which cost about $9 each. In
I have experienced two major domestic spills in Alex’s lifetime: paint and olive oil. Have you ever tried to wipe up paint? Paint’s whole job is to be spread and to cover a surface. Olive oil, like most oils (just ask BP), is a sopping bitch but does clings well to the New York Times and in fact when it dries leaves a lasting sheen on terracotta kitchen tiles. Neither spill was Alex’s fault in any way.
This one is, and maple syrup leaves not so much a sheen as a tacky coating that even as I stared at it and formulated my media response and clean-up plans was probably the subject of a breaking bulletin on every cockroach news network north of 96th Street. Jill and I play good cop/bad cop in these situations, one getting angry and the other getting into action. Jill played the former role with deep conviction for several minutes, while I mopped and smeared and learned that water works better than Swiffer chemicals on sugar-based syrups, and that a whole roll of paper towels doesn’t last long in a home where a 12-year-old must often be watched like a 2-year-old.
Jill took away his videos. I told him to sit on the couch and ask whenever he wanted anything at all to do with maple syrup in the future. “Chocolate ice cream?” he asked. Ned went flying out the door at first chance to play with a friend.
“How long do you think Alex can live with us?” Jill asked. “How can you live with somebody when you never know what they’re thinking?”
He turns the house and our lives upside down at bedtime if he can’t find all the toys he wants to take to bed. He darts ahead on the street (I call him back and make him walk beside us, figuring it’s one way to start controlling impulses that will also grow stronger and more in people’s faces as he ages). He bites his arm when frustrated, and rubs himself and purrs “Mommmmmy…” in a preview of something surely troublesome for our future and his teen years. I don’t know how long Alex can live with us. I do know he could’ve dumped all of both jugs onto the floor and danced in it. But he didn’t.
Discipline around our house lately isn’t difficult. All you have to do is pull down the red Target shopping bag and hold it over Alex’s plastic farm animals. “I will take them all away!” I say to Alex, sounding like Tom Berenger as he threatens to shoot the old Vietnamese woman in Platoon. “I will take them all away if you don’t stop-”
Fill in the blank: if you don’t stop scattering papers and videotapes on the living room floor; smearing ice cream on the wall; putting letter and number stickers on the wall; sticking your hand down your pants; refusing to go to bed and instead ramming through the apartment biting your own arm.
Top five answers on the board, name some other reason Alex might need his plastic animals taken away: “He bites me and scratches me,” says Ned. Good answer, good answer!
Punishment is the bedfellow of what my mum used to call “makin’em mind,” but Alex seems immune to a lot of punishments, at times, as he heads into his 12th year, not even seeming to see how angry his parents, brother, or anyone else is. When he won’t go to bed, he appears over and over and over in the bedroom doorway as our eyes begin to burn, his arm raised in want of something: “Pig!” “Grandpa!” “Uncle Rob!” “Horse!” All are little plastic figures. As Ned cleans the boys’ room to earn extra allowance for a video game, for instance, Alex keeps darting back in to throw stuff on the floor. Maybe he doesn’t understand what Ned is doing. Maybe he wants Ned’s attention. Maybe even autism can’t keep a big brother from being a pain. Then Alex comes back out and rams the vent on the living room air condition back into the wrong position because it looks better.
We warn Alex three or four times before I snatch up his pig, his farmer, his horse and cow, goat, other pig and chicken in front of the toy barn that sits beside our TV. A couple of the figures spill from my arms and across the hardwood floor. “Leave your brother alone! He is working. Don’t touch the air conditioner. It is supposed to be in this position and don’t touch it!”
Discipline is one of the twistier paths of parenthood – I wonder if any parent in all human time has steered it 100 percent right. But much of discipline does depend on a kid caring what a parent thinks and feels. Alex cares, I guess, but sometimes it seems not much. “Don’t hand me that Alex had to be stubborn in the NICU to survive,” Jill says, and I’ve come to agree with her. Stubbornness, obstinacy, the backstabbing of your parents is just part of growing up.
Part of me is happy about this, because it means that as Alex nears adolescence he’s showing normal signs of becoming what I think Russell Baker called “an impossible opinionated son-of-a-bitch just like everybody else.” Often the animals vanish into a red plastic Target shopping back, followed by a threat to throw them away. (Jill makes this threat more than I do, but once when really pissed I did threaten to make Alex hold the garbage chute open…). I’m not proud of having said that, but I was mad and it worked, and that’s about all I’ve come to hope for in the world of making him mind.
The convenience store is a dangerous place to take Alex. I should’ve remembered that the other day as he shot past me and his little brother Ned into the pretzel aisle.
“Pretzels?” he said.
Not the big bag, I tell him, pointing to the $3 bag of Utz dark specials. He can go through one of these bags in about an hour, one after the other, the crumbs and salt raining at his feet as every cockroach in our apartment building perks up his or her antennae. Not to mention there’s little nutrition in even a big bag of Utz dark specials.
“No big bag,” I tell him.
“Pretzels! Pretzels! Pretzels!” He reaches for the big bag; each of his “pretzels!”’ ricochets off the walls of the store with more force.
I came in here making it crystal that he could get a little bag of pretzels. Perfectly clear, over and over, and Alex replied each time that he understood. I told myself that even if I had a typically developing 11-year-old, I’d probably still be laying down the law to a head just nodding me out.
I wasn’t embarrassed in the store. I modeled myself on Jill’s behavior in the middle of one recent night, when about 3 o’clock I heard her firmly and quietly telling Alex to get back to bed. I wasn’t embarrassed. I’m too far gone in retail settings to be embarrassed.
Alex keeps insisting on the big bag. I must take him out. “I told you no big bag!”
He sprawls twice, once actually laying his head down in front of the skyscrapers of Kleenex, and once right in front of the security guard. “Hey,” says the guard; I can tell by his tone he means, “Behave!” and not “I’m calling social services.”
“Alex,” I say outside, while typically-developing Ned looks on silently and shuffles his feet as if he wants to evaporate. “Do you understand why we left the store?”
“Left the store…”
“Do you understand why I took you out of the store?”
“Out of the store…”
“I took you out of the store because you were having a fit. And you knew we were going in there and not getting the big bag of pretzels. You may have a little bag of pretzels.”
“The little bag is yellow,” Ned says. “Tell him he can have ‘the yellow bag.’”
“You can have the yellow bag, Alex.”
“Yellow bag,” he says. What does this mean? Since I’m such a big believer in getting right back on the store after something like this, we head back in. As we pass the security guard, he smiles at us.
The same thing happens. Big surprise. Out we go. The guard doesn’t look at us.
Ned is even quieter on the walk home. “Ned what do you want me to say?” I ask. “That you have no right to be embarrassed? That you every right to be embarrassed?
“You were telling him two different things,” Ned says. “He doesn’t understand ‘big bag’ and ‘little bag’.”
I think he does. I think he lured me into the store by appearing to agree with the idea of buying a small bag of pretzels when he really was planning to just get the bigger bag. Meltdowns in the autism world aren’t quite the same as meltdowns outside that world, and even as he sprawled in front of the tissues and heads began to pivot, I understood Alex, and I was in a tiny way kind of proud.
My son Ned, 9, has been going to a sibshop for four years. Three consecutive Saturdays three times a year with about 25 other kids. The little kids in one group, the tweens in another, and the teens in a third. Each group has their own activities (which I’ve learned to call “age-appropriate”) to lubricate discussions about how these kids feel regarding this card life has dealt them.
The other Saturday I picked Ned up, and we rode the elevator down with the lady who runs the sibshops. Ned seemed kind of quiet. “Heavy stuff today, eh, Ned?” she said.
“We were talking about parents swearing,” he says finally, as the elevator door opens. “Other parents swear, too.”
Ned has a lot of friends, is a rough-and-tumble guy, and is what I’ve learned is called “typically developing.” He never talks much about sibshops. I leave him alone about them. Then again I know what goes on since I attended one last year. And it is heavy stuff: One kid’s sister had just died, and they released balloons over the East River in her memory.
Much of the time they discuss their responses to such truth-or-dares as “Tell about a time you were proud of your sibling” or “Tell about a time your sibling embarrassed you.” The sibs say what they’d buy in the “Me Store,” the imaginary retail outlet where they shop for stuff to make their own lives easier; purchases have included a cell phone, quiet, a private room, maybe actually venturing into public without their teenage autistic brother or sister erupting into a tantrum.
Older kids at sibshops get at some of their questions answered. Why do our sibs like to run a lot? Why do they think they know people on the street? How do their medicines work? Why don’t they look in your face when you talk to them? Why don’t they sleep? Why do they stand and stare outside? “I always have to clean his room after him,” says one girl, “and I have to babysit him a lot, and I always have to give my Me time to him.”
“How many of you have gotten blamed for something your brother or sister did?” Every hand went up. “Do you bring friends home?” No! all the Neds reply. No, no, no.
I tell Ned that through life he will be able to tell a lot about how potential friends will eventually treat him by how they treat Alex. Even as I say it, I know Ned will face his own overpowering special needs as the decades go by.
“Alex is either going to grow up and be like one of us, or he’ll live with me,” says Ned, “or he’s gonna go to this thing where people take care of him and stuff. I would like to live with him. We’re really close even though he is still like a lot different from me. Sometimes I have to act like I’m older. In a way, I am the older brother.”
I may know Alex for 40 years; Ned may know him for 80. Ned deserves a right now a place to hash out heavy stuff in a roomful of people who understand. I leave him alone about sibshops.
More on sibshops is at http://www.siblingsupport.org/
(I also know three students surveying adult sibs. Please contact me if you're interested.)
Reviews for Alex: The Fathering of a Preemie: "Gripping and graceful ... compelling detail, sharply focused images … horrible and strange as it is amazing…” – Idaho State Journal “Stimpson debuts with a searing chronicle . . . Breath-catchingly evocative of life’s elemental grace and messy dignity.” —Kirkus “Heartrending. . . . a vivid picture of life in a preemie’s family.” — Publishers Weekly “. . . a compelling look at the roller coaster of emotions faced by parents with a severely ill child.” —Booklist “An honest, healing book that brought tears to my eyes... Alex will touch you with both sorrow and joy.” — author Michael Hynan
Reviews for Alex the Boy: Episodes From a Family's Life With Autism: “The joy and fear were eye-openers … Jeff gets right down to the nitty-gritty of issues like sleep deprivation, as well as addresses the big issues like fear for the future … It brought to life the perspective of the parent.” -- Special education graduate students, Fairfield (Conn.) University “I want to read your book because I believe it will open up my eyes even more to what parents with a child with special needs go through every day.” -- Angela Minichino, Graduate in Special Education, Manhattanville College, Purchase, N.Y. “Your book was my favorite assigned reading this term.” --Rose Lewis, Early Intervention/Early Childhood Special Education Grad Student, Portland State University, Portland, Ore. “The students are given a rare opportunity to hear the thoughts, fears, and baggage of a parent raising a child with disabilities. An invaluable moment that builds empathy, sensitivity, and understanding.” -- Prof. Pat Levy, Manhattanville College School of Education “Your family's story can serve an invaluable role in the professional training of many people in varied fields. It's an important story - and very well told!” -- Leslie Lampson, Graduate Student, Portland State University, Early Intervention/ Early Childhood Special Education
We’ve started giving Alex a weekly allowance. “Alex, this is money. This is a bill. What number is on it?”
He stares at it and says nothing.
“It’s a 5!” The five on the fiver is fat and curly; it strikes me that it doesn’t look like many numeral fives Alex has seen. “Five, Alex.”
“Five,” he says. He runs his fingertip across the number. I put it in the little Spongebob lunchbox on Alex and Ned’s bookshelf. “This is yours, Alex. This is yours. You earned it.”
He earns five bucks a week at the dishwasher each morning. Alex is very good at dropping the knives and forks, with reasonable accuracy, in the utensil drawer, and sliding the drinking glasses into the cupboard. He seems willing to take on new aspects of the job, and is quick to adapt to new challenges (“Alex, the cutting boards go over there by the window. Over there by the window…”), just like maybe he will someday adapt to new challenges on the job. Someday. For now, I’m glad he can slide the dinner plates into almost the right spot in the cupboard and save me the trouble of bending my 48-year-old back to unload the dishwasher.
“Alex, I’ll take care of the wineglasses…”
I was unsure how much to give Alex. What’s the denomination that seemed like a lot to me way back when but was affordable to my parents? And what bought what around 1970? And how much does that same thing cost today? The crap you have to think of when you’re a parent.
Alex’s allowance formula doesn’t follow historical patterns, of course – I wish it did – and as usual with him I’m sort of guessing here. When I’m snagging them to charge our laundry cards, I figure, fives are as rare as quarters when I was a kid, so we start with five. “Alex, this is yours. You earned it by doing the dishwasher.”
Aunt Julie suggested that we use a gold star method, by which Alex gets a gold star on a chart on the wall every time he does a chore. When we get enough gold stars, he gets money. “We had one when we were kids,” Aunt Julie says.
“We had it for about 10 minutes,” Jill replies.
“I had it for longer, and it worked for me,” Julie says. “That’s why I make more than you do today.”
One of our babysitters suggested years ago that Alex should have his own money. Teachers are on board with this too, and I think it’s a good idea. I want him to start buying his own Chips Ahoy, pretzels, and plastic animals in Michael’s; they’ll all demolish a five pretty quick. “Alex, give the cashier your money.”
He looks at the animal or at the cookies; the cash in his hand is of no account, and he almost lets the bill flutter to the floor.
Alex pushed Jill the other night, when he wanted to put plastic animals on an already crowded kitchen counter. Jill lost her balance and almost stumbled; it wasn’t as if he’d actually almost knocked her down, but still she turned to me with wide eyes.
“I feel like my days with him are really numbered,” she says. He’s nearly 12, and though slender and small for that age he’s still pushing 70 pounds. Jill isn’t a tall woman, and suddenly Alex comes up almost to her nose.
His plastic animals on every clear surface. His hands down his pants until we tell him to stop and just do that when he’s alone. Blasting Elmo during family events. Alex is getting bigger. It’s all that damned milk and ice cream, and the melting away of the years, I guess. Suddenly Alex and his family are coming up to the time of talking about when maybe he doesn’t live with us anymore. Doesn’t, or can’t.
A few years ago, reactions to our saying such a thing bordered on anger. Family members pledged to take him themselves, or hugged our shoulders and assured us that we were just having bad moments and that we’d soldier on, like all parents. Now relatives who’ve known Alex a long time or who know autistic kids themselves are also starting to use phrases like “never live independently.” When, during a recent family dinner, I voiced my plan for him, the table got silent.
“Are there options?” Jill’s cousin whispers.
Years ago, this part of the country had an option called Willowbrook, a state school where people like Alex were chained to walls, starved, caged –and, from what I’ve heard, that was good days. Geraldo blew the lid off Willowbrook in 1972. I do know that assuming there are any budgets left half a decade from now, Alex will qualify for day programs, which are places adults with DDs go to continue learning about getting jobs, getting dates, and all the other stuff that parents like me are often terrified they’ll wind up teaching their grown-up kids. Most of the day programs I’ve seen seem well assembled.
Day programs don’t feed the bulldog of a place to really live when autism becomes too much for a family, however. We’ve thought maybe a residence for him as a grown-up. We’ve also thought maybe a residence for him before then. I tell myself that I’ve always thought it a convention of labor unions that we all stay at home until we’re 18. Jill went to college at age 17; people the world over often go to boarding schools in their early teens, or even earlier. The Royal Navy once had midshipmen age 5.
Jill’s cousin – who just dropped dead at 53 – went the residence route with his autistic son a few years ago. The boy is now 16, and big. (“Maybe he got too big for his mom to handle,” Jill wonders.) He went into a residential school two years ago; the extra time to build relationships beyond his dad must have come in handy for the boy when his dad died.
Years do melt. Last time I saw him, my older brother looked at me and remarked how he'd had a "quick life." Jill doubts she's going to make 70. "My supreme dread for us, and for every middle-aged parent of a special-needs adult, the singular ache that dries the mouth and races the heart at 3 a.m.," writes blogger Glen Finland on the Autism Speaks site.
We’ll never grow old. There’ll never be another Willowbrook.
(Finland’s essay, “What Happens When I Am No Longer Here?” is at