Costs of Living

Pricey raising my son Alex, who’s 15 and on the spectrum. “There are hidden costs,” says my wife Jill, “to having a kid like Alex.”

 

The iPad. My wife Jill bought this first-generation beater ($190 on ebay) for Alex months ago, and was smart enough to also spring for a thick black plastic shield (a “Defender,” $30 then and still about that on ebay). It keeps the iPad screen off our hardwood when Alex – who runs while balancing the iPad as if waitering in a busy Pizza Hut –drops the iPad screen-down with a smack. “Alex, don’t drop that!” Finally the iPad meets our hardwood enough to put a mountain range of hairline cracks across the screen. He brings it to me. “iPad!” he proclaims. The screen is black. “Alex, what do you want me to do?” Slide to Power Off the thing reads in a red box. Jill taught me to, at these moments, press the power button and the button on the side simultaneously until the screen goes black and the bitten apple appears. Then I press two more buttons, resuscitating it yet again, and hand it back to Alex. He goes away to punch buttons. Amazing what Apple has done in our world.

 

Leggings. Alex calls them “Pajamas! Pajamas!” They’re girls’ tights for dance class, really, and I pick them up at the Forever 21 two for $10. Alex rips both pair in less than a week, looking down when he’s bored and setting his fingers to work. Then comes a sound like skin peeling after a bad sunburn and I see a rope of legging dangling from his hand. Why does he do this? “I can’t imagine,” his teacher said once. “Must be something to do with sensation through his fingertips.” One day I find the Forever 21 price has dipped to two for $7.50. Who says corporate retail is all evil? But do the incredibly young staff women of Forever 21 wonder why I’m buying pair after pair of leggings, week after week, in the girls’ department?

 

Chicken nuggets. He used to like McDonald’s nuggets, about $8 in Manhattan when you get them with the meal. He now prefers Popeye’s 3-Piece Tender Combo, $6.39 (I usually eat the fries). For years it was hot dogs at dinner, Hebrew Nationals, $4.50 for a pack of seven (less on sale). These days Alex drinks a glass or two of chocolate milk a day (Ovaltine: $4.99 for a 12-ounce tub) and munches Chips Ahoy (Original, about $5, but $3 on sale). His Utz Extra Dark Special pretzels run $3.50, but almost every store sells for them for $2.99 though the bag still says $3.50. Isn’t that strange?). “Pretzels!” he demands. “Cook-EEs!” Over time he’s nibbled blueberries, watermelon (he tried to reassemble one we sliced up…), and most recently fried breaded eggplant. He kicked chocolate, bacon and yogurt a long time ago. Food for him is cheaper, overall, than a steak dinner. I’ll give $500 to the first person who gets him to eat a steak dinner.

 

The plumber. One day we saw that the swirl didn’t go all the way down to the final gurgle in the bowl. Jill and I bet that Alex had something to do with this and set it up with the Russian super. He sent up a guy up who took a Medieval-looking pole and rammed and rammed. No good. “If they can snake it, fine,” said the super. “If they have to take the bowl off the floor, is more.” The guys from the building’s plumber came in. They did bolt the whole toilet; they flipped it over and reached in. Out came one of Alex’s wooden dolls, and they placed it on the white surface of our flipped-over toilet bowl and snapped pictures with a flash. “Makes a good story,” said the plumber who earlier had told me he makes $400 an hour. Does it make a good story? You think I don’t know what you’re doing? Have any idea what I’ve seen? How that wooden thing wound up down my toilet bowl, you turd?A few months later, the bill arrives. “Just pay it,” Jill says.

 

Paper towels: We need these when Alex pisses across the bathroom floor in the morning. At Costco, $18 for a big bunch.

 

Oven door: The glass runs us some about $200 after Alex stands on it one afternoon and shatters it. “Who was watching him?” asked one of Jill’s old friends. “Weren’t you watching him? Well done!” Jill still talks about her friend saying that.

 

The door alarms: We scrambled for answers after Alex started bolting from our apartment. In a hardware store we bought three white plastic doorknob covers they make for babies (babies, for Christ’s Sake; Alex is shaving.). Aunt Julie suggested a combination lock. Ideal, but we checked and it’s against NYC fire regulations. “You want a what?” the locksmith said when we asked for a lock that could be installed backwards. He figured, after some head-scratching, that a combo lock wouldn’t work that way – bolt goes into the door jam the wrong way. We wound up with little white plastic alarms, $6 or $7 each, that run on batteries and stick on the door and jam. We used to switch them on every night and off every morning before opening the door – and prayed that Alex didn’t notice how to turn the alarm off. The sound was piercing and made him giggle.

 

The childcare off the books: Alex still can’t be left alone. Wads of twenties we’ve  handed over, no reimbursement from an agency possible because it was all off the books. Lately, about stuff we have sought reimbursement for, like clothes, “We’ve run out of funds for this fiscal year,” the agencies say. Except Tom in the cluttered, small office reserved for those who work with people like me and my son. Tom has been in the service of special-needs families since before JFK, and he reaches into his chipped old desk and draws out form after form. “Edward I. Koch,” it reads the corner of one form, the “a” and “o” filled in by generations of Xeroxing. “Mayor of New York.”

 

Goo Gone: $6 for an 8-oz. bottle. “He writes on furniture when he’s 15, Jeff!” Jill says. “He writes on the wall! Pencil doesn’t come off!” Maybe it does. Maybe it doesn’t. We painted the apartment ourselves to save money.

 

The busted and lost sleep, the visions of a park bench 40 years from now: Dreams cost nothing.

 

More eating: “Cheos,” Alex says. “Char-oos.”

 

Charoos? I remember the bag in the garbage from when our agency res-hab worker (no charge!) was here the other night. He means “Chee-tos.”

 

They say always try to teach. “Chee-“ I say slowly.

 

“Cheah-“

 

“Chee-TOs!”

 

“Chee-TOs!”

 

$2.78 to $3.18, depending on the sales. “Cheer-AHs!” Alex says. “Alex,” I reply, “we don’t have any right now. We’ll buy you some tomorrow.” 

Waiting Room

In the waiting room of Alex’s normal pediatrician are wooden puzzles, magazines for parents (“Family-Friendly Restaurants!”) and books for kids about three years old: Elmo, bright plastic, marbles that slide down a track and make a noise. When I bring Alex this doctor’s office, if I’m lucky they take him right away – this doctor is a busy Manhattan pediatrician who doesn’t take insurance – and there are toys in that waiting room, too, great squat plastic things that always snag Alex’s attention. “Alex, no! Don’t!” If I’m unlucky Alex shoves a little kid aside for an Elmo toy while the kid’s mom pretends to not stare at me. Alex will be 16 next June.

 

This waiting room today, however, is for a clinic run by the agency where Alex gets most of his services. The chairs along the walls of the room are filled with people who rock and talk and wait for the door to click open and someone in scrubs to come out and announce that the patient can come in. We’ve come to see the (free) psychiatrist who’s going to prescribe more of the tiny red pills that make Alex more agreeable.

 

I fill our water bottle at the cooler in the corner. “Ricki” is on the TV. I take Alex by the hand to the bathroom, where we lock the door and he does his stuff and so do I, then someone pounds on the door. We finish our stuff and let the blow-dryer go off while the pounding continues and then we return to our chairs in the waiting room.

 

Alex fidgets, mumbles, yawns. “Alex, put your hand over your mouth when you yawn!” Everyone here realizes what he is or they’re too far in their own world to care. In a chair sits a man with legs and knees stick-thin as Alex’s; the man wears a grey T and jean cutoffs and his head bobs. He sits next to a man with a cane. I pat Alex’s leg and say something while we wait for the door until it goes click and someone sticks out their head and says, “Carlos!”

 

“Bla!” says Alex. “Pippo. What’s the point? Goodbye. See you tomorrow.” He claps his hands, his eyes wobbling and his lips apart. He seems to growl. “Danny’s coming? Wagon Road?” Danny is the guy we hire (off the books) to spend time with Alex, Wagon Road the weekend camp where Alex goes over the winter. “Wagon Road!” Alex keeps saying. “Wagon Road camp! Wagon Road! Wagon Road.”

 

“Wagon Road in the fall,” I tell him. “Danny on Sunday. Summer school for six weeks then Camp Anne in mid-August, with a few days for rec break.” Alex doesn’t have a clue what these phrases mean (join the club), but it’s just my attempt to string together syllables to make sense for him.

 

The lucky man named “Carlos?” comes back through the door, sits and starts talking about being on an airplane and having pictures on his phone. Then the receptionist at the front desk calls “Carlos!” for a follow-up appointment. He snaps his cane on the way to her desk and says, “Same time, same BatChannel!”

 

The woman who pounded on the bathroom door sits across from us in a pink top and yellow pants; she’s asleep with her head against the wall. She wakes up and fiddles with a drinking cup beneath the clinic’s posters (“Diagnostic Treatment Center [Centro de Diagnostico y Treatamento]”) and brochures that advise “How to Prevent Falls” and ask “HIV: Are You Feeling Better?” She curls in her chair in a pink and yellow ball.

 

Alex rocks and rocks in his chair, then leans forward until his hair brushes his knees. Then he gets up and flies around the waiting room (when in hell is it going to be Alex! through the door?), straightening chairs. "Ricki" blares to her dwindling audience of patients.

 

A woman with a sleek black carry bag sitting in one of the chairs moves her leg for Alex. She’s on a cannula, like Alex was as a baby. What is that size of tank? E? M? Alex has whiskers on his cheek, pimples. Once upon a time I envisioned this day, when I’d be sitting in a waiting room not with a baby but with a guy with whiskers and no one would look at us.

Peppers and Garlic

 

I make this dish for Jill to take to work because she has a real job and I don’t and because it’s food I can make. I place whatever fresh peppers are on sale – green, red, yellow, even orange – on the burners of our stove and leave the kitchen. If you wait until the sides of the peppers are on fire and blackened, you can take the tongs and turn the peppers and do the other sides until all sides of the pepper are cooked like the flesh of almost the last victim in a horror movie.

 

Shut off the flame because you don’t want to burn down the home of your son who has autism (and the home of your son and wife who do not have autism) and move the horror-movie-flesh-blackened peppers to a bowl. While the Seared Roasted Peppers cool, heat a good olive oil in a small frying pan (preferably one that my mum had) and dice four gloves of garlic. Slice the peppers to remove almost all seeds. When the oil smokes in the pan, dump in the garlic and sauté until blackened. Dump in the sliced pepper and the sauté until your glass of beer is empty. About the best I can do these days. Yr peppers were grt! Jill sometimes texts from her office.

 

Over this weekend, for some reason, Alex carried chopsticks around. Maybe it was because we went to Chinatown. He couldn’t have known we were going to Chinatown but still he brought them. He waved them around but wouldn’t let us put any food on them. Oh no, no food no! That’s most weekends with Alex.

 

On this late afternoon of the last Monday of the school year, Alex has come off his school bus (a challenge in itself these days) and is home. I sit at my computer dreading the next few weeks of KIDS HOME when I see Alex coming from the kitchen with chopsticks in his hand.

 

In the chopsticks is a piece of Roasted Seared Pepper. He makes a beeline to the bathroom mirror. Alex likes his reflection when trying new food.

 

These moments are gold. Gold. Gold. Gold. “Alex,” I tell him from where I sit on the toilet, “chew chew!” Chew chew I say, thinking about the drama teacher in Fame who says to his students chew chew chew and how I realize he didn’t have a clue what real acting meant.

 

“Swallow!” I tell Alex. He spits out the first piece. “Alex,” I say, working his chopsticks. “Here’s another! Chew! Chew!” I work my old jaw and its splintering molars. “Chew, chew!” And by God, by all that is holy and all that has meant my life, he chews and swallows. I see it go down.

The Bus Thing (Part 1)

 

Alex has a lot of plastic animals. “‘potomos!” he says on the night before the bus. “‘potomos! ‘potomos!” he says over and over while our neighbor Annette (not her real name) sits there and pretends to not notice.

 

He’s looking for his hippopotamus. We don’t know where it is. We never do. “Alex, come on!” “‘potomos!” The animals are detailed down to the ruffles of the fur; some stare right back at you (a tribute, I guess, to the workers in some sweatshop in another hemisphere). Alex has a two-inch tall koala bear right from National Geographic. It would seem to stare at you as you slide it onto a pencil.

 

“Alex, we don’t know where the hippo is!”

 

I think he’s done the school bus thing about three times this year. “The school bus thing” means that when the bus rounds the corner of 5^th Avenue and East 108^th at 7:30 a.m. on a school day (and God knows those days are rare enough) Alex does not just slip from my hand and disappear into the bus. The “school bus thing” means something like this morning, when he recoils as the bus door opens. “Alex, you have to get on the bus!”

 

I’ve tried to fight it. He gets up at 20 to seven; his bus comes at 7:30. I used to take him down at 7:25, but by this part of the school year (June) I’ve figured out that if I start launching a minute too early, he has time to think about some plastic animal he wants upstairs. We’d take the elevator down to the lobby (after Alex had pushed the buttons of about five extra floors between ours and the street level) and pause there in the lobby, and then his arm would go up.

 

“Rhino,” he’d say. Up would come the arm. “Elevator.”

 

Alex you have a bus coming … Then we’d move down the sidewalk while the bus took the left turn off Fifth and we’d across E. 108^th Street as the bus came to a stop. On almost every day this school year – Hurricane Sandy, the school bus strike – Alex would just climb up the steps of the bus and disappear inside. Sometimes he wouldn’t. And though his throwing his weight back against me at the bus door only usually meant a trip on the subway much like we took during the strike, it also meant a lot more.

Could Be Alex

 

I don’t think so. But still…“Fascinated with law enforcement,” ran the story in the Washington Post four months ago, “Robert Ethan Saylor would sometimes call 911 just to ask the dispatchers a question. He loved talking to police officers and was a loyal follower of the TV show ‘NCIS.’ Now, his death at age 26…”

 

Excuse me?

 

“… is the subject of a criminal investigation that has left those who knew him in his Frederick County community and those who didn’t around the country wondering: How did a young man with Down syndrome die in an encounter with the very people he idolized?”

 

“Good question, Dorothy!” as the Elmo that my almost-15-year-old still idolizes might say. Seems the guys and girls who’ve earned the badges in this particular mess didn’t know how to deal with someone our compassionate society decided to, as it kind of had to, let live.

 

“As officials tell it, Saylor had been watching Zero Dark Thirty at a Frederick movie theater last month and, as soon as it ended, wanted to watch it again. When he refused to leave, a theater employee called three off-duty Frederick County sheriff’s deputies who were working a security job at the Westview Promenade shopping center and told them that Saylor either needed to buy another ticket or be removed.

 

“What happened next is the subject of a probe by the Frederick County Bureau of Investigation.” 

 

Alex has had a run-in or two with the police. Once during the Museum Mile  celebration – blocks of open admissions and chalk drawing right on the asphalt of  Fifth Avenue – Alex was walking with us when we reached the point where the museum celebration ended and the normal traffic began. He decided right there and then to bolt along the asphalt no one had marked with chalk.

 

And of course he bolted against the traffic, because that’s what our life is. An incredibly big cop still directing traffic at the intersection opened his arms like a Pterodactyl and scooped up Alex as if he was a leaf.

 

I’m sure the probe unearthed a story that was bathed in the wisdom of a society that knows how to treat through a lifetime those it choses in a medical moment to save. This story is old and new at once. Old because it happened a while ago and new because I’m sure Mr. Saylor is fine-

 

Oh wait, no. Scratch that.

 

I am too tired tending my leaf to find out what happened to Mr. Saylor. But he is dead I’m sure, a death no more the fault of his death than was his birth. We have a word for people like that.