Cut Out for Him

 

(This article appears in the Spring 2014 issue of Autism Spectrum News at http://www.mhnews-autism.org/back_issues/ASN-Spring2014.pdf#zoom=100.)

 

My 15-year-old son Alex (PDD-NOS) goes to a special-needs school where some students are old enough to work. A few years ago Alex’s teacher told me about when she approached a local thrift shop about students volunteering there.

“We don’t hire the handicapped,” the clerk said.

“In the first place,” said Alex’s teacher, “I’m asking about volunteering for no pay. In the second place, we don’t use that term anymore.”

“Well whatever you call them,” the clerk replied, “we don’t hire them.”

Too bad. In supermarkets Alex turns all the cans on the shelf so the labels face straight out. He empties our dishwasher in the morning. He sets holiday dinner tables and leaves the handles of all the coffee cups at precisely the same angle.

“Alex,” I ask as he tucks in the sheets at the foot of his bed, “would you like a job?” I expect him to parrot back, “Like a job?”

“A job to do,” he says, tucking.

Alex has his work cut out for him. The U.S. Bureau of Labor Statistics reports that the unemployment rate for American adults with disabilities was 13.3 % at the beginning of this year, compared with 6.8% for adults without disabilities. According to a study in the September 2013 Journal of the American Academy of Child and Adolescent Psychiatry, young adults with an ASD have more trouble transitioning into employment than their peers with different disabilities. The study also found that only half (53%) of young adults with an ASD ever work for pay outside their home in the first eight years after high school – the lowest rate among disability groups.

My friend Jennifer tells me her son started as a cart attendant at a local Target; after three years they added “sales floor” to his cart duties. “He also straightens the store, stocking and fronting items,” she emails. Jennifer advises parents seeking employment for kids with ASDs to connect with local stores, making introductions early with businesses that would accept a person with a disability – “really ‘accept,’ not just legally accept,” she says.

Jennifer’s also son held some “less-than-perfect” jobs before Target, she stresses, “so stay positive and keep pushing.”

Okay. “If Alex worked here,” I tell the lady at the wine store, “he’d have the labels of all the bottles facing the same way in about an hour.” She laughs. I don’t add that I also think he’d dash out the back door of the store long before that hour was up. Though he’d probably stop short of smashing fine Chardonnay on the floor, I bet he would yank himself away from his supervisor and lunge off crying, “Awww, iPad … ”

I wish I pushed Alex more. The dishwasher is a dawn routine now, true, yet often simply having him sweep crumbs just slips my mind. He watches too much Elmo on his iPad; too often I let him alone. I’m not together enough to be Alex’s dad, not smart enough for this job.

I look for help on his Individualized Education Program:

·        “To prepare for volunteer clerical work at an adult day program, Alex would benefit from developing vocational skills through work-based projects and in-school jobs and having more opportunities to develop initiation skills when speaking to staff and peers.”

·        “Working more independently will be addressed during his in-school job making copies for staff independently for 20 minutes.”

·        “Alex displays a high interest in going on the computer.” Can’t argue with that (see “Elmo”). His Aunt Julie suggests we open an email account for Alex. Then she could write to him and he could send out resumes.

·        “Alex will receive ongoing instruction and opportunities to practice writing personal information on job applications.”

·        “Alex will receive instruction and have opportunities in the community to practice using laundry machines and learning how to fold laundry.” Great idea even if he never gets a job.

·        “Alex responds very well to verbal praise.” Also great, except:

·        “Alex can be distracted from a task easily.”

He could probably scrape by for the next six decades on the compassion or pity of society. I do hope he someday has that spring in the step after a day of good work he enjoys. (Maybe calling up Elmo on an iPad?) Regarding my own outlook, I can’t figure out where work – let alone money – fits into Alex’s universe. Perhaps if we get him to hand enough bills over the counters of Michaels for little plastic jungle animals. Then he’ll understand that sometimes we all spend our days in less-than-perfect ways to earn money for what we want.

What will he be paid? President Obama’s recent hike of the minimum wage includes – after vocalizing by advocacy groups –similarly raising wages (to $10.10 an hour) for disabled workers. I didn’t know people like Alex worked for less, but under a government program originated long before we entered World War II employers could pay certain disabled workers subminimum wages. “The Fair Labor Standards Act provides for the employment of certain individuals at wage rates below the statutory minimum,” the statute read, “(including) individuals whose earning or productive capacities are impaired by a physical or mental disability … for the work to be performed. Employment at less than the minimum wage is authorized to prevent curtailment of opportunities for employment.”

Most disabled workers who worked for subminimum wages under the provision were employed in “segregated, sheltered” workshops. Operators of such workshops claim that including these workers in the president’s wage hike will lead to many disabled people being pushed out of work.

Interesting. And frightful. What other employment-statute landmines wait for my son and people like him? Or will Alex be lucky enough to run into the growing number of employers who even forego interviews and instead give workers a one-week tryout, who sometimes use picture systems in the workplace and who display the patience to tap a mania for routine and superhuman powers of concentration?

Just look at the other night at bedtime when Alex lost that plastic chicken behind the mattress and refused to budge from his bedroom no matter how I insisted that I last saw the chicken out by the couch. “Rooster,” Alex kept saying. “Awww, roo-ster…”

We found the chicken.

I’m not sure Alex will ever hold a job job (of course, I once doubted he’d ride a school bus, too). For him, I think, employment will replace school as a place to go every day, where if he doesn’t show up people will miss him. Will he get such a place? Autistic students receive a lot of support in school years, support that often slams into a mother of a curtailment when they graduate.

“You’re worried what’s going to happen to him when he’s 21?” a school official asked me once.

“No,” I replied, “I’m worried what’s going to happen to him when he’s 40.”

That worry has become a job in itself.

Bolting's End

 

Four months ago a 14-year-old boy with autism ran out an open door of his school in Queens, N.Y., and, to those who loved him, vanished.

Through the following weeks he became known to everyone else. Each morning I walked Ned to the train to send him to school and heard the subway loudspeaker:

“Police are looking for Avonte Oquendo. He is 14 and suffers from severe autism. He was last seen wearing jeans and a striped shirt…” Posters blossomed all over New York; Autism Speaks helped with a $70,000 reward. Police called the disappearance “distressing” and admitted that several officers were something that no police department likes to admit about its officers: emotionally involved.

“They found that kid,” Ned told me over the phone the other day. “They found Avonte. Pretty bummed about that.”

The medical examiner’s office confirmed on Jan. 21 that remains found along the East River matched Avonte’s DNA. He was last seen heading toward the East River 11 miles from where the body was found. Cause of death has yet to be determined.

Cause of death was a condition most don’t think is fatal.

“Forty-nine percent of all children with autism wander. One-third of them are non-verbal,” Michael Rosen, EVP of Autism Speaks said in local news reports, which added that Rosen’s 26-year-old son has autism.

“Nicky would end up across the street, on roofs of other houses when he was young,” Rosen said. “Eventually, we had to put locks on the top of every door in the house. And that’s how families with autism live. You can’t turn your back for one second.”

Alex, Ned’s older brother, hasn’t bolted in months, but he used to vanish frequently from our apartment with a slam of the front door. Soon the phone rang with a neighbor telling us Alex was inside his or her apartment, sometimes turning on every light.

“I’m so sorry. I hope he didn’t damage anything...”

“Well no. He just used my bathroom.”

Once on a Sunday morning he bolted from our apartment. I stuck my head into our building stairwell and listened under I heard an echoing slam and pounded to the steps. I found him three floors up. Through the open door of this lady’s apartment – she lived alone and expected guests for brunch – I heard her on her phone with the guard at our building’s front desk.

“Yes, can you help me? There’s a strange autistic boy in my apartment…”

“He’s my son,” I said to her, steering Alex out by his arm. “I’m so sorry.” No problem. Alex also said I’m sorry to me and to her, over and over. How did she know he was autistic?

He bolts outside, too: Once Alex got bear-hugged by a cop just a few feet from the cars in a busy intersection. Another time he bolted from a Central Park playground and turned up 10 blocks south in the zoo garage, bumming Fritos from the maintenance crew. In the depths of the bolting, I used to wonder if Alex would bolt out the front door of the building and run into Fifth Avenue.

Sometimes I tried to write thank-you notes to neighbors. “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…” Usually I got about to “happen” before crumpling the paper. What difference was a note going to make to neighbor who knows who he is and says it’s okay if Alex busts in to use their bathroom? What on earth makes me think I won’t have another chance to write this note?

I’m not the only one wondering about wandering. Senator Charles Schumer has introduced legislation – “Avonte’s Law” – to provide tracking devices “and expand support services for families with children who have ASD or other developmental disorders in which ‘bolting’ from parents or caregivers is common.”

The law would also provide training and other resources to schools and local entities (see “police”) to help them “react to a situation similar to Avonte’s.” The tracking devices cost about $85 and a few dollars more a month to operate. The legislation would allocate $10 million for the program and interested parents could pick up the devices free. Schumer called it “a high-tech solution to an age-old problem.” I call it pennies for a miracle.

Many children with autism are drawn to bodies of water because they seem soothing, Rosen added in news reports.

We used to pile stuff in front of our front door before going to bed. A chair, on the chair an old coffee can that will fall with a waking racket if Alex moves it. Sometimes a second chair. We tried alarms; Alex used to watch as we stretched up to turn them on and off. In his early morning bolts, he’d shut our bedroom door first.

Yeah, we tried to have locks installed to keep someone inside. “You want it how?” the locksmith said. “I guess I could do it upside down so the bolt goes the other way …” He couldn’t – NYC fire regs forbid a key lock on the inside of an apartment.

Bolting’s numbers, according to AWAARE (Autism Wandering Awareness Alerts Response Education) and the National Autism Association:

• 74% of children with autism run or wander from their own home or from someone else’s home;
• 40% run or wander from stores;
• 29% run or wander from schools;
• Close calls with traffic injuries were reported for 65% of missing children;
• Close calls with drowning were reported for 24% of the missing children;
• 56% of parents reported running as one of the most stressful behaviors they have had to cope with as caregivers of a child with autism; and
• 50% of parents reported receiving little guidance on preventing or addressing this common behavior.

Make that 51% as Jill and I stood on the sidewalk outside the locksmith’s. “I feel like I’ll never sleep again,” she said. She did, of course, one day after bolting had drifted behind Alex on a float down a river only seems to understand. God knows I’ve never been able to predict what’s behind the next bend.

A boy gave his life to begin the war against bolting, a boy who will never understand what kind of hero he was. Hundreds attended his funeral. Distressed police now know a notch more about a population they can’t protect, a population born – as some races are born having to fight prejudice – with disadvantages we as a species can’t just enlighten ourselves out of.

Overnight the posters vanished. His family will sleep again, eventually, though never in the same way. Their alarms won’t go off and their doors won’t slam in the middle of the night. The lights of their neighbors will stay dark.

It's been a long long time it’s been on Super Bowl night when I sit in a rocking chair in my father-in-law’s living room, watching the game for one of those infamous seconds as Jill appears in front of me says, “Jeff, Alex just left.” I shoot up to be sorry again. Pounding toward the back stairs I realize that at least tonight wherever Alex goes someone ran there before him.

Spare Ribs

Jill wants the Vietnamese take-out again. Fine with me, so she phones up fried noodles and some chicken glop we decided to try but won’t have again. Fried spring rolls and spare ribs.

She’s had luck with Alex and food. He was still a blob in the carriage with an oxygen cannula under his nose when she wheeled him to a Queens coffee shop and stuck bacon under his nose. “Guess who’s eating bacon?” she said on the phone that afternoon. I didn’t have to guess; we had just one child then. “Guess who ate a brownie?” Jill wanted to know on the phone a year or so later. She’s had the food luck.

Marie, who comes from the agency and sits with Alex a few hours a week, prepares to leave as I look in the kitchen and see Jill with Alex. I see them standing near each other and Jill’s hand rising to his mouth in a way a mother’s hand usually doesn’t have to move toward the mouth of her 15 year old son. “I have breaking news,” Jill says, seeing me. “Guess who’s eating spare ribs?! Chew and swallow,” she says to the man of the moment as he chomps and chomps on maybe a cubic millimeter of spare rib meat while balancing his iPad on one hand.

Wow. He’s never eaten spare ribs. I have a few seconds of victory until Alex’s head pitches up and his chin juts out and dives down and forward and the liquid spurts from his mouth. Luckily into our sink.

“Okay, okay,” Jill says patting his back. She looks at me. “He doesn’t know how to eat!” she says. “He needs to drink. He needs to swallow.”

Alex doesn’t eat enough and he doesn’t drink enough – certainly not enough water on a hot day, when we’re out somewhere and we pass him the bottle of water and he tips it back like the most unpopular man in the lifeboat. Time after time I’ve watched the water slosh in the bottle until the last of it is gone. Thanks, Alex, what are we supposed to drink now?

Alex swallows and I give him a nibble of my spare rib. He nibbles again. My spare rib. Jill has a spare rib and so does Ned. I give mine to Alex. I’m a good father. “Water, Alex,” I say to him. “Drink some water.” He holds the glass to his lips and through the glass I see his lips and teeth as he swills the glassful.

Then up comes the spray and puddle that make me ashamed I still write about Alex. Jill shoves the coffee table over by the TV while I sit on the couch as if this was happening to someone else’s family. Marie charges in with paper towels.

“He really liked those spare ribs a lot,” Jill says later. “He kept wanting more. Kept nibbling, picking them up himself. Just thought I would try.”

Marie does her stuff with the paper towels. Nothing solid comes up. “He doesn’t seem upset at all,” Ned says. Nothing solid came up. So we have that. 

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.