Alex Trek: The Next Generation

 

We’re starting to work on finding Alex a residential school.

The NYC Department of Education has greenlighted the idea – after many months and meetings – so now yet again in our son’s life Jill and I must hope we ask smart questions about a situation we’ve never been in before. As once upon a time we didn’t know a neonatologist from a necromancer (still don’t, really), now we have to figure out a whole new field of professionals: the ones who’ll oversee Alex day and night, in classroom and at play and asleep, for the next several months or years.

“I intend to ask how often they get off campus,” I say.

“That’s a good question,” says Jill.

Unlike in the NICU, at least I won’t have to assess professionals’ skills I don’t know (medicine, science and a little necromancy). Still, it’ll be where Alex lives, and he hasn’t lived anywhere except with us since he was in the NICU. What exactly do you have to know to work in a residential special needs school?

Random Googling turns up “generally, a two-year post-secondary diploma in a related field, such as an Educational Assistant-Special Needs Support Diploma (EA-SNS) or a Social Service Worker Diploma (SSW). Alternatively, a post-secondary degree in a related field such as Physical Education with a Disabilities specialization will also meet educational requirements for many agencies.”

Sounds reasonable. What do agencies look for?

“Candidates with the following skills and characteristics: good problem-solving and creative thinking skills; mature, empathetic and non-judgmental; an ability to adapt and to work with others; an ability to handle emergencies and work calmly under pressure; an ability to communicate well (verbally, non-verbally, and in writing).”

Well, Alex himself has most of those qualities. He wasn’t even three when he figured out to stand on the open dishwasher door to reach the Pringles. He seems fine with others as long as the iPad’s charged; he communicates non-verbally all the time. He judges no one and I’ve never seen him react to an emergency, though occasionally he cause one.

“How big is your son?” one school wants to know.

“Make sure you see the school when school hours are over,” a friend advises. “That’s the important part of any program.”

Alex seems ready for what I tell people will be his equivalent of college. He seems bored at home, always looking for the next thing (“Camp?” “Rec program?” “See Aunt Julie ‘n’ Uncle Rob!”). “Takeabus to camp?” he says. “Gonna take a cab?”

“In a few weeks, Alex. You’ll go back to camp in a few weeks and when you come back on the bus we’ll catch a cab to come home.”

He likes his winter camp, about a half-dozen long weekends sprinkled between Labor Day and the end of April. He hated it years ago but likes it now; he grew into it. In fact Alex’s service coordinator, one hell of a professional who for years has helped run down services for him, emails his camp. “Alex is in the midst of a residential-school application process and support plans are requested for the services he receives,” she writes. “Do you have any paperwork on how he has been doing?”

She’s right on top of things. I hope we get more professionals like her because Alex keeps growing into and out of a lot of things. He shaves now and his waistline makes 14-regular khakis bulge at the button. In 62 months, he’ll be 21 years old.

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

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

Some people like Alex never make 40. Take the 29-year-old man who died last summer after police Tasered him in his Long Island residential home (http://longisland.news12.com/news/maryhaven-center-of-hope-resident-dainell-simmons-dies-after-police-struggle-in-middle-island-1.5764785). I turn up this story on the Net. I Google all residential schools nearby and run them through the search engine and all local news. I look for police activity.

“Oh god, police activity,” Jill replies. “Okay. Good thinking.”

“Police were called,” last summer’s story reads, “after the resident had a violent outburst that lasted for 45 minutes. Staff members say he banged into walls and hit staff members.” He fought when cops tried to handcuff him before a ride to a hospital for psychiatric evaluation; cuffs are standard procedure for such situations.

“Could there not have been a better way to deal with this once the cops arrived?” one online commenter on the story wanted to know. “Couldn’t the cops have sat with him for a while until he calmed down?”

Comments mushroom about this and other, similar stories involving abuse, violence, theft – sometimes from workers and sometimes against them. “How do you sit with someone who is intent on hurting you and is 250 pounds?” another commenter wanted to know.

“Feel bad for everyone involved,” another wrote. “The kid, his family, the staff and the police. Having been in a few situations like this while I (worked in a residence), there’s no textbook way of dealing with it.”

Not every residential sitch dissolves into fatal police action, of course. One mom reports her son was showering in his residence when he heard something interesting on the TV and who – quite sensibly in the rawest meaning of sensible, like much autistic behavior – shot into the living room right in front of a two female workers and a woman who lived at the residence. “Without a towel,” mom adds.

I can see Alex doing this, shaking with laughter and bringing his hand to his mouth as his towel falls off his waist to the floor. (Skipping ahead a bit in this article and in Alex’s life, we see that some 6% of Americans are diagnosed with a severe mental disability – but more than 20% of the homeless have such a diagnosis. What’s going to happen to him when he’s 40.)

Reading too much of this stuff makes me tired – so tired it hasn’t even occurred to me to ask prospective schools what kind of education he’ll get. I know most workers at residential schools – where Alex will live and it will be many, many days before he can takeabus to come home – can and will do the best they can. I know that by a wide margin these workers give most kids the best education possible and that bad things almost never happen.

At this point in the process, though, I only know this because I hope it.

Take My Autism, Please

 

I made people laugh in school and college. A few times around age 18 I commanded a couple of classrooms like like a standup. It seems to be what people remember about me. “Does your new boss get your humor?” my old friend Jon asked recently. Humor has always been my lubricant.

 

 “You’ve always been funny, Jeffrey,” my late mother said once. “Well not funny, you know, but witty.” Mum’s kind of compliment.

 

My kids are funny. My 13-year-old son Ned is in a stand-up class. )“Can’t imagine where he gets it,” Jon said.) Jill and I sure thought Alex was funny about 10 years ago when Ned stood in our dining room crying and crying. Alex heard his little brother’s wails, walked straight up, looked Ned in the face and hit him on top of the head.

 

Or that time years before that, when Alex still hadn’t said many words and lived in a crib. I was fiddling with his diaper when the tape broke and I muttered “dammit.” Soon, his tiny knuckles gripping the crib railing with excitement, Alex spoke another early word; it rhymed with “spammit.”

 

On our last trip to Cape Cod – what’s shaping up as our last vacation ever as a complete family – the daytime temp one day was 30 degrees chillier than the day before. When the sea air slapped Alex as he dashed onto the beach, he spun around and demanded, “Car? Car!”

 

Witty boy. Though strapped by being only semi-verbal, he comes out with some straight-talking humor. “Tired! Take a nap!” he snapped one bedtime. Once when he wanted saltines and all we had was pretzels and I said, “How about pretzels?” he replied, “How about crackers?”

 

In most of his baby pictures, Alex is smiling around the breathing tubes. “Jeez he’s a happy little guy,” my brother commented.

 

Now almost 16, Alex still laughs a lot – loud, too, about five feet from us in the living room. Laughing and whooping at some “Sesame Street” skit on his iPad before he stomps the floor or plunges to his haunches for a joke only he understands and doesn’t share. His laughter seems unconnected to anything in our world. Maybe I just say that because he’s almost 16 and busting up over Elmo.

 

Autism is a long search for something funny. The Kansas City Star reports on parents of autistic kids doing standup: “Several area parents, coached by local comics, practiced routines about the humorous side of living with autistic kids,” the story reads. One mom’s “boob joke” involves her 11-year-old son, a nearby McDonalds and a woman’s low-cut top. “Except it was more than just a joke. It’s one of the many frustrating, and often humorous, realities parents have to deal with when living with a child ‘on the spectrum’.

 

“The disorder often impairs judgment over what’s socially acceptable.”

 

Hoo yes. Bolting from our apartment comes to mind. Barging into other people’s homes, leading us on a chase through echoing, dusty stairwells. Alex hasn’t done that in ages, of course, not since Super Bowl Sunday last month. Did I mention our last vacation as a family? There’s a humorous side?

 

“People with autism just process the world a little differently,” a therapist told the Star. (The story is at http://www.kansascity.com/2014/02/24/4846885/whats-so-funny-plenty-for-parents.html .) This therapist initiated the idea of parents of the autistic doing standup “then got comedians to help focus their material and hone their delivery.”

 

I’m trying. At Alex’s IEP meeting where everyone introduced themselves – “Hi. I’m (blank) and I’m Alex’s teacher”; “Hi, I’m (blank) and I’m Alex’s physical therapist” – and when my turn came my delivery was fine. “Hi, I’m Jeff Stimpson and I’m Alex’s lawyer.” They all laughed. (When they stopped laughing one rep from the Department of Education looked at me and asked, “Are you really a lawyer?”)

 

“We should start doing the following things with the boys immediately,” I emailed Jill a few months ago. “1. Make the boys wipe up their own spills. No exceptions! 2. Make the boys sweep up their own cookie crumbs. No exceptions! 3. Make the boys take their own dishes into the kitchen after dinner. NO EXCEPTIONS!” If that email isn’t a joke, I don’t know what is.

 

Regarding focused material, “retard” is out in any form or context. These days I try to forget every “drain bamage” joke I ever made.

 

“Oh you’re German!” Basil Fawlty tells visitors to the Towers. “I thought something was wrong with you.”

 

“My own taste in humour has changed since having … a special-needs child,” says the New Zealand mom who writes the blog Autism and Oughtisms (http://autismandoughtisms.wordpress.com/2010/12/26/humorless-and-humorous-autism/). “Jokes about friends acting as if they’re intellectually disabled or have had brain damage used to seem like harmless fun. (Now) it can feel quite insidious coming from someone without personal experience and understanding of what they’re laughing at.

 

“My husband and I regularly make (rather un-repeatable) joking comments to each other, about what we have to put up with each day due to our son’s autism,” she adds. “Chances to laugh while you’re going through the problems are as good as non-existent … and the laughter often seems to carry a sort of desperate exhaustion.”

 

Jill and I prefer resigned irony as we watch Alex sweep somebody else’s stuff off a table or the hutch to make room for precise rows of his plastic jungle animals. “Autism decorates,” says Jill, sweeping cookie crumbs off her couch. Autism makes you hone a lot. I can make Alex laugh but I don’t think he gets my humor. He understands my tone of voice but not what I say. Doesn’t matter. When he squats on the floor, bites his own arm, bolts or rocks the couch until it shakes apart, there’s nothing to laugh at anyway.

 

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.