Services

 

I tried to line stuff up for Alex this Thanksgiving break, which I've come to regard as "the four-day Sahara." "The holidays book up well in advance - parents jump right on those school holidays," said the lady who runs the overnight-respite program. I worked for months to get Alex into this program. I called her in early October about overnights through the end of the calendar year.

 

This Sahara is tough. By Saturday morning Alex is saying, "David's coming? Rosa's coming? David's coming?" as he slips on his shoes, hoodie and backpack. "Take a walk," he also says. "Wanna walk!" David and Rosa are, well, "companions" I guess you'd call them if like us your son was too old for a "babysitter."

 

Autism doesn't take a four-day weekend. By the morning of Black Friday, Alex is bored out of his mind. He doesn't want to do letters with me, he doesn't want to pick up his room or put laundry away (jobs he usually throws himself into). He yelps into his iPad. He wants to go out, hour after hour. I take him out; he wants to out immediately after we come home, usually with somebody besides mom and dad.

 

The big hope for Thanksgiving Break is overnight respite, a terrific program in which guys like Alex are taken by their fathers to a nondescript apartment building on West 95^th Street near the river, past the security guard who takes one look at Alex and says "Sixth floor," and up to a three-bedroom where Alex could stay for days and nights, gaining his independence while his mom and I catch up on our sleep.

 

Alex crapped out of this program last spring by bolting. Then the supervisor worked with me to let him go there for daytimes during the last week of August. He did well. So well, I guess, that the second morning the supervisor called me and said they could take him for four days, until Labor Day eve. I was tempted but he wasn't ready, I told her. From that offer I came away with the idea that holidays are clear for vacancies in overnight respite; I come away with the idea that most families with autistic children have better parents than Alex's does.

 

Parents jump right on those school holidays. "What's Alex's schedule in February?" the supervisor asks. I see that adult programs take finagling, unlike the children's programs that Alex often just slipped into. Stuff for grown-ups - like the one he's growing into - require thought, planning, more thought, and frightening amount of plain old luck.

Strike

Friday at about 3 p.m. I got word that all the yellow school buses in New York might strike. A parent coordinator emailed me the letter from the NYC Department of Education:

 

“We are writing to inform you of the strong possibility of an immediate system-wide, and in our view, illegal, strike by our bus drivers’ union that could impact yellow bus service for more than 152,000 students citywide.” As usual with strikes that could affect me, I don’t understand the thorniest issue. It seems to have something to do with bids.

 

“Any idea when this could take effect?” one parent wrote. “This is a huge problem for us as my son (with an IEP) travels over an hour each way to/from school by bus.”

 

“Someone just called from my son’s school and said they are very concerned that it might take place within the hour,” wrote another parent at about quarter to two Friday afternoon.

 

I’ve been a special needs dad for almost a decade and a half, and “within the hour” wouldn’t have surprised me at all. I called Alex’s bus company about 3 on Friday afternoon. They didn’t answer; they’ve answered all year.

 

Both sides slung mud into the weekend. The mayor of New York – a rich man who’s recently caught flak for his orders to the police regarding Occupy Wall Street – held a press conference Friday afternoon and said Metrocards for mass-transit rides to and from school would be available to parents in the amount of, said the mayor, “If I remember correctly, four dollars and fifty cents.”

 

(If I remember correctly!? If I depended on votes past or future from a squeezed public, this is one number I’d always keep in mind. Perhaps the comment helps explain how we wind up with these strikes in the first place.)

 

The DOE regrets “the possibility of what could be a major disturbance in the lives of students and their families.” If by that they mean Alex might be home all day, I agree.

 

He won’t be. One advantage of living in Manhattan is that mass-transit is what it should be in most of our cities, and I’ll take him and bring him home (one disadvantage of being 50 next month and having worked in publishing being that I’m now unemployed).

 

What’s Alex going to feel if a bus doesn’t show up on Monday morning? On the iPad, he watches a “Sesame Street” segment that has a school bus over and over. He has always loved school buses, grabbing the little ones in toy stores.

 

Alex doesn’t know strikes. (“Can you spell ‘strike’?” I’ll ask him on Friday evening. “Can you spell ‘strike’?” he’ll reply.) The bus brings him home on Friday around 4, just like normal, and I mean to ask if they’ll be there on Monday? Except an ambulance is blaring right behind the bus. The bus pulls out quickly and the ambulance goes just halfway down the street and stops. Just halfway. The little guy sure gets squeezed in this world.

 

Jobs to Do

 

They're talking jobs in Alex's future, as he nears 14 and "vocational" begins to appear on his IEP. They're talking "jobs" in 14 million other futures right now of course, but as Alex gets closer to adulthood I try to not think about that.

 

There are various jobs Alex can do. Even now in the grocery store, he aligns cans so the labels face the same way. At grandpa's lake house, he sets the table for a dozen with the handles of the coffee cups all facing the same way. There are other examples.

 

Jobs he does:

 

Alex empties the dishwasher every morning before the sun is up (his schoolbus comes at 6, and he's often up by 4:30 anyway). "Knives, forks and spoons, Alex," I say over the lower bin, which I've pulled out after he's made sure to close the soap box. One by one he drops the utensils clattering into their slots in the drawer. Except for the paper-thin tablespoons Jill paid 25-cent each for, of course; Alex hates those, and morning after morning he tries to slide them unnoticed into the rear end of the drawer.

 

He does laundry, hauling the heavy cart to the elevator and punching B for basement. I still keep an eye on him down there, as it wasn't long ago that he darted for the door and even locked himself in the bathroom. These days, he scoops the fallen socks and underwear from the floor and stuffs them into the triple-loaders. When the laundry's done, he wrestles the tangles from the washer. Once, when all the triples were taken and we had to use the double front-loaders, Alex stared at the triples then looked for a moment at the doubles. He wanted to understand but the doubles were new to him. He wanted to understand - and I ached as I sure hoped Alex didn't realize that other people understand the difference between the doubles and the triples much, much faster than he can.

 

Jobs he creates:

 

Sweeping pretzel and cookie crumbs from the cushion of the couch, the floor of the living room, and Ned's bed, where Alex perches - never on his own bed - to munch and watch the iPad. "Alex put crumbs in my bed!" says Ned, his arms arcing madly across the sheets. When I was a little kid, I could never sleep when I thought there were crumbs in my bed, either. Thanks, Alex! I don't like to think about them roaches.

 

Alex up in the middle of the night and first thing in the morning also means I have to wipe piss from around the toilet bowl. Enough of that, for now. He scatters clothes when he's picking out what he's going to wear that day, socks and pants and T shirts littered around the foot of his dresser like Civil War dead in the Brady photograph around the walls of a fort. Alex scatters Legos and makes Ned cry and then swear. Thanks, Alex!

 

We learn more about Alex and jobs when we visit his classroom. We learn he orders the supplies for his classroom and delivers newspapers to all the classrooms in his school.

 

We learn too that he sweeps floors and wipes tables in his classroom. Funny he never mentioned that to us.

New Anthology
My essay "The Looks" in an anthology featuring Wells, Plath, Poe, Grandin, and others, at http://www.cap-press.com/isbn/9781611630572 and http://www.amazon.com/Anthology-Disability-Literature-Christy-Thompson/dp/1611630576/ref=sr_1_1?ie=UTF8&qid=1320868515&sr=8-1

Post Meridiem

Alex gets home about 1 p.m. from a half day of school. He dives onto the iPad. I decide we'll go for a walk or a bus ride if he wants. He never asks.

He watches the iPad all afternoon. One becomes 2 o'clock, and that becomes 3. I do have a lot to do: fold and stow the laundry, change and make the beds, play too many rounds of Hearts on my laptop. I'm ready in a moment to do something else if Alex wants to, but he sits hunched in his headphones hour after hour.

I have this fear of institutional days for Alex, some place with people who sit at desks and pay attention only to those who need attention the most in the looming days of tight budgets. People paid to act the same way his father does on this afternoon. "If we're going to find a residence for Alex by the time he's 16 or 17, we have to start now," Jill said this morning. I agree. After all, Jill went to college at 17 (imagine what she must've looked like!); Lord Nelson commanded a ship at 12. Given the average of those ages and that Alex already says "Bye, daddy!" when I drop him off at overnight respite, the timeframe isn't out of line.

If I'm a loving caregiver, though, how come we're looking this afternoon at the fourth hour with Alex on the iPad and me at this computer, back-to him, listening for the crash of the plate glass or the wail of a kid who's 13 going on 5 who's hurt himself? "Seven!" I hear Alex say over and over. I turn and see him rocking on his thighs to whatever's coming through the headphones. Elmo? "Bear in the Big Blue House?" "Arthur?" The pile of laundry remains high. I find time to watch 10 minutes of "The Winds of War" on Netflix On Demand. I wish I'd written "The Winds of War" while still in high school. Things would be different now.

Alex, socks to put away!

He could do it, well and quick, but my request doesn't seem to stick. I listen to Pandora and lose myself in memories of stuff that happened before Alex; I put the socks away myself. He stands over there, munching a Goldfish. He doesn't ask for a bus ride or a walk; I'd grab his reduced MTA Metrocard (marked with a bold black R, and what could that stand for, I wonder) and hit the bus for a ride down Fifth or a subway ride to pick up pumpkins for Halloween.

That would be something to do. I know Alex would like that.