Getting Up

 

About 3 a.m. on many nights I hear Alex chortling and talking in his bedroom or in the living room, sometimes even singing. In my bed, I lift my heavy head and crane over Jill to see if there’s a bar of bright yellow shining under our bedroom door. Many nights, there is.

 

Alex got up in the night a lot when he was younger, and for a sleepless while Jill and I split what we termed “Night Duty.” Who would get up in the middle of the night for Alex and who would get up early in the morning for Alex? We switched. (You do it! … I did it last night! God you just always forget – you are so SELFISH!)

 

Night duty seems to be back. Several times Alex has woken Ned up by rocking in bed, making the whole Ikea structure creak and weakening the joints held together with little more than a twist of the Allen Wrench. The rocking – back and forth, back and forth, creak creak creak! – is a motion that I’m coming to suspect springs from an urge of Alex’s that I don’t want to talk about yet. For a long stretch of the Night Duty phase, I admit that we left Alex on his own in the living room in the middle of the night. Then last summer he started leaving the apartment, and now I can’t think of sleeping when that ribbon shines under our bedroom door.

 

I wake up around 3 and find Alex on the couch, munching pretzels. Pretzel breath at 3 a.m. ...

 

“Alex, go back to bed!” He does, darting into the shadows. "Head down, Alex!" I see it go down in the dark. I head to the bathroom to take one of my middle-age 10-minute pisses and then weave back to back past the shadows of the dining room table and chairs toward the bedroom. He always pulls this crap around 4:30. By the time I wrestle him to bed and convince him to stop rocking and by the time I can wiggle my toes down there in my own sheets and drown my own thoughts with exhaustion, it’s 0600 and time for the alarm.

 

Then one night at 4:30, for some reason, it hit me. “Alex, do you want to get up now?”

 

He laughed and laughed and laughed we I tugged him to the bathroom. His laughter evaporated when I clicked on the light. “Alex, we’re getting up now. You want to be up, we’re up!”

 

“Back to bed!” said Alex.

 

“No, Alex, you’re up now...”

 

“Back to bed!”

 

“Fine,” I told him. “Fine. Go back to bed or we’re getting up!”

 

Down went his head. I returned to bed. I listened and listened as 0600 neared. I didn’t get back to sleep.

Best Friends

Last summer, when Alex was bolting from our apartment almost daily, I hit the roof. Something about Alex leaving the apartment and bursting in on neighbors made me raise my voice more than I wanted to even in middle age and even in this economy. Jill helped me see that was time to bring in help.

 

"Danny’s coming? Rhonda’s coming? Danny’s coming?” Alex says these days. He’s talking about the folks we found to … what? Babysit? That doesn’t sound right for a boy who’ll be 14 next summer. We found Danny (not his real name) on Craigslist; we found Rhonda (not her real name, either) through the psychology department of a local college. They take Alex on bus rides to locations as varied as Burger King to the Queens Hall of Science.

 

“Danny’s coming? Rhonda’s coming? Danny’s coming?”

 

“Yes, Alex. He/she is coming in an hour or so. Just be patient.”

 

“Danny’s coming?! Rhonda’s coming?! Danny’s coming?!”

 

“Alex, be patient!” He used to just say “Mommy!” or “Daddy!” He still does. But now he says other names. He asks if people are coming hours before they are coming (which we tell him, and he keeps asking). By the morning of Black Friday this year, Alex was bored out of his mind. He didn’t want to “do” letters with me, he didn’t want to pick up his room or put laundry away, jobs he usually throws himself into. He shouted into his iPad.

 

He would slip on his shoes, hoodie and backpack. “Take a walk!” he would say. “Wanna walk!” Alex, who will be 14 next summer and who still watches Elmo and “Barney,” has a clear need to see the world. He flies onto the buses now for overnight and summer camp; he totes his own luggage; he grabs the shopping bags of gifts or food to head to grandpa’s or Aunt Julie’s for family parties, even though he’s likely to spend the time there holed up in a spare bedroom with his iPad.

 

Still, I guess, the walls of that spare bedroom or that camp bunkhouse will not be the same old walls of his apartment; this seems to spur him. I wish I knew for sure.

 

Alex, does this spur you?

 

Spur you!

 

Alex, do like getting out more?

 

Getting out more!

 

I wish we could have these “companions” every day for many hours, but I’m two-and-a-half years unemployed, and these guys charge a lot. They won’t be there, can’t be there, every day that Alex slips on his backpack (Wanna walk!), and that hits me in the middle. In what I hope will be a trend for the future, Alex’s little brother Ned provides a voice that helps bring me off the roof. “At least,” says Ned, eying the iPad, “he’s connecting with a person.”

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.