Oh the Weather Outside

 

“Everybody try to help me get Alex wear his winter coat!”

 

 

On this last Saturday before Christmas Eve, the temp has dropped about 15 degrees from mid-week. There’s a brisk northeast wind, and all day the mercury never topped 40. The clouds look like flurries, and as darkness settles Alex prepares to head out for a few hours with his res-hab worker Marla.

 

 

“Alex, when you go out tonight you have to wear your new winter coat.”

 

 

“Winter coat,” he says.

 

 

“Your new winter coat. Okay?”

 

 

“Okay?” I can tell that he means the word as the question.

 

 

I try the trick of putting his hand to the open window to feel the cold. “See, Alex? Just slip it on.” It’s a trim down parka from Lands’ End. There are little holes for thumb and fingers to make sure the sleeves stay down in those white powder downhill sledding runs that Alex – who, ironically, hates cold – will never choose to take. Jill got one cost in blue and one in grey.

 

 

We’re trying the blue one on Alex. “Just slip it on, Alex. Look in the mirror and see how you look!” He even zips it up, looks in the mirror and giggles and giggles, then slides out of it again and reaches for his autumn hoody. I think of all the street people through the years wander in down greatcoats in late April.

 

 

Alex will shift coats eventually. He’s worn T’s in summers, hoodies in fall and spring, and puffy down coats in winter (looking like a brown grenade). But Alex is a slippery customer when it comes to outerwear in those first days of change.

 

 

“I’m been having trouble getting him to wear his winter coat,” I tell Jill. “Where is he?” she says. “Alex, let’s go!” She wrangles him into the coat and then in front of the mirror.

 

 

“Stylin’!” she says. I’ve never heard her say that before. “Good job, Alex!” she says. “Zip it up!”

 

 

“I’m been having trouble getting him to wear his winter coat,” I tell Marla.

 

 

“It’s cold out, Alex,” Marla says. “It’s windy and cold out. Why are you giving daddy a hard time with this?” Alex starts coughing. He sometimes coughs when asked to do something he doesn’t want to do. “You get outside you’ll be glad you have it on,” Marla says. I tell Alex to go into his bedroom and get the red backpack he wears on outings with Marla. She blocks him.

 

 

“I’m not sending him in that room again,” she says to me, “or he’ll change that coat.”

 

 

I find him with the coat on and his familiar orange hoodie on underneath. His version of compromise. Alex waddles toward our front door, looking left and right. This isn’t right, he seems to say. This definitely isn’t right.

 

(Send comments to jeff_stimpson@yahoo.com)

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.