Until He Drops

 

“Alex, we’re going out to get presents!”

 

“Presents.”

 

“You’re going to buy presents for Ned and mommy. What are you going to buy for Ned?”

 

“Buy for Ned.”

 

“What are you going to buy for mommy?”

 

“Buy for mommy.” We go through this three times.

 

I’ve decided that it’s time for Alex to learn how to buy presents: walk to the store, pick out crap for those who mean something to him, walk to the register, take the bills from me, take the bag and collect his change, and leave the store. Then home to wrangle with the Scotch tape, scissors and paper until he has a present to, well, present on one of the waning evenings of Chanukah.

 

I head out with Alex on the morning of the day after Christmas. He’s silent to my questions as he presses the extra elevator buttons on the way to the ground floor. “What’s Santa going to bring mommy, Alex?”

 

“Santa mommy.”

 

We go through this a few times. Outside, I decide to start at the beginning. “Alex, to go shopping for presents, we need money first, right?” We head to the ATM. I slide in my card and punch the buttons while Alex studies the blue wall of the bank. “Look, Alex. Cash.” (Way too much in this year, too.) We head to the local all-purpose drug store, which these days means toys and housewares and all sorts of stuff. I steer him into the Christmas aisle, which should be cheap as hell by this time in the calendar, but isn’t. Mommy wants new icicle lights for the window.

 

“Alex, what does mommy want?”

 

“Mommy want.”

 

“What does mommy want?”

 

He shops like my brother Lee: With just a glance and then a look away, Alex shoots out his hand and pulls out, like a dragoon’s saber, a marked-down roll of Santa wrapping paper. Jill is Jewish. Of all things in this store, nothing screams “Jill Cornfield!” to me less, but this is Alex’s call.

 

“What do you want for Ned, Alex?” We head to the short toy aisle. Without hesitation he squats to press buttons on the preschool toys that make noise and pull out the detailed plastic farm animals. Apparently Ned wants a goat, a horse and a cow. “No Alex, this is a present for Ned.” Alex counts the plastic animals. “One, two three…”

 

“Up here, Alex. What would Ned like from here?” From the top shelf, the Nerf Dart refill pack would work, I think, but Alex finds a green plastic truck. Again with the Uncle Lee shopping: shoot out and pull.

 

“Let’s go pay, Alex.”

 

At the register, Alex tosses in a red bow that I’ll later examine and determine that he pulled off some display. I don’t think the cashier, with a glance at Alex, charges us for it. I put the twenty in his fingers and he hands it over; I coax him to take his change. Outside the store, he hands me the bag to carry.

 

I’ve never wrapped wrapping paper for a present. Alex has trouble tearing off the Scotch tape. Pretty soon, though, everything is in its paper, and Alex heads to the living room to watch the iPad. Like often in the holidays after the wrapping’s done, I’m left to think I’ve actually done something.

 

(Send comments to jeff_stimpson@yahoo.com) 

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.