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Alex the Boy from the publisher

JeffsLife
Sunday, 15 January 2012
Opinions

 

Alex and I get into the elevator with a neighbor. Perfectly normal thing to do after the end of a perfectly normal day. The door slides shut and the neighbor says, “Five, please” when I ask what floor she wants. Then perfectly normalcy ends.

 

This violates my new rule of avoiding, if I can, elevators with neighbors when I’m riding with Alex. He still presses the buttons for a load of extra floors.

 

 

Alex presses three (not our floor) and nine (our floor). “Alex, press five, please.”

 

 

“Noooo!” he says. “Alex, press five.” “Noooo!”

 

Once, I would’ve felt the neighbor’s eyes on my back. I don’t this time. I try to press five and Alex grabs my hand; my other hand holds a grocery bag. “Alex, press five now.”

 

Noooo!

 

I could put down the bag and, suddenly needing both my arms for this 13-year-old, force his hand to the five button. I guess I still feel the eyes for a moment, though,  because I don’t force his hand.

 

We get to three. Alex dashes to the door, in front of the neighbor, and stares out. He curls the fingers of two hands to make his own 3.

Eventually we get to five. I forget how, but I may have pressed the button myself. “Have a good night,” I say to the neighbor. “Take it easy,” she says. “Take it easy,” Alex says.

 

Alex, walk this way…  Alex, press five, please …  Those times he doesn’t, I grunt like Basil Fawlty in comedic exasperation even as I know that whatever Alex is doing is no passing instant but the way things are and the way they’re going to be. I’m getting lain old pissed at the idea that not every parent has a son who’s going to have to be a grown-up amid the wreckage of our special-needs budgets. Some doctor put it best 14 years ago: “You’re at the mercy of everybody with an opinion.” At that time, I believed he was talking about just Alex’s year in a hospital. Now I think he was talking about the rest of Alex’s life.

 

 

What must people must think when they see Alex? I pity the parents. Why do they let him do that? Why don’t they find a home for him somewhere?

 

He has a home. The opinions we have of him there will do for now.

 


Posted by Jeff Stimpson at 9:30 PM EST
Updated: Sunday, 15 January 2012 9:36 PM EST
Tuesday, 3 January 2012
How Do You Feel?

“How do you feel, Ned?” Ned is Alex’s typically developing younger brother, and this Christmas afternoon he’s on the couch.

 

“Okay, dad.”

 

“Do you want anything?”

 

Like his older brother, Ned doesn’t answer. Ned is absorbed in the Cartoon Network, though, and doesn’t have autism. “I feel okay,” Ned says, “but I don’t feel okay when I move.”

 

“Don’t move then.”

 

Alex has gone with Jill to her stepfather’s for a holiday party. Ned, normally a rush at such things, is home with a slight fever and a queasy stomach. Jill and Alex just left, and it was Ned’s decision to remain home. Good thing: Not 20 minutes after they left, he went pink and felt kind of hot for a few minutes.

 

“Ned, this just happens sometimes during the holidays.”

 

Tell me about it. About 20 years ago, I got sick every Christmas. Bad sick, too, bathroom sick. I blamed everything from bad shrimp at an office party (back when I had an office) to the stress of running around trying to buy the gifts for both Christmas and Chanukah. It was a mess, for a while. “Christmas is hard on non-Jews,” my late mother-in-law used to say.

 

“Can I have some more ham?” Ned asks. Instead (see “queasy”) I make him pasta with salt and pepper. “Thank you for the food,” Ned says.

 

Thank you for the food. Ned naps on the couch, turns pink and warm for brief times, and is mostly miserable because this bug struck during a school holiday and he can’t see friends. He dozes to the Cartoon Network. I could, at any moment, ask “How do you feel?” and get an answer.

 

Ned’s illnesses, so far and knock wood, have been easier on me than Alex’s. At any time in Alex’s life when he was sick I could’ve asked “How do you feel?”, from those first moments in the hospital when he was intubated in a plastic box to the terrifying depths of his seizure this last September. I could’ve asked him at any time. He never would have answered. All we can do with Alex is stare and watch for the flicker of the eyes, slide our hand inside the back of his shirt and feel the fever burn our palms. We can watch and watch and wait, but we cannot ask and get any real answer.

 

“Can I have some more ham?”

 

“Sure you don’t want to wait, Ned?”

 

“Maybe I’ll wait.” I wish I didn’t feel that Ned’s sicknesses, like the other bumps and downs of his life, will be easier on me, but I do. Doesn’t seem fair to either kid.



Posted by Jeff Stimpson at 7:54 PM EST
Updated: Tuesday, 3 January 2012 7:56 PM EST
Monday, 26 December 2011
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) 



Posted by Jeff Stimpson at 4:53 PM EST
Updated: Monday, 26 December 2011 9:20 PM EST
Monday, 19 December 2011
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)


Posted by Jeff Stimpson at 6:03 PM EST
Updated: Monday, 19 December 2011 6:10 PM EST
Wednesday, 14 December 2011
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.


Posted by Jeff Stimpson at 2:48 PM EST
Updated: Wednesday, 14 December 2011 2:50 PM EST

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