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JeffsLife
Saturday, 13 October 2012
The Good Store

I’ve been working with Alex on the sidewalk or in stores in those moments when he sees a group of people approaching and his waves his hand and says, “Bye! Bye!” What’s going on with that? “No Alex,” I tell him. “Say ‘hello.’ Say ‘good bye’ when they leave...” He’ll be 15 in June and sort of four for the rest of his life, and I feel I have to talk to him like this.

So Alex and Ned and I are in line at the neighborhood grocery store. “Alex,” I say, “help me put stuff on the belt.” The belt doesn’t work in this store for some reason, but the point is to get him to grasp something in his hand and put it somewhere in a productive way. But he’s staring off to the side and I’m thinking there’s another bolt to the laundry aisle coming when I hear a deep squawk.

This is the same store where Alex and I had a run-in with what now I think was another autistic boy. He wouldn’t get out of Alex’s way; he had a Mohawk and was eating a hamburger in a grocery store in the middle of the afternoon, and I just didn’t have a good feeling about him being nice to my son.

This time in the store, however, I see a young girl with heavy eyebrows over by the tuna; she stands behind a cart with another, 
older woman, and her movements are jerky. The other woman is glancing around.

I did some work in this neighborhood for the New York State Department of People Like Alex, and I know there are homes in this 
area. I interviewed one couple who was going to get married. The apartments were nicer than anything I had in New York City in 
my early years: hardwood floors, white walls, gleaming appliances.

The young woman with the eyebrows and who let out the squawk comes right up to me and Ned and Alex. Ned and I see her but Alex doesn’t seem to. “Papi!” she says. She’s wearing a cream-colored coat, and she holds out her hand for me to shake her palm feels firm but her fingers soft, like all the muscles aren’t being told what to do. She knew me as a dad. Alex’s? Hers?

“Nice to meet you!” I say. I used to say things like this to people like this with elevated, fake enthusiasm. Not anymore. Someone like Alex is here. 

The mom’s by the cart. “I’m so sorry, mister,” she says. I squint and purse my lips and shake my head and even as I do I know the expression says not a tenth of what I’d like to say. “Oh no. No. This is Alex.” I present him like a passport. He’s that way, too.

“Alex, now! They’re leaving. Now say, ‘Bye.’”

BYE! Wave wave.

Alex and Ned and I leave the store. “That was nice,” Ned says.  Yes. “I’ve had some nice encounters in that store,” I tell him. 

“Some people have come up to me and just said, ‘How old is he?’ You can tell they work with someone like Alex.”

I tell Ned about the work I did in this neighborhood. Should I even say this to a kid who’s just 11? “Maybe Alex can live in one of those places,” Ned says. “That’d be close by.”

“Well, no. I think they’re a little more high functioning than Alex is.” 

“What do you mean?”

I mean this is a good store in a poor neighborhood, Ned, and you should learn right now that probably only poor people are ever going to work with your brother. I don’t tell him this, of course, because it’s my job to protect him and because, when you come right down to it, I don’t know what I mean.


Posted by Jeff Stimpson at 11:16 AM EDT
Updated: Saturday, 13 October 2012 11:50 AM EDT
Monday, 1 October 2012
Barber

We used to get Alex’s hair cut at a place designed for little kids – racks of toys, balloons, seats that looked like humungous bright plastic jeeps. Terrific for kids about to enter Kindergarten, but after a while I found that I was cramming a long-legged kid with a mustache into big plastic car .

Not to mention the place cost $45 by the time we got Alex out with a toy. So we tried to find another barber shop. That meant, in our case, , places where the barbers said, after a moment with Alex cocooned in their apron, “You have to get him to sit still or I can’t …”

You can’t what? Isn’t the cutting of your kid’s hair some unalienable right? I grew up thinking it was, at least until I hit 36 and autism barged in and I had to find some place where kids like Alex had to sit still. About, what, a year ago (who can keep track?), I found a place. The first few times I walked in, there were kids in the chairs that I’ve learned to call “special needs.” One boy here once flopped and squirmed while his dad keep saying his name and looking exhausted. 

So I bring Alex here. Alex’s brown hair has grown thick after being ignored for three cuts and droops over his eyes; it’s curling behind his ears and it’s over his ears. It’s time. Do the men of this shop – Russians? – know somebody like Alex and these other flopping kids? Maybe they do. Maybe it’s a kindness of the universe. Thing about having a kid like Alex is, you don’t tend to question,

We get the guy who works the middle chair, with the mirror that reflects into endless other mirrors. “Hey, Alex. How you doing, Alex?” Alex hasn’t been in here in weeks, yet they remember. (Then again, I get my hair cut here too, and though they don’t do the best job in Manhattan I feel I have to come here because they take Alex.) 

“How are you, Alex?” Alex bolts into the chair; they buckle an apron across his neck. This is a man place, with golf on the TV. A guy in the corner is getting a shave; a five-year-old by the window chatters through a trim.

During his haircut, Alex doesn’t chatter but does rock back and forth, back and forth fidget, whip his arm up from underneath the apron and sink his teeth into his own arm. “Alex,” I say, watching him in the endless mirrors, “sit still.” 

“How are you, Alex?” this barber asks as I reply, “Just shape it up along the sides and whatever you can get off the front, please.”


Posted by Jeff Stimpson at 8:11 PM EDT
Updated: Monday, 1 October 2012 8:17 PM EDT
Monday, 24 September 2012
Cough and Call

Ned brought it home on Friday, and by Sunday Alex was snarkling and coughing. “Alex, blow your nose!”

I hold my hankie to his nose and he blows; I feel tiny pulses down through my fingertips as the stuff comes out. Too much detail there for most, I imagine. “Alex, bring some tissues.” I keep meaning to go to the store and buy more, but for some reason I keep forgetting.

Alex wakes up on a school morning with the cough still taking his whole throat, but not that often. A moment here, a moment there. Hack and hack with the voice he uses to cough. He feels cool. “Alex, do you want to go to school?”

“Go to school.”

I send a kid to school with a cough when he can't talk. I wonder what they’ll think of me. I wonder if I’ll get away with it, remembering the bullies who ran his pre-school when they gathered all us parents together in a conference room one sunny cool day and said, “If your kid’s sick, don’t dope him up and send him to school. We’ll know.”

We get by the school bus – at least the getting-aboard part. I imagine my cell ringing. Hi this is the matron and he threw up on the school bus. I imagine the matron at the end of the day, when the bus pulls up with the autumn sun setting with longer and darker shadows and she says, “He's been coughing a lot…”

I wonder about the calls through the day. I watch my cell and I watch the home phone for the call from the nurse at Alex’s school. She knows little about him but much about his forms from the NYC Department of Education. “This is the school nurse. Alex is coughing a lot, and we have no forms or medicine authorizing us to give him medication because you haven’t fucking sent them back ...” We do have a spare Xopenex (remember when, in my life, I didn’t know how to spell that?) but I hesitate to send it to school because I don't know if our insurance will pay for another one short of a month.

By noon, I figure if they were going to call they would've by now. What am I trying to pull here? Get him out of my hair and into the care of the state? Soon it’s pushing one and still no call. I do want Alex home if he's sick but still I want him to get through the day.

Alex gets through his day. The bus comes and he bounces off and no one says anything. Is that so wrong? No, because when you're cool suffering through a mucus-y nose is just what you have to do to get through the day sometimes when you're just a normal person.


Posted by Jeff Stimpson at 8:21 PM EDT
Updated: Monday, 24 September 2012 8:22 PM EDT
Tuesday, 4 September 2012

 

I had to forward some of these reactions to "Level I" at http://www.autism-society.org/blog/level-i.html:

 

"As a mom to a 18 year old ID/ASD daughter and a part-time employee in an adult guardianship program, I can only validate that you have a lot to worry about. I've been consistently disappointed with the lack of meaningful vocational options for my daughter but I'm even more disappointed with what passes for lobbying in the autism community. I know that we need insurance reform but it's only an issue that makes politicians look and feel as if they are doing something. Unless my insurance company pays for a job coach, I hardly see how insurance reform helps me (besides there aren't enough PRACTITIONERS in things like OT/SLP/Psych to see our kids who have awesome insurance coverage). Do I sound bitter, disenfranchised, and ungrateful? Well I am, and I just hope that I can keep it together enough to get my adult five year old through high school with enough skill to if not contribute to society at least to stay out of its way." 


"My son, who is high-functioning autistic (as well as having mild M.R. and other issues) is 17 and I have had similar reactions to tests he takes. It's hard as the parent of a special needs child to not let your mind live in the future. '"What will happen to him when I die?"' "'Will he be able to hold down a job without a violent episode at work when he gets upset?'" '"Have I done enough to prepare his siblings for the eventuality of them having to take him in?"' and, one of the most frightening, "'Will all the programs that seem to accept him and work to help him now still be there when he is a middle-aged man?'"


"No worries? That's not possible when you have a low-functioning child. It is what it is, all we can do is keep searching for things to help our children. The reality for many is, in fact, bleak, as science and therapeutic interventions are now."


"My fear is what will become of my son if something happens to me. No one will take care of him and look out for his best interests and needs the way a mother can and does. Yes, I have a special needs trust, but that doesn't really make the fear any less."

 

 


Posted by Jeff Stimpson at 4:32 PM EDT
Updated: Tuesday, 4 September 2012 4:48 PM EDT
Tuesday, 28 August 2012
Vacation's End

Alex comes home from camp today. Gone will be mornings when Jill and I slept until 9:30 (at least I did) and exchanged personal favors as if still childless. The quiet evenings with the TV all our own and no pretzel crumbs or plastic animals on the living room floor. I’m sad. Who wouldn’t be, in similar circumstances?

“My vacation ends tomorrow,” I heard the mom of a special-needs child say once. “My daughter’s coming home from respite.” (“Res•pite (noun) 1. Delay or cessation for a time, especially of anything distressing or trying…”) 

Jill and I had four untrying days with no kids. Personal favors, dinners we liked without having to wonder if Ned liked them, too. “Let’s watch this movie,” we’d say. “Ned can’t see it...”

Ned came home first, bouncing off his bus in shorts and a dirty T, no socks and the laces of his black dress shoes untied. He hugged me like a grown-up. The Friday before Alex returned, we all went to Richard III. Ned’s eyes bugged at the blood; I would’ve had to take Alex out after the first five minutes.

Alex had 10 days at camp. This was his sixth year there. This camp has crafts, a pool, a rec room, and lots of light switches in every cabin. I imagined, as I have for the five Augusts, that Alex bolted cabin to cabin flicking the switches. I find it hard to believe again this August that I never got a call in the middle of the night announcing that he’d bolted out the front gate and would I mind talking to a New York State trooper?

Forgotten for some 10 days, the checklist suddenly loomed. I charged the iPad but neglected to buy Utz Extra Dark pretzels. Did I make his bed? What vitamins and medicines does Alex take at bedtime and in the morning, dissolved in water in little metal cups? It seemed unforgettable two weeks ago.

On the morning he returns, I join the other chattering parents in the shade of a playground – where typical children run – waiting for the hood of the big white bus to round the corner. We’re like people in airport lines returning from vacation, knowing it’s all ahead for another year. The advance guard of the camp staff (“STAFF” is printed on the back of their T shirts) waits for the arrival of the bus.

The parents swarm when the bus rounds the corner; some parent says wooo! The bus comes through the trees and pulls to the curb; STAFF step into the street to help traffic slide through the buses and the double-parked cars. Down at the corner, a Crate & Barrel truck hits its horn. The buses pull in. I see dark shapes behind the tinted glass, elbows angled on top of heads the way they never would be on buses filled with typically-developing people. A staffer raises his arms near the first bus to pull up. “This is G through M. G through M!” Last names, they mean.

I find the bus of S. Then Alex bounces down the steps in his bright orange hoodie. I forgot that hoodie. He shoots off the bus, and with him comes the weight of the world.


Posted by Jeff Stimpson at 8:23 PM EDT
Updated: Tuesday, 28 August 2012 8:28 PM EDT

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