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JeffsLife
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
Monday, 20 August 2012
Pajamas

Alex says “Pajamas!” on the way out of his bedroom with an hour to before we leave to put him the bus for a week of camp.

“No, Alex,” I tell him. “You can’t change into pajamas now. Keep your shorts on. We’re leaving soon…”

Later Jill will say, “Sometimes you have to listen to Alex.”

We’ve never thought of letting Alex help pack himself for camp. Once last winter when he was going away for weekend camp, though, I was inking his last name on all his socks when he walked up to the open suitcase and dropped in a plastic box. “Soap,” he said. In retrospect, how much more of a clue did I need that he should help pack?

That night after he left this year, the bus long gone and him up the woods, I go into the boys’ room to shut the door – both boys gone to a camp for a few days and we might as well save on the A/C in between bouts of catching up on sleep – but then I remember that the cat likes to sleep on Ned’s bed. I open their door and spy the dark thing on Alex’s bed and think, “Oh shit!”

They’re just pants but soft and warm and blue; he wears them every day to lounge around and watch his iPad. I hold them up and think of him up there in that strange bunk in a world where so much is strange already. I imagine him that night at bedtime wailing, biting his arm, flailing on the planks of the cabin floor and saying “Oh, pajamas! Oh iPad!” and knowing that both of those treasured things are miles and miles away and maybe even realizing too that a weekend yawns ahead with no mail delivery.

“Don’t lose sleep over this,” Jill advises. “We’ll call the camp and send them tomorrow.”

We do: We call his counselor on Saturday morning and say they’re on their way. She says he didn’t have a bad bedtime without them, but sometimes as Alex gets older and more expressive about his wants (Oh pajamas…), I find it harder to always believe the reports I get from those whose job it is, in part, to give me a break from my son.

UPS wants $56 to send them by Monday afternoon. The Post Office says $14.95, “$27.45 for Sunday afternoon.” “Sunday delivery would be great!” I say, imagining him wriggling with joy when the counselor pulls them soft and warm and blue out of their USPS Express Mail Tyvek blanket and says, like the note I penned, “Daddy sent these, Alex, and he’s sorry.”


Posted by Jeff Stimpson at 12:55 PM EDT
Updated: Monday, 20 August 2012 12:57 PM EDT
Wednesday, 15 August 2012
Dog Days

It’s been the humidity, which went up in mid-June in New York and never came down; even a day after a heat wave when the temp had retreated 15 degrees, the air stayed close. They warn the young and fragile about breathless days of high ozone, and Alex sort of continues to be both.

“It’s David,” says the voice on my cell phone. “Alex doesn’t want to go anywhere today…”

Jill’s got this thing about summer, spawned in the Mid-Atlantic region and the academic life of her now-gone uncle who had a place on Cape Cod. Being from Maine, I’d take a crisp October vacation any time. Point is, our summers have somehow and quietly ceased to be fun. I drink too much wine on too many June evenings and tell Jill in excruciating detail about how I dread the coming weeks when both boys will be loose from what society considers their education and I consider our babysitting. I’ve ruined a few summers in a row for her, and I don’t think either of us is sure how many more summers together we can handle.

Maybe Alex is picking up on this; maybe too he’s just a rebellious 14-year-old, like any normal person who’s 14. Often Alex doesn’t even want to go anywhere with David, the young man we hired a year ago to spend time with Alex and who has consistently come up with stuff to do for a few hours that Alex has liked.

This summer, my cell phone tingles in my pocket. “It’s David. Alex doesn’t want to do (whatever David had planned, which would have been fun). “We’ll be back home soon.”

Hard to believe Alex didn’t want to get on the train when he had a chance for Coney Island. Why’d he watch the roller coaster video the other night on the iPad? Still he didn’t want to go? What else didn’t Alex want to do? I’ve lost count: music stores; the Apple store; the Lego store. Alex is starting to give people a hard time as he tries to figure out the world.

Summer school seemed to bore Alex (who’s in what they call a “12-month” educational program). He just didn’t bounce up the steps of the morning bus like in some six summers past. His summer class mirrored the class of the regular school year – same school building, same classmates, On the last day, they sent home a construction paper Olympic torch. Nice work,  but Alex will be 15 next summer.

He goes to camp in a few days, and will be gone for 10 days. Maybe that will save this summer. Wish I was going to camp.


Posted by Jeff Stimpson at 4:15 PM EDT
Updated: Wednesday, 15 August 2012 4:16 PM EDT
Friday, 3 August 2012
The Door

 

One of the first things I learned living in New York City was that you had to shut the door at the end of the day. You had to have some slim barrier between you and the stuff that comes when eight million people are crammed into a space way too small. It would be nice if I could do that with Alex.

 

“Hey!” he says over by the couch, “okay okay okay. Oh no. Hey Mr. Ladder…” He bobs and struts to the inaudible sounds of the iPad. Who’s “Mr. Ladder,” and why does he sound so much like a villain from a superhero show I watched years before autism was in my life?

 

I’ve spent a lot of time with Alex this summer. Summer school takes only from 8 a.m. until about 3:30 p.m. Last winter, during the real school year, he left the house at 7 a.m. and returned home from an afterschool program around 5 p.m. – what must’ve been a delicious 10 hours for a young man pushing 14. But programs for Alex, who’s neither a child nor an adult yet, evaporate like puddles in the bright sun.

 

Depositing, I think, folks on our benches and in our doorways. Yesterday on the subway, a man sang to me for 10 minutes about rain, I think (it’s never Michael Jackson doing these things for change). This morning I saw a man bob and weave down the sidewalk and talk to pigeons. I can’t remember how many times I’ve walked by someone babbling on a park bench.

 

Home at 3 and straight onto the iPad. I know I should be doing, well, things with Alex, and that some parents have surrendered their lives and livelihoods to studying how to be with people like their children. I’m not one of those parents, though I’m coming to suspect I should be. So Alex plays his Elmo on the iPad and I write things like this essay and we go on until Jill comes home from work in a few hours.

 

Bob and weave, bob and weave over by the window. Chattering at about 5:30, darting into our bedroom to find the iPad. Out to the couch with all the living room lights on, to the couch where I hope he stays as I listen in a half-doze for the rest of the night. You must rest, you have to be able to shut the door. But we can’t.

 

(Oh no. Hey Mr. Ladder…)

 

When Jill and I fight – and that happens a lot more than it used to, believe me – there may be me and there may be her and there may be things, but overriding all for me is the feeling I get when I look at an Alex, who suddenly has a mustache and who is almost as tall as Jill. A blink ago he was squirming in the NICU, and in a blink he’ll be 21 and out of the protection of public education. Two hundred and fifty weeks or so until 21; I figured it out the other day in a mood inspired by beer and what Jill calls, in our fights, “unemployed depression.”

 

When he hits 21 and if we can put all the things in a row, he’ll go somewhere and we won’t see him as much. We’ll tell ourselves each night then that Alex likes this new arrangement – and hell, he’s no baby in the NICU anymore and he probably will like it – and that we need him in a place from us. We’ll get up then and lock the door.


Posted by Jeff Stimpson at 4:29 PM EDT
Updated: Friday, 3 August 2012 4:32 PM EDT

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