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JeffsLife
Monday, 2 July 2012
Voice

I've hauled Ned and Alex out for a Sunday afternoon. The streets of Manhattan are yellow, empty and hot. I steer the guys toward the shade, figuring this is the kind of street-smarts a good dad imparts. "Shade, guys. Hug the shade. Water's in Alex's backpack." Ned's wobbly. Alex walks and walks and then breaks into bobs and weaves. I wish he wouldn't do that. I'm sure he wishes he was home with his iPad.

"Michael's?" Alex says. This is the crafts store nearby -- and despite autism he sure as hell knows it's nearby -- where they sell the plastic animals he always and always seems to want. "Yes, Alex, we'll go to Michael's as soon as we go to the sporting goods store to buy Ned his baseball glove." Ned doesn't have a baseball glove. I had one by his age.

"Michael's?"

"Yes, Alex. We can go to Michael's now." Michael's is across the yellow hot street. It's 94 degrees. Is this the kind of future summer for the kids I brought into the world?

In Michael's Alex yanks my arm toward the aisle of plastic animals. Thing is, he got a plastic bear yesterday. Tomorrow, while Ned is at baseball, the plan calls for me and Alex to hit clothing stores to find the right cut of narrow pants and shorts that Jill insists -- and I agree -- he needs to look anywhere near, God, let's face it, normal. I think yet another plastic animal in our house would be a good reward for good behavior during clothes shopping, and tell him so.

"Fireman?" Alex says, holding up a $4 plastic fireman. I thought they just had animals.

"No, Alex. Tomorrow. If you're good while we're clothes shopping."

"Tomorrow..." Alex says. Does repeating words means he's moving ahead? We bob around this retail environment for a while: Alex fiddles with the idea of making me buy a wooden letter; Ned finds a wooden cruxifix and thinks you drive into the vampire's heart to kill him. I explain that no, you hold it up and keep the vampire away. I tried to show Ned "The Night Stalker" once. Ned didn't seem interested. "Alex, let's go!"

"Dad," says Ned, "how about some clam chowder?" He's referring to the pot of stuff at the next-door Whole Foods. I'm ashamed to admit it as a born New-Englander, but what they call chowder at this next-door retail environment isn't totally repugnant. "Okay, Ned." So we go next door into the air conditioning and scoop out chowder. They even have a place to sit down to eat it. "Ned, go find us a seat while I pay."

He does. I find him. Four chairs, three of us. In a normal life, that would be enough. "Nooooo!" says Alex. "Nooooo!" I don't know if it's the heat or the backpack or that he will eat nothing we eat, but he will not sit down. Ned has his little cup of chowder -- I've taught him to like the stuff -- and I have my big bowl and neither matters to Alex. I tell him to sit down and he bites his own arm.

"Alex, sit down! I want to eat my lunch!" Doesn't everyone want to eat their lunch? Isn't everyone entitled to eat their lunch? "Nooooo!" He bites. He squats on the floor. I feel and yet don't feel the stares of the people at the table behind us. "Alex, I just want to eat my lunch!"

Alex doesn't do lunch. Haven't I learned the simpliest lesson yet? I haul him outside. He squats on the sidewalk and when I order him to stand up he does and then squats down on the sidewalk again almost immediately. Ned appears. "Alex," Ned says, "what do you want? Do you want the iPad? The iPad isn't here. If you want the iPad we have to go home. You have to go home if you want the iPad."

I'm not sure I can reach Alex anymore. I'll know Alex 30 years if I'm lucky (at times I feel like I'll know him 40 years if I'm not). Ned may know him for 70 years, if the love and caring doesn't evaporate some afternoon on the floor of a place like Whole Foods. You have to go home if you want the iPad. That is the voice of a parent.


Posted by Jeff Stimpson at 1:58 PM EDT
Updated: Monday, 2 July 2012 2:07 PM EDT
Friday, 22 June 2012
Happy Birthday 2

Alex's birthday celebration Act 2 was supposed to happen on Sunday at grandpa's lake house. Except Alex had a bathroom experience and I didn't think it was a booming idea to put him a rental car. So we stayed home.

Jill and Ned went to grandpa’s with Aunt Julie and Uncle Rob, and that would have been spiffy if Alex had been bedridden and dopey over his iPad. Unfortunately he scrambled into his khakis and sneakers, strapped on his backpack, held his arm out stiff toward the front door, and said, “Take a walk!”

“Alex, we can’t risk it, sweetie. It’s a long ride…”

“Take a walk! Grandpa’s lake house. Party!”

How did he know that we were planning to do the rest of his birthday with the family today? He heard you talking about it, stupid! Except I don’t think Jill ever talked about it with Aunt Julie except on the phone, and never discussed it with me in Alex’s presence. A lot of the time at the lake house he spends watching “Sesame Street” in the basement or, last time, hooking up grandpa’s laptop to the Internet. But this time there was going to be something different.

“Party?”

“Oh, Alex.”

If he could just tell how us how he’s feeling, we could risk the back seat of the rental car. But he can’t. And so with yet another day scooped hollow by autism, about all I could come up with is a walk to the local big supermarket.

I make it a point to leave with Alex – Jill should be the one to go to the lake house and celebrate Father’s Day with her dad – before Aunt Julie pick up Jill and Ned. Alex and I start up Madison and get as far as 116th Street when his arm shoots straight up, pointing west. “PBS Kids,” Alex says. “PBS Kids…”

I thought he wanted to go west on 116 to see some kind of billboard with Elmo or something. But at the intersection of 116 and Fifth it hit me that he was taking us toward the garage where we normally pick up a rental car. “Alex, no,” I said. “We’re not going to grandpa’s lake house today. I’m sorry, sweetie, but we’re going to stay here but right now we’re going to the grocery store.”

“Car? ‘PBS Kids’?”

“Alex, I know you’re disappointed, and I’m sorry.”

He pulled me for a moment, he looked away, then he said, “Grocery store.” There’s not much more to say. In the store I offered him cookies, crackers ans chocolate. He chose to have me buy a bag of balloons and he was okay bathroom-wise for the rest of the day, and that sucked.


Posted by Jeff Stimpson at 3:20 PM EDT
Updated: Friday, 22 June 2012 3:21 PM EDT
Wednesday, 13 June 2012
Happy Birthday

Tomorrow is Alex's 14th birthday. I'll write him a letter, just like I have on every June 14th since that hot afternoon when I walked against the tide of people coming from the Puerto Rican Day parade in Manhattan to make my way back to the hospital. Just like I did after a sandwich in the coffee shop (now long gone) while “This May Be the Start of Something Big” actually played on the radio.

This may not be one of my cheerier letters. Tough year. A year ago he was bolting into neighbors’ apartments. More recently there have been ugly things that have nothing to do with him. Still, my toughest year as a parent -- tough too because I realize this is just the start.
 
I had a cheery piece planned for here about Alex eating corn on the cob at a street fair, but you have to go with the subject that's burning a hole in your pocket. I drill him on birthdays.

“Alex, tomorrow is your…”

“Is your,” he says. He’s munching pretzels and watching Elmo on the iPad.

“Bi…”

“Birthday!”

“Birthday!” Back to Elmo. Alex just got home from school. Ned is really late, and I bet he’s somewhere buying Alex a present.

Almost a decade and a half since the isolette and going to the hospital every damned night. Fourteen years and three schools. Fourteen years and now there's a mustache and there’s hooking up a computer when other people claim they can't. Now there's a school prom coming up. “Are you going to ask someone to dance, Alex?”

“Maybe when he has his iPad and he's dancing around to it, we could dance with him,” says Jill. “He doesn't ask for much and maybe he wouldn't like it, but maybe he'd like the company.” I'm afraid the first thing I think is that he'd sit down on the couch until we left him alone. Guess that would be okay, too.

To Jill, I'm afraid, falls most of the ideas this year. She doesn't disappoint. “”I want him to have a special day and feel special and loved,” she emails. (Hope he feels that from me when I hustled him out of the house this morning with a haul on the arm and a snap that he’d dawdled over putting on his mismatched socks and so had no time for the iPad before the schoolbus. Hope so.) 

“I thought we could decorate with balloons,” Jill writes. “I should make birthday sign tonight!! And just in general help him realize he's having a special day (which when he's reminded he seems to be on board with). I am pretty sure I have all brownie ingredients. 

You can help me make sign later. Is there any space in the living room or on a bookshelf that we could clear off/establish for him as a Lego numbers place? Window sill? Top of the air conditioner?”

Alex has been making numerals out of Legos and setting them up the edges of the coffee table, the dining room table, the entertainment unit (much as we have “entertainment”). “1976” in red Legos to the right of our TV, “946” in yellow to the left.

“You have to really think outside the box for gifts for him. Can we push some books in on a bookcase? It wouldn't be so terrible.”

No, it wouldn’t. I can’t think of a better gift. Wish I could. 


Posted by Jeff Stimpson at 4:48 PM EDT
Updated: Wednesday, 13 June 2012 4:54 PM EDT
Monday, 4 June 2012
Holidays

The holiday weekends at grandpa's lakehouse have been work. The lakehouse has a computer, cable for the basement TV, a porch for grilling, a path to the lake. The nearest neighbor's place is through a thin copse of trees and bushes where, when we first went to the lakehouse, the neighbors had put up no gate. The lakehouse also has a lot of doors that Alex found from almost his first instant there.

Once I finally snagged him half-way up the living room stairs in the neighbor's house, and on another holiday I was at the dock fishing with Ned when I spotted Alex's bright red T shirt flashing across the neighbor's porch with Jill and Uncle Rob on his heels. 

I hate Alex barging in on neighbors, either at the lakehouse or in our own apartment building; his bolting made the lakehouse exhausting, at least for me. Soon the neighbors put up a little gate.

Alex has always seemed to understand what the lakehouse was for; we'd take out the rowboat and he'd never try to jump ship. Basement cable also made it easier for a while: He'd spend hours down there in a carpeted proper bedroom, watching "Sesame Street." "Grandpa's house!" he began to say on the car rides up. "Watcha El-MO!"

And he would. Once or twice Alex would emerge upstairs and help set the table. We'd fry him Hebrew Nationals and slice them just so and he would take them to the basement (most trips he wouldn't eat them) and throughout my family holiday dinner I'd keep an eye on the basement door, ready to bolt should he bolt. 

Memorial Day this year promised to be tough. We've been bringing the iPad but Grandpa's house just got a new router that I guess wasn't quite working yet. Still, Elmo would be waiting on the basement cable. Alex has also been places this year, like to an afterschool program with computers. Just a few weeks ago, Jill and I stepped into his classroom and for an instant wondered who that tall boy was sitting back-to us at the Mac.

"Elmo? Watcha Elmo?" Alex said, sliding behind grandpa's computer on Memorial Day. If he's got a seat and seems happy and if he isn't just down in the basement, I'm happy to go for a minute and see what Ned's up to, especially if there are folks around the computer to keep an eye on Alex and his orange T shirt. I darted back a few minutes later and Alex was still at the computer, except now he had the browser and router working. Later Uncle Rob and grandpa say the same thing: Alex was the only one who could get the computer online.

I chopped down the weeds in the path to the lake and then took out the kayak and played U-boat for half an hour and soon it was time to eat. There still sat Alex, right next to the adults and Ned talking and talking, and I wondered and glanced but I don't think anyone noticed this young man with a mustache was watching Elmo. For the third or fourth family meal in a row, I got to eat.

Soon it was nearing time to go. I looked in the basement and the bedrooms and no Alex. I looked in the garage and on the porch. 

"Jill, where's Alex?" "Ned, have you seen Alex?" 

I glanced through the path I'd cut and saw a flash of orange down by the dock. I ran down. I ran through the sweet fresh-cut path, past the neighbor's gate and rounded the muddy corner and saw Alex in orange. He was sitting at the dock, staring into the water. 

"Alex, buddy. Whatcha doing?"


Posted by Jeff Stimpson at 4:30 PM EDT
Updated: Monday, 4 June 2012 4:36 PM EDT
Sunday, 27 May 2012
Level I

"Level I Assessment" reads the document they slid across the table at Alex's IEP. It claims to be a "student interview," and has a space for his name, birthday, age, and today's date. He filled them all in with pencil with numerals and letters that grew as he wrote left to right; the "son" of "Stimpson," for instance, is twice the size of the "A", the "98" is twice the size of the "6" for his birthday. You get the idea. I also have to think someone in his school helped him on the questions, but at this point I do hope that means they didn't actually have to hold his hand that was holding the pencil.

The assessment consists of 12 multiple-choice questions for Alex about his life and activities. Each question and selection of answers comes with assorted square-inch pictures I sort of remember from standardized tests I took in first grade. I'm not a big fan of standardized tests, and one reason is that one of the pictures on my first-grade test was of a squirrel, and that made me teary because we had a squirrel living in our backyard at the time and I wasn't used to being in school for a full day. Hard times.

"What would you like to do when you leave school?" Alex is almost 14 and still watches "Teletubbies," so this one scared me until I realized they were just asking about dismissal at day's end. Alex checked "Home." To "What do you like to do?" Alex checked "Music," which I think must take a distant third to "Computer" and "Television" but does place several laps ahead of "Cleaning - Work."

"What do you do when you go home?" "Listen to music." Again with this? But yes, there is music in "Teletubbies." "What do you not like to do?" Alex checked "Computer," which brought to mind the beaten expression on his face a few years ago when he tackled and failed an IQ test. Wish he'd checked "Friends."

"What jobs are you interested in?" He checked "Delivery of materials," which coincides with what his teachers have reported and does offer a legit job possibility. "What is your favorite part of the school day?" "Reading." Great! The picture for "Reading" resembles Kilroy reading a book. "Is there something you'd like to do before you graduate?" Alex checked "Trips." (For Alex I might've checked, "Win Mega Millions.")

"Would you like to visit a possible program before you graduate?" "Yes."

Posted by Jeff Stimpson at 4:52 PM EDT
Updated: Sunday, 27 May 2012 5:00 PM EDT

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