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JeffsLife
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
Monday, 21 May 2012
Prom Night

Afternoon, actually; Alex will learn about what magic a prom holds while the sun is still out. "On Friday, the students will be having their annual prom," reads the notice sent home from his school. "The students voted for a theme and the winner was 'New York, New York!' Students will have the opportunity to socialize with their peers while enjoying and afternoon filled with music and dance. You can dress your child up for the day or you can send them to school with dress clothes and they can change right before the prom begins."

Child.

My prom happened at night, I guess, since I never went because I never had the nerve to ask the girl I wanted to take and I'm not sure she'd have wanted to go, anyway. I was a child, too, then, with little town blues. 

Start spreading the news. “Are you going to ask a girl to dance, Alex? You can, you know. You have the Stimpson good looks ...  sometimes they say 'yes' when you don't expect it." Your mother did! He doesn't seem to hear, but does applaud something on  "Teletubbies" on his iPad.

He’s ready for something like asking a girl to dance. He has a zit. He's been doing pointy things with his hair in the bathroom  mirror, daydreaming while getting ready for school. He's been adamently wearing only khaki pants and mismatched socks. “Typical for a teenager," says Jill, with sadness on her face. Why sad? "Because we still have to take a boy who's almost 14 to the schoolbus and pick him up from a schoolbus."

I guess we'll stuff his blazer in his backpack. I imagine he won't wear it. I don't know if he'll dance, but there is one girl in his class and I have no doubt he'll march right up while his 1:1 para holds his hand and ask her to dance. I also imagine he won't know what the words he uses to speak to her will really mean, but who really does at 14? We'll take what we can find for "normal" for Alex, including mismatched socks and wordless statements about hair.

I'm frankly scared of a future that includes Alex and girls. I've always tried to write about him with respect, but it's getting harder and harder in our small apartment to ignore the rubbing and the big ball placed against him under the blanket. Still, it's just a prom, a party.

Alex busted in on a neighbor's party a few weeks ago: He heard the hub-bub of arriving guests in the corridor outside our apartment and was gone with a slam of the door. I found him in our neighbor's place weaving between honor guards of young, well-dressed smilers who glanced at him as he flashed past (pretty crowded: had to be someone in there who knew someone with autism...).

"Sure he wanted to go to a party!" his unit teacher said when I told her. "When I was 14 I loved to go to parties!" We must tap his social need to inspire language, find a way to get him to ring the doorbell first and ask to come in. Maybe asking someone to dance will be a start. 


Posted by Jeff Stimpson at 3:14 PM EDT
Updated: Monday, 21 May 2012 3:18 PM EDT
Monday, 14 May 2012
The Latest Form (Part 2)

“Following graduation from public school, what do you think your son/daughter's living situation will be?” Ah, the H bomb question for parents like me.

“Can you talk to him/her about going to a day program?” I have seen day programs as part of survey work I’ve done for the New York state department that thinks about people like Alex. These programs seem like good places: movies, trips to amusement parks, excursions to the neighborhood stores where I already wonder how people will look at my son as he comes through the door. I would like Alex in such a program, except I do wonder if the money for them will dry up long before he hits 21.

“In which of the following areas does your child need help? Clothing care; sex education; household management; consumer skills; safety; appropriate behaviors; problem solving.” This is not the whole list. I look at Alex across the living room and realize that the list is not meant for him, and I wonder: If this list isn't meant for him, what is?

“Will your son/daughter be able to travel to and from school/a job alone?” Dunno, but I have started to hate taking the subway with Alex because a few years ago on a trip to Coney Island he started giggling and I got the feeling some really big teenagers across the aisle were laughing at him. I know that the people who write these questions have a lot of people to address in a few sentences and that they're trying to help, but please.

Other categories:

“Getting along with others.” Yes, wish I knew more about this one.

“Health/first aid.” When he cuts himself he runs to us and kisses the spot and says “I’m sorry” or “Awwww.” That second one is from an Elmo video he likes. Oliver Platt says the line. Jill and I love Oliver Platt. We saw him in Funny Bones before we had kids, and once we saw him in Shakespeare in the Park, one night when we could arrange the kind of babysitter who can stay with Alex.

“Other (Specify).” Wish I could.

“How do you spend your time as a family?” Coffee shops, I guess, until chicken fingers gave Alex the runs. Then we'd sneak Chips Ahoy in for him in his backpack. If we were responsible parents in a coffee shop we’d order him a hot dog and slice the fucker in a way no one else on earth would eat but Alex would. But instead we usually sneak the cookies. Plus we walk a lot. New York does have that, and I hope it lasts Alex his life.

“How would you like your school district staff to assist you in planning for your child's needs after graduation/school completion?” I'd like you to give him a home.


Posted by Jeff Stimpson at 6:46 PM EDT
Updated: Monday, 14 May 2012 6:47 PM EDT
Tuesday, 8 May 2012
The Latest Form

I picked up the latest firm to come home with the boys and whipped out the pen. I've filled out miles of these lines through the years: for camps, programs, school stuff, busing to all of the above. I have folders after folder loaded in its bay over there on the shelf with with physicals, TB certifcations, immunization histories. Only things I'm missing are the boys' birth certificates, which Jill stupidly handed to me to put somewhere safe. I'm sure they'll turn up.

Level I Assessment reads the latest form; Tools for Schools! is the adorable logo in the corner. They want the parent/guardian name, the student name, the school district. Our address. Kids' stuff.

"After leaving school," the form reads, "I would like my child to participate in (please circle all that apply): supported employment with job coach; sheltered workshop; full-/part-time employment; day habilitation; vacational school/training; day treatment. College. Military.

Vacation school! Great! Oh crap -- "vocational." How many parents circle one of these in a fit of optimism then scribble the circle out later? What is day treatment? Sounds like something out of The Snake Pit or Willowbrook, though I hope I'm dead I'd let the pen hover over it. "College" and even "Military" just taunt me.

In which kind of jobs does your son/daughter seem interested?

Son. "Alex, what jobs are you interested in?"

"iPad!" Like most modern workers.

"Jill," I tell her, "I pulled this form and figured it'd be like all the others. But, well, take a look. it's going to require some thought." She takes a look and it's about five seconds before she puts her palm over her mouth and rests the whole weight of her head on her hand.

What do you see as your child's social strengths? What do you see as your child's social needs? What do you see as your child's vocational strengths? What do you see as your child's vocational needs? What skills do you think need to be developed to help your son/daughter reach his/her vocational needs? What chores does your child have at home?
 
Those that I remember to give him. Picking up his room. Folding laundry. In fact, we put "Folding laundry" on his IEP. "'Sloppy' if unsupervised when folding," Alex's OT still reports.
 
How about setting the table for family events, then? Or not running around without underwear during family events? Great at one, sloppy at the other. There's no form for what my life is.


Posted by Jeff Stimpson at 6:00 PM EDT
Updated: Tuesday, 8 May 2012 6:05 PM EDT
Friday, 27 April 2012
Screen Time


ScienceDaily reports that children with ASDs "tend to be preoccupied with screen-based media."

"Alex, hear that?"

He peers into his iPad as if peering into a crystal ball. "Alex?" I walk over to the couch and see Teletubbies on the screen, sometimes Elmo and crew. Alex peers closer; I see his new mustache in the glow of the screen. “Alex, did you hear me?” He grips his headphones as if I had lunged to seize them off him – which I will have to do about 9 tonight, Alex’s bedtime as he nears age 14.

The study by Dr. Paul Shattuck at the Brown School at Washington University looks at how children with ASDs spend screen time. "We found a very high rate of use of solitary screen-based media such as video games and television, with a markedly lower rate of use of social interactive media, including email," Shattuck says.

TO: Alex

FROM: Your father

SENT: Wed April 25 2012, 9:13 p.m.

SUBJECT: Go to bed

Nearly 60.3 percent of the youths with ASDs were reported to spend "most of his/her time" watching television or videos. "This rate appears to be high, given that among typically developing adolescents, only 28 percent have been shown to be 'high users' of television," Shattuck says. As cognitive skills increased and children with ASDs grew older, use of social media increased.

“Dad?” says Ned. “When can I use the iPad?”

Ned deserves the iPad, too, but the thing keeps Alex quiet in the evenings. I ashamed how much I like the quiet; I know I’m not helping Alex. “Soon, Ned. Alex, let’s hit the bath!”

Alex doesn’t seem too interested in social media. He sits evening after evening in the flow the bathtub faucet, never washing his hair unless I ask him to, unless I dribble the shampoo into his palm and teach him to rub it into his hair with both hands. I asked his teachers to teach him to use both hands for things – aren’t they doing that? Often, Alex sits in the tub and stares to the right. After half an hour or so, I hear the water go quiet and Alex emerges into the living room, usually wearing nothing. Did I mention age 14?

"This proclivity for screen time might be turned into something we can take advantage of to enhance social skills and learning achievement, especially recent innovations in devices like iPads.”

I’m ready to take advantage of anything.

 


Posted by Jeff Stimpson at 3:58 PM EDT
Updated: Friday, 27 April 2012 4:00 PM EDT

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