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Alex the Boy from the publisher

JeffsLife
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
Friday, 20 April 2012
Building Buddies
 
We have a moment with Alex one evening after bath time. (He'll be 14 in June and still has a "bath time"!) The witching hour of bed time (he still has a bed time!) and Alex won't go to bed.

"Alex, bed!"

"Two!" he says. "Two, two. Red two!"

By the dining room table sits a box of Legos that Ned left there. Alex charges toward it, but it's time for bed and there's no time for Legos. "Alex, bed!"

Alex does this thing when he's pissed: He lunges with his forearm in his mouth. He bites and -- this is incredible to believe considering his weight of about four sticks of butter when he was born -- he slams into me and sends me back a step. I push back harder than he expects I will, I think, and his foot catches on the chair nearby and he wobbles.

"Alex, go to bed!"

You can't say he started it, not really, Jill will later claim. No, but I don't like getting shoved and a lot of other people don't, either, and Alex needs to learn that even if he is pissed and biting his forearm.

"Red two!"

I have no clue what this means as he begins raking through the plastic Container Store bin of Legos. His hands rasp and rasp through the Legos until the sound drives me ask what I find myself asking all the time, if seems: "Alex -- what??"

"Red two, red two!"

Up comes Ned. I turn to him like Kirk turns to Scotty when stuff begins to happen to the Enterprise. "Ned, see if you can find out what he wants, please?"

Ned bends down. The brothers paw through the Legos while I hold the flashlight and we all want to go to bed except Alex. It begins to feel like a moment when it's hard to believe this time won't mean a thing someday.

"What'cha buildin', buddy?" Ned says to Alex, plowing right in and raking and raking with his older brother. Alex comes up with a few red ones. Ned looks at him. "Two," Alex says. "Two."

"He's building a two!" Ned cries.

Yes he is. A couple across and a couple more diagonally and a couple more across and there's a two. It does look more like a Z, but I've learned you take what Alex can give you when it comes to autism. He then makes a one that looks a lot like a seven, but I say nothing.

"Cool, Alex!"

Alex takes the new Lego letter and number to bed -- he won't, in fact, go to bed without them -- and he wriggles down under the blankets and goes to merciful sleep only when the Lego things are beside him.

Posted by Jeff Stimpson at 4:07 PM EDT
Updated: Friday, 20 April 2012 4:10 PM EDT
Tuesday, 3 April 2012
Aware


Who’s aware? I hope all the people who don’t lead the life that I do. Self-pity? There’s no such thing to the dad I am.

 

I’m aware to my core. “I was going to send you an Autism Awareness Day card,” a friend wrote a few years ago,” but I couldn’t find one in the Hallmark aisle.” Why not? God, she was smart.

 

I am aware when my elder son Alex slams our bedroom door at 8 on a Sunday morning and a few moments later I hear a door slam in the hallway and something tells me to get my ass out of bed and find out what neighbor’s apartment he’s in. Aware when I get check in the mail for $313 in reimbursement from a well-meaning agency for stuff I don’t remember buying but that I wish I could just pay for. Aware that some of that reimbursement money goes to the camp where, for two weeks this coming August, they will make him happy and my wife and other son and I will get some time to sleep.

 

Aware that Alex goes to a “school” where they do all they can for him – I believe this – and that it will not be anywhere near enough. Aware that I grew up in a world where they could spend on autistic people one way, and that I have stayed alive and now they don’t have as much to spend on autistic people.

 

Awareness is a crock, a way for those who don’t understand to try to understand. They will be aware but they will never understand until it happens to them.

 

Aware that Alex will never read what I write here and be mad at me. That I have signed him up for an afterschool program that’s available only to people who have a future in a world where “compassion” is a changing word. Aware that I have no way of knowing what bus he’s coming home on because I don’t have a sure way of knowing if his afterschool program is open today. I don’t know because they don’t tell me even if I ask, because they’re over there and I’m over here.

 

That now when I say, “Hug for daddy, Alex?” the shoulders meet my chest and that I don’t have to bend over at all. That he will be out there in the world unable to speak or tell me what’s going on until my life is over.

 


Posted by Jeff Stimpson at 4:49 PM EDT
Updated: Tuesday, 3 April 2012 4:50 PM EDT
Sunday, 1 April 2012
3,129 Steps

 

My first guest blog! Gayle Nobel has a lifelong connection to autism through her brother and her son. She holds a BA in special education, is an inspirational speaker and parent mentor, and is the co-author of It's All About Attitude: Loving & Living Well with Autism (2006) and the author of Breathe: 52 Oxygen-Rich Tools for Loving & Living Well with Autism (2010). Gayle directed an intensive home therapy program for eleven years for her son, Kyle. She resides in Phoenix with her family. 


Kyle came out of his most recent cycle over the weekend. Hurrah! On Monday, I didn't want to send him to his day program because his 1:1 aide was not going to be there and the readjustment of the first day back might have been much harder without her.

 

How should we fill the day? Kyle had been home for eight days so an out of the house activity was definitely in order. It was a gorgeous day in Phoenix, Kyle was racing around the house with exuberance, and I was pining for my hike.  North Mountain, with it's paved trail, and  close proximity to our neighborhood, was calling out to us.

 

As soon as I opened his door, Kyle bolted out of the car to the trail. He took the first leg at a run before stopping to survey where we were. The beginning part is very steep but it soon mellows out to a gentle upward climb.

 

Hiking with Kyle is stop and start. At times, he is running up the trail, then at others, he needs a long break to stop and smell the roses and gather himself up. We went from running to stopping with everything else in between with lots of water breaks.

 

I decided I would have no agenda for our pace or how far we got. This hike was so that we could spend time doing something enjoyable together while getting exercise. It was not going to be at my usual pace and that was ok. What a gorgeous sunny, but not yet too hot, day in Phoenix and how grateful I was that Kyle was able to have a life again after the rough waters of the previous week. Life's simple pleasures are the best.

 

I was thoroughly enjoying my time outside, being with Kyle, and seeing him enjoy himself. People watching was fun too. I marveled at the variety of shapes, sizes, and ages going up and down the trail. Since the hike is short, many people do the trail more than once so some of the faces became familiar. My favorite was the mom pushing her toddlers in a double stroller with a baby in a pack on her front while chatting with her friend. I noticed her friend had the stroller when they passed us on the way down and I was hoping she had a really good grip.

 

Swirling thoughts:

 

We should really do more of this especially before it gets too hot.

 

Maybe if Kyle had some extra doses of endorphins, it would help ease the debilitating cycles every month. Note to self.

 

Phoenix is so beautiful when it's not blistering hot. Days like this are why we live here. 

 

Kyle is suddenly keeping such a good pace, we may make it to the top where we can eat our almonds on the only bench on the mountain.

 

Wow, it takes so much energy for Kyle to do this, he must burn twice the calories as the average person.

 

The amount of mental energy seems exceed the physical energy.... his focus to keep himself moving is a bigger challenge than actually moving. Go Kyle. 

 

About three-quarters of the way up, my swirling thoughts were interrupted by an abrupt stop. Uh oh, fatigue? My instinct told me it was time to turn around. Even though the downhill was less strenuous, Kyle didn't really want to walk when we turned around. 

 

With coaxing, we headed down the mountain VERY slowly. The mid morning sun was beating down on us and our water was going fast. Walk a little, stop a lot, repeat. This was our pace down the mountain until Kyle suddenly came to a halt.

 

Gently but firmly, he grabbed both my wrists, looked me in the eye and told me he was not moving any more. Clearly, he was DONE with this hike.

 

It was only 5 minutes (at MY pace) and a few switchbacks to the car but he didn't care. In fact, he looked as if he might have  felt a little sick. Desperately, I looked to the side of the trail and there was a rock and possible resting spot. Nature's divine intervention because there were not many of these on this trail!

 

It was easy for me to sit down but very challenging for Kyle. The motor planning involved on shaky terrain and rugged slant of the rock was a huge deal for him. I was reminded of how easily we take for granted all the things our body does for us without thought. For Kyle, anything out of the ordinary pattern of movement requires a lot of thought and effort.  Sometimes, he would rather flee the scene than work through it.

 

With my support and a little nudge, I got him to sit down. Phew! No shade, but at least a resting spot. Several people passed us on the way up and then passed us on their way back down again. We sat for a long time and I was starting to worry.

 

What if he won't do the required walking to get to the car? Am I going to have to call for a rescue and how would that go? No, I decided I would wait as long as necessary and we would walk down. I was grateful to see more color in Kyle's lips again.

 

Eventually, after long while, I convinced him to get up and we slowly made our way to the car.

 

3,129 steps, 1.43 miles, 3 hours quality time with my son. Grateful.                   


 


Posted by Jeff Stimpson at 5:02 PM EDT
Updated: Wednesday, 4 April 2012 4:15 PM EDT
Friday, 23 March 2012
Bolt On

 

Alex slams shut our bedroom door just short of 8 a.m. Something tells me to get up. I don’t, though, and a few minutes later I hear a door shut in the hall outside our apartment. That slam I’ve heard before. The stairwell of our building is across the hall; all you can say is that Alex has never left our apartment building.

 

"Get a lock he can't open!" some have said. Great theory, but again autism proves to us how we’re in a new world: Fire regs forbid a key padlock on the inside of an apartment door.

 

“Regulations” and almost everything connected with the real world seems like mist as I get up and check the rooms of our apartment. “Alex has bolted!” I announce to the form of Jill there in the bed. I could’ve hit the sleeping Jill with a bang stick, but these words get her up quicker.

 

Soon I’m out in the hall. I hear a door slam upstairs, yet I stick to my search procedure of taking the elevator to 15 and then down floor by floor using the stairs. (Stupid dad.) On the 10th floor I find – at this insanely early hour – a delivery man, and then I see a door open down the hall, the lights bright inside and the wood of the floor sparkling new. I hear a woman speaking.

 

 “There’s a strange autistic boy in my apartment ...”

 

Bingo! My life has become saying bingo! to myself on seeing a door open at an insane early hour and hearing a woman saying “strange autistic boy.”

 

“He’s my son,” I tell her. “I’m so sorry…”

 

“I was expecting people,” she says, “so I opened the door and he barged right in!” I peer in and see Alex at her shiny redesigned kitchen counter, standing there with his iPad like someone who will never own a kitchen like this.

 

“That’s all right,” she says. “No problem.”

 

“Alex, come out of there right now!”

 

He does. I’m sorry! he keeps saying. He hugs the woman’s arm. I’m sorry. I take him home feeling like Tom Cruise in Rain Man in the intersection scene. Next day we send a note to the neighbor and slip it under her door: “Hi. I am sorry I came into your home on Sunday. Thank you for being so understanding. Alex…” I have him write it until I see the M and the S just look too … what? Abnormal? Dangerous in an “Oh my God he lives just floor from me!” kind of way? I write the note for him to sign; he does sign his own name.

 

We have tools to keep him here that we didn’t have last summer when he bolted. The iPad, for one. I don’t believe he’ll leave the apartment without it (“I think he will,” says Jill…), so instead of leaving it on the dining room table overnight to charge, I charge it on my bedside table. I also place a chair in front of our door before going to bed and on the chair stack empty tin cans. He’ll accidentally knock them over and make a racket. Solid theory.

 

Stupid dad. How long before he learns to silently remove the cans? Stopping Alex with a contraption is like firing a phaser at a Borg: You get one or two shots at most before he adapts and continues his relentless advance.

 

Please send comments to jeff_stimpson@yahoo.com 


Posted by Jeff Stimpson at 4:57 PM EDT
Updated: Friday, 23 March 2012 4:59 PM EDT

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