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crossposted from our family website - http://wiki.hypertwins.org/User:Woozle/blog/2009-08-25_0654_Joshercize_your_way_to_rage_and_exhaustion

 

Woozle

Josh's first morning back at school went about as well as I expected, which is to say not very well at all. We're fully expecting a call from the school any minute.

He objected to Sandy getting up early; he stomped around and repeatedly turned off all the lights. Sandy had to fight with him to get his teeth brushed, though he cooperated with the underarm deodorant. He kept putting his clothes away, and wouldn't let Sandy get out his school notebook; I finally came up with the ruse of continually turning on lights (which he would then rush to turn off... eventually we just had a Mexican standoff with me hovering near the light, ready to turn it off if he got too far from it) to distract his attention from her.

We had been told that the bus would arrive around 6:45, but allow 10 minutes on either side -- so at 6:25, we started getting ready to implement Plan B.

And then we heard the bus honking.

Plan B was to go like this: In as calm a fashion as possible (so as not to trigger Josh's oppositional behavior), I would escort him out to the car and sit him in the front passenger seat where he usually rides. If he was cooperative, I would then get him dressed; if he was not cooperative, I would drive him somewhere nearby and try again (as has worked in the past). And then we would wait for the bus.

What actually happened was this:

1. Race out to tell the bus driver to hang on because we were just getting him dressed, having been told to expect the bus no earlier than 6:35.
2. When bus driver insists that he can't wait very long, explain that it takes us 5 or 10 minutes to get Josh dressed, so we really need to know exactly when the bus will be arriving; make note of fact that bus driver said he will be here at 6:25 in the future.
3. Rush back into house, try to corral Josh:
   • Herd Josh out of living room
   • Run after Josh when he goes upstairs instead of down the hall
   • Grab Josh and physically carry him down the stairs (note to parents: this is why Sandy can't handle Josh by herself)
   • Herd Josh through the dining and kitchen areas (it's all a blank, but I'm sure he was fighting and making unhappy sounds the whole time)
   • Stop him from going into the laundry room
   • Shove him out the door and escort him firmly to the car
4. Get Josh dressed in the car:
   • Hand him underwear; take it back when he starts looking for some place to hide it.
   • Start taking off his shirt, which he miraculously cooperates with
   • Hand him his new shirt, which he miraculously puts on
   • Hand him his pants - same
   • Put his shoes on the floor of the car - same
5. Stop Josh from escaping around the car instead of going to the bus -- oops, too late
6. Chase Josh across the front lawn
7. Apprehend Josh and bring him back towards the driveway
8. Stop Josh from going back into the house
9. Physically lift and restrain as necessary and drag him towards the bus
   • we ended up in a sort of very energetic bounce-skip, where I think he was hoping the bounces would let him break free of my grip -- but I just bounced with him
10. Shove him into the bus, give bus driver the backpack, wish him good luck and apologize for the delay
11. Collapse on couch, panting
12.  ???
13. PROFIT!

To be done later: receive phone call from Jordan, go pick up Josh who "just won't settle down". Or, at the very least, spend entire day dreading the sound of the phone.

These Blogs were originally posted by Jeff's Life

The Looks

Recently, my 12-year-old Alex kept trying to scoot through an open door in the basement of our neighborhood supermarket. The store wasn’t crowded and hardly anyone noticed me hauling him back to the checkout line except a young lady working the register. I saw her looking at Alex with the small smile and direct eyes that I’ve learned mean: She knows someone with autism. She stroked his head once.

 

The cashier might have stroked Alex’s head out of understanding the kind of life Alex is likely to have. Of course I wish she’d felt comfortable yelling at him, comfortable because he was normal and he shouldn’t be trying to run in the basement of a grocery store, comfortable in the way somebody might be yelling at Alex's typically developing 9-year-old brother Ned.

 

They don’t yell at Alex in the pizza place, either. I take him there in the fragile hope that he’ll eat the cheese off a slice or two while he’s out of the house so Ned can get his English tutoring. Alex and I often take the table way in the back, and the first few times I did this I was scared he would bolt while I got the pizza. “We’ll keep an eye on him, buddy,” the guy behind the counter said.

 

 Alex has received his share of looks – more outside of New York City (they positively stared in the Massachusetts malls), perhaps because people are used to seeing just about anything in New York and passing by without what appears to be an obvious thought. When Alex was still a baby on oxygen, some kids on a Queens sidewalk did ask, “What happened to that guy!?” That was nice; Alex was emerging from a year in the hospital, and it was good to think he’d ceased to be patient and had finally become some “guy” on a sidewalk.

 

People – at least the people I’d like to have around Alex – seem to need to think there’s something beyond vulnerability to those with autism. Something special or beneficial to society, or at least likable and warm, like the message of movies like Rain Man, lessons tied up in what Richard Yates disdainfully called “a neat little dramatic package.” Yeah, there’s autism. But they can count cards, too! Some of them can count cards. Some can paint. Some with autism can do all sorts of things, just like some of all of us can, and of course the verdict is still a long way off when it comes to Alex’s real abilities. I want people to stroke his head someday because he helped them, because he contributed in a way that brought him fulfillment at the end of his working day. And I want to live to see him get that. I call that my Hopeful Outlook.

 

Close Shave

 

All of a sudden Alex has a line along his upper lip. At first, like every parent of a boy pushing 12, I assumed it was dirt. Then I assumed it was shadow. Then I realized that Alex is getting older and older and older, and suddenly another milestone was gone.

 

He has a pencil line, like Matt Dillion’s in Something About Mary, a line that curls around the corners of Alex’s lips. I feel like I’ll just turn around and Alex will soon look like Burt Reynolds in all those pin-ups from when I was about Alex’s age. I’ll have to remember to get Alex gold medals and necklaces to hang in his chest hair.

 

He has hair in other places, too, but I decided long ago to confine most of my writing to the stuff above his waist. Alex is also getting taller: He’s up to the back of Jill’s neck now, and has once again pulled half a head ahead of his little brother Ned. Alex is also getting stronger: When he doesn’t happen to want to go somewhere – and being autistic he often doesn’t want to go somewhere we want him to go – he plants a stiff arm on the doorjam and is mighty hard to budge, even for me. Jill’s ability to handle him is slipping faster than mine, which I don’t like to think about for kind of the same reason I don’t like to write about the hair below his waist.

 

So, we’re off to shaving. I shave, of course. Nobody taught me to shave, as my dad died when I was 12 and one Christmas mum simply gave me a blocky Remington that missed about everything under my jaw. Sometimes today I use a blade – triple-blade razors and pricey shaving gel have changed my life – and Jill shaves her legs with my razor when I’m not looking. We will not use triple-blades on Alex.

 

Jill’s first thought, however, is that we should also shave his eyebrows – or eyebrow, as he as one, and it stands out as what we think is an unnecessary badge of his condition. My electric Norelco has a pop-out blade that should be just the right width for brow work, but I hope the exercise doesn’t go like the shaving of Mike’s mustache on “All in the Family.” He showed up in one episode bare-lipped, and said that he’d started trimming one side, then took a little off the other side to even it out, then took a little more off the first side to even it out, then took a little more off the second side to even that out, then suddenly he had no hair. Alex needs two eyebrows. Not one, you see, but two. Funny how I never imagined I’d have to think about stuff like this for my son.

 

Alex watches me shave; he never used to, but now he sometimes appears in the mirror behind me when we hears the whir. “Alex, want to shave?” I hold the razor to his upper lip. The vibration reduces him to the giggles of a tickled child.

 

 

Pretzel Logic

 

 

When we decide to get off Alex off the pretzels, there’s maybe a bag and half of Rold Gold Original Thins left in the house, scattered through three bags. Not much left but fragments and salt, either.

 

 

 

 

 

“Alex, no more pretzels in a few days, you know.”

 

 

 

 

 

We plan to substitute ice cream. What kid in their right mind is going to turn down that deal? I’m betting that eventually Alex will, and he adores ice cream. He recently graduated to chocolate from just vanilla, so that’s progress. “Pret-zul!” I imagine he’ll say. “Pret-ZUL!”

 

 

 

 

 

I recently learned that a panel chaired by a Harvard doctor has concluded that there's still no proof that special diets help or don't help autistic kids, or that food allergies or sensitivities or gut problems cause autism The panel included 28 experts in 12 scientific disciplines. Very scientific, but did they panel examine pretzels?

 

 

 

 

 

Like Original Thins, Utz Dark Specials, even minis. Alex has munched all these for years, leaving almost as many on the floor as he got to his mouth – often with a splattery crash of an upsetting bowl, a crash I’ll hear for the rest of my life – and, like Elmo, the time has come for the heave-ho of these things from his life. Not to mention the crumbs and salt and the roaches; I’ve heard a roach can live a decade on half an Utz Dark Special.

 

 

 

We can do this. Ages ago we jettisoned the Bugels and then the Saltines at home, Jill says. “Pretzels are three bucks a bag. It’s a lot of money and it isn’t doing him any good.” She adds that Alex also gets fixated on things, but once those things have been gone for a few days, he tends to stop demanding them. This is the tone and language one of us uses when it really is time to fight another battle and make a change in Alex’s life.

 

 

 

And yes, we’ve heard all the talk about wheat and salt and all the other stuff that’s supposed to hinder those with autism, but we stuck with pretzels all these years for the same reason we’ve stuck with Elmo and allow Alex to wear deliberately mismatched socks and only khakis: Because we’re working on other stuff with him like better sleep and losing baby teeth and, soon, eating at the table. When parenting a child with autism, you pick your battles. Last night we tossed the last empty bag of Original Thins.

 

 

 

 

PS: He lost another baby tooth the other night, and this one we got to keep! Jill, as usual, was frightened it was one of his permanent ones. “Nah,” I said, spilling it into her palm, “it looks like a BB.” I can’t imagine how it ever helped him get through a bag of Utz Specials.

Got Michael's?

 

Alex gets off the school bus one afternoon and says, “Going to Michael’s?”

 

 

 

 

 

“We’re not going to Michael’s,” says Jill. “Not today, Alex. Michael’s is not an everyday thing, though that would be nice, I admit.”

 

 

 

Michael’s, in case you don’t live near a strip mall, is an arts-and-crafts box store stocking everything from artists’ palettes and oils to scale plastic models of WWII dive bombers. A Michael’s just opened near us; already Alex has tricked me into going there.

 

 

 

 

 

I bet Jill wishes Michael’s was an everyday thing, as they have yarn and she’s turned into an incorrigible knitter. She loves the store so much that six weeks ago, in the middle of the memorable holiday/unemployment season of 2009, I spilled $75 for a Michael’s gift card for her.

 

 

 

 

 

“Michael’s? Going to Michael’s?” says Alex. “Hoody?” He wears his hoody to go out this time of year. Isn’t it smart that he says “hoody?”

 

 

 

“Alex, we went to Michael’s yesterday.”

 

 

 

“Yesterday?” he replies. “Going to Michael’s.” He comes out of his room in his hoody and black quilt jacket. He sticks his face an inch from mine. “Going to Michael’s!”

 

 

 

As Jill and I remember to do far too seldom, we try to turn this moment into another step in Alex’s learning to properly converse. “What do you want at Michael’s?” we put to him. “When are we going to Michael’s? What would you buy if you went to Michael’s?” Guess his response.

 

 

 

“Going to Michaels! Hat! Egg! Want an egg!”

 

 

 

His behavior in Michael’s is typical of his behavior in all box stores: He immediately scoots up and down all the aisles. I choose to believe he’s mapping the store in his head, and any subsequent visits to the same store will bear this out. He also needs little mapping to zero in on the counter in Michael’s that locks his interest: the little hard plastic animals.

 

 

 

 

 

As we have said before, Alex has lions, a lioness (missing), giraffes (one's under the couch), a gorilla (kitchen counter), a mallard, whales (bathroom), a tiger, two cows, and now countless others lined up beside our TV. Recent additions include a tabby cat (lost within an hour), and what appears to be a lime-green Tyrannosaurus Rex. Alex often sleeps with one of these hard plastic animals. Who would want to roll over onto one of these?

 

 

 

I guess if I had a favorite box store, it’d be Michael’s too, since I yearn to return to the time in my life that was festooned with plastic models of WWII dive bombers. Jill’s current favorite is Michael’s, it’s true, but she’s gone through similar fixations on Ikea, The Container Store, H&M, and Target (all of which still smolder, by the way). I take hope that even Alex, semi-verbal and silently mapping the aisles, has become an American with his own favorite store.

 

 

 

Roll On

 

 

 

Sitting at the dinnertable, I hear a strange noise from the bathroom and suddenly realize that Alex has been in there for almost the whole time it’s taken me to eat half my slice of salmon loaf. “Alex, what are you doing in there?”

 

 

 

He’s spinning spinning spinning the roll of toilet paper, until there are two piles on the floor, each up to his knees, and there’s barely a quarter inch of paper left on the roll. Then he tries to take the roll off the spool and, I imagine, wants to flush the entire thing down the toilet – an exercise which lately has been the most complete manner by which we have cleaned our bathroom floor before water starts dripping through our downstairs neighbors’ ceilings.

 

 

 

Alex whips off the roll faster than a cat on Youtube.

 

 

 

“Alex cutitout!”

 

 

 

He has this thing about toilet paper, usually after peeing. Perhaps it’s because he has had only female paras in his schools; it’s been my understanding since about the embarrassingly advanced age of 23 that ladies need to wipe after peeing. For a long time, Alex has wiped afterward, and I think lately he’s gotten it into his head that he needs a heap of toilet paper to do it.

 

 

 

Maybe he just likes to watch the water rise in the bowl. Maybe he feels this practice is linked to good hygiene (maybe in fact it is). Back he darts. “Alex, no!” Back he darts, spin spin spin. “Alex, no!” What did they say at his school? Don’t say “no,” say something positive. Put pressure on the arms at the joints, pressure on the head; that seems to calm him down. I press his elbow. I press the top of his head. “Alex, you don’t have to do this. You don’t have to use this much paper to wipe. You can use less paper to wipe.”

 

 

 

“Blow my nose?” he says. He unrolls a few inches, balls them up, and blows.

 

 

 

“You don’t have to use this much toilet paper to blow your nose, either.” A pile higher than his knees. If he doesn’t cut this out, I’ll give him pressure on the top of his head...

 

 

 

 “I have a question,” George Carlin once said. “When you take a piss, do you go like this?” Carlin wiggled in delight. Laugh laugh went the audience, mostly the men. “Me too,” Carlin said. “I think it goes back to the time when we didn’t hang on to it…”

 

 

 

“Can you make sure Alex understands that the shaking is fun?” Jill asks. Judging from his giggles when I introduce the subject after one tinkle, making Alex understand won’t be a challenge.

 

 

 

He passes through fixations: certain videos; certain plastic animals; lining up every toy barn in the house in the geometric center of our living room floor. Like so much in the bathroom, this too shall pass. Nevertheless, yet again we’re at that point where we might be sleeping some night – sweet and precious sleep – and Alex will hop out of bed and dart to the bathroom and clog the toilet with paper and flush, somehow and some way thinking it’s the most normal thing in the world to do.

 

 

 

It isn’t the toilet paper wastage I mind, by the way, as much as the mopping afterward. We have only a  Swiffer and not a real mop; recently we did buy two of those giant sponges you use for washing your car. We don’t own a car. We own a toilet, and Alex.