Thursday, January 01, 2009

With Apologies to Mrs. H

I lay next to Andy, waiting for him to sleep. If I move too soon, we must start over from scratch, so I try to stay still. From the next room wafts the whispers, squeaks, squeals, and giggles of another sleepless boy. Most of it is soundified, incomprehensible gibberish, a steady stream of motor-sound and oral stim. Occasionally I catch a few of what were once words, or the current favorite mantra, which has clung to some thread of meaning, and which Joey finds hilariously funny. Over and over, chanting and giggling, Joey tries to talk himself to sleep.

Christmas break is hard. There is almost no chance of establishing a routine, a pattern from day to day to day to let Joey get his bearings and steer through the jumble of sound, glitter, and cold. I think the lack of daylight affects him, too. We do best with bedtime in spring and fall. In summer, the days are too long; in winter, they are too short. Even the simplest of structure eludes us. Getting up in the morning, he never knows when Dad will have the day off, even if it is mid-week. People may visit the house, which is topsy-turvy and filled with unusual, glittery items that only come out for about a month, sometimes just a week. The weather doesn't help, either; this year, it was 70 degrees one day, 40 degrees the next.

At first, he retreated to his computer, a safe haven of games that always act the same, once you figure out the rules of the game. But with so much to do and see and what-have-you, often there are stretches of unscheduled hours spent in cars, other homes, other places seeing other people and doing other things, all of which are unexpected, no matter how much warning I give him- and sometimes I have little warning myself. Left to self-regulate, sound becomes key. Clicking returns. Mantras- appropriate and otherwise- roar to life with a vengeance. It's the Witching Hour, all day, every day... and this year, for sixteen days (winter break is usually 13-14 days).

I listen to the stream of whispers and giggles. At least he's happy. Or finds it funny. He did fine through Christmas day, then everything began to deteriorate. Mrs. H sent me home a happy, huggy, smiling boy, and I'm going to send her back a echolallic mess.

Happy 2009

Nobody else is stronger than I am
Yesterday I moved a mountain
I bet I could be your hero
I am a mighty little man.

-Steve Burns, Mighty Little Man

To all our mighty men and women, and their fabulous families: We love you. Happy New Year. Keep up the amazing work.

Wednesday, December 31, 2008

The funniest thing of all time.

A frequent perception of autistic kids is that they lack a sense of humor. Joey is not that way, though he has trouble with jokes; understanding them and telling them so that they're funny to others is extremely challenging for him.

So when I arrived back at the homestead after the day's work, I was greeted with, 'Does a snowman zerzer wiener? HAHAHAHAHAHAHAHA', accompanied by several Andy cackles.

Wha? Can he possibly have said what I thought I heard him say? Oh yes. 'Daddy, hahahaha, does a snowman, ka-ha-ha, have a WIEEEEENERR?' I lost it. Bad daddy, I know.  Apparently this had been a frequent refrain today on the less-than-stressfree outing to the Christmas store in Ashland. My bad. 

Oh, the hilarity. But now, I had to put this particular horse back in the barn. Because things that Joey finds funny can get said at any time, in any situation, in front of any one. I like it that he's developing a sense of humor, even if it is potty humor. It IS age-appropriate, after all. It's the lack of contextual use that is the problem. If he wants to talk like this around his peers and his brother (and me), I'm all about that. It's a vital social skill that will help him make friends and fit in when/if that's what he wants.

But what about if he says it to a girl in his class? Or his grandmother? (which of course he has done!) Or a teacher? People are hyper-sensitive about this kind of thing as it is, and he just doesn't need any more social hurdles to climb.

But no, Joey. Most snowmen definitely do not have wieners. Now we get to ask him why he thinks that is. Good times.

Tuesday, December 30, 2008

Foot Stimming

You can tell its a holiday around here- the boys are foot stimming a lot more. This is what I call it when they step and stand on things on purpose, or try to get a lot of input through their feet (like jumping a lot). The trampoline is rolled away for the holiday, but it may be time to pull it back out...

Andy likes the lego tub top best. He puts it in front of the TV, then rocks on the raised rim while watching his Zoboomafoo.

Joey likes jumping on things and into the shallow pool at the gym.

They've both been standing on blankie and even skiffing about with blankie under their feet. Blankie is knit, so the texture provides input. They've also been trying to bounce on the sofa a lot.

Shoes and socks seem to be either completely to be banned, or worn constantly. Usually banned.

The foot input also means Andy and Joey both have more trouble sitting without footstools to put their feet on. That little bit of elevation means you lean onto your feet more, thus more input. At lunch yesterday, there was a lot of dancing around the chairs.

My current plan is to track down some bubble wrap and put it on my floor to test my theory, If I find two little guys attracted to it like flies to honey, then I'll know we need to invest in some more. And get the trampoline back out.

Monday, December 29, 2008

What I have learned this Christmas (so far)

1. Don't bother wrapping Joey's presents. The unwrapping process exhausts him, and the overload of excitement means it will take all day to unwrap his presents.
2. Once Joey has the toy he wants, he's done. The rest of the presents can sit there until next Christmas.
3. Boys. Trains. Life is good.
4. Andy, a ball, Joey sitting on the ball, and a pair of loppers left on the porch is not going to turn out well. (No one got hurt, but Joey was heartbroken about the ball.)
5. You can explain socially significant things to Andy using words.
6. Lightsticks make great nightlights.
7. Children really will fall asleep during a story if the story is long enough. And is about girls, and they are boys.
8. In the time it takes me to put Andy's coat on him, Joey can be out the office door, out the building, to the van, and buckling himself into his seat.
9. If you need a toy to distract a child, go for the dancing, singing turkey. Seriously.
10. Even if the tinsel is only on the tree at someone else's house, not yours, and you go to visit that someone, tinsel appears at your house.
11. Tinsel does indeed go undigested through the digestive system of a cat.

You can take a little tour of my Christmas decorations here.

Sunday, December 28, 2008

Need a notebook

Over the past couple of days, I thought of at least half a dozen things to blog about.

Now I have a minute and the computer, I can't remember any of them.

I suck.