Autism

Breaking the Habit

by Kristina Chew

category: Communication

Published July 09, 2009 @ 12:45AM PT

Stiff as a board.

When Charlie was much younger and didn't want to go wherever we were going, he'd arch his back so hard that---like that proverbial board---there was no way we could debend him. Often Jim and I found ourselves each holding one of his hands as he, in essence, swung between us (the back-arching also seemed to involve curling up his feet). I'll admit that we felt pretty bad to be dragging (carrying) our little boy; we had to marvel at the strength of his arms.

In those early days of parenting Charlie, I guess you could say we were forever pulling with force rather than with control. We were both pretty new to parenting when Charlie was diagnosed with autism in July of 1999 (is that why I'm remember those days, because it's now been almost ten years?). (I just remembered how we spent that hot Fourth of July in Minnesota---we drove out to the suburbs west of Minneapolis and Charlie made a memorable dash into Lake Excelsior and of course I hadn't brought any extra clothes; he conked out on the way home then was awake far into the hot night.)

As each day passed, Charlie seemed more and more insistent on doing things a certain way and one way only. Notably, when walking down the path from the front steps of our duplex to the sidewalk, he would, could, only go right. Attempts to lead, pull, and carry him to go left resulted in screams of an ear-curdling sort (and, it just occurred to me, of a sort that he himself would not tolerate these days), more back-arching, and the like. We gradually learned one reason for Charlie's insistence on right not left: On the street to the right was a low stone wall whose intricate patterning Charlie would have spent hours pacing back and forth before.

We've since learned that Charlie is certainly drawn to such patterns and sometimes creates his own as a sort of communication. Back then in the spring and summer of 1999, we felt simply helpless and stuck with Charlie in a box with rigid sides and no openings. Sometimes we felt like we'd never be able to walk beyond that old stone wall. And, as the days passed, even standing in front of the stone wall---what Charlie seemed to be indicating he wanted to do---made him no more happy or at ease then turning left down the path; he was agitated, weepy, unhappy.

Over the years, we learned how to help Charlie move through and beyond these rituals, even while (1) seeing how we ourselves are in need of some of our own routines and rituals (morning coffee.....) and (2) realizing that his need for order and routine is as much a strength. Indeed, as parents of a child on the spectrum, we frequently find ourselves trying to balance between the same old same old and gently pulling Charlie forward.

I've been thinking a lot about these things while Charlie was home full-time with Jim and me, on a break between school and Extended School Year (ESY). He's very reliant on his day being meted out half (plus) in school and half at home and so, lest the past two weeks feel like a chaos of uncertainty, I made up picture schedules galore (bless the powers of word processing, my iPhone camera, and the internet---where once I poured over magazines, catalogues, and picture books to find photos for Charlie's flashcards and schedules, now good old Google and that camera make it possible to find a photo of pretty much anything). I made weekly schedules, I made daily schedules. We did social stories. We made sure Charlie had his favorite comfort objects around (yes, sometimes I think the whole point of going to Greece was to discover these---Charlie's favorite are round and a muted olive jade green).

There were still some figurative "fireworks" and especially in the second week, as the newness of Home All The Time! wore off. That second week, Charlie's need for extreme order---the rigidity---increased and Jim found his and Charlie's bike rides becoming increasingly anxiety-ridden, with Charlie insistent on them going a certain way and over a certain bridge with no shoulder and regular traffic, and peddling out too far in the street, with the result that cars honked and drivers made "comments" (and Jim got really exasperated). Barking dogs and motorcycles did not help (though I guess it says something that motorists and motorcyclists alike don't think that Charlie isn't just another 12-year-old boy on his bike, and not a child in need of some extra accommodations).

And Charlie's own rage for order seemed to be too much to him at times. Twice last week he got off his bike on the busy bridge and Jim had to think fast on his feet, and wheels; a couple times I rushed to grab my bag and drove the black car, now a true "support vehicle," to wherever Jim and Charlie were. (I never actually found myself at the scene of the anxiety, which tended to peak and subside in a few minutes, and then I'd see the two of them home, sweaty and thirsty.) And I thought about how, you know where you're eating something really good like, an ice cream sundae or, I don't know, Peking duck (well, not me, because I'm a longtime vegetarian; I really am digressing) or maybe a substance more potent, and you keep having more, and wanting to have more, and thinking that having more has got to be better, it tastes so good, and then you're beyond the satiation point and feel.......nauseous.

I'm using this food analogy because Charlie's been funny about food the past couple of weeks. He's called routinely as ever for "burgers" and diners and, more often than not, gotten upset after we've had some very pleasant dinners. Sure, the food could not be agreeing with him, but we also have noticed that he's often not even eaten the better part of his burger and even left some French fries.

Charlie's language is, as I've regularly noted, very limited. We tend not only to be very attuned to whatever words he says, but to put a great deal of store into whatever few words he says. And sometimes, I've been suspecting that Charlie gets caught up in his own words, and that the few words that he can remember to say on a regular basis often don't fully catch the essence, the subtleties, that he's trying to articulate. This is most apparent in his use of "no," which really often seems to mean several other things than "no" from "maybe" to "not now" to "I have to think about it some more" to "get back to me later."

Sunday, Charlie's last before returning to the (slightly different than the regular school year) routines of ESY, was a transition day. Meaning that, our household was on edge. Meaning that, everyone (Charlie too) wanted to keep things "peaceful easy-feeling" and while I can't say the whole day was 100% like that (I was called to do the "support vehicle" thing in the midst of Jim and Charlie's bike ride; ended up having a nice bagel lunch with the boys at our favorite place), the day ended very nicely with Charlie back in his bed and me scrambling to fill his lunchbox. (But only with snacks, as ESY is half a day.) The clincher to the peaceful easy-feelingness was a sudden burst of spontaneous activity. Charlie kept asking for a "diner," but---mindful of the two previous diner/anxiety combos, we noted we'd just done that and could go later in the week. We got a pizza which Charlie said no too and then Jim, out of the blue, wanted to go to Target to get a basketball. So off we went, pizza in the back of the black car......

And it just so happened that there's a McDonalds at the entrance to one side of Target and Charlie said no and no and no and then yes.....

And no and no and no to shooting baskets and then soon as we pulled up to a park, he was out the door and running back and forth on the court while Jim took some shots and I finished the pizza......

It was all very spontaneous. And it was fun, and delicious (I can't vouch for the McDonalds, but this was an excellent Jersey pizza), and quite out of the (boring old) routine.

There were some "early morning fireworks" on Monday, Charlie's first day at ESY, and then Charlie was calmly waiting on the grass for the bus. Three pleasant days have followed, each with some interesting moments (my total euphemism for what some might rather call "challenging behaviors"), but nothing ultra-challenging, and lots of bike rides.

Something I'd like to make routine.