Friday, August 3, 2012

The most dramatic movement I've ever witnessed

Posted By on 08.03.12 at 12:54 PM

Because I cant think of an appropriate image for this story, enjoy this still of Cyd Charisse in Its Always Fair Weather.
  • Because I can't think of an appropriate image for this story, enjoy this still of Cyd Charisse in It's Always Fair Weather.
For most of the last year I spent working at a day center for developmentally disabled adults on the northwest side, I provided one-on-one supervision for a man who was both severely retarded and autistic. Daryl (as I'll call him here) required direct supervision because, as I learned when I first joined the staff, he was a "runner." Whenever he was overwhelmed by the goings-on of the center—which was often—Daryl would run out of whatever room he was in. Usually, he would find an empty classroom, turn off the lights, and stick his fingers in his ears to block out as much sound as he could. But sometimes he would try to escape the center entirely. For this reason, the front door had been locked from the outside for decades (Daryl had been a client of the center for about 30 years when I met him), and his mother almost always kept him home when the center took the clients on a field trip. He could run pretty fast when he wanted to, and the center could have landed in all sorts of trouble if he were to vanish.

Working with Daryl one-on-one required that I approach experience on his terms—autism has a way of transforming everything it touches—and they were fascinating terms indeed. Like many people deeply affected by autism, Daryl had echolalia. This meant he would often repeat the last word he heard or else vocalize nonsense sounds for the palliative effect. If no one engaged him directly, he was perfectly content to sit in a corner, playing with his fingers and enjoying the sound of his gibberish. Some sounds had developed, over the course of his life, into private mantras, and I became familiar with them all. The most common went something like: "Par-ee-ah shee-ah poor . . . pie . . . shocko pie, shocko pie . . . koat pie . . ."

But when you appealed to him, Daryl made for wonderful company. He enjoyed helping out with daily chores, so we spent a lot of time watering plants, taking out the garbage, and using the center's paper shredder to destroy documents that were more than seven years old, per state policy. (He couldn't get enough of the paper shredder, in fact. Every time he used it—deliberately, shredding only one sheet of paper at a time—a Zen-like calm would come over him, so fascinating did the machine seem to him. It operated just out of reach of his comprehension, though he knew that it required his presence to function; the mystery could obsess him for literally hours.) We also listened to a lot of jazz and R&B: I found that music relaxed him like nothing else. When I put on a CD he liked, he could listen to the whole thing without pacing our classroom—and when he really liked the music, he could go a full hour without putting his fingers in his ears.

I can't emphasize enough how much time Daryl spent with his fingers in his ears. It was as natural to him as breathing, as so many sounds proved too much for him. He'd often lick his fingers before sticking them in ("Do you think it's for better suction?" one of my coworkers pondered once); and try as I did, I could never wean him from the habit. Working with him probably strengthened my immune system tenfold. He liked to shake my hand whenever he could: like a lot of autistic people, he obsessed over particular—and to most observers, exceedingly odd—physical sensations. He routinely spun around in circles and shook his hands over his head. And when he felt affectionate, instead of hugging (which violated his sense of security and made him freak out), he would grab your hands by the wrists, place them on his stomach, and touch his forehead to yours. "Ti'ko ti'ko ti'ko," he'd often say as he did it.

I came to receive this form of affection a few times a day. Indeed, I came to know Daryl more intimately than I've known almost anyone. After a few months of working with him, I became fluent in his eccentricities to the point where I didn't even find them strange. I just accommodated them so that we could get on with our days. There were always challenges, of course, such as constantly reminding him to use a napkin and silverware when he ate. And then there was his hydrophobia, which could derail any activity without warning.

I don't know when it started, but at some point Daryl could barely stand to look at water. He was OK with washing his hands and with filling up a sink to wash dishes, but anything else would frighten him as badly as loud noise. He had refused to take showers, I learned, so his mother had to scrub him down with a washcloth. He also refused to sit on the toilet; and after several years of obstinacy, he had forced his bowels to stop moving. Waste stood still in his intestines until his stomach bloated and hardened. Most of the time, he walked around with a painful, 50-pound mass in the middle of his person, which he'd massage every time he finished eating.

His mother took him to the hospital once or twice a year to get the thing drained, but this was becoming impractical. For one thing, Daryl had come to understand what was up, and he started running away whenever the doctors admitted him. And how good could it be for someone's digestive system, anyway, to withhold impacted feces for several months at a time? Eventually, a sympathetic doctor prescribed Daryl a daily pill that his mother could mix in with his food. Given the nature of the problem, the pill was less comparable to a high-grade laxative than to a low-level explosive.

I was warned that, once the medicine started working, its effects would not be pretty. Was that ever an understatement.

It all started amusingly enough. For a few days Daryl released the loudest farts I've ever heard—the noise was a bit like hearing a factory explosion from a few miles away. The farts were so loud, in fact, that they woke up the profoundly retarded clients (who had IQs of 25 or below and essentially functioned like large infants) during their naps, and they jostled into consciousness sobbing and confused. The higher-functioning clients on the other side of the building cracked up. This was free entertainment for them.

The situation intensified on a Thursday afternoon. Daryl had broken out into a sweat and his eyes were bulging like a frog's. He got up from where he was sitting and stood motionless (which was rare for him) as some unknown sensation overtook him. I soon noticed that his socks were turning browner by the second, and the stains were working their way up the legs of his pants.

I rushed him into the bathroom and sent word not to let anyone else in. I told Daryl to take off his shoes and socks, then his pants, then eventually everything else, as no article of clothing went untouched by the release. I instructed him to pat himself down with some baby wipes, but it was clear that this was a useless endeavor. The stream wasn't easing up: after ten minutes, it looked like he was wearing cut-off shorts made of chocolate syrup. All I could do, really, was stand Daryl over a drain and pour a bucket of water over him every now and then.

Poor guy. Getting doused with water only made the painful situation worse. I'd never seen anyone possessed by such terror, and I'm sad to say I wasn't doing much to put him at ease. For the first time in our relationship, I even yelled at him. "For the love of God, Daryl, DO NOT PUT YOUR FINGERS IN YOUR MOUTH!" It was a trying time: over one dramatic hour, he lost about 20 pounds of liquefied shit, and I lost his trust. It took weeks to reestablish our rapport.

This story has a happy ending, thankfully. After that first week, Daryl never again reacted so drastically to his medication; and his stomach, as we came to say at the day center, stayed down. When I last saw him about a year ago, he had been skinny for a full three years. His supervisor at the group home where he was now living (his mother had been diagnosed with Alzheimer's, and he had to move out of her care the year before; but that's another dramatic movement, requiring another article) had even forced him to sit on the toilet. He seemed to be in good spirits, more comfortable in his own skin. "How are you feeling?" I asked him, as we listened to some Duke Ellington and worked on a jigsaw puzzle. "Ti'ko ti'ko ti'ko," he said, putting his forehead to mine.

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