22 May 2011

Time Was

Once upon a time, I got a job. It was a hell of a job.

My high school had mandatory requirements for volunteer work, increasing each year. They were pretty minimal - I think senior year was like 60 hours or something like that, something you could do in a couple of weekends - but they were still annoying. I think every single boy at the school independently came up with the snide observation that "mandatory volunteering" was an oxymoron.

I did several things to meet this requirement over the years. I fed the homeless, I taught Sunday school, and the like. But when I look back, I mostly remember working with children with developmental disabilities. Not for what it was, but for what it would become later.

One of the big organizations for this kind of work was headquartered right near my house, and so when I was growing up I was always aware of it. They had group homes around the area, and ran a day-care, and had a sort of small factory that did piece-work like assembling toys. I didn't know anything specific, but I did know it existed. I frequently had to go to the community center that held both it and the pool my brother practiced at; there I would wait for hours, gamboling around the concrete exterior that stank of chlorine, and I would see plaques and signs about the disabilities organization. Sometimes I would even see retarded people there, and they were subjects of much furtive staring and speculation. I had never met any retarded people, and they kind of freaked me out. Usually overweight, slack faces, thick glasses... they were very strange to me at the time.

But when the time came for volunteer work, my mother suggested that place. It was very convenient and might be interesting. I was kind of afraid, to tell the truth, but my shame of that drove me straight there.

As it happens, it wasn't a big deal. They put me in with the kindergarten, which had a mix of kids with disabilities and typical kids, and there wasn't a whole lot of difference between them except that some of the kids were better at putting away their own toys. There weren't any kids with profound retardation (the most extreme kind), since at that age they tended to require too much care. I showed up and played with the kids and fed them snacks for a couple of hours, and after their parents had picked them all up, I went home. No pressure, no difficulty. It was a little strange dealing with the some of the kids, who seemed to me to be unaware of anything or were indiscriminately angry or inappropriately happy. But they were still kids, and they were still fun for those couple of hours. It wasn't a big part of my life, and when my hours were done, so was I.

I went on to other things. Those things were sometimes normal and sometimes miserable: I graduated from high school. I went off to college. I failed, with a whimper and not a bang. I wept. I came back home. I was adrift.

I worked at a supermarket, Publix, for a while. I had worked as a bagger there before, so it was familiar. This time I worked at the deli counter, but after a few months I cut off a chunk of my ring finger on a deli slicer. I had been slicing bologna, and the injury was due pretty much entirely to my haste. I wasn't very attached to the job, and decided that it was a sign to leave.

I needed a job.

Naturally, I again sought out the familiar. I went back to the place I remembered playing with kids and enjoying it. I went back to work with people with disabilities, answering an advertisement in the paper with a very bare résumé in my hand.

My interviewers when I applied were a pair of pleasant-enough men: the manager of one of their group homes and the head of Human Resources. I can only imagine what they must have thought.

I was twenty years old, and looked younger. I was gawky and stooped, with my hair cropped close and my clothes ill-fitting. Since I had no relevant experience - little experience of any kind! - probably the only thing going for me was my clean-cut nature and a giddy smile. I must have seemed like a goofy, stick-figure child.

I was applying to be a Residential Training Instructor. It's a broad position that includes general housekeeping duties (cooking, cleaning, etc.) as well as some variable amount of vocational/education assistance. Depending on the sort of people at the home to which you went, you might be helping teach the alphabet or do physical therapy... or you might just watch a whole lot of television. It can be very demanding or very easy.

The particular home to which I was (unknowingly) applying, though, was an unusual one. It was only for dually-diagnosed individuals with both mental retardation and autism, and it was especially for people considered to be of "high-intensity." Brian, my prospective boss, had nurtured the idea into being with help from his supervisor, and the high-intensity group home had only been in action for a few months with six residents whose behavior was, well, "notable." It was a very difficult job, and as I interviewed, Brian must have been doubting I could handle it.

I was fortunate, though. The organization paid employees very little - only a dollar more than minimum wage, even though it could be a very hard position. There just wasn't the funding for anything more than the bare minimum pay. This low pay combined with the difficult work meant that there was very high turnover, since people left as soon as they could. The organization couldn't afford to be choosy. I got the job.

A few days later, I drove on up to the house. It wasn't really what I expected. I thought it would be some sort of clinic or institution, but instead it was a very pretty little suburban home nestled in to some scrub woods, and backed by a large yard and a thin creek. I wasn't even sure if I had the right place until I saw the huge passenger van parked outside, its grey panels dented. But even with that, it looked just way too... well, nice.

I parked and went to the front door. Knocked. One of the staff there opened the door and let me in. She was a skinny girl about my own age, another result of a shortage of applicants. She showed me around the house. Five bedrooms (one with two beds), a ragged old computer in a corner surrounded by two big aquariums, a living room with couches and chairs, a "sensory room" with games and a big inflatable blob, spacious kitchen, and wide porch with a swing.

And people.

I don't think I should talk too much about them. I promised confidentiality when I signed on to care for them, and they deserve to have that honored. So no names and few details. Suffice to say that it was a loud and rough house.

That first day, I sat gingerly on the couch, uneasy and unsure of what I was supposed to be doing. The other staffer had dinner going, and I wasn't trained to do much of anything else. I paged through some of the thick binders with diagnoses and histories, but it was just too much to absorb right then. Mostly I just tried not to feel weird. What was this going to be like? What was I supposed to do?

Maybe five minutes after I sat down (perched right on the edge of the cushion), there was a loud inarticulate cry from the other room. It was bizarre and entirely unlike anything else I had heard (I've still never heard its like). It was a full-throated whoop, expressing no information. It didn't sound scared, but it was enormously loud and alarming.


I leapt to my feet and raced into the other room. Was there a fight? Was there something wrong? Why wasn't the other staffer coming to help? Did I do something

It was just one of the residents, smiling and standing there placidly. I halted jerkily in my terrified sprint, looking around. Nobody else was there. Nothing was on fire. What the hell?

He looked at me and then off to the side, still smiling. Then he looked back at me. "Hoooooyeeeeeeaaaw!"

"What's going on?" I asked the other staffer. "Is he okay?"

She blinked at me for a moment before she understood. "Oh, ha! Yeah, he's fine. He does that all day. Every day."

As it would turn out, this was true. He did it all the time. About every minute or so, every moment he was awake and reasonably happy, he would let out a deafening whoop. Autistic people often take pleasure in pure sensation for its own sake, and this was one of his ways to do that. It was strange and new and wonderful. It also got a little old, I have to admit. We'd have to ask him to go outside in the weird way you ask a profoundly retarded adult to do something - half-suggestion, half-request, to respect their independence while also getting them to do it - but even in the backyard, the yelp would echo through the house every other minute. It drove the neighbors absolutely nuts. And he was only one of six.

The others were all different, but all equally "high-intensity." Violent or manipulative or completely unresponsive, and usually transferred from a different home where they had been having severe trouble. There was a "time-out" room in the house, a bare tiled room with a magnetically-locking door and a full impact-proof mirror - it was used when there was serious violence going on. It was used several times a week, or during the bad times as often as eight or nine times in a day.

It wasn't all bad. We'd watch movies together or clean up together, or play games or go outside, or any one of a dozen other things. It was seldom boring, and often different.

It wasn't until later I learned what I was doing, and learned to be comfortable. I got training in how to deal with someone who was angry and attacking, and exactly the way autism was diagnosed and works. And I learned more basic things, too: how to bathe someone, how to comfort someone.

I would go to other houses and meet dozens more people, ranging from near-typical to profoundly retarded. I would do puzzles with someone, over and over tumbling out the bright wooden pieces. I would spend hours pinning someone smeared with their own filth to the ground, trying to prevent them from biting me again. I would play tag in the backyard, racing around until I was gasping and they were still poking me in the ribs.

I learned how to lead and how to follow. And I like to think I found some compassion and some real courage in that job.

I'm not sure how much I know about life these days, or what I can do. But most things that I know about life and much of who I am, came from that job.

1 comment:

  1. :) Working for that company has also provided me with the opportunity to meet some of my bestest friends in the world.