Monday, May 29, 2017

Steps Forward and Back

Steps Forward and Back

My younger son with autism, who is thirty-six, has been moved to a new house. He wanted to go. In the house he was in before, the rooms were so small that his things were spread out over two rooms. He also had to pay rent for two rooms. He likes to have several things going on at once, like TV, something happening on his computer, and jumping on his trampoline. The old arrangement made that impossible. There was also only one bathroom in the old house, which created some conflicts with his roommate. The true problem for him, was that there was no basement. That put the furnace, and the noise from the loud blower, where the sound could assault his senses. The agency overseeing the house had promised to get the blower fixed, but that turned out to be impossible. Sounds from heating systems and air conditioning systems have always been painful to him. We've provided him with a white noise generator and whatever else we could, to ameliorate the situation, but there's never been a truly satisfactory solution, except for having a system where he couldn't hear it. In the new house, the furnace is in the basement, and our son has a room big enough to accommodate all his things, with an en suite bathroom of his own. The house is also well built and in a very good neighborhood not far from where my husband and I live.

My husband and I take him out every Saturday for lunch at a place of his choice. For the past few months, that has been Wendy's. A couple of weeks ago, two things happened that were very encouraging. Normally for him, a door or a window must be fully open or fully closed. Anything else in unacceptable. He will try to close partially open doors anywhere he is, even doors he has no right to be near. On that day, my husband left the storm door of my son's new house ajar about six inches. Our son didn't run back to close it. That was a first. Then, the ice dispenser in the computerized drink machine at Wendy's wasn't working. In the past, that would have caused a meltdown. That day, it didn't. There was some grumbling, but our son drank his soda without ice. My husband and I thought he was making real progress.

That conclusion lasted about two days. Then the incident reports started coming in: barging into a bathroom occupied by a roommate, public masturbation, entering a roommate's room without permission to take cans of soda, and finally, biting another client at his vocational site. Biting has been a problem with him most of his life, but we hadn't had an incident in a long time. His initial excitement and joy at having new quarters had worn off, with disputes over thermostat settings, soda supplies running out, and several cable outages bringing down the internet, that is his real connection to the world. It had been a couple of steps forward and then a giant leap back.

I believe that there has always been progress over the years, but it has never been steady, and I've rarely known a week to go by without some sort of a challenge. That is still a lot better than his younger days, when a problem free day or even an hour, might have been cause for celebration. Most days I continue to have optimism, but decades of experience have counteracted any hopes for magical cures or great leaps forward. I'll take the little victories as they come and deal with the inevitable setbacks. That's life in his neighborhood of planet autism.

No comments:

Post a Comment