Tuesday, March 13, 2012
Wednesday, December 28, 2011
Monday, November 21, 2011
Last visit with Alan a breakthrough, or at least the first time I saw this behavior, that made a laugh run down my spine. Alan took a tortilla chip from the bowl delivered to the table. A big bowl heaped with thin, crispy chips, a small dish of guacamole, and as I daintily dipped my chip, Alan swooped in and took a chip, popped it in his mouth and ate it. From the bowl. It wasn’t his bowl, it was OUR bowl.
You’re saying no doubt – hunh? I know, it sounds pretty humdrum, but it was actually big. This wasn’t easy for Alan. He’s never done it, at least not in front of me. When Alan was living in the institution (33 years) he wasn’t allowed. Strict punishment for stealing food, and no communal bowls or plates of anything. Your own dish of mashed up meat and potatoes. Twenty minutes. ‘Let’s go everyone. Line up! Out the door! Back to your cottage!’ I’ve seen the photos of mealtime at Letchworth and while everyone looks cute in their uniforms, there are hundreds of these children in uniforms in the dining room.
Alan sat alone with me in the booth of the local chain restaurant – smiling from ear to ear. And he plucked a chip, and then, delightedly, another.
Friday, November 4, 2011
Wednesday, September 28, 2011
A long overdue visit with Alan. How did so much time get away from me? I guess I still have to overcome a resistance to paying him a visit. It’s not easy, and will never be. But once I’m there, things flow.
I arrive at about 2 and realize we don’t have much time, so I’ve decided we’ll go to Applebees for dessert. A digression: how to pick an eatery when your eating companion expresses himself in a low, deep chanting noise – that won’t quit -- and occasionally rubs his eyes frantically, with a mad intensity. Applebys gets five stars for tolerance. I wonder if their staff has received training. (Dunkin’ Donuts needs work. The girl at the cash register the other day – looked at Alan as though he were a ghost) The staff at the television studded room at Appleby’s? They let us sit wherever we want. Didn’t bat an eye. Didn’t patronize even slightly. I’m impressed, but just as cool as they were, didn’t say a thing. Iwas tempted to tip more than I would if I weren’t with Alan, but decided that that’s sending the wrong message. Just because he “chants,” no reason to pay extra. Things really pick up when our first course arrives – a hot fudge sundae with one scoop of vanilla and one of chocolate. I take a couple of spoonfuls, Alan downs the rest in lightning speed. We need something more, I think, and find the perfect second course in a plate of steamed broccoli (BTW, it’s really good. Lots of butter). Alan seems to agree and polishes his half of the plate off in no time flat.
Today was session # five or six with Melinda, our music therapist. I say “our,” because I think I get as much out of her sessions with Alan, as he does. We’re becoming friends, worrying about each others’ occupational ailments (she’s plagued with carpal tunnel and her heartfelt guitar playing is on hold and my back groans when I pick up a camera.) But today I was far more thrilled than Alan when M pulled out of her bag of tricks a cigar-box guitar -- just what it sounds like, an actual cigar box with a hole cut into the top and some kind of neck made out of wood, attached with something and the length of it strung with a few different widths of guitar string. Looks like something that might have come out of depression-era Appalachia. It's -- wonderful. Alan seems to like the feeling of brushing his fingers across the strings, whether or not he produces any sound. Creating a note you can hear. Does he know he can? It makes you wonder. As my mother once wrote, years ago, in a journal she never shared with me, “What goes on his head?” I love that she wrote that. It’s honest. Blunt. That was my mum, my no beat around the bush, get down and drop the niceties mother. She wrote it of course, with a tone of frustration. As her daughter, I have none of the same sense of despair, nor do I flagellate myself, as she did, about whether or how she’d caused “it, that is, Alan’s disabilities.” I just think -- with this feeling of sheer wonder, a wonder that will never unspool into clarity. There is no answer to the question, what goes on his mind. I’m not being totally honest here. I’ve had a share in the despair. But for the past five years or so, I’ve been a lot better at not going there, into the depths, and as his legal guardian, I focus on trying to make my brother’s life enjoyable, providing him with things that he doesn’t get elsewhere, espcially, I like to think, some of the pleasures that the average person has. Like sitting down at a restaurant and sinning over some delicious high empty calorie dessert. M asks Alan to strum the cigar box guitar, holding it out to him. He brushes the strings so lightly, we can’t hear a thing. He does it again, and again. It’s never occurred to me that it doesn’t really matter if it hums and twangs. It’s a great feeling, isn’t it – strumming.
Alan’s real aptitude is drumming, though. Steady, rhythmic beats on the small, flat drum, M has pulled out of her bag. It’s painted like one of those large, swirly lollipops. It’s small and light, like a tambourine. M holds a second drum, with the yin yang symbol imprinted across the surface, next to the lollipop. Without any prompting from M, Alan creates a dialogue between the lollipop drum and the yin yang drum. Pop, bat, pop, bat – decisively, bat, pop, for more than a minute, then as though his composition had reached completion, swirls the baton across the top of the lollipop – again, no sound, just (I’m imagining how he feels) sensing the contact between the fuzzy ball of the baton against the tight skin of the drum. He massages the drum the way a good jazz drummer brushes his trap set, but A is a silent drummer, passing the swish through the stick to his fingers.
It’ll be a lot of work, but next post I”ll put up a short video.