Tuesday, March 13, 2012

the glockenspiel, the belt and the laugh

I've been chronicling our venture into music, which has been pretty darn exciting. I've seen my brother -- who has autism, and some other cognitive disabilities, which make his comprehension limited and his verbal ability nil -- dive into music like a duck into a puddle. He's taken to it, in ways I couldn't have imagined. And because my imagination has been so impaired, I've been often following his lead, astonished at the depths of his attention, the ways he expresses his enjoyment of music and his love, out and out, profound love of music. Until now, I was ignorant of his passion. And for that I'm apologizing here, to Alan. Because I don't know how else to express my regret for not having recognized this, and given him this very simple, necessary gift before now.

Thinking of how he seems to be mezmerised by old-timey music on the radio. How he brushes the keys of a glockenspiel ( a small xylophone) with a drum stick -- rapidly, freely. Lightly taps the top of a small drum, the kind they play in Ireland, Melinda, his music teacher, told him today. Taps lightly in a steady, fast rhythm.

He teaches Melinda and me a lot. That a true musciian takes breaks when he feels like it. He may just not always want to tap a drum when he's asked to do so, and well, he won't. If he's overcome with the desire to simply look into Melinda's face -- as though she's brought him water while he was parched, as though she's the most beautiful creature he's ever seen -- that's what he'll do. We know that when he's taking a break like this, we can't do anything. We can only look back at him.

Alan has a long, narrow head, a large, well defined nose (someone once said, that if he had Alan's nose, he really could have gone places) and very full lips. His looks have been compared -- not unrealistically -- to Jean Paul Belmondo's. But what makes you look back at him when he's on break looking at you is the steadiness and calm of his light blue eyes. They're the eyes of a practiced yogi.

Today, after music I took Alan to a small park in the neighborhood. It was a very warm spring day -- almost the warmest March 13th on record, the radio announcer said -- and it would have been a sin to go to Starbucks. I happened to have two bananas with me and as this is Alan's favorite food, there was absolutely no reason to go anywhere but to the park. As we got out of the car, I noticed Alan was holding his pants up. They (the people in his group home who care for him) had forgotten to put a belt on him and his pants had he not been holding them up would have -- literally - fallen to his knees. I felt a moment of annoyance. How could the staff have forgotten something so basic? They don't dress him with any care! His pants in fact are way too long, now that we're on the subject. But Alan wasn't annoyed. Quite the opposite! When we reached this little patch of wood chips, surrounded by green lawn, Alan looked at me and started to laugh. A laugh rolled out of him, loud, bold. His eyes took hold of mine, and the rolling laugh subsided into a long, delighted chuckle.

I don't recall ever having heard Alan laugh before.

Wednesday, December 28, 2011

Besse Smith

Two weeks ago or so I drove the hour and a half to meet up with Alan, take him out for a snack, and then -- I presumed -- settle into a session of music making with Melinda.

But. When you're with someone like Alan, who lives "in his own world" -- a case where the cliche really fits -- you have to flexible and attuned. I think spending an hour with Alan is a lot like spending time with a very young person, whose non-verbal world, brimming with discovery, and indecipherable, keeps you guessing, and demands that you play the part of accompanist and follower.

After lunch -- a new place, run by Orthodox Jews, who are btw, usually extraordinarily tolerant of people with disabilities, but in this case, too disorganized to be tolerant or otherwise; seems they'd just opened their little cafeteria hours earlier -- I decided to drive slowly back to the house. We had some time to kill, and sitting around in the house living room is a little depressing. It's dark and unnaturally quiet, except for the buzz of the mid-afternoonn TV soaps. So, we tooled the back roads, going wherever...Someone who sounded a lot like Besse Smith was singing on the radio. Alan became as silent as I'd ever heard him, his eyebrows arched sky high, the plaintive wailing of Smith pinning him to his seat. He grew almost motionless, fixated, I believe, on her music, the likes of which I'm pretty sure he'd never heard.

Melinda was waiting for us by the time we arrived back at the house (a group home) and when we found our positions, this time around the dining room table, Alan was in no mood to drum, plink or strum. Melinda offered him everything -- the guitar, the glockenspiel, and a beautiful string of tiny chimes, that with only a light touch bursts into a sweep of tinkly sounds. She then took out of her bag .. her cymbals! Alan usually plays those cymbals hard, man. But on this afternoon, Alan flailed the baton in the direction of the drum, and then head promptly sunk into his chest, his eyes closed, and within a minute, he was sound asleep, I assumed, exhausted by the effort of listening to Besse.

On my drive home, as I thought about all this, it hit me. Listening to music, while slowly driving around -- was equally music therapy. Why does music therapy have to mean -- playing something? Can't it be just about listening, and loving it? Alan listened intensely. He listened with all his being, with his body, his eyebrows, his mind, his every cell. He had fallen asleep through exhaustion!

When I told Melinda my theory, she sounded only slightly convinced. I suggested that our next appointment, be a driving/listening session, with lunch at Applebee's thrown in. Melinda, being the adventurous soul she is, accepted in a heartbeat.

Stay tuned.

Monday, November 21, 2011

Alan and the plate of chips

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.

Wednesday, September 28, 2011

Post #1

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.