Friday, November 26, 2010

Alan's Birthday Party

This past Sunday we celebrated Alan's birthday (as you may know if you read the post from the previous week) And an interesting time was had by all.

Just the facts ma'am. Al and I picked Alan up at his group home in Rockland County 11 ish Sunday morning. It had been a while, I'm chagrined to say, since I'd visited my brother, and a very long time since I"d come by on a Sunday morning. For whatever reason, I didn't recognize a single staff member. I was guessing turnover, though. Turnover is high at every level. I'm pretty sure that the hourly wage barely tops the minimum. The service-providing organizations have long lobbied the state for pay increases, and I've signed many a letter. Now that the State is cutting back ruthlessly on every front, there's no hope that working at a group home for the developmentally disabled will provide a living wage. Even Alan's service coordinator, who oversees more than 300 cases, works a second job. So, the folks on duty didn't know who I was, and opened the door a bit reluctantly.

This was going to be a short one and I'm off on a tirade about the pay scale for direct care staff. I will master the blogger's haiku one of these days. But not tonight...We asked that Alan be dressed for the cool weather we were about to take him out into. Another peeve. How they dress my brother. They dress him as though he were a child, or an invalid. On this point, I'm all in favor of treating him like the 60 year old man that he had just become! He knows how to put his arms in the coat sleeves, and if given instructions, can probably zip himself up. Never happens. They coddle him, bundling him into his winter jacket, taking one arm and inserting it into the sleeve, then the other, then zipping up the front, straightening the coat for five minutes, and finally pulling his wool cap over his ears. I can't bear it.

But I'm his sister, not his parent, and I reminded myself of that when I brought him to the car (not by the hand!) And once in, as promised, I got the CD player powered up. We had time only for Thelonoius, a beautiful old album that I've listened to, without complaint, on and off for months. No, for over a year now. I can't take it out of the player. Alan, who doesn't speak, or rather only speaks in his own private language of sounds, grunts, squeals, and occasionally alarming shouts and bellows grew silent. He frowned a bit, and sucked his cheeks in, as Sweet and Lovely gave way to Crepescule with Nellie. What was he concentrating on, I wondered and I think I began to frown a bit, wondering.

We reached our destination, The Hudson House, a wonderful eatery on Main Street in Nyack (Henry Hudson, no kidding, is the proprietor), and an extra two thumbs up because they didn't bat an eye at the awkward man whose head angles off in a direction opposite to his body and his feet at another angle still, pulling me into the dining room with a very firm grasp. They seated us at a corner table that was very nicely tucked away.

And then, Alan's noises grew in volume and increased in frequency and I thought sure that heads would start to turn. And it crossed my mind that we should eat and run, or maybe just run. But they didn't turn -- the heads. Alan's service coordinator was there, completely cool, and my cousin and his wife arrived and sat down and took stock each in their own way, but very quietly. Cousin Stanley I think was working to ignore the noisy man in our midst, chatting Al up about work. Donna, Stan's wife, smiled quietly and started to ask questions.

Donna, who has worked over the years with kids with all kinds of developmental and emotional problems was thinking that there had to be a solution. While I was getting myself into a bit of a dither, she was thinking hard. It seemed to all click for her when I mentioned what a nice drive we'd had coming over, listening to Monk on the CD player and how calm Alan seemed. She said, as though she'd had a week to think it over, that she would play the recorder for him. And she was apologetic about not having an alto recorder, but only a soprano, and before I could question her on any of it, she's pulls her coat on and is out the door. Five minutes later, D is sitting across the table, playing some delightful Renaissance melody (Donna is part of an amateur renaissance musical group)

Alan began to sway with a huge motion in time to this incredibly sweet music and most gratifyingly, his noises becamse single deep notes punctuating the concert, few and far between.

I realize that after writing last week about Wolfgang Fasser, this saintly music therapist in Italy, who was profiled lovingly in the film, In the Garden of Sounds, that life did imitate life. Donna had picked up the idea that music can reach and communicate with people who don't have speech, people like Alan. We had (by we, my family and even to some extent his current caregivers) written my brother off. 'You can't communicate with him' was and really still is the message. But D showed the same wisdom as Wolfgang Fasser. Donna was heroic at the Hudson House that Sunday morning, for which I feel so much ----- awe. And gratitude.

We all joked a bit. Was the dining room delighted with the concert? It was both old and very avant garde, I mused, not really caring too much what they thought, and watching as Alan, swaying, sounding off occasionally polished off a plate of chicken salad in record time, tossing a good portion down his shirt. And the Tellemann played on.

(tanleyS inormed me that one of the people dining that morning came over to our table to thank us for the music)

p.s. If you'd like to learn more about Alan's story, you can check out the website about the film I made about him, and us.

Friday, November 19, 2010


When my father was dying, and in a state of semi - cogency, that is to say, he spoke in surreal sentences that had very little sense of who he was in the here and now, but which had everything to do with the truth, said, when I asked about Alan, "Alan is everywhere."

If you'd known my father you'd have been amazed at that pronouncement. Throughout his life, he denied Alan's existence. He would be at an event, like an award ceremony, called the Alan Richard Hamovitch award ceremony, and wouldn't say that yes, he knew Alan. (!) I was at his side when this happened and was stunned by the silence on this very important person in his life.

Alan was his son -- and my only sibling. And Alan is what used to be called profoundly retarded. I'm honestly not sure what the PC expression for Alan's "problem" is. Intellectually challenged? A man with autism? A man with developmental disabilities (no, that's not used any more)

I don't mind if someone were to call him retarded. It really is a case of a rose smelling as sweet It don't matter. Alan's disabilities trump any concern of mine for what he's called. Alan is incapable of speaking, understanding anything abstract, holding a job, having a relationship, counting change....

Well, how do I know, if he doesn't speak? Truth is, I don't. I've been uneasy this past many years, wondering how much he might understand if someone were to talk with him, take him to places he loves, play him music that calms him down and makes a smile play on his face. Uneasy because he lives in a place that doesn't give him the things he loves to do. But then, I can't be too hard on them. I don't ask often enough, I don't think, 'what should I be doing this weekend?' I'm really ashamed to say that I don't visit him nearly enough.

So this Sunday, I'm going to treat him to everything I know that delights him, because it's his birthday. I've never celebrated his birthday with him. On Alan's 60th, I'm doing all of it. Inviting some cousins, his Service Coordinator, without whom I don't know what I'd do, Al, of course, and we're going out for brunch at a swanky restaurant in downtown Nyack. We're going to play Motown and the Beatles and Sam Cooke on our way over. (I know he's my brother when I notice him grow quiet and give these musicians his rapt attention.) And then we're going to pig out. Another way I know we're related? Alan loves to eat out. I mean, he gets so overjoyed, he will sometimes refuse to leave a place. Really! I once had to call for help. What's wrong, they said at his house. We're at an Indian restaurant, we're done eating, and he won't get up. It was like calling 911. We'll be right over, they said.

The noises Alan makes aren't those that you hear in an English sentence. They're made with different parts of the throat and mouth. And they're rich, they have timber. As well as clicks and smacks, and a fabulous range within a matter of a second. It can be startling if you're not expecting it, which is why we hardly ever -- no never -- took Alan out to eat when he was growing up. And I have to be honest, I'm a little uneasy. This is a really nice place. I don't think these glissandos of excitement will be ignored, which is what I want. The best place for ignoring Alan is Starbucks. I wanted to kiss the woman at the table next to ours when she sat down, drank her drink, and pulled out school work. You are amazing! I wanted to shout. I should be hardened, but I tense up, when people turn around in their chairs to look at us. I hate the feelings I assume they're experiencing -- like pity, or even support. Just. Don't. Look. (this is partly my problem. I know)

Saw a film at the Margaret Mead Film Festival last Sunday called "In the Garden of Sounds," about an artist, a sound artist, named Wolfgang Fasser, who devotes himself to people like my brother. Using instruments that he made or designed, as well as recorded forest sounds and bird calls, that he's gathered on his tromps into the countryside (he's completely blind, btw), he transforms the lives of these boys and girls -- none of whom, except one, has the ability to speak. These kids adore Wolfgang.

I think Alan would love Wolfgang too, who like Alan, is supremely gentle, and kind, and unlike almost anyone I know, is incredibly full of playfulness. He's devised a massage table of sorts, that's strung like a harp (underneath) and a wall of different sized cymbals. HIs art is play, his play is art. It's what we all aspire to, I suppose. Allen Ginsberg said, re making art, "why do it if it isn't fun?"

My one main sadness is that the people who work now with Alan don't look hard for what they could do to give Alan fun. They're earnest, they're competent, they take great care that he doesn't do anything that might endanger his safety -- and in my HO, they suffocate him. They -- his staff, his team -- look at me like I'm the Mad Woman from Brooklyn when I harp on this, the need for "fun" or something of interest to do, but I can't imagine anything more important.

So, for his birthday, I'm maybe going to have someone make a very long, one-stringed instrument, that will vibrate into a single deep rich basso profundo note. Or maybe a huge brass cymbal, that we'll hang on the rec room wall. (rec room used very loosely). Or a collection of CDs. Not sure yet.

Will try to have the presence of mind to record this birthday. But Alan may be singing, and I hope that I'll be laughing and I might forget.

For more images of Alan, you can visit the website devoted to the film I made about him, and us.

Wednesday, November 3, 2010

an unusual birthday present

Sometimes I think about giving an assignment to a roomful of compliant, eager and creative writing students. Funny thing is, I don't teach writing, and never did. And though I write, and am even dabbling in fiction now (for children -- and boy is that hard) I'm not a writer. But these thoughts of providing an assignment, and oh, 'you have two weeks in which to complete it' have been arising. Go figure.

This week's assignment? The best birthday present you ever received.

My birthday rolled around (fortunately) this past Thursday. I share a bday with Julia Roberts and the Statue of Liberty, and my cousin Eric, and I'm sure a few million other people.

This one, though, the thing I was delighted to receive was an unlimited supply of horse manure. Horse shit you ask? You wanted horse shit? Well, not specifically. Other things -- like a free day of plowing, or a perimeter fence for an acre -- would have been equally satisfying. I speak, as you may know, if you've read back a few posts, about the garden I'm assisting, or more accurately, fretting constantly about, down in St. Bernard Parish, Louisiana. Myself, along with three others, who are natives (I am not, which is a bit of a problem. I'm in in NYC, which is very far indeed from Southern Louisiana in more ways than one) started it, back now two years ago. Mr. Lynn Dean, a wealthy and very big-hearted man, leased us the land at no cost, for ten renewable years. August, our master gardener, called excitedly. The owner of a small group of race horses (race horses? In St. B? I've learned to love St. Bernard, but more for its generous, gregarious, gentle, well, not always gentle, people who are NOT the race-horse set, I assure you) wants to help the garden, and is willing to truck over as much manure as we need. His voice over the phone was urgent, excited, delighted. But the horse farm owner was a bit concerned about dropping off a truckload of manure right next to the Cornerstone Church, a former trade school in a tin shed, which sits on the corner of this acre. She wanted the Pastor's phone number so she could give him a heads up right before delivery.

I worry about the pastor, and the neighbors. Will they be as excited as August and me about this gift? Anyway, like Scarlet O'Hara, decided to worry about it later. I caught the fever. Horse manure! An unlimited supply. Free! It didn't come right on my birthday, but the conversation occurred a few days before and you know -- birthdays are really a cloud around the date. Al jokes plaintively that my birthdays go on for about a month, though this isn't so.

A load of horse manure is one of the things we need to get going on this little patch of green, what is destined to be an organic semi-urban farm down there, nestled between St. Bernard and Plaqueminnes Parish, just South of the Lower 9th and New Orleans. It's hard by the Mississippi, and when you look up -- I imagine this scene -- from weeding a patch of beans, you'll see the turrets of big cargo ships slowly gliding down or up river.

The skies down there are quite beautiful. So you'll also see the billowing clouds in a field of pale blue. Above the turrets. The earth is dark and dense (Mississippi mud pie wasn't named idly) and nutritionally very poor. So once we spread the manure, we need to plow it under and turn over the soil, and crumble it a little, integrating the fertilizer. August has told me all this. I confess, I am a farming neophyte. I've grown a patch of beans, cukes, tomatoes, like everyone else, but really in the most unprofessional way. I marvel at cumcumbers' agressiveness, how they leap their boundaires and march towards the carrots. But how to control bugs, thwart voles, irrigate in the dry dry months of this past summer -- I really don't know.

Back to St. Bernard. We received a gift of organic seeds from our friend, Lorna, who moved from Tennesse to help a variety of neighborhoods begin to farm, or garden, on top of straw bales. Post BP oil spill, post Katrina, she figured, people would be needing good cheap food. Anyway, they, the straw bales never arrived, as they were supposed to, from the Midwest. The promise of donated shipping never materialized. But Lorna left us dozens of packets of seeds. Everything we'll need for at least a year. I guess that's another wonderful present. Thanks, Lorna!

So, that's the assignment for this week. What has been your best BDay present?

p.s. My resolve to post here every week, with pictures, interesting musings, has been broken as you can see. I'm deep into editing Mama Sue's Garden and anyone who has edited anything will know that it doesn't leave much head space for much else. Kathryn and I are plowing ahead - pun unintended! - step by step through a recent moment in the history of three individuals, one of them August, and the others, Mama Sue and Lettie Lee. These two projects are intertwined though. I fervently hope that the film gets an audience. It has been at least three years of my life so far. But then, that its fortunes will fertilize the garden.