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. www.withoutapology.com