Susan's Blog

Friday, July 13, 2018

He’s with the band

They showed up one evening, at my friend Eswar’s house. He was hosting a bunch of musicians that night, an impromptu concert. He himself was going to play the violin with his son. That in in itself was a good enough reason for us to be there, to see Sri — whom we’d known since he was little, who had befriended Nat because Nat tickled him – play the violin with his dad. Sri has autism, like Nat. This musical ability blew my mind.

I didn’t even know the two women – clearly they were the teachers — were together. Elaine, with a violin tucked under her chin. I knew that she had been giving Sri lessons. The other young woman there also had long black hair, playing on the guitar. Later I learned her name was Miyabe and found a website which showcased most of the guitar attachments I saw her while she was on the podium. She seemed to always have a smile on her face. Even so, I didn’t approach her, I felt shy, in awe. They were so cool. All of them, in that band kind of way. But I knew I would need to talk to Elaine because of what she’d done: she’d taught most of the other musicians, all of them with disabilities that were fairly profound in one way or another, how to make real music. And I wanted to ask if Nat could maybe learn an instrument.

To me the other students were like gods because they were in a band, actually playing instruments. All having so much fun. How did this happen for all of them? I guessed that this is what you could have when you were higher-functioning autistic. You could have an awareness that music comes from somewhere, and that you could actually make it happen with your own hands.

Maybe Nat knew that. But I didn’t think he cared. That’s always been one of the biggest problems of his autism: he didn’t seem to realize that caring, taking an interest, making that effort to understand something or someone, would actually benefit him. As a toddler the behaviorist taught him how to put a doll in a car and push the car around making car noises. Vroom, vroom. But she could not teach him how to enjoy it. He’d dutifully push the car and then stop and wait for the next command.

Maybe he does care but doesn’t know how to show it. Maybe he doesn’t care and that’s okay. I guess what I should say is, I care. I want him to be able to interact with other people and not be alone so much.

Nat sat through the concert, and seemed very interested in all that was happening. And when it was over he stood up with the musicians while the parents were taking pictures, as if he were one of them. And just like that, he was. When I talked to Elaine it was as if she already assumed he was going to be playing with them; I didn’t even really have to ask. I am used to people letting Nat in, tolerating him. I am used to seeing him included, but always as the least able participant. So what, right? Who’s comparing? It’s not a competition. Blah blah blah.

I never in a million years imagined that there would be people — other than family — who would want him for what he himself could do. Who saw his particular contribution, his unique self, as being something they actually needed and wanted.

It turned out that Nat could sing. I think that Elaine and Miyabe were almost as happy as I was about it. I say almost because I don’t actually know if it’s possible for anyone to love Nat more than I do, and so how could anyone else be as thrilled about this accomplishment as I was? And yet with Elaine and Miyabe — and soon I realized Brett, the drum teacher was just like them – I wonder. Because the more I saw them with Nat, the more I had this feeling that they were taking a kind of “ownership” of Nat.

Not that any human being can own another. What I mean is they felt a certain proprietary thing for Nat. Not protective. Not patronizing. But a pride and a desire to be with him and bask in his Nat-ness. As equals. Aside from Ned, the only other person who has projected this sense of ownership of Nat is Laura, my sister, who actually attended his birth.

Suddenly people who were not his family and who were not being paid to do so wanted to be with Nat. Not because it was their job. Nope. Just to hang. Brett came a few times for walks with him to get JP Licks ice cream. Miyabe would ask if she could hang out with him, go running around the pond with him. She and Elaine took him to a concert one afternoon and I did not even realize it was happening until later. He came back with a tee shirt and later I saw pics of him as part of the group. It still amazed me to see it but at that point Elaine, Miyabe, Brett, and Max, (another of the instructors) all just took it in their stride. They were already used to hanging out with other students (who are also young adults, like Sri and Stefano, the lead guitarist). They taught these guys but they also had fun with them. The MUSE teachers – Brett, Max, Elaine, and Miyabe, were in charge of the students’ safety, but the only time they were paid was when they were instructing the guys. I wanted them to understand how precious this new existence was for Nat, for me. I wanted them to know what they meant to me. I wondered about paying them. But they shrugged that off. I suspected that it was somehow completely not it. That to accept my money would be insulting to them and to Nat. It would ruin it. It would define their relationship in the wrong way.

Why do I keep mentioning that it wasn’t a job, that no one was pay? Because in our society money defines who and what things are. Money shows appreciation for someone doing a job. So without money, what was the relationship? I was afraid to ask, as if to name it would change it.

So really, what was this kind of thing the four teachers were doing — and now also bringing along spouses and other friends? All of them in their twenties, some disabled musicians, some not. Sometimes parents like Ned and me came along. We were welcome, too, even though we are twice their age. And when we do hang out with them, I feel light and free, and full of potential myself. I still sometimes ask myself why does this happen? Why does this arrangement — MUSE as a group for whom only music and friendship and fun matter — why does it work so well? How can there be so many boundaries crossed? Maybe that’s not even the way to look at it; it’s not that MUSE crosses boundaries. It’s that the MUSE does not see obstacles to friendships.

It’s complicated, and yet it’s the most natural thing I’ve ever encountered.


That picture makes it all clear to me. How wonderful!

— added by Donna on Friday, July 13, 2018 at 9:48 pm

Wonderful essay and pictures! May the Buds get invited to play alongside the Boston Symphony Orchestra and some other legendary musicians in the area.

— added by Scott Lentine on Friday, July 13, 2018 at 11:24 pm

Ah, in all his Nat-ness! I’ve always had a thing for the guy in the band. Simply BEAUTIFUL, Susan. I feel your heart.

— added by Denise Fabio on Saturday, July 14, 2018 at 6:28 am

This. This a dream come true – it makes me unspeakably happy that there are people like this in the world. I’m so happy that Nat found his tribe.

— added by Susan on Saturday, July 14, 2018 at 12:50 pm

So awesome. I have some amazing kids and adults with autism and love them all. Yes I work with them and get paid, but not all the time. I had an amazing surprise 60th birthday party with so many many folks from all parts of life and one of the teenagers I work with was there with her parents, as a guest. My husband knew I would want her there as well as her parents. She was so excited and so was I. It made the party whole.

— added by michele on Wednesday, July 25, 2018 at 10:11 pm