Friday, August 19, 2011


Five Trains To A Puppet Show
My mother once told me she took five trains to get my sister to a puppet show. How was that even possible? Apparently they got lost at one point and had to double back, and that’s the part I understand, even more than the interboro destination; the getting lost. But I only understand it now that I, too, like my mother, have an Autistic child.

“When you have a kid like her, you’ll do anything to get them stimulated, to put them in front of something they recognize, and give a shit about. You would do anything to be somewhere that they aren’t clawing you to escape their heads.”

My mother said that.

I do anything, well, not anything, but a lot, to give my son stimulation and to protect him from stimulation. And I do a lot myself, of therapy, a lot of going into this lady’s office to bang my psychic head against the wall trying to make a lasting dent of truth in my brain; my son is not like my sister; he is not my sis-ter. This technique of remembering my own life as I’m in it is time consuming, laborious, and painful, but it’s working.

How about that head banging. Autistics are known for it; a childhood specialty of my sister’s, my son has never, ever done it. Works for me, though.

I can’t talk in a straight line. I say one thing and it’s an octopus. My son compartmentalizes and I’m trying to learn from that. We figured this out with the bus. We didn’t think he would take the bus to the school, which is 29 miles away. I drove him the first few days, which put me in the car, given New York outer-boro traffic, for over 4 hours a day, and I was losing my mind.

I finally said to him, “Bud, if I have to drive you every day, we might break the car, and we’ll use up all our gas money and we won’t be able to go to Cape Cod.”

At that threat, the notion of losing his visit to his most ideal place in the whole world, he blinked in horror, and said, “Okay, I’ll do my part and ride the bus.”

And the next day he got on the bus and went to school as if he had been doing it all his life. A week later, for a variety of un-related reasons that only made sense in my own head, I thought for a ‘treat’ I would pick him up at school, which meant bringing my daughter along. At pick-up time, he came walking down the hall, peacefully holding his teacher’s hand and chatting with her, wearing his backpack as if he had been doing that, too, for years and years, and even though he knew we were coming, on sight of us, became furious, shouting, “You’re not supposed to be at school!”

I got it. OCD. Obsessive Compulsive Disorder, yet another of the many possible diagnoses that had been bandied around and which I had rejected because my kid absolutely does not wash his hands or flip light switches repetitively, nor is he afraid of germs or certain colors of food nor does he line up all his socks or any such bullshit; he’s got at least that going for him, for Christ’s sake. But that’s not what OCD looks like on him. On him, it is that everything has a place and never should these assignments collide. Mommy is home, a world of all the good and weird places we enter and depart together; and school is school, and I, and his sister, have no business on his turf, in the world of Velcro icon schedules and tiny Miss Sharon and kindly Miss Louise and the safety of his classroom, for he shuttles independently between worlds on the meteoric, metaphoric bus and can we not fuck with it, please. God bless the bus.

So I’m trying to borrow that. Each thing must have a box. My sister has a box to live in and must stay there. She actually lives in a large house made up of stuck on boxes, rooms that were added to this old Long Island colonial as each new resident arrived, a house bought from a family with several children, one of whom, the indomitable Cortlandt, would become the director of the place as it evolved into a ‘group home,’ (what was it when a family with many children lived in it? But never mind.) My sister has lived there for 25 years, which confounds me, because I’m 19, aren’t I? With time to get traction and complete a degree, launch a life, and take responsibility?

I am not. I am 41 and time has become the most relative thing in the world. Knowing is like that, too.

When my mother told me about the puppet show, I was horrified, but it was much too late for horror. She was talking to me about something that had happened 30-some-odd years before. My sister is 12 years older than I am, so by the time I was old enough to hear about my mother’s life with her, it was all long in the past, and I was still barely able to comprehend what my mother told me, and not too mature to judge her.

Why?” I whined, in response to the story about the five trains. And that was when she said the thing about stimulation and clawing; which, clawing, my son also does not do. But I may have responded to my mother’s story with something very compassionate like, You spoiled her. You killed yourself for nothing.

I now know that nobody kills themselves for nothing, and I found that out before I even had a kid, let alone an Autistic one; it’s not a phrase to toss around. As far as ‘my Autistic kid’, that’s not a phrase to toss around, either, and my kid is not really that, in my driving mind; it’s not a thing I know. It’s a thing on paper that gets him into a school with just four other kids in the class, not the mainstream 20. It gets him Occupational Therapy in sensory gym where twice a week he can turn off the blast of Sensory Processing Disorder noise in his face by swinging on that fucking goddamn Temple Grandin swing thing. It gets him play therapy with a shrink, and Speech and Language for pragmatics, which is the learning of how to talk like other kids instead of giving multisyllabic-laden treatises on prehistoric life forms both real and manufactured. ‘Autistic’ is a word on paper that doesn’t cost us $50,000 a year for the school because it’s proof, medical proof. It’s a way in, and a way out. It’s how he gets liberated from a world for other children that’s too much and too loud and too loose, where everyone knows what to do but him, where nobody is different, but him. I don’t really know that he has Autism, but I know that saying it makes him free.

My mother said, when I told her she’d spoiled my sister (which Bruno Bettleheim also told her, in about 1965), “Maybe you’re right. I don’t know.”

My mother was a person of fierce conviction, but what is knowing? Who cares? Knowing and time, this is what I mean. That many years later, after the puppet show when my sister was maybe four or five or six, and at the time of the telling was in her late 30’s, safely ensconced, spoiling a forgone issue, how could it matter? I could have been right, why not? Busses explode. Dogs get electrocuted on the sidewalk. People get cancer or pardoned or fall in love. Autistics talk and make a million dollars. Parents wake up every morning and go to work after three hours of sleep and don’t crash the car and die on the way home. Children love them though they yell and punish all the time. The Middle East is on fire. Japan is under water. Why couldn’t it be so that my mother spoiled my sister? Why would I not still be mad about that?

Or is that just the Sensory Processing Disorder talking, to me? Is that my noise?

I can know that my son has Autism, or not know it. I can say it and secret away in a box for myself the conviction that he does not; that’s fine. And my mother, for her part, probably forgave herself for a lot of my sister’s life, and critiques like mine were old news; still plausible but not compelling any more. She could entertain it or not -- better not. Because if I was right, then the puppet show and the five trains fall away like autumn leaves, which need no one to help them or tell them how to fall. Better if I’m wrong and she was just too tired to bicker with me, who didn’t deserve it and also did, because I live five trains to a puppet show now, and the irony is almost more than I can bear.

No comments: