Most people like to talk in their own language.
They strongly prefer it. They so strongly prefer it that when they go to a foreign country they just talk louder, maybe slower, because they think they will be better understood. But more than talking in their own language, people like to hear things in a way they are most comfortable. The way they are used to. The way they can most easily relate to, as if that makes it more real. So I will try to tell this story in that way.
And I will tell this story in first person.
I not he. Me not him. Mine not his.
In a neurotypical way.
I will try—
To tell my story in their language, in your language.
I am Jason Blake.
And this is what someone would say, if they looked at me but could only see and could only hear in their own language:
That kid is weird (he’s in SPED, you know). He blinks his eyes, sometimes one at a time. Sometimes both together. They open and close, open and close, letting the light in, shutting it out. The world blinks on and off.
And he flaps his hands, like when he is excited or just before he is going to say something, or when he is thinking. He does that the most when he’s on the computer or reading a book. When his mind is focused on the words, it separates from his body, his body that almost becomes a burden, a weight.
Only his fingers don’t stand still while they wait. They flap at the ends of his hands, at the ends of his wrists.
Like insects stuck on a string, stuck in a net. Like maybe they want to fly away. Maybe he does too.
In first grade they put a thick, purple rubber band across the bottom bar of his desk chair, so Jason would have something to jiggle with his feet when he was supposed to be sitting still. In second grade Matthew Iverson sent around a note saying, If you think Jason Blake is a retard, sign this, and Matthew got sent to the principal’s office, which only made things worse for Jason.
In third grade Jason Blake was diagnosed with ASD, autistic spectrum disorder. But his mother will never use that term. She prefers three different letters: NLD, nonverbal learning disorder. Or these letters: PDD-NOS, pervasive developmental disorder– non-specific. When letters are put together, they can mean so much, and they can mean nothing at all.
From third grade until this year, sixth grade, Jason had a one-on-one aide, who followed him around school all day. She weighed two hundred and three pounds. (Jason asked her once, and she told him.) You couldn’t miss seeing her.
But the thing people see the most is his silence, because some kinds of silence are actually visible.
When I write, I can be heard. And known.
But nobody has to look at me. Nobody has to see me at all.
School doesn’t always go very well. It is pretty much a matter of time before the first thing of the day will go wrong.
But today I’ve gotten far. It is already third period. Mrs. Hawthorne is absent and so we are going to the library instead of art class. This is a good sign. You’d think art class would be one of the easiest classes, but it’s not. I mean, it’s not that it’s hard like math, but it’s hard like PE. A lot of space and time that is not organized.
Anything can go wrong in that kind of space.
But not in the library. There are computers in the library. And books. And computers. Keyboards and screens and desks that are built inside little compartments so you don’t have to look at the person sitting next to you. And they can’t look at me.
When we get into the library, somebody is already sitting in my seat, at my computer. At the one I want. Now I can’t breathe. I want to log on to my Storyboard website. I was thinking about it all the way here. I have already had to wait so long. I don’t know.
“Jason, this one is free,” the lady says. She puts her hands on my shoulders. This lady is a lady I should know, but her face looks like a lot of other faces I don’t know so well, and I group them all together. Her face is pinched, but her eyes are big, round like circles. Her hair doesn’t move, like it’s stuck in a ball. She belongs in the library or the front office or my dentist’s office.
But she is here now, so I will assume she is the librarian.
I know from experience that she is trying to help me, but it doesn’t. I can feel her weight on my shoulders like metal cutting my body right off my head. This is not a good thing.
I also know she wants me to look at her.
Neurotypicals like it when you look them in the eye. It is supposed to mean you are listening, as if the reverse were true, which it is not: Just because you are not looking at someone does not mean you are not listening. I can listen better when I am not distracted by a person’s face:
What are their eyes saying?
Is that a frown or a smile?
Why are they wrinkling their forehead or lifting their cheeks like that? What does that mean?
How can you listen to all those words when you have to think about all that stuff?
But I know I will get in trouble if I don’t look at the lady’s eyes. I can force myself. I turn my head, but I will look at her sideways.
I know the right words to use.
Last year Jane, my one-on-one, taught me to say, “I am okay just as I am.”
I am okay just as I am.
She told me I had to say something in this sort of situation. She said that people expect certain things. She said that people will misunderstand me if I don’t say something.
This is one of the many, many things I need to run through in my mind, every time. Also the things my OT, my occupational therapist, has taught me:
Look people in the eye when you are talking (even if this makes it harder for you to listen).
Talk, even when you have nothing to say (that’s what NTs do all the time).
Try to ignore everything else around you (even when those things may be very important).
If possible put your head and your body back together and try very hard not to shake or flap or twirl or twitch (even if it makes you feel worse to do this).
Don’t click your teeth. (These are the things people don’t like. These are the things they hear but can’t hear).
“I am okay just as I am,” I say, and I take a step forward. I want the librarian to take her hands off my shoulders. The weight of her hands is almost unbearable, like lead. Like the lead apron the dentist puts on you when you get an x-ray, a crushing rock while the technician counts to ten. And you can’t move.
Or they will have to do it all over again.
Also, I want to stand close, so there will be no confusion that I am next in line. The person at the computer turns around to the sound of my voice. It is a girl. Most girls look the same, and I can’t tell one from the other.
Long hair. Earrings. Different tone of voice.
I don’t know who this girl is, or if she already hates me, but chances are she does.
The girl doesn’t say anything, so I have to look at her face and figure it out. Her eyes are squinched up, and her lips are pressed so tightly together they almost disappear. I recognize that she is unhappy or even angry, but I don’t know why.
“You are breathing on me,” she says. “You’re so gross.”
“Gross” could mean big or refer to a measurement or weight, but in this case it doesn’t. It means she doesn’t like me. She is, in fact, repulsed by me, which is how most girls react. My mom tells me not to worry. My mom tells me I will find a girlfriend one day, just like everyone else. I will find someone who sees how “special” I am. I know no girl will ever like me. No matter what I do, no matter how hard I try.
But maybe I am wrong.
I hope so.
I hope I am wrong and my mother is right. But usually I am right about these things.
“I was here first, Miss Leno,” the girl says.
Miss Leno is the librarian’s name.
“Jason, here,” Miss Leno is saying. “Sit here. You can use this computer.”
But I can’t use that computer. I don’t want to. I can’t. My breathing is too loud inside my ears. I stiffen my body, solidify my weight, so she can’t move me with her hands. You’d be surprised at how quickly people will try to move you with their hands when they don’t get what they want with their words.
I wish Jane were here with me right now and then this wouldn’t happen. Words don’t always work.
“Jason, hold still. There’s no need to get so upset. There are plenty of other computers.”
Miss Leno is trying to shift my weight off my feet, and she’s trying to pretend she’s not, as if she’s just walking with me, instead of pushing me, which is what she’s doing.
“Jason, please.” But she doesn’t mean please. There is no please in anything Miss Leno is asking. She is pulling me.
I feel off balance, like I am going to fall. I need to shift my weight back and forth, back and forth, rock to stabilize myself. I can feel my chance to use my computer getting further and further away from me. There isn’t even enough time left in the period. I might not get to log on at all, even if this girl does get up. A hundred little pieces threaten to come apart.
“Jason, please, calm down. Calm down.” Miss Leno’s voice sounds like a Xerox machine.
Sometimes there is nothing to hold me together.
Copyright © 2009 by Nora Raleigh Baskin