Editor’s note: I wrote this post one night after talking to Jack about the things he would like people to know. Although he is not the most forthcoming person in a conversation, he did reveal quite a bit about himself. I tried very hard to capture the pattern of his speech, because I think it’s fascinating, and beautiful.
Hello. My name is Jack.
The other day I was yelling at my mother. It was before dinner and she was cutting up tomatoes and putting them into a bowl with salad. I don’t like tomatoes so I have to pick them out of the lettuce and put them on the side of my plate.
I was yelling because I was mad and I kept saying how no one knows me.
She took another tomato out of the bag and rinsed it under the faucet. The noisy water echoed in my ears.
She asked, “Well, Jack, what do you want people to know about you?”
I stopped yelling then and I thought about what I want people to know.
These are a few things about me. I am twelve. I wear glasses.
I have blue eyes and I like my hair to be very, very short or it bothers me and I pull at it with my fingers.
My favorite food used to be pancakes, but now it’s cheese enchiladas.
I was born on Mother’s Day.
I was born with autism.
When my mother asks me what I think autism means, I tell her it is my diagnosis. It is in my whole body.
The things I like to do are organize my movies into certain piles that change every day. When I don’t do that I like Minecraft on the computer or to look up different recipes of food to cook.
I like music a lot. I know all the words to the songs but I never sing. In my head I do, but never with my voice. My mother always tells me, come on Jack, sing with me but I don’t. She is for a terrible singer anyway.
I jump a lot, fast around the room. This is because my body feels like I have ants crawling all over, on my legs and my arms and my belly. Sometimes even on the top of my head. I have to jump so they stand still for a little while. It is called by the doctor self-stimulation. In my house we call it my zoomies.
I want you to know that I try to be normal. But for me this is hard.
If you are to be talking to me, I might not look in your eyes. This is because your eyeballs move fast and if I watch them, I can’t think about the words you are saying with your mouth. It gives me a headache.
I mix up my words and sometimes I say bad swears if I am mad. I know this is wrong. But the thing about words is I can’t always find the rights ones in my brain. So if I have a lot of madness inside of me, I reach up and pick the bad ones, like a ripe apple hanging on a tree–the kind that is crunchy and red when you take a bite.
I ride to school on a short bus. Some people say this kind of bus is for kids who are dumb. They say the word retard.
I am not dumb. This for me, I know. I don’t exactly know what a retard is but it sounds like an ugly word. One time I asked my big brother Joey because he knows a lot about things and he said I should never say that word again.
I always sit alone on the bus. I sit in the front seat right behind the bus driver all by myself, every single day. This made my sister Rose feel bad for me, but it is for me okay. I like it. I sit there in the quiet and I hold my red backpack on my lap and I twist the strap. It makes me feel good and peaceful, like a balloon that is letting out air very slowly.
See, for me, the world looks different than it does to you. It is big and noisy and jumpy and loud and everything smells strongly. I can’t organize it all in my brain. It’s like a great big puzzle, and I work hard to put the pieces together so they all make sense. Sometimes, I need to be alone. I need to watch the world and all the people from behind the glass.
I hate the autism in me. I tell her that I all the time. I stomp my foot down and I say I hate my autism.
When I say this she gets a funny look on her face. And she says Oh Jack.
Then she reminds me to think of the butterfly and the rainbow.
See, science says the Autism Spectrum is shaped like something called a bell curve, where it’s low on the ends and high in the middle. My mom said I should picture it as a rainbow. It is long, and smooth, and has a lot of shiny colors and brightness.
And the people with autism are like butterflies balancing on the top of the rainbow. Our wings are so light you can almost see through them. My wings are blue because my mother said they can be any color I want and I really like the color blue.
All these years, my mom and dad have worked hard to teach me good things.
They taught me how to fold my napkin in my lap when we’re eating at a restaurant, and how to say please and thank you.
They taught me how to cook an egg, and change a light bulb, and that I should never, ever drop the squishy wet tomatoes on the floor. I have to keep them on my plate even if I don’t want to eat them.
But some things, they can’t teach me. They don’t know how to teach me the way over the rainbow’s big, sloping curve so I might fly to the other side of normal.
Part of them doesn’t know if they should teach me that. Because they always say I am so very good and perfect the way I am, even with my autism. Especially with my autism.
I guess what I really want you to know is just because I’m not looking in your eyes, it doesn’t mean I’m not listening.
hey what’s that kid doing why is he jumping dummy retard go ride your short bus
Maybe you have never had invisible ants march all over your body like they are in a parade. That is okay.
Maybe you have never sat alone on the bus because you like a lot of people around you all the time. That is okay, too.
Maybe you and me, we are very, very different. But you can still know me. Because I want to know you.
I hope one day I can help you learn the words. And then you can teach me to sing.
Until then, if you see a short bus drive past your house or your school or your playground, look up, and wave. Smile if you feel like it. Because there just might be a boy sitting right behind the driver in a seat with his backpack in his lap.
And from the other side of the window, he just might smile back.
Carrie Cariello lives in Southern New Hampshire with her husband, Joe, and their five children. She is the author of two books, “Autism” and “What Color Is Monday? How Autism Changed One Family for the Better”. She also writes a weekly blog at www.WhatColorIsMonday.com and you might be lucky enough to catch her speaking at various parenting events throughout the country.
Carrie is also part of the Hello Mamas Global Influencer Team. Interested in learning more about what that means? Contact us!