Dear Mr. President,
My name is Jack and I am eight years old. I love cars, license plates, and radios. My mother says I’m obsessed with these things. All I know is I like to ask every single person I meet what kind of car they drive and how many radios they have.
I hear my mother and father and doctors and teachers talk about things called cognitive flexibility and social skills and speech delay. I hear them say the word autism.
But I really don’t understand what any of these words mean. I just know that when there are too many people around, I feel weird and scared because I don’t know how to talk to them. That’s why I ask questions like, “When is your birthday?” and, “Do you like Toyotas?” These subjects make me feel safe.
I remember every single thing I read and hear and see. I can tell you what the capital of the Philippines is and how last Monday I saw a California license plate on a blue Dodge Dakota. But I can’t figure out if my mom is angry or happy.
The feeling of yogurt on my tongue makes me crazy. It’s way too slimy. If my mother even asks me if I want yogurt, I clap my hands over my ears and start screaming. I scream until I know that she understands me, that she’ll get me something else to eat.
I clap my hands over my ears a lot because certain sounds bother me, sounds like airplanes in the sky and static on the radio. When we’re in the car and the radio gets static on it, I put my hands over my ears and chant, “Turn it static turn it static turn it static.” My mom or dad usually changes it right away for me.
Sometimes I get very, very angry and I lose my good words. I say terrible things like, “I hate everyone here.” and, “I want to kill my friends.” But deep inside, where my heart is beat-beat-beating fast, I’m saying, “I am so sad and I feel very alone.” When I feel so mad my mother tells me I’ve hit the red zone and I have to use my breathing to stay calm. I try.
I live in New Hampshire. I think people like you – people in politics – call our state the swing state. Whenever I hear that, I picture our state swinging like I do on the playground and I laugh out loud. I like New Hampshire, but I really, really want to see Wyoming. I talk about it all the time, how when I’m a grown-up I’m going to Wyoming. I plan how long it will take me to drive there. But unless my parents take me, I’ll probably never go. I hear people say I may never be independent.
The world looks and sounds and feels so very differently to me than it does for most people. Maybe you could take a minute and try to see it through my eyes and hear it through my ears.
Imagine a world where the sights and sounds and smells don’t make any sense to you. Where people look at you with their different faces but you still can’t tell if they’re happy or mad or frustrated. Where watching their eyeballs flicker back and forth gives you a headache, but all day long people tell you, “Look in my eyes Jack, look in my eyes. Look at me!”
Picture a world where the days of the week look like colors in your mind. When someone says, “Spelling is on Friday,” I think of an orange so bright it’s like the sun setting in the summer sky. And Thursday is a dark purple like an eggplant.
Imagine the feeling of a thousand ants crawling up and down your body, all over your legs and your arms and your tummy. I have that feeling many times a day, and I have to jump and bounce to make it go away. I think this is called self-stimulation. But in my family we call it my zoomies.
I tried to watch the debate between you and Mr. Romney but it was very confusing—you both talked too fast and you were smiling, even though your voices sounded mad. So I was hoping you could answer a few of my questions in this letter.
Sometimes I get very, very nervous. I can’t sleep and things like the wind chill factor and blue water in the toilet scare me. The doctor says I’m anxious. I take one tiny white pill at night to help me with being anxious, medicine my parents pay for with insurance. How will we pay for my medicine if healthcare changes? I really need it.
I heard the doctor tell my mother that one in eighty-eight kids have autism. That seems like a lot of people. How will you make sure that teachers and bus drivers and parents learn about kids like me, kids with autism who hit their red zones and shout out, “I want to light the school on fire,” when we really mean, “Math feels hard today.” Because we deserve to be understood.
And will you try to find out why so many more of us have autism now?
I may not use a wheelchair to move or sign language to speak, but I still need certain things to help me get through my day, to help me do what my therapists call integrate and learn like everybody else does. Will my school still be able to afford people like my paraprofessional, Miss Anne? And therapists for speech and occupational therapy? They’ve helped me come so far.
What’s going to happen to me when my parents die?
Now, close your eyes and think about Tuesday, the day our country decided you will be the President of the States again. Do you see yellow?
If you do, then maybe you do understand me just the tiniest bit, maybe you will make decisions to help me lead a full, productive life. Decisions to help those around me know me and my beautiful autism even better.
Maybe you’ll help me see Wyoming.
P.S. What kind of car do you drive?
Carrie Cariello lives in New Hampshire with her husband and five children. You can read her weekly blog and learn more about her online at www.WhatColorIsMonday.com.