My son Jack asked me what I was writing about this week, which is kind of unusual. He almost never does that.
I told him I am writing about our friend Sebastian. He asked why, and I said because I want people to know Sebastian, just like I want people to know him and his autism.
What I didn’t say was that I went to the talent show at our elementary school last week, and I noticed that a lot of kids sort of walked around Sebastian—not because they are mean or anything like that, but because they weren’t sure how to interact with him.
This made me sad. It made me think about what it must be like to sit alone, trapped in your mind and your body and your heart, while the world swirls around you like a quiet snowstorm.
So, if you get a chance, please say hello to Sebastian. He is amazing and strong and courageous and funny and determined. He is also very, very handsome.
My name is Sebastian, and I am almost seven years old. Maybe you’ve noticed me at school.
I am the boy with the dark hair and the brown eyes.
I am the boy who doesn’t walk.
I am the boy who can’t talk.
I am the boy in the wheelchair.
All year long, I watched you run and jump on the playground. I saw you clap at the talent show. I was there when you slid your plastic tray of food down the line in the cafeteria and asked for more potatoes.
The thing is, I see you. But sometimes I’m not sure you see me.
I can’t run, or jump, or clap. I can’t slide a tray down the line or ask for extra mashed potatoes. But still, I have a story to tell.
I was born in July. My mother tells me it was a perfect, sunny summer day. It was hot. My father says he doesn’t remember because he was driving so fast to get to the hospital that it’s a blur in his mind, but don’t worry. He got us there just in time.
I was born all fine and la-di-da no problem, but then all at once things changed. I could not breathe.
The room felt like it was getting smaller and smaller and the walls were getting too close and there wasn’t enough air and I was gulping and working, trying to fill my baby lungs.
Everyone was moving very fast and there were tubes and doctors and nurses and my mom was calling my name.
In the end, it was just a little too late for the air. My brain didn’t get what it needed and so it became a different brain. This was no one’s fault. It just was.
Now I have something called cerebral palsy.
Cerebral palsy isn’t something you can catch, like the stomach bug or a cold. It is something that happens when your brain gets hurt.
It affects the way I move my muscles and use my body. You see, my brain tries to tell my legs and my arms to move around and wave goodbye and lift my fork, but my body doesn’t listen the ways yours does. The signal gets crossed and by the time it reaches my arms and legs, they have already decided to do whatever they want.
The doctor says that being in my body is like running a marathon every single day. That’s how much work it is for me to do the things that come naturally to you—like picking a chicken nugget off of your plate and bringing it to your mouth, or taking a long sip of your milk.
I am what you call non-verbal. This means I don’t speak any words, even though I think all the same thoughts that you do. I think about how good the wind feels in my face when I swing in my swing, and how I wish I could eat cookies for dinner instead of carrots.
I love pizza.
Sometimes I let out a big noise like a squeal, or I laugh really loud. Don’t be nervous if you hear me. I’m just thinking about something that’s funny or interesting and I want to tell you about it.
Another thing you may notice about me is I look like I am sleeping a lot of the time. This is because the world around me looks too bright and too colorful and it’s too much for me to take in and understand, so I look down at my hands to give my eyes a break.
Don’t worry. My eyes may be closed, but I hear everything you say. I hear you. I see you. Can you see me?
You know how you use your voice to talk to people? You can ask for things like more juice and tell your mom if you have a headache. Well, I don’t use my voice. Instead, I have a device that’s like an IPad, and it has hundreds of buttons on it fo r me to choose from—I can tell people how I feel, and what I need, and if I’m hungry or thirsty.
One time I told my mom I wanted to eat whipped cream.
I know how to spell my name. I know my colors and my shapes in Spanish.
I am not lazy.
I am not stupid.
I am not invisible.
I am here.
Do you see me?
Last year my mom had a baby. In the beginning he cried a lot, but now it’s a little better. Sometimes we look at each other and we smile a quiet smile because we are brothers.
I love to swim in the pool with my dad. I hold onto him so tight and he walks into the water with me and I kick my legs. They are weightless and light beneath the cool, blue surface. For the tiniest moment, I feel like I am floating.
Today is the last day of school. The classroom is warm and all of the decorations are down and there is an excited buzz, like a thousand bees are about to fly out of their hive. I can feel it.
I will think of you this summer. I will remember your clapping and the way you slid down the slide. And next September, I hope we can begin again.
I hope you will wave to me across the crowded hallway and say hello on the playground.
I hope you will walk over to where I am, and ask for a high-five with your hand spread wide.
I hope you will see me.
Because even if you can’t hear my voice, I still have something to say. Your friend,
P.S. You say square in Spanish like this: cuadrado.