A Day Inside My Shoes
Note: I wrote this post based on many, many conversations with my son, Jack. I tried to use language in the same fashion he does, because I find it fascinating.
My name is Jack. I am fourteen years old, and I have autism.
Autism is something in me that never sits still. It is my color and my light and my darkness. I was born with it. I did not have a choice.
For one moment, will you step inside my shoes?
Yes, you. You, with your friends and your IPhone and your Instagram and your easy, happy smiles.
Not really inside my shoes. They are blue Nike brand and the size is thirteen. They probably would not fit you.
When I was telling you to walk inside my shoes, I was telling you a metaphor.
Metaphors are hard for me. I spent a whole year learning about them. While you took geometry class and learned Spanish or French languages, I was trying to figure out what people mean when they say the sky is falling down, or it’s raining cats and dogs.
I am what the doctors call literal. This means I think things mean the way they sound. For example, if you tell me you know the ropes, right away I think about long, heavy ropes and I think you must be very smart with them. Like Tarzan.
I move funny. I jump and hop and I rub my hands together very fast. This is because sometimes my body tells my brain what to do, instead of the other way around.
Before you stand with your group of friends in a big circle at the bus stop and copy the way I jump around, please. Walk inside of my shoes for a moment.
Imagine about sitting on the couch watching television and eating popcorn out of the bowl and all of a sudden it feels like a thousand ants are crawling all over your arms and legs with their small ant feet. You have to jump up fast-like to shake them off of you.
Before you look at each other and roll your eyes when I talk to you because you think me to be dumb without brains in my head, please. Walk inside of my shoes for a minute.
Imagine about spending your whole life making proof of who you are.
I spend my whole life making proof of who I am.
I am making proof that I am good, and whole, and smart, and nice.
I am making proof that I am mostly just like you.
I am never alone. All the time people are watching me and seeing what I do like I am a littler kid than fourteen.
Do you have fears? I do. I have many of them.
I fear loud noises and hurricanes and birds at the beach.
It’s like this: the fear gets stuck in my head and I can’t think of anything else and my brain moves very fast and busy. I can’t slow it down. I can’t think of anything else.
The next time you have something really, really important to say, think about me.
Think about the way words are like hot stinging bees on my tongue. They don’t fly out when I need them most. They stay inside me and they burn bright hot strong wrong.
Like the time I went to Mel’s Funway Park in sixth grade. It was June 10, 2016. At Mel’s Funway there is miniature golf and arcade games and ice cream.
I was very excited for this day. When we had the form I filled out very carefully that for my lunch I wanted a cheeseburger. We talked about the rules for many times. I agreed I would be good and I wouldn’t have my madness.
After the bus pulled into the parking lot we piled outside into the yellow morning. Right away we all wanted to ride the go-carts around the track.
The go-carts are very good. I knew this already because one time my dad took me and my three brothers and my sister and we rode them. We each got our own cart and we raced to see who was the fastest. Mine was blue for my favorite color.
When I got on the line this time a teacher right away looked at me and said no. No for me to ride alone in the go-cart. Because of my autism and maybe I would not be safe.
I tried for to tell them I could do the go-carts like everyone else because I did them one other time with my father and my three brothers and my sister, but the bees refused to fly. I could not make the words in my mouth.
Then I did what I always do when the bees stay quiet. I got very bright hot strong wrong mad. My madness is like the sun. I cannot turn it off when it burns inside of me.
I got my madness and then they called my mother and she came to get me and she looked at me very sadly and I had to go home. While everyone got to drive in their go-cart fast and laughing.
On this day, I felt terrible.
I wish you could know what it’s like for me. I wish you could feel autism for your very own self.
I wish I could know what it’s like for you. I wish I could feel independence for my very own self.
I talk different.
I move different.
I am different.
All the time, I am alone.
Even with many people around me checking all the time, I am alone.
Do you see? I am trapped here, in my brain and my body. I am buried breathless beneath my fears. I want to be like you, but I do not know how.
The next time you feel lonely, think of me
The next time you feel angry worried scared dark, think of me.
The next time you ride a go-cart, think of me.
But don’t remember the bees, or the madness, or my long ride home that bright hot strong wrong time.
Think about how, three days later, my father took me back to the Mel’s Funway Park. He let me ride the go-karts for the whole of the afternoon. He took out dollars from his pocket many times and told the man in charge to give me the blue car for as long as I wanted.
On this day, I felt laughing happy free.
July 9, 2018 @ 11:10 am
Love your writing. Hey
July 9, 2018 @ 5:47 pm
I like the way jack talks! It’s hard to live with anxiety and I’m sure even harder as a kid. Everyone can benefit from just a little empathy.
July 9, 2018 @ 6:55 pm
Jack. You, my boy, you have a wonderful dad.
July 9, 2018 @ 10:58 pm
What a wonderful dad to a fascinating son!
July 10, 2018 @ 6:26 am
Hi Jack! I think you are great! You are so brave, even when you get bright hot strong wrong mad. I’m so glad you got to ride your blue car after the sad day you had. People won’t always understand. But every day that passes, alot more do. Never forget how awesome you are!
July 16, 2018 @ 5:19 am
A wonderful mom either, who dedicates her whole life to her son this way.
May 14, 2020 @ 12:10 pm
You expressed yourself very well, Jack. It is hard to imagine what you feel every day. Have you heard of Paul Meiers. He wrote a book on his experience with Autism, He is a speaker who also expresses what it is like to have Autism. Thnank you for helping us understand. You are blessed to have such a great dad who understands.
May 18, 2020 @ 12:41 pm
This really makes you think , to be understanding with people.