One Ordinary Day
I wrote this piece after conducting extensive research. And by extensive research, I mean asking my son Jack a bunch of questions and hoping he would answer me. All in all, we had some good conversation, which isn’t always the case.
Dear Santa,
My name is Jack Cariello. I am fourteen years old, and I am very excited for Christmas this year.
Lately I am wondering what you bring other kids like me.
Kids who are not interested in the regular things everybody else loves, like Legos and Minecraft and stuffed animals.
Kids who like to talk about one thing only even if it makes other people feel a little crazy.
Now I like to talk about soda and whether Pepsi or Coke products are best and my mother told me this is going to drive her insane.
I am not for sure what insane is.
I guess what I want to know is, what do you bring kids who have autism?
Do they ask you for toys? Or games? Or maybe puzzles?
I have never played with toys, not even Thomas the Train engines, which I think kids who have autism play with a lot.
My mother said I played with the vacuum. Or I didn’t even play with it. I just took it apart over and over again.
I have autism.
Autism can be loud. It can be not cute.
It can be frustrating, and confusing, and scary.
It can be disruptive.
It can be perfect.
This year for Christmas I want a new air freshener. I love air fresheners.
I also want a doughnut pan for making special doughnuts, and some new popcorn seasoning. Right now I have only three flavors left.
But really for me what I want one single day to do whatever I want. This would be the best present ever.
If I had a day to do whatever I want, I would sit in my morning bath until my fingers are wrinkly. I did this once and my arms and legs felt floating and light.
I would go out for lunch and then for dinner and also for a movie at my favorite movie theater, where the screen is not so big and the sound is less loud. I would buy a large popcorn, not a medium like my mother makes me get.
I would take this day to be regular.
For one day, the words would come easily in my brain and I could say exactly what I am thinking.
A day when I do not feel trapped inside my fear like a spider in a web who maybe can’t breathe.
A day to meet another person like me—a person who likes to talk about soda and then sit side-by-side quietly when we are done with words.
There is no other person like me. I have looked. I have waited.
I am lonely.
For one day, I do not want to be lonely.
I don’t want to work and work until I am tired but still there is more work to do.
I don’t want people to tell me to look in their eyes, or to calm down, or to take my deep breaths.
I want to quiet the ants that crawl on my body and make me jump.
For once, I would like to stop jumping. The jumping makes my mind feel crazy but I cannot stop it. I am not in charge of it.
Mostly, I want to know the rules.
The rules are so willy-nilly strange changing all the time and they confuse me.
No one says what they mean. Like the time we were walking in the rain and my mother said to put my umbrella over my head so I held it way up high to the sky because I thought that was what she meant.
Everyone lies.
Do you know this?
Everyone lies when they see someone with an ugly sweater or a shiny bald head or a loud baby.
You cannot say this out loud with your voice. You have to smile and nod your head and pretend you do not hear the screaming or see the shiny head.
But you cannot lie about taking the last cookie, or if you lose your book to the library, or when you didn’t brush your teeth.
There are okay lies and bad lies and I don’t always know the right one.
For one day, I want to be right. Not like winning an argument right, but good and pure kind of right.
Maybe on this day I would not have my autism. But I don’t know who I would be without my jumping and my schedule and my popcorn seasoning. I would not be me. I would be someone else. I do not know if this is bad or good.
Can you see how I long to be nowhere and everywhere all at the same time?
I want to play outside with the other kids laughing.
But I also want to hide in my bed.
I want to hug my father tightly with both arms.
But I don’t want to touch him in case my skin falls off my body.
Can you see me?
Can you see?
For one day, I want you to see me. I don’t want you to look away at your shoes when I do my jumping or stare into the spot next to my head when I talk.
I don’t want you to look carefully at your menu when I walk to my table on my tippy-toes, or put your arm around your child when you see me flap my hands in the store.
See me.
See my autism.
Do not be afraid.
We are here together.
Let me change your mind.
My name is Jack Cariello.
I have autism.
Let me change everything you’ve ever thought in your life before this moment.
Let me stand with you beneath the yellow sky. Different, yet the same.
I want to be ordinary.
I want to be normal.
For one day, I want to be me.
I think no one knows what its like to be me.
Merry Christmas.
soletusknow
December 24, 2018 @ 9:58 am
Jack, thank you so much for sharing your thoughts with your mom and with us. Sometimes we all want to be ordinary.that’s for sure. I’m thankful that you’re willing to share your truly extraordinary thoughts and self. Sometimes ordinary is easier. But I’m thankful for Extraordinary people like you. and…Merry Christmas Jack! I so hope you get some things that you wished for…
Whit
December 24, 2018 @ 5:00 pm
Merry Christmas jack! I wish you your perfect day…
Jeannie Prinsen
December 25, 2018 @ 12:46 pm
Thank you for sharing, Jack (and Carrie). I love hearing about your life and how you see the world. I hope that you have a very nice Christmas with your family.
lily cedar
December 26, 2018 @ 7:16 am
Please tell Jack that he is not alone. There is a 56 year old woman that doesn’t understand the rules either. I don’t fit in and I irritate a lot of people. I can’t stop moving so I cook and bake a lot. Tell Jack he’s not the only one and tell him thank you for sharing.
GP
December 28, 2018 @ 10:59 am
Thank you for sharing your experience! It breaks my heart that the world’s social rules exclude so many amazing individuals. Nobody should be made to feel that they irritate people just because their neurology is different. Our rules must change. Social rules must become more flexible and compassionate. I am sorry for the way you have been treated. My daughter is 14 and already has reported similar things. I will continue to advocate tor her and help her learn to advocate for positive changes in our society’s approach to neurodiverse individuals. You are not broken. You do not need to be changed. Our society’s approach to social rules is what is broken and this approach needs to be changed.
Courtney Turman
December 26, 2018 @ 2:11 pm
Jack, I have an 11 yr old son named Nicholas who would probably love to discuss soda with someone who loves it as much as he does at this time. You’re not alone?. Merry Christmas, Cariello’s!