(Note: I wrote this based on some conversations with my son Jack, as well as things I’ve observed about him over the past few months.
This is by far my favorite way to write, because it gives me a chance to try and understand the world from his point of view, and experiment with the unique way he uses language.
It is a chance to imagine what extreme deregulation might feel like for an 11-year old boy with autism, and how he manages his day with less sleep than most.
Jack read it over once, and the only thing he said was, “Mom. For colors. They can’t be loud. They don’t make noise.”)
Last week my family went to a place called Turks and Caicos. This is an island in the Caribbean and it took two planes for us to get there. It was a long ride but they showed the movie The Good Dinosaur.
We went last year too. Last year they showed Big Hero Six on the plane.
Caribbean is a funny word. Some people say Cari-BEE-an like there is a bumblebee buried inside of it, and other people say Ca-RIB-bean.
Sometimes my mom likes to keep trips a secret, but this time, on Christmas morning, after we had opened all the presents and the wrapping paper was everywhere she said, “Oh, wait! There’s one more!”
She pointed to the tree and in between the high branches there was an envelope.
My mom and dad tried to tell us Santa gave us this trip, but I know this can’t be true. I told her Santa doesn’t plan trips, and my mom laughed and said, “Okay, Jack. You’re right.”
I was excited to go to Turks and Caicos in the Caribbean, but I was also very worried that I might miss something in school, like a movie or a fun game or maybe the science experiment where we went sledding.
I hate to be left out of anything.
I already don’t take a foreign language like French or Spanish because I have to go to something called support class, and for a while that made me upset. Now I am okay with it because I like my support class a lot. We play a game called Kahoots there.
My mother and father spend a lot of time telling us they didn’t get to go on big fun vacations when they were our age. They say, “You guys are so lucky, getting to go to Turks and Caicos!”
Or, “You should really appreciate going away like this.”
To me, their words sound as though they are sitting under other words—like a caterpillar sliding around underneath the tall, prickly grass. I can’t always figure out what the underneath words mean.
I think they mean we shouldn’t be greedy.
I’m not exactly sure what greedy means, but it has something to do with taking too much for yourself, like the time I put four brownies on my plate at my brother Charlie’s football picnic. They looked so delicious with vanilla frosting, and I was hungry.
My mother leaned down close to my ear and said; “Jack. That’s too many brownies!” Her breath in my ear was hot and itchy and I used my shoulder to shrug her away.
I put two of the brownies back on the tray and she whispered-screamed again in my ear. “Jack! Don’t put the food back if you’ve already touched it!”
I was confused and I could not figure out what she wanted from me. To give them back? Or keep them and be greedy?
This caterpillar, he hides on me.
Sleep also hides on me. Every night I take two little white pills, and also another white pill called melatonin so my brain can quiet and my eyes can close. Then I listen to a radio show called Delilah. She broadcasts from Seattle and her voice is soft and nice.
I have to shut my radio off at 9:00 pm so I can try to sleep, but I move and fidget in my bed for a long time. Sometimes at 2:00, or 3:00, or 4:00 in the morning, my eyes open—bing!—and I can’t get them to close anymore. I turn on my radio really really quiet again, but Delilah isn’t there. I don’t know where she is.
I am tired a lot.
When I am tired, the world and I are like opposites; the more tired-er I get, the more energy everything else around me has. Everything is faster and louder and quicker and sharper, and I can’t keep up with it.
People keep asking me what’s wrong.
what’s wrong what’s going on why are you so upset why did you do that throw that scream that
It makes me madder when people ask, because I don’t know what’s wrong with myself. All I know is I have been wrong for a lot of my life.
I told my mother this the other day. I said, “For I am just wrong. Always.”
Her face got twisty. “Oh, Jack, buddy, you aren’t wrong. I just want to know if something feels wrong, you know like hurts—”
“No more,” I said and walked away from her. When people start to talk fast-like with a lot of words my brain can’t think and I just have to stop it. I wish people had a volume button the way the remote control has for the television. That way I could just turn them way down when they get so loud in my ears.
On Thursday, January 28th, I had a hard day in school. My mom says I became deregulated. I’m not positive what deregulated means, but I call it my fussing.
At 2:07 in the afternoon I wanted the computer very, very badly but I could not have it because I had to finish my stupid terrible work first.
I could not think about anything but the computer. I could not write the answer to the science question on the piece paper even though I knew it was refraction. The word refraction was sitting right there in my brain, but it was squashed by a lot of other words.
computer computer not without me come back I want to go for computer
My mother says this is because sometimes, I get like an elephant in my brain, and he is big and huge and takes up all my thoughts. I think this time, the elephant was the computer.
My heart started whooshing and all the colors of the room turned loud and bright. People were talk-talk-talking to me but their voices sounded very far away like they were standing on the other side of a busy street.
Jack calm down take a deep breath Jack listen to me listen Jack I will help you Jack
But I can’t listen because I can’t hear. The whooshing and the colors and the buzzing are all too much for me and I have to scream and throw and push and jump.
I don’t know who I am. I am lost.
Then everything turns all white and empty. I am empty and the room is empty because all of the kids left with their serious-like faces and their quietness and the only thing I can feel is my heart in my body and a noise in my ears like water, or a vacuum cleaner.
Then my mother walked in, and looked up from where I was sitting on the floor and I said to her, “I fussed.”
She wrapped me in her arms gently, like I was an egg that might break open. I felt her sadness and her love and her safety right through my shell.
I could not wait for our vacation. I talked about it and talked about it and worried about what to bring.
My mom said, “I know, Jack. I’m excited for vacation too.”
After one plane and then another plane and something called customs with a very long line and luggage and a shuttle and another medium line, we got to our rooms. We took off our hot sticky winter clothes and put on our orange and blue vacation clothes and we walked straight to the water park, all seven of us together.
I stood at the top of the biggest slide and I smiled. I felt a way I hadn’t felt in many months and days and weeks. I don’t know what the one word is to tell you about it. I need many words.
Here on the top of this slide, I am not wrong. I am not left out. I am not tired.
There are no quiet faces or empty classrooms or whooshing hearts.
Like a slow caterpillar who has turned into a butterfly, I am my silly happy sunny self again.