In our house, we are really excited about Christmas this year. Our tree is up and the elf named Cooper is out and every night we eat dinner off of our red and green plates.
My older brother Joey is acting a little weird though. Whenever we talk about reindeer and elves and presents under the tree, he just smiles and gets kind of quiet. It’s not his regular smile either, but a smaller smile, like he’s thinking something in his head and the rest of us don’t know anything about it.
One time I heard him and my mother whispering and I don’t know what they were talking about but he was saying something like he’s almost twelve, don’t you think we should tell him and she said, not now, let him have this, let him believe.
Whatever. That’s a new thing I say sometimes—whatever. I’m not sure what it means but I hear it on television shows so it must be important.
I can’t stop thinking about the naughty list. I am so scared I’m on it and I ask my mother about a hundred times a day, because I am sometimes bad but I’m trying to be good and it’s very confusing and I get mixed up.
I do things that seem naughty—like jump around in church and wake everyone up early and scream a lot if the grocery store doesn’t have the exact frosting I pictured in my head.
My mother told me the percentage of people with autism is growing and growing. I didn’t know what a percentage is and she said it means there are more of us every day, like tall oak trees in a forest full of maples.
She said that on the floor of the forest there are all these twisty vines, and whenever people look up to admire the oak trees and the maple trees growing together, the vines catch their feet and make them trip, so they can’t see our strong branches and soft green leaves.
I’m not sure what this story is supposed to mean exactly, but I think I’m supposed to be one of the trees and the vines are supposed to be my rigid loud screaming autism and the people, well, they are just the people.
My friend Miles has autism like me, except not like me because he’s a great big teenager with red hair. He only eats food from McDonald’s. Even on vacation and in airports—just chicken nuggets from McDonald’s. That, and a certain kind of spaghetti from the grocery store but then they changed the label on the box so he stopped eating that too.
At first I thought he was lucky. I mean, I love McDonald’s and it would be good if my mom took me there every day.
Then I thought maybe his mom was lazy and she didn’t want to cook a lot, or maybe she didn’t care what he ate, which would be kind of nice too because sometimes I get really tired of my mother telling me to finish my broccoli or to try a piece of steak.
I also thought Miles was just naughty and bad. I thought he’d figured out a way to get his mom and dad to take him for chicken nuggets all the time so he wouldn’t have to eat green beans like the rest of us.
But while we were sitting in McDonald’s, I watched how Miles took each of his nuggets out of the box one at a time and examined them all serious-like, and then I understood. He was afraid.
He was afraid of his food the way I’m afraid of lightning, or blue water in the toilet bowl, or Brazilian wandering spiders. No matter how many times my mom and dad tell me it’s all right, lightning can’t hurt me and there are no wandering spiders in New Hampshire, I can’t stop listening to my afraid-ness because it has it’s own voice.
People like Miles and me don’t have a choice–no matter how badly we want to watch the lightning light up the sky from our bedroom window or take a bite out of a warm chocolate chip cookie, afraid-ness will not let us.
I felt sad for Miles when I watched him do that. I felt sad for all the things he has never tried and that taste so good and make me feel happy, like cold ice cream on my tongue and crunchy carrots dipped in ranch dressing.
I love to eat ice cream every night after dinner. I don’t know how to explain what I love about it so much, but to me it’s like a sunny blue sky after a rainy day, or an exclamation point at the end of a long, boring sentence.
Santa, I don’t know if I’m on the naughty or nice list. I haven’t been so good lately. I’ve been saying my swears again.
I sweared at my mother in front of a bunch of people at my brother Charlie’s basketball game last week. It was half-time, and I was feeling very mad because they buzzed that loud stupid buzzer before I was ready, and then my mother asked if I would like to throw the ball at the basket like the rest of the kids who swarmed onto the court like a bunch of busy bees.
“NO! I am a FAILURE at basketball! SH*&!”
Her mouth got all tight and pressed together like the time we tricked her and told her to close her eyes because we had a fun treat and then we gave her a very sour jellybean.
As soon as we got home from Charlie’s game she made me come outside with her and play basketball. I was very, very mad but she didn’t care one bit.
“Just one, Jack. Just make one basket and we can go inside.”
So after lots and lots of tries I finally made one. And I laughed out loud even though I had tears in my eyes and gladness and sadness and madness were all swirled inside of me like angry messy hot bright orange red blue paint.
The other day I came home from school and the first thing I did was ask my mother, “Why do for children. Think Christmas is the favorite time of year.”
And she said, “Well, I think because everyone gets presents, Jack. Isn’t Christmas your favorite time of year?”
“Yes. But no maybe.”
“Why? What don’t you like about Christmas?”
“I hate winter. I hate for the cold winter. I hate cold.”
We didn’t talk anymore about this but later that night I heard her tell my dad what I said. I was supposed to be in bed but I was sitting on the stairs looking to see if that elf really does fly around our house like a bird. I was sneaking, even though my mother always tells me not to sneak.
My dad asked her, “What’s the big deal, honey? Why are you so upset? Lots of kids don’t like winter.” I could just tell by the way he was talking that he had his arm around her shoulder.
“Yeah, I know.”
They were quiet for a long time after that and I got tired so I sneaked back to bed.
I got under my covers and I thought about my mother talking to my dad in that funny voice. I know what she was thinking. She was thinking about all the kids who grow into grown-ups, and then they get to choose where they want to live. They choose based on what kind of climate they like and the careers they have and if they want to live in a big loud city or a quiet little town. They move for boyfriends or girlfriends or whatever.
I may never get to choose where I want to live. I may never get to tell everyone good-bye I’m moving to sunny Florida because I like it better than New Hampshire!
There are so many things in this world I may never have, but that doesn’t mean I will ever stop wanting them.
I want to be good.
I want to be happy.
I want to be warm.
These vines, they hold me back too.
Yesterday I walked into the kitchen and my mother said, “Jack! Guess what!”
She was all excited and talking fast and she knows I hate guessing things, so I just said, “WHAT.”
She asked me if I remembered Miles, and I thought back to the tall, skinny boy and his chicken nuggets and his afraid-ness.
Well, Santa, Miles has begun to eat. Slowly, one new food at a time.
First, his mother’s homemade macaroni and cheese. Then pork chops, and apples, and spaghetti from any kind of box. Pumpkin pie spice is his favorite kind of ice cream.
Somehow, some way Miles quieted the voice in his brain and this is a very, very good thing.
It reminds me that I am bigger than a percentage. We are more than a list.
People like Miles and me, we are fear and change and triumph and heartbreak all wrapped up like a big shiny present.
We have people in our world who push us to the edge of our afraid-ness over and over again; people who nudge and cheer and love and try. Like flowers on the forest floor, they crowd out the vines and draw down the sunlight, so we may someday reach out and touch the sky.
This morning before school I was sitting in the kitchen with my brother, Joey. He was buttering his toast because he really, really likes toast. Sometimes he licks the butter off the knife and my mom hates it when he does that.
I asked him right out, “Do you think. We are on the naughty list.”
He turned slowly and looked at me. He smiled—not his thinking smile, but a soft, slow smile like a candle was lighting up inside his heart.
He said, “I don’t know Jack. But I bet if we’re very good from this point on, we’ll be just fine.”
I hope he’s right.
(Note: I wrote this post from Jack’s point of view based on conversations I’ve had with him over the past few weeks.
Our friend Miles is nearly twenty, and he has struggled with severe food aversions since he was an infant. The New Hampshire state nutritionist said it was one of the toughest cases she’d ever seen.
When he was eight, he ate nothing but corn chips and water for over two months.
When they traveled, his parents, Terri and Joe, had to ship food to their destination so they could be sure Miles had something to eat.
When he was in tenth grade, they started an intensive food program to introduce new foods every month. He cried.
Some days, Terri and Joe worried he would simply stop eating.
Then one day, after he graduated high school, Miles said he didn’t want to go to McDonald’s for dinner. He wanted to stay home for his mother’s macaroni and cheese. Slowly, he began to try new foods on his own.
The other day he asked to buy a lemon, just to see what it tastes like.
Miles’ story is a poignant reminder of hope, of progress, of flowers and trees and sunlight and sky.
Have a beautiful Christmas.