Last week I wrote a post about Jack and the presidential election. Many people responded, telling me how deeply touched they were to learn about his fascinating life with autism.
Some people asked me if Jack helped or contributed to the letter in any way, and my answer is no, he did not. It’s simply my best guess about how is mind and body and heart feels, based on trying to see the world through his lens for the past eight years.
I told Jack that I wrote something about him, and that people from all over our country wrote back. He was tickled to hear they wrote from places like New York and Virginia and California. He was thrilled to learn that Alicia from Wyoming wrote to say she drives a Chevy Suburban.
And so I asked my sandy-haired boy if I could share more about him, and he said “okay” before he wandered upstairs to study his book about the fifty states.
The following is what I think he would tell the world if he could.
First, I want to tell you I have three brothers and one sister. That makes seven people in our family, which is why my mother drives a red Toyota Sienna and my father drives a black Toyota Sequoia. We call my mother’s car the “red hot chili pepper” and that makes me laugh because I think of us driving around in a vegetable.
Family is very important to me. Whenever my mother and father tell us we’re going to do something fun, like go bowling or to the movies, the first thing I say is can we all go because I don’t want anyone to be left out.
I feel good around my family because they understand me. They understand that I need to ask a lot of questions like what do you speak in Tanzania and how do you say cake in Turkish. They understand when I hit my red zone and I need to scream.
Not everyone understands me, like the time our bus driver, Carl, said very loudly sit back down Jack or you will sit with the kindergarteners. Then, as fast as you can say Indiana, my big brother Joey walked from the back of the bus, with his skinny legs swish-swish-swishing in his pants and his bright orange sneakers blinking down the aisle, and he told the bus driver something softly, something that sounded like autism he doesn’t understand. Then Carl’s eyes and nose and mouth went back to their normal places on his face and he said it’s okay Jack.
Because of Joey, now Carl understands.
My brother Henry is three years old. He’s very loud and he’s always talking and moving and shouting. He has the worst toys, too. They’re very noisy and they start up and scare me. He has a giant Mickey Mouse that’s up to his shoulder and it sings all the time. I put my hands over my ears and scream that Mickey is dumb turn it off turn it off. One time I tried to tape Mickey’s mouth shut with something my father calls duck tape, but Mickey just kept right on singing through a hole in his dumb head.
But sometimes, when Mickey isn’t making any noise and I think no one is looking, I like to bend over really quietly and kiss the top of Henry’s head. His hair is so soft.
I have people who help me at school, but I’m starting to notice not everyone has an aide like Miss Anne. The other day I asked my sister, Rose, if she goes to OT now that she’s in kindergarten and she said no I don’t have it and I said oh you must do your best work that’s why you don’t have to go to OT.
My mother was standing at the counter when I said this and she pressed her lips together so they almost disappeared and closed her eyes for a second. I think that’s her sad look.
I do not like when someone uses what’s called a “figure of speech”. One time we were trying to find a place to park at the mall and my mother said this place is a zoo, so I ducked under my seat because I was afraid an elephant or giraffe might go running by. I think people should say what they mean. She should have said the mall is busy today.
I am very, very scared of dogs. If I see one coming close to me I start to scream and hit my hands on my head. My father tells me just breathe Jack take a deep breath the dog won’t hurt you. I try but when I’m that scared it feels like there’s a snowstorm going on inside my body and everything is all twirly and swirly and busy. The snowflakes don’t settle down until the dog passes me by and I can breathe again.
I just love to make people laugh. If I tell a joke and someone laughs, I’ll tell it over and over and over again. When I do this my mother says don’t be a Mister Tells a Joke Too Much to let me know I should stop.
My parents and teachers use something called social stories to help me get ready for new places and things. I feel safer and calmer if I know things like we whisper in the library and don’t run in a restaurant. I like to know what to expect.
Sometimes everyone in my family talks all at once, so I get mad and yell shut up there are too many voices. But I’m really just saying I want you to hear me.
This week we went to Friendly’s for ice cream, and I had a hot fudge sundae with no cherry. I made sure to tell our server no cherry please no cherry a few times because I really don’t like them. On the way home we saw a Virginia license plate on a black Honda Pilot. My brother Charlie pointed and said look Jack look it’s Virginia! Everyone screamed and shouted and clapped. I put my hands over my ears because it was so loud.
But I was very, very happy and my smile was wide.