I had such a nice time talking with you tonight at the baseball game. You cracked me up with all of your questions.
Once upon a time, I had little boys like you. Now they are big boys. They don’t ask me questions anymore. Mostly, they tell me things they know but they think I don’t know, like how you can say the name of the planet Uranus so it sounds funny. I’m not going to tell you how because you are only six.
I think six is the very best age in the whole world. Six is important. It’s when things really start to happen.
You sat next to me, holding a hotdog in one hand and the ketchup was dripping on your fingers and it was all I could do not to reach over, and wipe it off with a napkin.
We were chatting away and your voice made me smile.
I pointed out my oldest son, Joey, who was hanging over the chain link fence chewing on sunflower seeds. He is fifteen. Fifteen takes my breath away. There is no other way to tell it to you.
My middle son, Charlie, was on the mound. He kept rolling the ball in his hands between pitches. He does that when he’s nervous.
My youngest son, Henry, was running around with a girl who had long, curly red hair. Every time I looked at them, they were laughing.
My daughter Rose was sitting near us on the metal bleachers. She was keeping half an eye on Charlie and the other eye on her brother, Jack.
I told you how Jack has autism. I saw the way you watched him jump. You noticed him rubbing the top of his head.
He just started doing that—the rubbing his head thing.
When I told you about his autism, you looked up at me with your big eyes, and you asked me what that meant.
I know I took a few seconds to answer you. It’s not because I don’t like to talk about my son or his autism—that doesn’t bother me one single bit. It was because I was trying to think of the best way to tell you about it. Because I know if I tell you enough, you could change everything.
I told you it means he has a hard time finding words. This is called a delay in language development.
I explained the way he jumps and hops and rubs his hands together to make his body feel calm. This is called self-stimulation.
He has a hard time making friends because he doesn’t understand the way kids play tag on the playground, or how to start a conversation on his own that doesn’t have to do with a Disney movie. This is called delayed social skills.
If I had to guess, I would say Jack feels unsure a lot of the time. He feels like everyone else is dancing and playing and laughing underneath a bright orange sun, while he stands alone in the cool, dark shade.
I don’t know what this is called.
I told you as much as I could think of, until your parents walked over, and told you it was time to go home.
If we had a few more minutes, I would have told you a story.
I would have told you how, once upon a time, there was a mother who had five kids. Her second son had autism.
He went to a special school to help with his learning. Every day, the teachers sent home a note saying the boy needed to read for at least ten minutes a day.
He hated to read. He told his mother he was allergic to it. He screamed whenever she brought out a book.
She got mad. She told him to sit at the counter while she cut potatoes up for dinner and to read that book.
He refused. It was a never-ending battle, this book thing.
You say it like this: AM-BLY-OH-PEE-YAH.
It means one eye is fine, all la la la, but the left eye is lazy. It sits on the couch eating potato chips, while the right eye does all the work. Because of this, the left eye is getting blinder and blinder, and if you look carefully, you can see it is starting to turn out to the side. The brain has decided the eye is too tired and full of potato chips, and it doesn’t need it any more.
This is called strabismus. You say it like this: STREH-BIZ-MUS.
Once a year, this special doctor has to test the boy’s eyesight to see how much it is changing.
She puts drops in his eyes and shines a light and asks him to look at pictures of animals in a book. He always wants to hold the light for himself because he is kind of fascinated with it.
Then she puts a big chart on the screen and tells him to read it. This visit, the mom noticed something funny. She noticed he skipped over some of the letters. She turned in her chair and asked the doctor why he did this.
Why does he skip letters?
And the nice young doctor answered that it’s because of his AM-BLY-OH-PEE-YAH. She said kids who have this condition usually struggle to read because all the letters on the page crowd together, like so many people standing under an umbrella during a thunderstorm.
She didn’t know. Can you see that? Can you understand? The mom didn’t know that reading was so very hard for her boy. She didn’t know about the umbrella.
All the times she sat with him in the kitchen and told him to stop being so lazy and just read one chapter, please please please just one chapter you can do it Jack-a-boo no more television until you read.
She did not know.
She did not know because her son doesn’t always have the words to tell her the things that are tucked inside his mind and his heart and his eyes.
That, my baseball friend, is autism. It is a lot of not knowing. Also, it rains sometimes.
Autism is wishing there was a magic way to connect all the dots and understand the millions of quirks and conditions and how they affect her tender special mysterious boy.
It is sort of like holding a tiny bird in the palm of your hand. You want to keep this bird safe from the thunder, and yet you long for him to spread his wings and fly.
The woman in the story is counting on you, little one. She knows you can make it right for him.
I am counting on you.
See, you are so young and open and sweet and funny and kind. You could make a difference.
I don’t know how exactly.
Maybe you will watch a kid jump around and think, no big deal, just some stimulation to keep his body calm.
Maybe you will hear a child talk about Disney and how the running time for the movie Lion King is one hour and twenty-nine minutes, and you will think, wow, I’ve always loved that movie.
Maybe you will see a boy whose eye is turning to the side and think, huh, strabismus. You’ll remember the umbrella, and the rain.
There is a light.
You are the light.
Take him out of the darkness.
If I tell you enough, you could change everything.