Listen, I know who you are. And although I can’t see or touch or feel you, I have looked you square in the face for the past ten years.
You are a mystery—an enigma—and you baffle teachers and therapists and coaches and bus drivers. You baffle me. And yet, I feel I know you almost better than I know myself.
You are smoke and mirrors. You are illusion. You are the last kid out in a dodgeball game, ducking and weaving and escaping until the rest of the players give up and go home.
You are the panther who demands melatonin for six hours of sleep at night.
You are the cruel snake of anxiety, winding and curling around my child’s soul, whispering nonsense about dogs and wind chill factors.
You are the thief trying to steal my son from me.
You are Autism.
And I hate you.
That’s right, I said it. Autism, I hate you.
I hate the way you make him touch all of his food and dip his fingers in every glass of milk before he can take one taste.
I hate that he won’t play sports because of you.
I hate how lonely you make him.
I hate the way you force him to painstakingly search for words while the rest of the world rushes over him in a tidal wave of jokes and irony and dialogue and language.
I hate that his poor brain is always turning, churning, obsessing, racing from maps to music to when Smucker’s first made strawberry jam. I want to scream at you to leave my son the hell alone; to let his mind rest for just one second.
I mean, honestly, he doesn’t even like strawberry jam.
And how about his body? Why can’t you just let his body be still? Watching you operate his arms and legs and hands, making him stim and jump and grunt through every room, is like watching a puppeteer control the strings.
I hate the way you make me feel. With you around, I am stupid and tired and useless. I am unsure.
Last week our family of seven drove to Connecticut to visit my sister. Please, don’t even act like you don’t know what I’m talking about, because I know you were there.
I know because for almost the entire two-hour drive, my sandy-haired son sat in the second row of our minivan and demanded we play and re-play the same three songs over and over, at precisely the same volume. If it wasn’t the right song in the right order at the right level, he shrieked like a madman.
You drove all of us crazy.
I want to tell you a secret. I know you think you keep all the secrets, but I also have one: every once in a great while, when I’m frustrated and lost, I go up into our bedroom and I cry. I sit in the big leather chair in the corner by the window and I cry for the boy who wants to live alone but may not, who wants to cross the stage during graduation and have play dates and open his own bakery even though at 10 years old, he doesn’t understand money. I cry for his naiveté and his innocence, and the way his heart and mind cannot keep pace with his tall, growing body. I cry for the boy who might have been.
You and I, we spend the day engaged in a tug-of-war, except instead of a long rope, we each hold one of his hands. I pull him toward me—into a world full of high school diplomas and karate and dollars and cents—and you yank him backwards into a dark spectrum abyss where apparently Nicki Minaj holds concerts around the clock.
About an hour before we got to my sister’s, you released your hold over my son and let him sleep. When I looked into the backseat and saw how his face had relaxed, his breathing settled and his eyes closed, I felt grateful he could rest.
But you woke with a vengeance ten minutes from her house.
“Why? Is the radio off? Where. Are my songs. Turn them on turn them on turn them on.”
“Her dogs. The dogs! I don’t want to see them.”
“Jack! Come on! You aren’t afraid of dogs anymore, remember? Now that we have a puppy?”
But you couldn’t let it be, could you, Autism? You sidled up and grasped his fingers.
“No,” my 10-year-old son whined and cried in his unusual grammar. “No dogs! No dogs! Put away them! Into the basement.”
After about two hours at my sister’s house, we both grew tired. I don’t know about you, but I had a headache.
I could feel you, sitting next to me on the couch watching all of kids play and dance and open presents. I could practically hear your ragged, uneven breathing. But for the first time all day, we each let go of his hands and stepped away.
And as we slumped against the cushions, I noticed her dog—a big chocolate lab with a graying muzzle—lying in the middle of the floor. I saw my tall boy step carefully around him at first, then over him, then plop down next to him with a sigh.
And I realized that I can’t live with you and I’ll never live without you, because I know you aren’t going anywhere.
And neither am I. You must believe me, Autism, when I tell you that I will never pack up my ball and go home.
But sitting with you on the tan couch in my sister’s living room, I thought that maybe, maybe, we can be friends. Tentative, reluctant, quiet, unlikely friends.
You are giggling now, Autism, I know you are. You are smirking and grinning in the dark corner. Your eyes are shining at me like the smuggest Cheshire Cat. You know. You know I could never hate you.
Because, like the quintessential tug-of-war, I too am pulled in two directions at once.
For all the things you make him—rigid and bossy and lonely and sad—you also make him funny and lovable and charming and smart. In some absurd way, you make him whole. To love him is to love you, too.
And oh, how I love him.
Once in a while I cry for the boy who might have been, but every single day I smile for the boy who is. I smile, laugh, chuckle, giggle, and love.
I know who you are.
You are the quiet joke at the dinner table that takes everyone by surprise.
You are the quick one-armed hug from behind and the first bite of sweet chocolate cake.
“Mom. This one. I did the frosting on myself.”
You are opportunity and risk and chance. You are possibility and hope. You are progress.
You are the 10-year-old boy in a red turtleneck, his arm slung casually around a big, gentle dog.
You are Jack.
In peace and friendship,
Related post: A Letter to the New Autism Parent