My 13-year old son Jack has autism. Over time, people have asked me many, many questions about both him and his diagnosis.
Is it mild?
Is it severe?
Is it, you know, bad?
I never, ever mind when someone asks me a question. In fact, I love it. I want to tell you all about him and what he does and who he is.
I want to tell you that some days are bad and other days are good, and right now it’s kind of in-between because he won’t stop singing Ring Around the Rosie over and over under his breath. It’s driving me a little nuts, to be honest.
I want to tell you that today he insisted we buy blue Jello when we went to the grocery store, and I was tired and kind of not in the mood to argue with him so I agreed. I told him we would make it later in the afternoon—4:00, to be precise, because with Jack you always have to be very, very precise—and when we got home I hid the box so he wouldn’t obsess about it.
At exactly 3:42 he began to circle the kitchen. I told him he needed to wait a few minutes.
At 3:54 he started to flap his hands and rub his hair and chant Jello Jello Jello. I told him to hang on and I would get it out for him.
Then I couldn’t remember where I hid the dumb box and he was frantic and we were both looking through all of the cabinets until I remembered—a-ha!—that I hid it in the coat closet. He never thinks to look in the coat closet.
If you ask me what the hardest thing is about autism I will tell you that, besides losing things in the coat closet, it is the perpetual cycle of mourning I experience.
I mean, I no longer really mourn the fact that he’s diagnosed with autism. But as he gets older, I find myself grieving the smaller, more subtle losses. They are like a paper cut that never heals—not bad enough for a Band-Aid, but damn, it stings.
It happened just the other night. It was the kind of gorgeous summer evening where the sun casts long, rich shadows across the lawn and kids stay up late past their bedtime and the air feels like velvet.
By 7:00, Jack was sitting in his bathrobe at the counter, eating his nightly bowl of ice cream and talking about which Scooby Doo episode he was planning to watch before bed.
I thought about all the other teenage boys who were probably out at sleepovers or playing in the yard with friends or making google eyes at neighborhood girls, and I felt so overcome with sadness that I had to look away.
Listen, I don’t want you to feel sorry for me, or for him. I just want you to know that once upon a time, I wanted the same things for my son that you want for your own children.
I wanted trophies on the mantle, and bashful chatter about cute girls. I wanted him to go to college.
I wanted to shout across the lawn that it’s getting dark, and it’s time to come inside. I wanted him to argue with me for five more minutes with his friends, please Mom, just let us finish this game!
Jack has no friends.
He hates games.
I’m not sure about the college thing. I’m trying not to think that far ahead.
Ask me anything. I mean it.
He looks so normal, how can he have autism?
Kids like him need routine, right?
Do loud noises bother him?
Does he have a hard time with the tags on his shirt and stuff?
Yes, he can look normal for a few seconds at a time, when he’s occupied with his I Touch or watching TV, but then the music within his body beckons to him, and he springs up, and begins a mysterious dance to a song only he can hear.
Yes, he needs routine. He needs routine the way you and I need air. He can’t breathe unless he knows what time dinner is and when his bus is coming in the morning. His schedule makes him feel safe.
Yes, loud noises bother him. He wears headphones to the fireworks on the fourth of July, and also when he makes a milkshake because the blender is too loud.
He can use a blender, as long as I’m in the kitchen with him.
He loves milkshakes.
The funny thing is tags don’t bother him at all. He can wear almost anything. He prefers turtlenecks in the winter because the neck is high and I think it makes him feel cozy, but otherwise he wears just regular clothes.
That’s autism for you. There is no prototype. There is no one-size-fits-all. There are just a lot of turtlenecks and headphones.
I want to tell you how yesterday he recited the entire product overview of the Toyota SE Minivan, and explain that it is for people who hesitate to invest in a minivan because they prefer something sportier, yet when I asked him what the word hesitate means, he didn’t know.
How do you do it?
If you ask me this, I will tell you that I don’t have a choice. Day after day, I have to hide Jello boxes and explain what it means to hesitate. I have to swallow the lump in my throat and rinse out the ice cream bowl and kiss my tender boy goodnight, all while the sun lingers warmly in a tangerine sky.
You would do the same. I know you would.
And it’s really not so bad. You kind of get used to it, and before you know it you’ll be driving in the car or washing the dishes, and you’ll realize you haven’t thought about what life would be like without autism in almost a week. Or maybe days. Either way, you haven’t thought about it in a while.
I think if he could tell you, my Jack-a-boo would say that for him the hardest part about autism is knowing he doesn’t quite belong. He is different, and knows he’s different, and he hates being different, but he has no idea how to make himself the same.
In the nicest way possible, I will tell you not to take any of it for granted. I will tell you to try and enjoy all the small moments I will miss—like arguing with your teenager about an after-dark curfew and whether or not their grades are going to help them get into the right college.
How do you help him?
What does he like to do?
Do you take him places?
All day long, I think of new things for him to do, like organize the bikes in the garage, or help me figure out how much milk we need to get through the week. He gets mad at me, and sometimes I get mad back at him, but I do it anyway. I do this to remind him that he is stronger than he thinks he is.
I bring him as many places as I can, like the bank to make a deposit, or kayaking on the lake, or to buy corn at a farm stand on the side of the road. I’m not going to lie. It is a lot of work. He gets mad at me and sometimes I get mad back at him, but I do it anyway. I do this to remind myself that I am stronger than I think I am.
Once we get to all these places, I introduce him to everyone around us. I say, hello, this is Jack and then I tell him to ask for a kayak and count out the money and wait for his change. It’s not always easy. Sometimes people stare at us and Jack stares back at them, but I do it anyway.
I do this to remind all of us that when it comes to those who are different, we are stronger than we think we are.
You can ask me anything. I promise, I will do my best to answer.
When I’m done telling you everything I can think of to say about my sweet, earnest, complicated son, I’ll probably pause for a moment. Then I might ask you a question.
Will you help him belong?