Hey there! It’s nice to see you! I know, it’s so warm out today! Feels like spring.
I do, I have five kids. Did we plan on that many? Well, not exactly.
We’d had our fourth—our only girl—and then my husband, Joe, made an appointment. You know, the kind of appointment a man makes when he and his wife decide they are finished having children, even if the man comes from a big family himself and begs and begs to have another baby.
Sometimes, a wife has to put her foot down, even if it’s only metaphorically speaking, don’t you think?
A few days before the, uh, procedure, the doctor called and canceled. Nine months later, I had a 10-pound baby boy. His name is Henry. He’s eight now. So much for putting my foot down.
Yes, that’s right, my second son is diagnosed with autism.
No, no, I don’t mind talking about it. Not at all. It’s not a secret. Even he knows about it—he’s known for over two years now.
How did he get it? Well, we think he was born with it.
Well, no, I don’t know for sure. No one knows for sure where autism comes from or why there is so much more of it now. That’s one of the worst parts about the whole thing. There’s no one, or nothing, for me to blame. There is nowhere for me to direct my occasional anger.
But yes, we—Joe and I—believe Jack was born with it. See, he was unusual right from the start. He cried constantly. He never slept. It always seemed like he wanted to jump right out of his own skin. I don’t know how else to describe it.
After a while, we realized he never looked at us. He never made those funny baby noises or gurgled or anything. And then he never talked, or played patty-cake, or even peek-a-boo.
When I think about it, his symptoms were pretty classic.
What is it like, to raise a child on the spectrum? Well, that’s a good question. I’m not sure what to say. I mean, it’s kind of complicated.
I like to imagine autism as half of a yellow sun in a wide, open sky. There is coolness, and shade. And then there is hot, blinding light.
There is paperwork and therapies and appointments. Lots and lots of appointments.
What is the hardest part? Huh, I’m not sure. I need to think about that a little.
I guess one of the things I struggle with the most is trying to decide which of his behaviors is related to autism, which is just Jack being Jack, and which is Jack being, well, kind of a jerk.
Does that shock you? That I said that? Let me try to tell you what I mean.
Last week he screamed for an hour straight because he didn’t want to go to the Outback for dinner. You know, the steak place? For the life of us, we couldn’t figure out why.
Was there something in the Outback that bothered him and he couldn’t tell us because once he gets stressed out—deregulated is the actual term—he can’t find the words?
Were the lights too bright, or did they play only classical music? Lately he hates classical music. He says it makes him feel weird.
Or did he bite his tongue the last time we went there and now he’s afraid that might happen again?
Or was he just pissed because he wanted to go to Bertucci’s because he loves the rolls there but no one else in our family felt like Bertucci’s, so we said we would eat at the Outback?
When it comes to Jack, you just never know. We snoop for clues like detectives in the dark.
And it would be so easy to say, ok, Jack, calm down, we’ll all go to Bertucci’s. You can stop crying now and maybe I can think for one goddamn second without you screaming in my face.
But I can’t do that.
When I was a little girl, my mother grew peonies in our backyard. You know, those pretty flowers that smell so sweet? They were white, and every spring they came up next to this old barn of our neighbor’s that always looked like it might collapse any second.
I used to love to walk in the yard in the afternoon and find them next to the barn. I would cup the silky blossoms in my hand, and breathe in the scent.
They grew in a tall cluster, and if it was breezy out, they would sway together gently.
Now, almost thirty-five years later, I think about those flowers. They remind me of my own family. See, we have to take turns swaying, no matter which way autism’s wind blows.
But yeah, it can be hard.
Then there are the whispers that I hear in my brain all day long.
Will he ever have a friend?
Is it okay for him to be on medicine for so long?
How on earth will this boy ever get a job and earn money when nothing motivates him and he has no desire whatsoever to do what people ask him to do unless it’s something he feels like doing and even then in it’s a struggle?
He really needs to stop spending so much time in front of a screen but it keeps him calm and if I take it away he goes nuts and it’s a good way for him to stay in touch with people because he sends the funniest texts.
I guess you could say that raising someone with autism is a little like always trying to look beyond your front door, even as someone slams it on your fingers.
We don’t give up though. I know, that’s such a funny thing to say because it makes it sound as though we do big important things like walk the streets of Washington demanding new legislation or invent software that make devices disappear into thin air on command.
It’s different for us. For our family, the not-giving-up part is in the details. It is the small, every-single-minute-of-every-single-day actions and reactions; the way the wind pushes and pulls in any old direction.
It means I never stop trying to look beyond my front door to see the peonies, even if I have to blow on my fingers to stop the stinging.
It took us four tries to get him to the table.
He sat down and sighed a big huge sigh. Then he ordered the cheeseburger. He always gets the cheeseburger with no lettuce and no tomato, and he puts a lot of ketchup on it.