When I was a little girl, I swore I heard your sleigh land on the top of our roof.
I must have been about four years old, five at the most. When I said this—that I knew you had come in the night because I heard your sleigh and your reindeer—my father smiled a funny smile. He turned away with his hand over his mouth.
Back then, I wrote you long, elaborate lists and asked for all the things I wished for—books and lip gloss and when I was older, maybe in the fourth grade, those nylon pants with the zippers. We called them parachute pants, and I wanted a pair in black to go with my white suede ankle boots.
(The boots may or may not have been real suede.)
Now, I’m a mother, and I want different things; things you cannot fit into a box and wrap up with red paper and a sparkly bow and leave underneath the tree.
I want more time.
I want more patience.
I want to understand autism.
Do you want to know what I am doing right now, Mr. C.? Right now I am sitting in my office listening to my 12-year old son Jack whirl and scream and shriek because my husband Joe took away his ITouch after he said a big terrible bad word in the shoe store today even after we have warned him for weeks and weeks to stop saying big terrible bad words.
He’s really wound up tonight. He’s pissed as hell, to put it bluntly, and he’s standing at the top of the stairs screaming odd, disconnected phrases.
“I want. FOR MY OWN LIFE!”
“The Ped Egg. Gets rid of DRY CRACKED skin.”
“I just want to be. Your EVERYTHING.”
This thing that he does, where he repeats lines from commercials and movies and bad TV shows, it’s called scripting. It’s part of his autism. He does it when he’s very upset or stressed out or mad, and he can’t find the words he needs to tell us what he’s really thinking in that complicated mind of his.
He scripts a lot. Like, a lot a lot.
I hate it.
I know, I know, I shouldn’t use word hate, but I can’t help it. There are things about autism that I love, and things that I hate.
I love the unfiltered view of life it provides—the glimpse into a world that is so pure, so honest, it takes my breath away.
I hate the repetitiveness and the way he asks me the same question nine-hundred million times an hour.
I love the way he glances up at me and smiles really fast when I call him my Jack-a-boo.
I hate the scripting.
I hate it because it’s not a real conversation. It’s not a traditional dialogue, or an exchange of ideas and opinions.
The thing is, I just want to talk to my son. I want to talk to him. I want to sit down with a cup of coffee in my hand while he eats his waffles for breakfast and just chat.
Jack does not chat.
Oh, he gives information, he makes demands, he observes the weather and recites lines from commercials, but he does not make idle conversation.
I want to talk to my son.
I want to know if he thinks the Yankees are better than the Red Sox, and whether cold winter mornings are better than warm summer nights.
I want him to explain to me exactly how it feels when he watches the middle school bus pull up our road and he drops his eyes and looks at the ground and chews his nails because he doesn’t get on that bus anymore. Now he climbs into a small minivan and goes in the other direction to a special school for kids like him even though he hates when we say kids like him.
“I am for. Like EVERYBODY ELSE.”
I want to understand exactly what it feels like to have autism; to jump and stim and rock and worry.
I live with a person whose mind I may never know and whose heart I can’t always understand, yet some days I feel as though I hold his future in the palm of my hand.
Right now I don’t know what to do. I mean, I know he said a big terrible bad word, but he’d had a long day at school and then he went to karate and after that he went to the shoe store for new sneakers even though it was cold out and everyone was hungry for dinner but that was the only time we had all weekend to shop.
And when Joe announced that he was taking the ITouch for the evening after he heard Jack shout the big terrible bad word, we all—me and my other four kids—sort of looked at each other like uh oh that’s not going to be good but we didn’t say anything because we knew in our collective hearts it was the right thing to do.
I have a boy who is not like the others. And even though for the most part this is all fine and good and I’ve made peace with it and all that, every once in a while my breath catches in my throat.
I have a boy who finds language—the very cornerstone of communication—confusing and puzzling and mysterious and hard.
I want to talk to my son.
I want to him to tell me if going to his new school is getting any easier at all or if his heart is still broken wide open.
I want to tell him I hope he knows how hugely, achingly proud I am of him for the way he climbs into his minivan every single morning and how much I love his school picture because he looks so sweet, and so happy.
I want to him to know that for all of the scripting, there is no script.
It’s quiet now. There rest of the kids are in bed, and like a toy running out of power, Jack is slowly winding down to sleep. All is calm, if not especially bright.
In just a few minutes, when I’m done writing this letter, I will walk into he kitchen where my husband stands at the counter. I will stand next to him, and without a word, we will embrace. The storm is over for now, but both of us know there will be many, many more.
Yet with enough patience, and a little time, there is understanding.
“I am sorry. For the bad word. I was the maddest.”