Hi, my name is Carrie.
I have a son with autism. His name is Jack. He is almost 15 years old. He has blue eyes. In case you were wondering, he is not a savant. He does not possess some exceptional skill in math. He doesn’t swirl colorful blobs of paint into masterpieces, and he’s not the least bit interested in the piano.
Jack has regular old autism with limited theory of mind and self-stimulating behavior and a tendency to perseverate on random topics or objects. Also, anxiety — lots and lots of anxiety.
In other words, if you tell him you think Coke is better than Pepsi he will corner you and argue how that cannot be the truth until you cover your eyes and cry for mercy.
He rubs his hands together very fast and hops around the room. This helps him regulate his body.
Also, he is afraid of many, many things. At the moment, this list includes fire drills, bad weather, and being late for anything.
I mean, I guess he could be a savant. I never really investigated too closely. That would require cracking through the looping dialogue about Coke products, and honestly, who has the time for that?
He does have a really good memory, though. If you tell him your birthday and then run into him two years later, he’ll remind you that you were born on July 2, 1973.
At the same time, his interests are limited. If it were up to him, he would eat chicken fingers and French fries for every meal. He would watch the first 10 minutes of the same Disney movie over and over all day long, and adhere to a very strict schedule of his own making.
I had to hold him down for his flu shot. Did I tell you that? He is over six feet tall and when the nurse came toward him with the needle he started to cry and flail and I had to pin his arms to his sides and whisper in his ear.
Shhhhh, Jack. Just a pinch, just a pinch, you can do it.
He is getting bigger.
This is getting harder.
Because the entire time I am trying to hold his arms and I am sweating and I am annoyed, I am also sad because I know he doesn’t understand that a shot will keep him healthy.
I love him so much. I know the curve of his face better than I know my own.
The double-edged sword is the brother born one year before — Joseph — an equally tall, lanky boy with green eyes who has one foot toward becoming a man.
The gap is widening. In fact, it is glaring. What started as two brothers 13 months apart has turned into two teenagers who hardly resemble the same species.
I am always thinking about stuff like this. Sometimes I wonder if other autism mama’s brains race the way mine does.
I think about whether or not I am speaking too quickly.
Or if I should let him change the radio station when a song comes on I know he doesn’t like because he has told me 5,900 times he thinks it’s terrible — or if I should make him listen anyway because I like it, and this might teach him some flexibility.
And when I’m not thinking about the way I talk or the radio, I am trying to stay at least five seconds ahead of him so I can anticipate his next move.
Will he ask the cashier if she’s pregnant?
Will he run behind a car?
Will he swear?
He swears a lot. We’ve been working on this for months. No, that’s not true. We’ve been working on this for years.
For me, autism brings a trifecta of sensations: hope, grief, and peace.
Hope is the bundle of rocks I carry everywhere I go.
Grief is the small box of feathers I let myself open every once in a while.
And peace? Well, that is the long, jagged mountain I climb, clutching a bundle of hope and my box full of feathers.
The thing is, we didn’t decide to have a son with autism. We did not choose this, and yet, almost 15 years later, here we are.
We are researching group homes for people who can maybe hold a job doing simple tasks like building widgets or keeping the floors clean at the Salvation Army.
He’s not simple. He may not be a savant, but he’s not stupid, either.
I am not wired for this, can you see that? I talk fast. I don’t like chicken fingers. I am not good at research, and I hate hiking.
I want you to know that I never, ever had preconceived notions about what my children might do for a living. I never observed my toddlers stacking blocks and dreamed of them sitting at an architectural table planning skyscrapers.
I never watched them play baseball and considered a life in the stands, dodging fly balls.
I also never imagined they would sweep floors.
What will he do for the rest of his life?
This is the great conundrum, you see — the big mystery.
I mean, he’s certainly smart but he doesn’t think like anyone else I’ve ever met, and he can’t keep his body still for much longer than five minutes.
What does a person like him do?
How will he fill his hours and his days and his years?
I can’t imagine him baking or cooking for a living because he picks at his face and rubs his eyes too much.
He can’t operate heavy machinery, obviously.
He can’t sort mail at the post office because he would memorize everyone’s address and report loudly at the dinner table about who got a copy of “Playboy” delivered that month.
Menial work. All signs are pointing in that direction.
Maybe not. Maybe he will surprise me.
Oh, I know! At least he’s doing something! It’s honorable work, sorting clothes at the thrift shop and collecting recycling.
And it’s true. It is honorable work. He’s doing something.
Besides, he doesn’t care, so why should I?
I do, though. I do care.
It stings. That’s all I’m saying. Right now I am on the jagged side of the mountain, and I am holding on for dear life.
In the meantime, I wait. Every afternoon I wait for a white minivan to pull up our driveway.
I wait for the door to open, and a big pair of Nike sneakers to step out onto the pavement.
I wait for the boy with the blue eyes.
And as the sun lowers in the cool sky, I just hope he looks my way even once. I hope he tells me something about his day. I hope he is happy.
Grief, hope, peace.
One day, peace.
This story originally appeared on www.carriecariello.com
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