My name is Carrie.
I am married to a man named Joe, and we have five children.
Our second son is diagnosed with autism. His name is Jack. He is sixteen.
I am equal parts mother/wife/advocate.
I mean, I try to be equal in all of these parts, yet sometimes I feel as though I am robbing Peter to pay Paul, if you will.
Autism demands a lot of me, is what I am trying to say.
Last week Jack had the day off from school. He wanted to go out for lunch.
Specifically, he wanted to go to the exact same restaurant we always go, so we could sit at the table where we always sit, and he could get the chicken fingers he always gets.
But I wasn’t in the mood this time. I can’t explain why. I suggested a different restaurant that has good cheeseburgers.
He was not what you might call receptive to the idea.
When it comes to autism, I like to think of progress as steps on a staircase. You jump up and feel really good and happy and maybe a smidge smug—we got this!—and then, you stand still for a while.
We are standing still right now. We are standing on our step and longingly staring at the next rung.
For a solid ten minutes, he stood in the kitchen and ranted and raved. He would not go somewhere new, absolutely not how ridiculous for me to even think it.
There was stomping, and swearing, and overall angst.
We argued and bickered on our way to the car. I insisted yes and he insisted no but I insisted more and told him something new would be nice for a change and he said change is stupid and, in that moment, I couldn’t help but agree just a little.
And yet I could not let it go. Like a dog with a bone, I latched onto the cheeseburger-restaurant idea and headed down the driveway while he seethed in the passenger seat.
This is how it is. This is how to goes with me and autism. I start from a place of hope, but often wind up in a place of despair.
Once we walked into the restaurant, I felt a pang of regret.
We sat at a table off in the corner.
He was rude to the server when she asked for our drink order.
I tried to catch her eye and give the head-tilt-shoulder-shrug to convey a wry sense of amusement mixed with a small plea of understanding.
He barked out a request for root beer, and once she walked away, he told me how stupid this all was and the cheeseburger sounded stupid and he wanted his chicken fingers
In these moments with my son, of which there are many, I tend to doubt everything about the universe there is to doubt—goodness, grace, compassion, hope.
I mean, why does it all have to be so goddamn hard?
What is wrong with me? Why do I have to be so stubborn?
He asks for so little—a lunch he enjoys, in a familiar space where he is comfortable, with lots and lots of ketchup for his fries.
I do, though. I have to be stubborn. I don’t have a choice.
I have to teach him how to be flexible and show him he can try new things and he’ll be okay.
And at the same time I teach him, I have to explain to the people around us that he has autism and he is trying and some things are a little hard but don’t worry, he’ll be okay.
It is exhausting. It requires every molecule of my being.
I want more for him.
I want him to reach beyond the rigid limitations autism imposes day after day.
I want him to leap and discover and learn.
I want him to try the cheeseburger.
This is the life we live. It is the sticky place from which we have to unstick ourselves. It is often messy, and unbeautiful.
We have to do the work.
I hate the work.
It’s too hard.
But I do it anyway.
I do it for him, even if he doesn’t quite see it that way.
I do it because he is worth it.
And every once in a while, when I least expect it, hard gives way to good. A small triumph even, on the car ride home.
For me the cheeseburger. Was very good.
I love him with the fiercest, most tender heart.
He will rise to great heights. I just know it.
He is trying.