My 13-year old son Jack has autism, and every day I read something new about what caused it.
In the past week alone, I have seen the following headlines:
Women of advanced maternal age are more likely to give birth to children with autism.
Air pollution is the leading cause of autism.
Don’t use Windex.
I was barely thirty when I had Jack.
I don’t think I used a lot of Windex when he was little, but I can’t remember because I was so tired. He didn’t sleep for more than an hour at a time.
I’m not sure about the air pollution.
All of this speculation gets on my nerves. I know it shouldn’t, but it does.
On one hand, I want to say I don’t care where it came from–that ship has sailed for us, so to speak. He has it. I live with it. It makes my heart swell and soar and break on a daily basis.
That’s selfish, I know it is. It’s selfish to think it doesn’t matter where it came from, just because I can’t prevent it in my own life.
The thing is, I do care. I care very much about where autism comes from because my children will probably have children and then their children will have children and if we can somehow prevent it, well, that would probably be a good thing.
Or would it?
Would it be a good thing to prevent?
Is autism so terrible and scary and awful and bad that we should figure out the exact reason why it exists and so we can try and make sure it never happens to any one else again?
I guess so. Probably.
I don’t know.
You know what I’d love to prevent? I’d love to prevent that sick feeling I get in my stomach sometimes—like just the other day, when I was filling out a bunch of forms before for school. It had the usual questions about allergies and stuff, and then there was a space for me to list siblings. But I could only list four of my kids because Jack doesn’t attend our public school anymore.
This feeling I get, it’s a cross between a thousand butterflies spreading their nervous wings and a sucker punch right underneath my ribs.
Standing in my kitchen holding a pen, I wanted to shout that I have five kids but my second son has autism so he doesn’t go to public school because he couldn’t make it in public school. As hard as I tried, I could not keep my ducklings together.
It was a heart-wrenching decision, but we’re mostly over it and he’s doing really well even though every night at dinner he asks his three brothers and one sister what they had for lunch in the cafeteria, and if they saw any of his old teachers, and whether or not they had a fire drill.
It’s the little things, isn’t it? I mean, all day long I talk about autism and medication and anxiety and therapy, but when I go to fill out one dumb form, it takes my breath away. I have no time to dodge the punch. I am undone by those beautiful translucent wings.
I’d love to prevent him from reaching into his glass and fishing out the ice and playing with it in his fingers until it melts all over the table.
I’d love to prevent his sadness, and isolation, and loneliness.
Anyway, I do care where it comes from.
But I care just a little but more about where it’s going. I mean, where is this all headed?
What does his future look like?
What does my future look like?
Will I ever open my eyes in the morning to complete and total silence, instead of the heavy thump-thump of him trudging down the stairs at 5:00 am?
Will I ever be able to walk into my house and toss my keys carelessly down on the counter and not wonder where he is or what he’s doing?
Will I ever stop worrying about his safety and his progress and his future and his life?
What about us? I want to scream. When does this end for us?
I mean, honestly. We did all the right things. We enrolled him in early intervention and I drove him to speech therapy and we set the timer at dinner so he would sit with the rest of us and maybe eat a few bites of spaghetti.
We taught him to hug his grandmother with both arms even though it’s hard for him, and we tell him to say please and thank you when he orders his chicken fingers at Friendly’s.
We make him unload the dishwasher and remind him to stop swearing and tell him he has to ride his bike down the driveway at least once a day.
We limit his screen time. We explain, patiently—oh, so patiently!—that he shouldn’t touch other people’s hair or ask when someone’s mother died.
We love him for who he is and accept him for what he has and gently push him towards a greater version of himself that he, fingers crossed, might one day become.
And still, it is not enough. Can you believe all of this is not enough?
Like I said, it’s the little things.
It’s sitting at a stop sign and wondering how he’ll ever, in a million years, drive a car.
It’s watching him jump and itch and scratch and grunt.
I’m sorry, but I don’t think any of this has anything to do with Windex.
I know we should be looking into adult programs now—my husband Joe and I need to start researching area agencies and Medicaid and all of that, but the truth is, I can’t bring myself to do it.
I can’t bring myself to haul out all of the binders and notebooks and paperwork I keep stored in the basement, and pick up the phone, and begin the process all over again the way I did twelve years ago.
Twelve years ago, I called a bunch of places and explained that my 1-year old wasn’t saying a blessed word and he didn’t even look at me when I pointed to the airplane flying above us in the clear blue sky.
Now what do I say? Do I call and explain how he twitches and rubs his nose all the time and he’s obsessed with cherry-flavored Chapstick and he screams if he can’t find it and the other night when we were eating at a restaurant he stood up to tell the server who was delivering food to another table that the soup was dripping over the side of the bowl and she better fix it right that minute?
Or should I say that we had to lower his dosage of Zoloft because he was starting to have suicidal thoughts, which is a side effect of that kind of medication but he needs it just to get through his day?
Or maybe I should mention that watching him interact with people is like the most awkward, fascinating social experiment I have ever seen. Especially the soup thing, that was really something.
Have you ever had a key that you tried to fit into a lock, but no matter how much you tried to turn it this way and that way, it still wouldn’t open?
That’s what it’s like with Jack and his autism. In my hand I hold the keys—the reports and the notes and folder and the diagnosis—yet still, he remains a mystery.
Where is this going? Where are we going?
As much as it frustrates me, I guess there is only one real answer, and that is only time will tell.
And as the days and hours and minutes march past me like soft yellow ducklings in a crooked line, I will continue to do the one thing I have done since this boy was born thirteen years ago. I will hope.
My 13-year old son has autism. He is magical, and pure, and frustrating, and mine. I love him.