The restaurant wasn’t very busy when we walked in, and right away my kids ran over to look at the tank full of lobsters.
We asked if you had a table available. You smiled and nodded, and gathered up a bunch of menus. Then you noticed my son Jack. He was standing a little away from us with his head down, and he was wearing his blue headphones.
You asked me if I wouldn’t rather he leave his devices at home.
Well, yes. Yes, I would rather he left his headphones and his ITouch at home and sat at the table and read the menu and made very nice conversation with all of us.
But see, he doesn’t do that. Even on the best of days, Jack doesn’t do that. And this had not been the best of days.
I want you to know that I am not upset that you asked. Not in the least. I get it, I really do. It’s unusual to meet a 13-year old who doesn’t speak in complete sentences and needs music to get through a meal.
But please, don’t judge me. It makes me feel lonely and bad and sad inside, like something is breaking apart and it can never be glued back together again.
See, my son Jack is different.
He isn’t like you.
He isn’t like me.
He really isn’t like anyone.
He has autism.
I never expected to be an autism advocate. I never wanted to explain my son to zillions of people all the time and try to help them understand why he does the odd, quirky things he does. That was never my plan. I was going to have regular kids and a regular life and be all happy, happy, happy la la la.
Life, it seems, does not always go according to plan. La la la
But that’s okay, it really is. I’ve made my peace with it all by this point. But I want to tell you that for me, being judged is the worst.
See, there are days—like today—when I’m simply trying to hold myself together. I am an exhausted shell of a person and I am basically putting one foot in front of the other and I am questioning everything about myself and every decision I have ever made about this boy.
Jack was very mad this morning because he has to go to summer school so he stays in his routine and doesn’t forget how important it is to acknowledge someone’s sentence when they’ve spoken.
He was up at 5:00 am and the screaming started pretty early. I tried to get him to eat some cinnamon toast for breakfast because he loves cinnamon toast with a lot of butter, but he just pushed it away across the counter.
In times like this, I wish with all of my heart I could only be the mother. I wish I only had to worry about how well he dribbles a basketball and if he’ll make the honor roll and whether or not he should take a multivitamin.
I wish I could just soothe and teach and love. But I can’t. I have to worry about the long-term effects of anti-depressant medication and whether or not he’ll graduate from high school. I have to decide when to push my boy forward, and when to let him stand still for a little while.
At the same time, I also have to research and learn and educate—not just myself, but every single solitary person I come into contact with through the course of my life.
I have to help the world see him for who he is, rather than what he has.
I guess you could say it’s a little like setting the table for dinner. I want to make sure everyone has a place to sit, and someone to talk to, and something to say. I want to make sure my Jack-a-boo never has to eat alone.
I got him out the door and on the bus—well not a bus exactly, but a minivan, the kind that has big sign bolted to the top that says School Bus and smells a little like baby powder—but he was still screaming and begging to stay home so he could have what he calls a normal summer like everyone else.
He wants so badly to be like everyone else.
He jumped out right before the doors to the van slid closed. I told him fine, this was fine, but now I was going to drive him.
I had to carry him to the car. I picked him up the way you would pick up a baby and I held him very tightly and I could feel his heaviness. Not just the heaviness in his arms and legs and body, but the heaviness in his heart.
In the middle of these terrible moments, I wonder what I am fighting for all the time. I mean, does it even matter?
Is summer school really so important that I had to actually lift my tall boy off the floor and carry him into the car and lock the doors so he wouldn’t jump out into traffic and tell him to breathe, please Jack, breathe you are going to be okay this is no big deal you will have pizza for lunch please don’t cry I am sorry I am sorry.
The truth is, it is. It is so important. I wish it wasn’t.
He needs his routine and his teachers and his social activities. Right now, he and I both feel imprisoned by these demands—hemmed in by the parenthesis the spectrum disorder imposes upon us–but in the end, it is our only road to possible freedom.
Please, don’t judge him.
Being an autism advocate is harder than I ever expected, but over time, I have come up with a kind of strategy.
Whenever I see someone kind of looking at us and judging his behavior or his headphones or whatever, I do not narrow my eyes or sneer.
I do not scream, or shout, or huff.
I do not pull out my phone and log onto Facebook and incite a war cry about how evil the entire world is and how no one will ever understand me or him or us or autism.
I don’t do any of that. I simply smile, and I talk. I tell his story. I tell my story.
I try to tell it in a way that makes people reach deep down inside of themselves and drag the ugliest, scariest parts out into the light. I try to connect them with autism, and make them see that yes—yes!—he is different, but he is also the same.
I try to make them remember their own bad mornings, or the summer days they spent in a hot classroom, or the way they, too, love cinnamon toast with a lot of butter.
Or the times they felt so ugly-stupid-ashamed-wrong-awful about who they were that they wished they could become invisible.
Beneath my rueful smile and my apologetic shrug and all the words, I am really saying just one thing.
Please, don’t judge us.
When I saw you frown a little at the headphones Jack was wearing, I wanted to tell you that once I finally got him to the school, he stood outside of the building and he wept for almost an hour before I got him to walk in the door.
We convinced him to look at his new classroom and when we went inside, he asked for a drink of water. He drank a long, cool gulp from a paper cup and then he looked at me and he said, “Okay. To stay. For me now.”
With Jack and his autism, there is one single moment separating rage and acceptance, distress and cooperation. It is exactly the space of a heartbeat. I believe this moment is called courage, and it is so beautiful, it takes my breath away.
He has a lot of courage. That’s what I wanted to tell you.
And so I did. I told you all of it. I stood in the lobby with the wood paneling and the lobsters in the tank and I told you about summer school, and the red-faced screaming, and the cool drink of water.
When I was finished, you smiled at me.
Then you looked over at my Jack-a-boo, and you smiled at him. Without a word, you lead him to his seat at the table.
That made me happy.