This weekend my 12-year old son, Charlie, won an award for Little League.
I felt so happy, watching him walk onto the field in his orange uniform, with his shoulders squared and his head held high.
Then, out of the corner of my eye, I saw my other son Jack jumping and hopping with his fingers in his mouth. And I felt a pinch of sadness.
Jack is fourteen. He has autism.
I want to tell you, I don’t frame everything within the context of autism. It’s not like that.
I mean this time, I felt the pinch and then I turned back to the field and I hugged my dark-haired boy so tight and I whispered in his ear. We had cheeseburgers for dinner to celebrate.
Then, after everyone was asleep, I sat at my desk, and I opened my laptop. I thought again about the pinch, and I forced myself to be curious for just a moment.
My son Jack is fourteen, and he has autism.
Autism is like this: interesting different complicated exhausting mysterious sometimes beautiful sometimes frustrating all the time real.
It can also be a double-edged sword.
Let me give you an example. Jack can talk. Who would think talking could be a double-edged sword?
But talk he does. He talks to himself all the time. He mutters and gestures and points to himself. It’s like living with a ghost.
When he’s not talking to himself, he’s asking a million questions a minute, or reporting odd, unrelated facts.
He might ask you if you’ve ever had a c-section, or if your mother has freckles, or if you are scared of lightning.
He might tell you the spiders in Brazil are the most dangerous in the whole world.
Jack is considered to have what the high-falutin’ experts call high-functioning autism. This is wonderful. We are grateful.
But accompanying high-functioning is understanding on his part—awareness of who he is and how he fits in our world. This means he knows he is interesting different complicated exhausting mysterious sometimes beautiful sometimes frustrating all the time real.
And that, my dear friends, is a sharp, shiny, double-edged sword.
We’ve done everything that’s been asked of us.
We went to the meetings. We sat around long varnished tables and listened to reports and nodded our heads.
We signed all the forms, declaring to the world our child was not who we expected.
We sat through endless afternoons of homework, and reading logs, and chaos.
We set our pride to the side and begged for services, like paupers crowding around a well gone dry.
And while we do this, our fellow parents plan graduation parties and make signs announcing college placements and buy balloons and order cakes.
Some parents hope for doctors and maybe lawyers—or maybe architects, or pilots, or engineers, or botanists.
We hope the local grocery store—the one we’ve been going to since he was a toddler—will take him in and train him how to do something and maybe sing to him on his birthday. You know, so he feels included.
If you think about it, our lives are highlighted by commemorations, and accomplishments—graduations, our first job, marriage, baby, promotions, and retirement.
With Jack, the celebrations kind of dropped off all at once. We made it as far as the sixth grade talent show—a painful rendition of Taylor Swift’s You Belong With Me, where I thought I might shatter like a porcelain statue if someone so much as touched my elbow or smiled in my direction.
If I knew that was going to be his last big day, I might have done something. Maybe taken him out for ice cream, or at least hugged him when he came off the stage. Instead, he just trundled back to class with his aide.
We never get a chance to celebrate him. We never get to hear his voice announced on a loud speaker or see his name fixed to a plaque. We never clap for something he’s done.
Instead, he and I are stuck in the monotony of the daily routine like two spiders trapped inside a web. We argue about dinner and movies and Amazon and the weather. We have no more big days.
I mean, he might get his GED at some point. Do you throw a party for that kind of thing? Do you rent a tent? Or get a cake with writing on it? Would people still come and slip him envelopes on the sly and clap him on the shoulder?
I’m not mad about all of this. That’s not it. I don’t resent the balloon-ordering parents.
I just want you to know that I’ve done everything that’s been asked of me. And still, here we are.
He touches things constantly. His fingers are always in motion, picking stuff up and setting it back down, fiddling with the dial on the car radio, tracing the map of his face—as though he is blind, and can only see through his fingertips.
Why? Why does he do this?
I guess it’s because he has autism.
Jack has autism.
My son has a neurological disorder and some people hate the word disorder but I don’t know what else to call it.
I gave birth to one son who collects trophies on the baseball field and another son who touches all of the silverware on the table in a restaurant.
Life is funny.
Jack has autism.
He will have it forever and ever and he will never get a break from it and neither will I and sometimes, this makes the both of us sad. Actually, it makes me sweat.
Did you know you can’t make a person read a book? You cannot force them to look at the words on the page, and piece together the story, and understand why Almanzo might want to set up a farm with Laura and make her his wife.
I know this, because I have tried.
I have insisted he sit in that chair and look at the words and tell me exactly what’s going on with the characters.
I’ve done everything that’s been asked of me.
We’ve done everything that’s been asked of us.
We are nowhere and everywhere all at once. We are real-live opposites in motion.
I heard somewhere that when you are tired, or overwhelmed, or aggravated, you should think of all the other people in the whole entire world who feel the exact same way at the exact same time.
So I do it.
I sit with this boy and his book, and I think about how there are hundreds of mothers like me.
I circle the well with my hands outstretched, and I think about how there are thousands of parents like me.
I walk through the dark house and I switch on my laptop, and I think about the millions of people like me.
Maybe you are like me. I hope so and I hope not at the exact same opposite time.
You know what? I think I will throw him a big party if he gets his GED. I will rent a great big tent and invite everyone we know and order a chocolate cake because that’s his favorite.
A few days before the party, I will call the bakery and tell them to write one thing on it in blue frosting. He loves the color blue.
Jack. We are proud of you.