Since early December, Jack has been wearing his huge black snow boots to school every day. He refused to wear his sneakers. He refused to pack them in his backpack. He also refused to bring an extra pair to leave at school so he could change instead of clomping around the hallways and the cafeteria and his classroom like a Clydesdale in Bogs.
And it’s not just school. He wears them to church. To the grocery store, the movies, and his grandfather’s eighty-second birthday party at the Olive Garden.
Every day, I would tell him to put his sneakers on, and every day he would say, “No! My boots! I want my boots.”
Since we are fighting many, many other battles at the moment—sleep problems and tantrums and maybe but we’re not sure, puberty—I mentally filed the boot-wearing under things I cannot care about right now, and I let it go.
But this week I noticed something smelled funny when he walked in the door from school; wet and musty, like the inside of a winter glove that never dried out.
“Jack! Your boots stink! Tomorrow you have to wear your sneakers.”
“NO! No no no.”
“Jack, come on! You have to!”
“For my sneakers! They touch my toes.”
“Touch your toes? You mean your toes are at the end?”
“Yes. They touch.”
It is February, which means it only took me three months to finally realized he wore his boots every day because his sneakers were too small.
(Feel free to send my mother-of-the-year trophy at any time. I’ve already cleared a space on the shelf for it.)
Every week I sit at my computer and I write a bunch of stuff about our family and Jack and autism, and on Monday morning I hit the blue button that says publish.
I come up with most of my ideas about what to write while I’m driving in the car, or when I’m in the shower. All week long, I weigh very carefully the things I should and shouldn’t share, and then in the end, I share it all.
The pain, the heartbreak, the fear, the elation.
Sometimes I worry, though. I worry that maybe I tell too much and one day it will come back to haunt my tall boy of autism.
What if he gets bullied at school because of a post I’ve written?
What if he can’t get a girlfriend, or a job, or I don’t know, a passport?
I’ve been thinking about this quite a bit lately, as Jack gets older and I continue to share more and more personal details of our lives. The world is scary. Kids can be mean. All sorts of discrimination is possible.
I mean, I guess I could have created a, whaddyacallit, a pseudonym. Or an alias of some sort. I could have changed his name to something else to protect his privacy.
But his name is Jack. My son is Jack. He is eleven-almost-twelve, and he has autism.
And any way you look at it, autism is making history. Statistics are on the rise, gluten-free diets are under consideration, boots are worn every single day for three months.
For me, history begins with his story.
And when I lie awake at night staring at the ceiling, I don’t think about big important ideas like awareness and compassion and inclusion. I think about how to connect him with the world and the world with him in a way that makes both comfortable.
I spend about twenty-nine hours of my day reminding Jack to stop licking the counter and to sit for homework and to stop swearing and to get off of the computer already.
And the other sixteen hours I spend trying to convince him that he is fine the way he is—we all of us love him with his autism, and we think he’s one cool cat even if his boots stink like a litter box no one has changed in months.
There is no pseudonym for this.
The responsibility to tell our story feels, well, tremendous—like a thousand bricks sitting upon my shoulders. I want to be diplomatic, yet honest. Fair and authentic. I want you to be able to see and hear and taste our family and our autism for yourselves.
I had no real goals when I started writing, but as the blog has evolved and changed over the years I think, in some small way, it helps people put a face to autism–a face to the meltdowns and the anxiety and the delayed communication.
And maybe it helps put a face to a family living with autism; three other boys and one little girl who feel frustrated some days and peaceful others, who hope and breath and love right alongside this boy with fierce, boundless energy.
I am trying to tell you all the things he cannot say for himself; that his boots are stinky because his sneakers were small, that behind every tantrum lurks a mysterious inner torment, that he longs to be like everyone else in the world the way you or I want to be supermodels or millionaires or Oscar winners.
And if my telling his story of autism feels like a thousand bricks upon my shoulders, than him living the story of autism must feel like he is moving an entire brick house from place to place with his bare hands.
I am trying to tell you that he is every single thing I’ve ever wanted to be; brave and brilliant and interesting and strong.
Some days, it is hard to be his mother, but not for the reasons you might think. It’s not because he doesn’t sleep or because he reminded me ninety-six thousand four hundred times that he was planning to make the heart-shaped cake again for Valentine’s Day but this year he was going to use pink marshmallow frosting instead of pink buttercream frosting, but because it makes my heart ache to think how little anyone may ever know him.
I want you to understand him.
Because if you understand him a little bit, you’ll help keep him covered beneath the vast umbrella of awareness that we are all working so very hard to build, and shelter him from the judgment raining all around him like a brilliant, blinding sun shower.
And that is why, week after week, I offer our story to you like a tiny, imperfect pearl balanced in the palm of my hand. All I ask is that you love him like I do, protect him like I try, and maybe, one day give him a job.