Remember when I told you I was going out of town to talk to a group of bus drivers at a conference?
In you robotic tone, you asked the question you always ask, “What will you tell them?”
And I gave you the answer I always give, “I don’t know yet.”
I mean, I knew I was going to talk about our family and you and autism, but whenever I stand in front of a group of people—whether it’s teachers or parents or church leaders or business people or bus drivers—I have a hard time deciding exactly what to share.
Like a teeter-totter on an abandoned playground, I vacillate between statistics and stories; research, and a life lived every day by a boy who has autism.
You are this boy.
(Jack, you may not know what the word vacillate means. It means to hesitate, or to waver. You could also say it means to waffle, but I was worried if I wrote waffle you would just start thinking about how you cook waffles every Thursday morning.)
I knew I should mention stuff like bus safety and fire drills, and how riding a crowded bus full of loud, antsy kids is very difficult you.
And yet, none of that felt quite right.
When I sat down and I looked at my notes, I decided I should just write a letter to you. That’s what I always do when I’m trying to figure out what to tell people.
Jack, I like to write you letters. I like to tell you all the things I think you would have trouble understanding if I spoke the words to you while you sat next to me on the couch or in the car.
And when I read the letters out loud, I think it makes people feel as though they can almost picture you standing in front of them while I talk; a tall 11-year old boy with a light brown crew-cut and glasses.
You first started riding the bus when you were two years old. We were living in Buffalo, and you had been diagnosed with autism for about six months.
At two years old, you did not say a blessed word. You didn’t know your name, or your address, or your phone number. You wandered away without a moment’s notice—in the mall and the post office and one day, right out the front door of the house.
At the time, it seemed ridiculously crazy to put a 2-year old on a bus. It seemed especially ridiculously crazy to put a 2-year old who could not say his own name on a bus. I typed up long lists of emergency contacts and phone numbers and details, while Daddy tried to figure out how to strap a GPS to your body.
A woman named Janice was your driver. She promised—and I mean promised—she would keep track of you and make sure you made it into the building. You looked confused when we buckled you in and I stepped off the bus.
I cried so hard when your 2-year old self rode away on that small yellow bus that I had a headache.
When we moved to New Hampshire you rode a small bus again to preschool, and eventually kindergarten. For two years you had a driver named Lily. Miss Lily, we called her. Miss Lily was kind of like a grandmother, with short, silvery hair and a gentle smile.
She was heartbroken the day you had a tantrum and kicked her. I was heartbroken too; for her, for you, for all of us. I walked up our long driveway thinking about how much I hated autism.
I know I want to tell everyone how hard Daddy has worked to connect with you from the very moment you were born; to understand his fussy infant and silent toddler and unexpected son.
How, for all of kindergarten, he got you off to school in the morning, and stood waving as the bus pulled away from the stop. Every morning, he waved. He hoped one day you would look out the window at him, and wave back.
He waved as the New Hampshire leaves turned brilliant gold and red and orange and eventually fell from the branches. He waved when the gray sky spit sleet and snow, and again when the warm spring rains made the trees green and vibrant once more.
He waved and he waited, waited and waved. Then one day late in the spring, your father walked back up the driveway with tears in his eyes.
“He did it. He waved back to me. He waved.”
When it was time for first grade, you went to the same elementary school as your older brother, Joey.
“I will ride. With Joey.”
Daddy and I sat in the hot, airless room during your IEP meeting and listened to the scattered objections.
It will be too loud for him.
There won’t be an aide with him.
We can switch him to the big bus later in the year, there’s no rush.
I knew with absolute certainty that they were right. It would be too loud and there wouldn’t be an aide and really, all hell could break loose at any moment during the five-mile drive to school and back again.
But I also knew with absolute certainty that we had to give you a chance. Your 6-year old self deserved a chance on the big bus.
In the overheated room, I said only one thing—just one single sentence.
“We have to let him try.”
On the first day of school, I was so worried we made the wrong decision. What if you started screaming, or threw a fit? What if you couldn’t handle the noise?
The driver’s name was Paul, and he was a kindly man with a gentle smile. Paul waved and said, “He’ll be just fine,” and off you went on the big yellow bus, the same one as Joey. You never looked back.
I wanted to share the way your sister Rose stood at the kitchen counter with me one afternoon, mixing brownie batter. And in that serious way she has, she said, “Jackie always sits alone on the bus. I feel so bad for him.”
I want to tell them that she is the only person in the whole entire world who calls you Jackie.
When you were in third grade, you had a substitute bus driver for a few months. He had long, wild hair and he wore a bandanna around his forehead. His name was Carl.
One afternoon the bus pulled up and I saw Carl speak to you. He seemed irritated. You came off the bus and told me, “He said I have to sit in the front. With the kindergarteners.”
You were confused, so Joey stepped in to explain.
“Mom, the bus driver doesn’t like how Jack stands before the bus stops. He told him if he doesn’t stay in his seat he has to move. I don’t think he understands about Jack, how he doesn’t get things like that.”
I called the school and asked if they could just remind Carl about your IEP and the diagnosis and all that and they said they couldn’t. They couldn’t tell him about your autism because, according to some regulation, it’s private.
Private? What is private about autism? I thought to myself.
It feels like the people who make these laws and regulations don’t understand the fragile, tenuous life that is the spectrum disorder. They don’t understand how a simple breakdown in communication could shatter a young boy’s heart, because you would be devastated to have to go back to the little bus with an aide. Riding the big bus and choosing your own seat and managing the sounds of kids singing and clapping trading Pokémon cards has been a victory for you.
It’s not really up to me to make laws, or change policies, or write handbooks. But it is up to me to defend your victories, no matter how small they are.
So the next day I told Carl. I told him you have autism and if there’s problem he can either talk with me or tell you very carefully, very directly, to stay in your seat.
“Awesome,” he said. “I didn’t realize. Good to know.”
In fifth grade you had Mrs. Anderson as your bus driver. She had long silvery-white hair and a happy smile and, despite her daily cargo of pre-tweens and middle-schoolers, she decorated the bus with spiders and streamers for Halloween and played music every day. You sat in the seat right behind her, and chatted about songs. And when you became obsessed with bus routes and street names, you chatted with her about that too.
You loved Mrs. Anderson. At first I thought it was because of the music and the decorations and the routes, but then I realized that, although you still sat alone on the bus, you felt like you had a friend with you for the ride.
When I see the bus drivers at the conference next week, these are a few of the things I want to tell them.
I also want to tell them I know how hard their job is.
I want to tell them they are an important part of every student’s day.
I especially want to tell them they make a difference.
See, Jack, in school you learned how to write your name and use those pesky Cuisnenare rods, but on the bus you learned how to stay in your seat until the doors opened.
You learned how to bravely dip your toes into the cool, deep water of independence, even when autism threatened you might sink instead of swim.
And one spring morning, you learned how to look out the window of that big yellow bus, and wave good-bye to your father.