My name is Carrie.
I have five kids, and my second son Jack is diagnosed with autism. He is seventeen.
About two years ago, Jack announced he wanted to graduate from high school his senior year.
We clapped our hands. We jumped for joy. We told him we were very proud.
It was never a given, you see. For years we weren’t sure if he could achieve this milestone on time, or at all.
The problem is, here in New Hampshire, once you receive a high school diploma services come to an abrupt halt.
Eight months from now, it will all end.
Occupational therapy, speech, counseling, summer school.
For almost seventeen years, they have been my safety net, my reprieve, my resource, my solace.
I guess you might say we didn’t think it through.
If this boy and his autism have taught me anything, it’s that dreams are like the colorful, luminous wings of a butterfly. They are fragile. You have to handle them very carefully and respect their delicate nature.
Over time, I learned how to cup them in the palm of my hands, and let go when I needed. I let go of dreams even though no one warned me how hard it would be. I learned to celebrate the boy I had, rather than the one I expected.
It seems deeply unfair to ask him to do the same.
The thing is, since he stood on wobbly legs, Jack has chased his older brother.
He chased him down the hallway and through the grass and onto the big yellow bus.
He chased him in karate class, and through waves crashing at the beach.
Still, he chases.
He wants a diploma.
He wants a cap and gown, and a party, and moving boxes with his name carefully printed on the flap.
And the truth is, he has already lost so much because of this diagnosis.
One by one, the losses don’t seem so bad.
Maybe he couldn’t play a sport.
Or attend a birthday party.
Or make a friend, or have a prom.
But collectively, well, it’s like the sting of one thousand paper cuts. It hurts.
Ever since he was a toddler with a diagnosis attached to his name, I’ve kept an autism balance sheet in my mind.
He’s seventeen now, and I still find myself doing the same thing.
Yes, he has a job.
But he only works a few hours a week and the anxiety leading up to these shifts is paralyzing.
Yes, he can finally sit through his brother’s baseball games, but he talks about inappropriate topics and stands in everyone’s way.
But he’s earnest, and interesting, and hardworking.
Yet I cannot imagine him writing a check for rent, or making a doctor’s appointment.
He’ll probably never drive a car.
I’m not trying to be negative.
I’m simply telling you the truth—how every step in the right direction is smudged by autism’s sticky fingers.
I know, I need to keep hoping.
Oh, I know all about the hoping. I have strapped hope to my back and lugged it up big, steep mountains. I have kept it warm and dry on rainy days, and admired it in the bright sunshine.
Hope is the fishhook in my mouth, the carrot ahead of the donkey, a rusty anchor at the bottom of the sea.
And here we are. After all of our hoping, we are rocking in our boat, beneath the angry glare of an orange sun.
The truth is, sometimes hope is just not enough.
Maybe we will find a program where he can have the boxes and the stuffy dorm room with a fan.
Maybe we will find a college environment with enough scaffolding and support to keep his mental health in check and teach some life skills and social pragmatics.
What will he do after that?
Where will he live?
How will he fill his days and hours and time for the rest of his life?
The thing is, I like a formula.
For as long as I can remember, I expected life to follow a certain trajectory: high school, maybe college, career, wedding, house, kids.
Sure, there might be a detour here and there—a gap year, a shotgun wedding, a job transfer. But for the most part, things follow a familiar arc.
When it comes to autism, there is no formula. There is no predictable ending wrapped up in a shiny bow. Most days, it’s just one big detour.
The truth is, my son Jack probably won’t live in a house.
He will live in a home.
A house is a dwelling of your own making, you see. You have keys. You might refinish the floors or replace the cabinets. You remove the wallpaper and consider building a patio.
A home is a residence. There is common space and staff and planned mealtimes. You share the patio.
One day, my child who chased his brother and jumped in the waves and bravely stepped aboard a big yellow bus will live in a home.
A thousand paper cuts.
The water is rising.
I can’t see the end.
I love him fiercely.