The Letter I Never Wanted to Write
My oldest son.
My firstborn child.
This is a letter I never wanted to write.
I am counting on you.
Of course I am. How could it be any other way?
It isn’t fair.
I used to think life was fair.
Then autism came on the scene in the shape of a 9-pound, 3-ounce baby boy named Jack. Your brother. And my mind was forever changed.
It isn’t fair that once your father and I are no longer here, the responsibility will fall to you.
I’ll never know what that is like for you.
I’ll never know what any of it was like for you.
The interrupted meals, the isolation, the bewildered stares in the mall.
You are an Autism Brother. And this is no small thing.
It’s always been you.
It was you he toddled after on chubby legs, an everlasting circle of brother following brother.
It was you he watched kick, throw, run. And then he announced his first word as though he’d been storing it up all along.
It was you who taught him how to tie his sneakers, looping one through the other and pulling them tight.
It was you he watched climb the steps of the big yellow bus . He insisted he could, too.
He chases you. He always has.
It’s not fair. It’s not fair that your peers think of only their own lives, their own happiness, their own path, while you must think of him.
The truth is, fair left the building a long time ago.
Now, perhaps more than ever, I worry about what will happen when I die.
Oftentimes, caring for a complicated child can feel like a deep, black hole in which there are no answers.
Daddy and I, we have made arrangements. He’ll be taken care of financially. He’ll likely live in a supported environment. You won’t have to worry about the day-to-day stuff.
He won’t rely on you. But he will need you.
Still, I worry.
Please, don’t let him spend Christmas alone.
Call him. Check on him. Make sure he’s okay.
Buy his favorite cookies when he comes to visit.
Sit with him. Listen to him talk.
In other words, do all the things you already do.
Childhood is coming to a close for both of you.
One day, how will you look back on this time? What will you remember?
I hope you remember the way he set the table, awaiting your return from wherever the afternoon took you.
I hope you remember how your father dragged us from dealership to dealership, researching cars with every safety feature available, imagining his special son may one day sit behind the wheel.
I hope you remember all the times I made room for you, even when autism took up a lot of space.
We are an autism family.
We are full of small slights and petty resentments and belly laughs and birthday cake on white plates.
We root for the underdog.
We take of our own.
Autism is our house.
We are flawlessly imperfect, but we are honest.
We love him.
We know him.
Autism is a listener’s language. It speaks to those who hear—those who seek to understand.
Still, we struggle for fluency. We become impatient, we talk too fast, we forget to listen.
We are learning.
Yet you were always his voice, even when the rest of us couldn’t find the words.
This house has windows and doors and lots of light. It has a strong foundation, and a table with lots of seats.
We built it for him.
You grant him freedom beyond autism’s golden cage.
You see, you are not only his brother. You are everyone’s brother. You are one of many who live alongside autism—who hear the IPads bounce and watch the raging tantrums and feel the awkward stares upon their backs as strangers work to make sense of our life.
Through a complicated twist of genetic fate, he became a statistic, while you became who you are.
Because of autism, our family is one plot on a scatter chart of many. We are a percentage.
For the most part, your life will carry on as expected. It might follow the college-job-marriage-child trajectory, while in some ways he will stand still. Like a rare bird inside a gilded cage, he will remain confined by the constraints autism has imposed upon him.
Please, when I’m gone.
Take care of him.
It isn’t fair.
But I have to ask it of you.
Take care of him. Please.
He loved you first.
March 20, 2023 @ 1:47 pm
Your letter caused me to cry. It would touch even the hardest heart. Thank you.
March 20, 2023 @ 6:43 pm
Not having autism in our family, your contribution explains what you have experienced for 18 years, the ups and downs. Thank you and others, Kate Swenson, for providing this very important message and a better view into what steady attention it takes for your sons to reach such goals as they have. You are truly educators.