A Ceiling Becomes a Floor

How one Bedford family's journey through autism, small-town life, and letting go became a story about so much more.

A New York Times Best Seller, Autism Out Loud can be purchased where ever you find books.

I always thought our story was about autism. Now, I am less sure.

Our family moved to Bedford in 2007. Our son Jack was three. At the time, he was unable to string a sentence together or use a fork. He ran away from me every chance he got. He never slept more than two hours at a time.

If you asked him what the word town meant, he would have stared at you blankly.

Yet over the years, this town became his bedrock, his foundation, his security blanket.

Jack.
Jack-a-boo.
Jack-attack.

I chased him through the baseball complex when his brother played Little League. I walked, shame-faced and exhausted, through the carpool line to pick him up early the times he had epic meltdowns in middle school.

When he got a job washing dishes, his father took him to the bank every Saturday morning to practice making deposits. Carefully, he signed his name at the bottom of the slip in blue ink.

Errands to the pharmacy to show him how to fill his prescriptions, with a trip to The Purple Finch for lunch. He always ordered chicken fingers.

Round and round we went, circling this little town until we wore smooth tracks in winding back roads and shopping plazas. In many ways, he was like a bird inside a gilded cage. Secretly, I worried he may never fly.

If you had asked Jack, while he was dipping French fries into ketchup at the lunch counter, what the word town meant, he probably would have paused, and said home. This town was his home.

Many days, I wished I had a crystal ball to help me see the future. Would I do this forever?

Maybe.

Probably.

Then, suddenly, a spark ignited. After watching his older brother leave for college, Jack too decided he wanted to find somewhere to go once he graduated high school.

We embarked on a dizzying rabbit hole of research, forms, and applications. We settled on four possible programs that might work, with a total of seven spots between them. Time and time again, I was reminded of the staying power of an autism diagnosis; instead of SAT scores, we submitted psychology reports. Instead of essays, we filled out paperwork assuring that Jack was what’s called medication compliant—meaning he was capable of taking his medicine on time.

There were no banners in the mail. No small teddy bears with the college logo. None of the hallmark propaganda trying to woo him to a campus that showed up for his brother just a year earlier. Instead, we opened the mailbox and pulled out rejections. One after another.

Then one day, a letter in the mail.

“Jack, we’d like to offer you a spot for the upcoming academic year.”

And just like that, a ceiling became a floor.

People ask how we let him go, this younger-than-his-years boy of mine. All I can say is every time the sky sputters a metallic rain, I glance up at the clouds and hope he remembered his umbrella.

If you asked Jack today what a town means, he would say it’s where he used to live. The boy I worried might never fly has slowly, oh-so-slowly, become a silhouette against the horizon.

Perhaps that’s the mark of a good beginning. It helps propel you somewhere new, somewhere bigger than you ever imagined.

I bump up against his absence throughout my day—all of their absences. How badly I wish I could go back and do it all again—the baseball games, the chicken fingers, the chance to wipe his tears as we walked back to the car.

We can’t go back. That’s the thing.
We can’t go back to the words we said, the rage we spilled, the mistakes we made.
We can’t go back and be the people we hoped we’d be.

It is easy to assume our story is a story about an autism diagnosis, when in fact it is much, much more.

It is the story of a tender father, coming to terms with the foreverness that is raising a complicated child—a child who may never earn for himself, or understand a mortgage, or raise a family of his own.

It is the story of a world so seemingly narrow that there is no choice but to pull it apart, cloud by cloud.

It is a story of a family’s steady arc through time: toddlers become teenagers,

We can’t go back, it’s true. But we can always go home.

Home.

There are times when I still long for that proverbial crystal ball. Desperately, I want to know how this ends.

Perhaps there is no ending. Perhaps there is a beginning and somewhat of a middle, and mostly a sparkling, slippery, magical riddle in the shape of a young man.

Sometimes, just for fun, I make my own version. I imagine a day when everything is clear. This is the day I think of when I hunger for more. A made-up day.

Or is it?

Early June.

My husband Joe and I sit on the front porch. The grass is green, the leaves on the trees vibrant.

Through the window, you can see a calendar hanging in the kitchen. June 21st, 2054. Father’s Day.

Joe’s favorite dessert sits in the refrigerator – the lemon tart I’ve been making since we were in college. I clipped the recipe from a magazine.

I look over at this man. I smile. I know his face better than I know my own. He takes my hand.

One by one, cars pull into the driveway.

“They’re here,” he says.

A mismatched jumble of people spills out onto the grass. Sullen teenagers, chubby infants, son and daughter in-laws.

Kids.

Grandkids.

Another car approaches. Self-driving, it shuts off on its own. He steps out into the sunlight. At nearly fifty, silver threads his once-dark hair.  

They circle him, like petals around the heart of a flower.

This is family.

Sharp edges, scars that heal, made-up stories to get through the day.

Timeworn recipes of lemon, of heartache, of worry, and hope.

A small boy walks over to the car.  

In his young face, I see the smile of my children. I see their youth. I think of Star Wars pajamas, of childhood, of birds gone free in the sky.

He reaches out a hand.

What you don’t know can tell you everything.

“Uncle Jack! We have the same name.”

Jack.
Jack-a-boo.
Jack-attack.

Thank you, Bedford, for your part in our story.