STAFF & GUEST BLOG

EXCERPT: Following Ezra

November 21st, 2011, byGuest Blogger

BY TOM FIELDS-MEYER

How should parents react when they discover that a child faces significant challenges? When mothers and fathers learn that a young son or daughter suffers from a developmental disorder or serious illness, they find themselves in an unanticipated moment of crisis—one for which they can hardly prepare.

My wife Shawn and I faced that very predicament when our son Ezra was a toddler and began to show signs of what turned out to be autism, the neurological disorder that afflicts one in 110 U.S. children. Not yet three at the time, the second of our three sons displayed odd behaviors: he lined up toy dinosaurs in elaborate symmetrical patterns; he cocooned himself in blankets on scorching days; he avoided eye contact, and barely conversed.

In time, I came to realize that Ezra had a different kind of mind. The rules that made sense with other children simply didn’t work with him.

That was 12 years ago. Now, I’ve told the story of the remarkable lessons I learned in a decade raising my son in a new memoir—Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. Rather than chronicling a battle against a disease, I aimed to describe my decision to celebrate what makes my son unique. Instead of trying to “fix” Ezra, I learned to appreciate and applaud his distinctive qualities: his passion for animated movies; his powerful attraction to animals; and his unique and refreshing ways of interacting with other people.

People expect a book about autism to be depressing, but ours is anything but a sob story. Life with Ezra is endlessly entertaining, and in our family we love to laugh, so the book recounts many of the hilarious episodes I have experienced because I’m Ezra’s dad. (One reader favorite: the time Ezra, then eight, innocently asked an obese neighbor how he got so fat. It got worse—and then better—from there.) Early on, though, it was difficult to see the humor. This excerpt from the book’s second chapter recalls my son’s early isolation and a transformative moment in the office of a family therapist we had consulted for help just before Ezra turned three.

He does not appear to be forming any friendships in his preschool class. The children are young enough that “parallel play” is typical, but Ezra still stands out for his lack of connection. Baffled about how to plan his third birthday party, Shawn invites the entire class and hires a young actress to entertain the kids with parachute games and balloon animals. But when the woman gathers the children in our living room and pulls out her guitar to begin singing, Ezra is . . . gone. I run upstairs and discover him alone in his bedroom, jumping up and down and talking to himself. As the sound of toddlers singing “She’ll Be Coming ’Round the Mountain” wafts up the stairs, I watch my son pretending to be Tigger, whom he has watched over and over on a favorite video.

“Ezra, come on down. It’s your party!” I plead.

“Hellooo! Hellooo!” he calls, not to me, but to nobody—to himself, or perhaps to the Winnie the Pooh in his head—as he keeps bouncing, seeming not to hear me. “Hellooo!”

It is difficult to know how to respond. This is the party we had planned for him, yet suddenly it seems entirely inappropriate for him. In fact, the whole life we had planned for him is seeming more and more inappropriate.

We discuss that one afternoon back at Ruth’s office, as Shawn and I once again try sitting on the floor, making vain efforts to engage our son in play. The harder we try to engage him, the more Ezra resists, and the more isolated he becomes. He isn’t defiant, just detached—his voice distant, his gaze diffuse.

On a maroon loveseat, I hold Shawn’s hand, silently listening to my wife, exasperated, wonder tearfully how she will ever get through to Ezra.

Ruth listens and nods with understanding.

“You have to allow yourself to grieve,” she says.

I speak up: “For what?”

“You have to let yourself grieve for the child he didn’t turn out to be.”

I let that echo in my mind.

Grieve for the child he didn’t turn out to be.

I have not spent much time with therapists. I was lucky enough to grow up in relative happiness. My parents’ marriage was strong. My family of five (like Ezra, I was the second of three sons) has always been close and nurturing. The toughest moments of my life were minor rites of passage: the deaths of my grandparents, and occasional girlfriend problems. I went from college to a successful career as a writer for newspapers and national magazines. At the right time I ran into Shawn, an old childhood friend, and we fell in love and into a strong, supportive marriage. None of that has prepared me for this.

Grieve for the child he didn’t turn out to be.

That night, I can’t sleep. Not because of Ezra. Because of Ruth. As I lie awake, I keep hearing her voice, her quiet tone, her calm delivery.

Grieve for the child he didn’t turn out to be.

And I realize something: I am not grieving. In fact, I feel no instinct to grieve. When I thought about becoming a father, when Shawn and I dreamed together and planned together and decided to start raising a family, I carried no particular notion of who our children would become. I have seen plenty of my friends over the years damaged by their own parents’ expectations and disappointments—that a girl wasn’t a boy; that a younger child didn’t measure up to an older one; that a child didn’t want to be a doctor after all. Perhaps because of that, or perhaps because of some glitch in my own wiring, I didn’t carry any conscious notion of what my children would be like—whether they would be girls or boys, tall or short, conventional or a little bit odd.

I planned only to love them.

The next week, when we visit Ruth, I tell her that.

“I don’t feel that way,” I say. “I’m not going to grieve.”

I am sure she thinks that I am deluding myself. I know the truth. That one statement has done more good for me than all of the play therapy, than all of the listening, all of the advice. It has forced me to find and bring out something within myself. I feel full of love—for the boy who lines up the dinosaurs on the porch, for the child pretending to be Tigger in his bedroom, for the little one I carried and sang to in the first minutes of his life. My answer will never be to mourn. It will be to pour love on my son, to celebrate him, to understand, to support him, and to follow his lead.

Joanna Wilson Photography

 

Tom Fields-Meyer is a Los Angeles writer and journalist who blogs at www.followingezra.com. This passage is excerpted from Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son.

 

 

Last modified: November 22, 2011 at 7:24 pm