“… I’m still bristling over the whole assertion that he never needed to mourn. If that’s really true — and if I get to the end of the book and he’s still never for one moment had a bit of grief over the cognitive dissonance between what he expected and what he got — then he’s a lot more self-actualized than I am, and I tip my hat to him. But as a fellow autism parent, I can’t help feeling that a piece of this story was brushed aside because it didn’t fit the feel-good theme.”
Lisa asked me to respond, and then posted my reply in today’s Motherlode blog.
Here’s what I said:
I appreciate this excellent and thoughtful comment, which really gets to the heart of my book — and my approach to parenting.
First a bit about the exchange in question. When my son was 3 years old, and his autism not yet diagnosed, my wife and I paid weekly visits with him to a therapist who tried to help us draw out Ezra by playing with him. At the time, he seemed lost in his own thoughts, utterly disconnected. If he spoke, it was usually to repeat what one of us said.
Occasionally, when Ezra was silent for a while, the therapist would look up at him, then at the two of us.
“He’s gone,” she’d say, as if she were talking about a dog that had just wandered out of the room.
One day, my wife expressed tearful frustration about the futile attempts at play and, really, about the whole situation. I, too, felt aggravated about our efforts to connect with Ezra.
“You have to allow yourself to grieve,” the therapist said.
“For what?” I asked.
“For the child he didn’t turn out to be.”
It’s important to point out that the therapist didn’t do anything wrong. She was simply trying to give voice to the feeling that many mothers and fathers have. For these parents, it’s vitally important to engage in that mourning process, so that they can move on, put their expectations behind them, and try to raise the child they actually have. (A process that’s easier for some than for others.)
The problem was, it wasn’t how I felt. In fact, I had always believed that the biggest mistakes parents make happen because a mother or (more often) a father is disappointed by the way a child is turning out. Over the years, I’d seen acquaintances whose parents wanted them to be doctors, or wanted them to go into the family business, or didn’t want their child to be gay. These parents saw their children as damaged goods because the child wasn’t what they’d had in mind. I just never wanted to be that parent.
That’s how my mind reacted. What about my heart? I certainly felt challenged by Ezra’s struggles. I felt a loss of control. I was frustrated. But my aggravation wasn’t with the way Ezra was turning out. It was with my own inability to connect with him.
My book is called “Following Ezra” because eventually I figured out that I wasn’t going to build a relationship with my son, or help him in life, by imposing my own agenda on him, or by forcing him into some rigid type of therapy or just willing him to change. It was going to take watching him, and listening, and paying close attention. I was going to have to follow him.
The more I did that, the more I came to understand his extraordinary qualities: his memory, his passion, his joy.
Ezra loved going to the zoo, so I kept taking him back. And then I noticed that not only was he happy there, he was transformed: Surrounded by animals, and spending time in this orderly, predictable place, he stopped his incessant chatter about Disney movies and breakfast cereals; he stopped flapping his arms and pacing. And he talked to me.
One chilly afternoon at the Los Angeles Zoo when he was 8, he paused at the snow leopard exhibit long enough to notice that he could hear the animal breathing, and even see the vapor rising from its mouth. Then he stood close to the cage, and I realized that Ezra had started breathing rhythmically, in pace with the leopard. In school, my son couldn’t sit still for five minutes. But in that moment I watched him become calm, pacified, content.
How could I mourn?
Other parents were fretting over children who were worried about fitting in; daughters who were coping with mean girls; sons who were stressed out about algebra homework. I witnessed our friends’ children growing up too fast, experimenting with sex, struggling with eating disorders.
Meanwhile, Ezra spent a lot of time in his head, contemplating the minutiae of Pixar movies and obsessing about the running times of animated DVDs. His biggest concern was which Sunday matinee of “Shrek the Third” we were going to see.
What did I have to cry about?
At some point Ezra developed an obsession with the calendar. He started waking up on the first day of each month at dawn, running around the house with the exciting news. “It’s February first!” “It’s the first day of April!” He celebrated the arrival of the season, the day the “Kung Fu Panda” DVD came out, the first time he set eyes on a Cardigan Welsh Corgi.
So I didn’t shed tears. I celebrated with him.
I’m not naïve, or blind to the challenges. None of this is to say that raising a child like Ezra is easy.
The same reader who asked how I could not have experienced grief asked whether I might have perhaps simply left it out because it interfered with my memoir’s “feel-good theme.”
In writing Following Ezra, it was important to me to include some of the very funny moments Ezra and I have shared: how he would ask a dog owner when her poodle was going to die; the time he wouldn’t leave the novelty store without the three-foot-tall Homer Simpson doll. So many of these experiences are hilarious, if you have any perspective on it at all. And I think laughter helps the whole family.
But it was equally important that every page be real and true. I have read memoirs by parents of children with autism and other challenges that treat everything as a blessing and a miracle. I don’t see it that way. It’s certainly not not always easy for Ezra to be Ezra.
That’s why I included in my book many scenes that were challenging and difficult in all sorts of ways: the toddler haircut that so tortured Ezra that he grabbed the scissors and threw them at the hairdresser; the time he asked the obese neighbor how he got so fat. The book’s final chapter is about Ezra’s bar mitzvah, a remarkable, transcendent morning. But a few pages earlier, I describe how, a week before, I had taken my son to Nordstrom to buy a blazer, and instead of trying it on, he stared blankly at the dressing room mirror and then started licking his image.
We have a custom in our family. When somebody breaks a glass, we celebrate. As soon as you hear the shards shattering on the kitchen floor, the rule is that you say: “I hated that glass! Thanks for getting rid of it for me!” Because what else can you do? Get angry? Make the person pay the price? It’s not going to bring the glass back. So we make the best of what we have, and we always try to make life a celebration.
And then we clean up the glass.