“Learning to Be the Right Parent For This Child”: a Q & A

In honor of National Autism Awareness Month, Priscilla Gillman, an author I admire,  gave me the opportunity to answer some questions about Ezra. Priscilla’s book The Anti-Romantic Child (out in paperback this week), is a wonderful and uplifting read blending of memoir and poetry. Priscilla posted in on her blog. I’m reposting here. Many thanks to Priscilla for the opportunity, her the great questions, and the lovely writeup:

Tom Fields-Meyer has been a writer and journalist for nearly three decades. He was a longtime senior writer for People magazine, where he specialized in inspiring human-interest stories. His writing has appeared in The New York Times Magazine, The Wall Street Journal, The Washington Post, and the Los Angeles Times.   Tom is a native of Portland, Oregon and a graduate of Harvard College. Tom and his wife Rabbi Shawn Fields-Meyer live in Los Angeles with their three teenage sons.

Tom Fields-Meyer is the author of the touching, sweet, and wise memoir Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son.  He and I have never met, but I am a huge admirer of his, and can I just say that I would follow his dear son Ezra anywhere?!  I love him!   Recently I asked Tom some questions in honor of Autism Awareness Month and National Poetry Month; here are his very thoughtful and compassionate answers.  They not only provide wisdom and support for parents of special needs children; they also bring the immensely charming Ezra to my readers.  Enjoy him, everyone!

Tell me about your son.

Ezra is the happiest person I know. He knows what he’s passionate about: animated movies, animals (particularly dogs), and animated movies about animals. The other day I was driving him between two of his favorite places—the zoo and his weekly animation class—and I had to give him some, shall we say, negative feedback about his behavior. He tried to listen intently, but then he spotted a passing billboard, and he couldn’t stop himself: “Madagascar 3! Look! A billboard for Madagascar 3: Europe’s Most Wanted!” He was so gleeful, and I couldn’t help but smile along with him.

What is the most important advice you would give to the parents of a child newly diagnosed with autism?

I try not to give advice, as everyone reacts differently to having a child with challenges. But the most important thing for me was avoiding the instinct to fix or change my child. At first my wife, Shawn, and I thought our job was to find the best doctors, the best therapies, the best diet. But then I came to realize that this isn’t about finding the right expert. It’s about learning to be the right parent for this child.

 What types of therapy or therapeutic approaches have most helped your child?

In my experience, it doesn’t matter what the person’s title is or what combination of letters they have after their name. The people who have helped Ezra most are those who have made a real, human connection with him—the ones who have taken the time and effort to get to know him and appreciate what’s special about Ezra. He feels that, and he rises to the occasion.

What is the worst, most misguided, offensive, or otherwise disturbing statement you’ve ever read or heard about autism?

The list is so long. In the first few years, we heard a lot about early intervention and how the mind is malleable only up to a certain point. That caused a great deal of panic about doing all of the right things before Ezra’s brain locked in for good. Of course, that was nonsense. Ezra is 16 now, and we see growth, development and progress almost every day.

If you were invited to speak to a group of typically developing children of your son’s age in order to educate them about autism, what would you want to tell them?

I would try to give them a sense of the complexity of Ezra’s mind: He’s always loved animated movies and has an elaborate calendar in his brain. When he was 12, we were at a bar mitzvah party and he started asking strangers their birthdays. Then he’d tell the person which Disney movie premiered on that same day. “June sixteenth? Pocahontas came out on your birthday in 1995!” At the same time, if you asked him the names of the seven or eight kids in his seventh grade class, he couldn’t tell you. He’d guess. The same wiring that makes these superhuman feats possible makes it extremely difficult for him to do things the rest of us find so ordinary.

What is your child’s biggest fear or source of anxiety? What helps him cope with it?

Just not knowing when something important to him is going to happen. Ezra likes to see movies on the first Sunday after they come out. When there’s a big animated feature film coming up, he’ll remind me a few dozen times a day that we’ll be seeing it on Sunday, and then ask me again if we’re going to see it on Sunday. “Of course we will,” I’ll say. ” Ezra will say, “I’m just making sure.”

What helps? Writing it down, showing him the tickets, reminding him that last time he was worried about something like this, it worked out just fine.

What is your biggest fear about your child’s future? 

When it comes to Ezra, I try to live in the present. My wife will tell you that I worry about a lot of typical things: money, work, various logistical matters. But I don’t focus on fears about Ezra’s future. We put a lot of energy and creativity and effort into him, and experience has shown that he nearly always exceeds our fondest hopes, and always in ways we don’t expect. I have great faith in him and his ability to find his way.

 What is your greatest hope about your child’s future?

That he will continue to be happy, that he’ll be surrounded by love, and that people appreciate him for who he is.

How is parenting a child with autism like and unlike parenting a typically developing child?

Ezra is the middle of three brothers. Shawn and I made a decision a long time ago that our family was not going to be defined as a family about autism. We try to treat our kids equally, to give all three of them our love and attention. Parenting is about paying attention to the child, listening to the child, loving the child, and helping the child to become the best possible version of himself or herself. That’s true with any child.

What one thing can anyone do to help support people with autism and make our society a more congenial place for them?

These things happen on a very small scale. Sit down and spend time with a person with autism. Listen, watch, share something about yourself. Talk to the person as a person —not as a person with special needs, or a person with a disability. Just a person. It’s all about building relationships.

What is your favorite poem and why? 

I love listening to Garrison Keillor read poetry on the radio, and whatever he read most recently becomes my favorite. Shawn is a rabbi and she has a poem she often uses in her teaching: “The Summer Day” by Mary Oliver. It’s a reminder to live in the moment and take note of life’s blessings. (It also happens to include a swan, a bear, and a grasshopper. Any poem with that many animals would make Ezra happy as well.) I love the last lines: “Tell me, what is it you plan to do / with your one wild and precious life?”

Does Ezra like poetry and if so, what is his favorite poem and why?

Ezra creates animation. He also loves words and wordplay. At 12, he created a short film called “Alphabet House” that inspired a children’s book called E-Mergency! created by Tom Lichtenheld, the bestselling children’s book author and illustrator. Some of Ezra’s best animated shorts are based on Shel Silverstein poems. He recently made one called “The Two Boxes,” about two cardboard boxes that become friends. I love that he wanted to make a movie about friendship, and I adore the scene when the two boxes walk off into the sunset together.

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