‘Following Ezra’: Father recounts life with extraordinary autistic son

At age 5, Ezra was not yet reading. His parents knew their son was bright and loved books, but he had been diagnosed two years earlier with high-functioning autism. Developmental milestones happened at their own pace, if at all.

As journalist Tom Fields-Meyer recounts in his gentle, insightful memoir about his son, “Following Ezra,” synagogue was where he and his rabbi wife, Shawn, found out — in an unexpectedly public way — that their son was able to read.

Yom Kippur services had just ended, and as hungry congregants gathered to break the fast, a fire alarm began shrieking in the temple hall. The sound sent everyone into confusion and panic until a man shouted out, “It was the rabbi’s son.”

“I can tell from the tone which one he means. That son,” Fields-Meyer writes. As the fire trucks arrived, he took Ezra outside and asked what happened. After admitting he “touched that box,” Ezra explained why: “It said ‘pull down.’ ”

Tom and Ezra Fields-Meyer

The moment was a revelation. By seeing the event through Ezra’s eyes, Fields-Meyer’s perception and feelings changed. It also was a lesson in how to be the best parent for his son: patient and compassionate, for sure, but also watchful, following Ezra as he made his way through the world.

Early on, after a well-meaning therapist advised the overwhelmed parents to “grieve for the child he didn’t turn out to be,” Fields-Meyer writes that he resolved instead to “pay attention to the child he was.”

“What I had been looking for was the wrong thing,” he explains in the prologue. “I saw my son’s challenges as something to get past so that my family and I could get on with our lives. I eventually learned that this is life; this is what life is.”

The author will make Bay Area book appearances Sunday, Dec. 4 in Oakland, Monday, Dec. 5 in Los Gatos and Dec. 11 in San Francisco.

In a phone interview from his Los Angeles home, Fields-Meyer says he hopes “Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son” can help others in similar circumstances.

“There are so many families dealing with autism and having a difficult time. A lot of stuff written on the topic didn’t reflect my experience,” he says, describing the typical narrative as a “battle against disease” or looking for a cure.

The author wrote human-interest features for People magazine for 12 years, many of them about families overcoming adversity. “I wanted to write about what it was like to live with someone like this,” he says. “Ezra is so fascinating to me, and these stories were unfolding in my own house. I was interested in the way he saw the world and sharing these funny moments.”

Though he writes that he and his wife feel a “sense of awe for our unique, exceptional son” with all of his “quirks and idiosyncrasies,” he also recounts the early years of their journey as “beginning in darkness [and] winding through desperation.”

Fields-Meyer, 49, confines the clinical definition of autism to a few pages. It is a neurological disorder diagnosed on a spectrum, with symptoms in three categories: social interaction, communication, and restrictive and repetitive behavior. Autism affects 1 in 110 U.S. children and has treatment protocols but no cure.

“Ezra craves the concrete,” Fields-Meyer writes. “He has a deep need for structure, for things that won’t change. … Conversations and social situations leave him bewildered.”

Some of those personality traits are channeled in positive ways when it comes to family traditions. “Our lives are centered on Jewish life,” Fields-Meyer says. “Ezra is really drawn to the Jewish calendar. He likes structure and celebrates the first day of every month. He gets really excited when the holidays are coming. All of his personality comes into play.”

Although he is by nature reticent, Ezra, now 15, caught his parents by surprise on a recent Shabbat by offering his views on the decidedly unstructured concept of creation. “I don’t think God did that,” Ezra said. “I think it was more from nature, not God.”

“That’s what he should be doing, questioning whether there is a God. But it shocked me that he was at that level,” Fields-Meyer says. “At a certain age kids get jaded, or it’s not cool to talk about spiritual things, but he doesn’t think about what other kids think of him. He’s incredibly open.”

Ezra’s brother Ami, 17, attends the Milken Community High School, where his mother, Shawn, is a school rabbi and also teaches Jewish Studies. And his other brother, Noam, 13, attends Pressman Academy, a Conservative Jewish day school. “We’re really big fans of Jewish day school, but there hasn’t been a place for Ezra,” Fields-Meyer says.

One mainstream Jewish setting where Ezra has found a place is Camp Ramah in Ojai. Fields-Meyer, who serves on the camp’s board, calls its special-needs program “extraordinary” for the way it integrates the children into camp life.

While acknowledging it is “more challenging for day schools because education is more complex than summer camp,” he says the Jewish community “needs to look at this issue and find ways not just to accommodate but to fully include [special-needs kids] and make them part of the community,” including synagogue life.

A highlight of the book is Ezra’s bar mitzvah in 2009. The event was not without its nail-biting moments, but overall “it was amazing,” Fields-Meyer recalls, and a positive experience for the entire family.

“At every stage of his life he always exceeds our expectations,” he says, “and always in ways that we didn’t expect.”

 

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Sue Barnett

Sue Barnett is J.'s senior editor. She can be reached at sueb@jweekly.com.