‘I Don’t See People With Disabilities’

I’ve had a busy week. In six days, I’ve visited  four cities, with speaking engagements in Oakland, Los Gatos (Calif.), New York, and New Orleans. Travel can be both exhausting and exhilarating: Things happen that just don’t happen at home. On the New York subway, I ran into an old friend who lives in Vermont. That same day, I heard from a friend from home in Los Angeles who had spotted me on the Upper West Side.

Traveling also makes you notice things. Themes emerge. From my busy week crisscrossing the country, two conversations keep resonating in my thoughts.

One was a discussion I took part in on Tuesday at the Ruderman Jewish Special Needs Funding Conference, a remarkable gathering of people who are passionate about the fields of special special needs and people with disabilities. That’s where I heard  Jason Lieberman, who is 33 and has has cerebral palsy. Jason walks with the help of crutches and his speech can sometimes be strained, but that doesn’t dampen his terrific wit — or weaken his very strong opinions.

Jason is an advocate for people with disabilities, and told a story about Read More »

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‘I Am Not Going to Grieve’

I’m guest blogging this week on Tavis Smiley’s PBS website, where you can find a version of this piece:

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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 Read More »

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‘Do you have your books?’

I’m guest blogging this week on the Jewish Book Council Blog and Members of the Scribe. Here’s today’s post, on how Ezra derives comfort from some of his favorite books:

Every Saturday morning, I ask my son Ezra the same question. As our family prepares to head out for the walk to synagogue, I stop Ezra with five words before he gets to the door:

“Do you have your books?”

This sends him to his bedroom to fill his red backpack with a handful of volumes: the Pixarpedia, a detailed taxonomy of Pixar’s animated movies; a 600-plus page animal encyclopedia; and sometimes a canine almanac called The Dog Breed Bible.

It’s an unusual selection, but Ezra, who is 15, is a singular kid. High-functioning autism makes it difficult for him to sit in one place, whether that place is his math classroom, a restaurant booth, or the pews of our Read More »

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‘My daily dose of joy’

Reading a memoir, readers often surmise that there must be some part of the tale that the author left out, some additional material that was taken out to serve the larger point. A few times lately, interviewers—or, sometimes, acquaintances— have mentioned that I must have opted not to include some of the more difficult moments of raising Ezra. Perhaps, they suggest, I omitted painful parts of my experience to serve the narrative?

In writing Following Ezra, it was important to me to be true to my family’s real experience. I knew (or hoped) parents of children with autism would read my book, and I did not want to give them false hope. That’s one reason that the book’s final chapter, the climactic passage about Ezra’s bar mitzvah, begins with some of the more difficult Read More »

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Struggling with The Divine

I’m guest blogging this week on the Jewish Book Council Blog and Members of the Scribe. Here’s my first piece, on talking to Ezra about God:

I was a guest on a radio talk show last week when the interviewer offered a question that caught me off guard. In the midst of a discussion about raising my son Ezra, who has autism, she asked: “With a person who is so comfortable with things that are very concrete and predictable, how do you explain a concept like God?”

As it happens, God comes up in conversation quite a bit in our household. My wife is a rabbi who teaches Jewish texts at a Jewish community high school. We attend synagogue every Shabbat, and our family life revolves around the Jewish calendar.

Ezra, who indeed craves the predictable, has always been attracted to the more concrete aspects of Judaism: the calendar, the holiday cycles, the weekly rituals. At an early age, he memorized the ten plagues, and began acting them out—dramatically, and in order—at our seder. He has always been Read More »

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