Extraordinary fathers, extraordinary sons

Loyal blog readers might recall a post I wrote last spring after hearing a piece on NPR about a memoir written by the father of a child with severe disabilities. I ended up buying The Boy in the Moon for my husband as a Father’s Day gift. Mike just finished reading it and is recommending it to just about everyone he knows.

Well, everyone he knows that realizes we have a son, I guess. Gus lives in a group home hundreds of miles away. Like other parents, we love our son. Think about him. Worry about him. But loving a child who has autism or other severe disabilities can be difficult to explain, so we tend not to try.

Mike admits that he wonders what people think of what it’s like raising a son like Gus. He can get angry if he detects pity — or condescension — toward Gus, toward Mike and me, or the unspoken wonder that we could love a kid like Gus. And he can get hurt if people don’t ask — or don’t know how to ask — about our son. And then, when they do, we can tell that sometimes they don’t really want to hear the answer.

Mike says that over time, he has come to understand that Gus, and life with our son, simply had to be a mystery to others. “I mean, c’mon Beth,” he says. “Gus’ life has been — at least in real time — kind of a mystery to me.” Gus lived with us at home for 16 years, and all that time Mike felt like he had no way of telling others what that was like. And he feels like there is little way to explain what it is like having him live away from us now, either. After reading The Boy in the Moon, though, he says he doesn’t have to. He says Ian Brown, a writer for the Toronto Globe & Mail, has done a superb job explaining what it’s like to live with an extraordinary son. Now he wants all our friends and family to go out and buy The Boy in the Moon and read it as soon as they can fit it into their schedules. He insists he’s not asking them to do this just for me and Mike and Gus, but he does admit to selfish motives. He says if our friends and family read this book — which is the author’s account of raising and trying to understand his son Walker, who has a rare genetic disorder that leaves him with multiple disabilities — they’ll know what it has been like raising Gus. While Mike was reading the book, he’d often read Brown’s accounts out loud to me. It was uncanny how similar Ian Brown’s stories about raising Walker were to Mike’s memories of raising Gus — from receiving the genetic diagnosis to the 16 years of sleep deprivation to what it was like to parade around hyper-normal places like Disney World when things are not normal.

Most important to Mike, however, is that readers who finish the book will come out with a better understanding of why raising a son like Gus is worth it. While reading the book, Mike took to quoting one thing the author said about Walker: “Everything about him compels me, unless it terrifies me, and sometimes it does both.”

The first half or so of the book covers Brown’s experience as a parent and a husband, but the rest is a look at what people with autism and other disabilities, like Gus and Walker, have to offer the rest of us. What they can teach us. Mike was fully aware that some readers might be skeptical that people with severe disabilities can teach us anything at all, or that readers might expect the book to be saccharine-sweet. “The book it’s richer — and more complicated — than that,” he told me. All of you families and caretakers know that people like Walker and Gus teach us extraordinary things. Mike says this book explains how and why better than he ever could. It turned out to be a perfect Father’s Day gift for Mike, and now, on his recommendation, I hope you’ll read it, too.


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