Good Life

Father tells the next chapter in son’s story

Jamie Berube holds Becca as he sits with his parents, Michael and Janet Berube, on Wednesday. Michael Berube authored “Life as Jamie Knows It” about his son’s journey into adulthood with Down syndrome.
Jamie Berube holds Becca as he sits with his parents, Michael and Janet Berube, on Wednesday. Michael Berube authored “Life as Jamie Knows It” about his son’s journey into adulthood with Down syndrome. adrey@centredaily.com

One of the more convenient aspects of writing a book about your son is that sequel rights can usually be negotiated at a steal. Children are nice that way.

But the truth is that Jamie Berube isn’t a child any more. He is in his mid-20’s, travels independently and even holds down a couple jobs.

Bigger. Bolder. Higher budget. If that doesn’t scream “Part II” then what does?

“Life as We Know It” was published in 1996, when Jamie was 5 years old. It told the story of a young boy growing up with Down syndrome from the perspective of someone in the position to know — his father, Michael Berube.

This was a harder sell because when you’re dealing with intellectual disabilities, people would rather hear about kids than adults.

Michael Berube

His story — their story— was named a New York Times Notable Book of the Year. Almost 20 years later, the time seemed right to fill in the next chapter.

“I wanted to wait until he was out of school,” said Michael, who is also the director of the Institute for the Arts and Humanities at Penn State.

The original book dealt mostly with issues entrenched in the hazy days of early childhood. For the follow up, the narrative, like its protagonist, had to take its first tentative steps into adulthood.

“Life as Jamie Knows It” addresses growing up in all of its complexities, from the natural evolution of family dynamics to the limited work scape that’s awaiting people with intellectual disabilities.

It’s great pitch material — but not particularly commercial.

“This was a harder sell because when you’re dealing with intellectual disabilities, people would rather hear about kids than adults,” Michael said.

It’s a limited form of progress from the status quo of 50 or 60 years ago, when people facing those kinds of challenges were seldom discussed. By the time that 1996 rolled around, “Life as We Know It” could have been considered an overture.

“We were hoping to try and make the world a more welcoming place for him,” Michael said.

The overall success of that goal is difficult to quantify, except to say that Jamie has a full dance card. He keeps the books moving at Penn State University Press, volunteers with Centre County PAWS and competes in Special Olympics.

Life is short sometimes. Life is long sometimes.

Jamie Berube

During the writing of “Life as Jamie Knows It,” he graduated from subject to collaborator. Both father and son have excellent memories and will occasionally argue about the specific dates surrounding an event or a piece of trivia.

Jamie would listen as his father read fresh pages of the book aloud, jumping in with corrections or an unabridged retelling of a classic family anecdote.

“Either he would augment my memory or tell me something I never knew,” Michael said.

The published book reflects their collective experience and wisdom, passed on to posterity for safe-keeping. If Jamie could go back to that 5 year-old in the pages of “Life as We Know It” and offer a piece of advice, it would be to remain fearless in the face of new things, be confident and be yourself.

“Life is short sometimes. Life is long sometimes,” Jamie said.

Frank Ready: 814-231-4620, @fjready

Learn more

You can find “Life as Jamie Knows It” at Webster’s Bookstore Cafe, Amazon or www.beacon.org.

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