Life As We Know It: A Father, a Family, and an Exceptional Child

This book works best as memoir. Berube is very moving when he describes the first years of his son's life. I too am the father of a boy with Down's syndrome and can vouch for the clarity and truthfulness of the account. The book's many digressions into politics and philosophy could put off some readers, but most of them are well-worth reading and pondering. I only wish they hadn't interrupted the flow of the personal story. The only sidebar I really disagreed with was the one on abortion. It was too strident (Berube is pro-choice), especially coming from someone well-placed to see both sides of this issue. That said, I would recommend this book to any parent of a mentally retarded child, or, for that matter, to any citizen concerned about the place of disabled people in our society. I hope Berube writes another book ten years from now and lets us know how Jamie is doing.

Michael Berube's Life As We Know It is both one parent's memoir of raising a Down Syndrome boy and a larger exploration of how our society views those different from the "norm." Berube and his wife had no idea their second child would be "disabled" at birth, and much of the book recounts their joy and struggles in raising Jamie, a very unique and special boy. However, Berube's book also has a larger purpose and context. He tackles how our society labels persons like Jamie, and how this use of language influences the child's outcome. For example, in the early part of this century, the common medical name for Jamie's condition was "Mongoloid idiot." This term certainly expressed what society thought such children were capable of; predictably, the common medical strategy was to give up on these children, institutionalize them, and move on. With the passage of time, terminology has changed, and Berube argues that this change both reflects and directs society's view of its members. The biggest struggle for Berube as a parent, and for us I believe as a society, is to get beyond -- or change entirely -- the labels given and focus on the persons and capacities behind such monikers. Berube's son, like my three (fortunately not "differently abled") children, is a unique person, and to overemphasize the name given to his condition (or the stereotypes invariably called forth) is to shortchange both Jamie, his parents, and all of us. Berube sensibly does not argue that Jamie would be without problems if everyone failed to name his condition. He makes plain, however, that there is more to destiny and parenting than name-calling. A very important and moving book.

This is not exactly the book its publisher would have you think it. It is a much better book, and a much scarier one. True, in one sense the book is about the happy family pictured on the front cover--Bérubé; his wife, Janet Lyon; their firstborn, Nick; and especially Jamie, born in 1991 with Down syndrome. And that is a book well worth reading, as the author skates Lemieuxlike the daunting line between sentiment and sentimentality, never lurching offside. The story of Jamie and his family is an inspiration, but not of the shallow sitcommy sort. This is a family much like your own, except that they have taken on a challenge you're not sure you ever could. They inspire because they're not sure either, not for a moment, that they can handle it. But after a while the reader notices something that seems to have escaped the author and his family: in living life as they know it, they have not only survived, they have prevailed. There's another book here, though, a subve! rsive one, a book that the publisher would rather you didn't find out about until after you've made your purchase, 'cause publishers are certain (trust me) that you'd never buy a book like this on purpose. This is a book of--good lord, no!--political philosophy! And that's not the worst of it! It's a potent plea for--dare I say it?--social liberalism! Let's face it, for a lot of us--certainly for Trent Lott and the Newtlings--the Jamie Bérubés of the world are nothing more than props for that cheap sort of sitcom sentimentality that lets us feel tolerant and open-minded ("Why, the little trooper can tie his own shoes! Good boy!") while we cinch our purses and preach the gospel of social Darwinism. Bérubé senior is having none of that. Precisely because he sentimentalizes neither Jamie's struggles nor his triumphs, precisely because he represents his son not as type or symbol but simply as a person who gets it right sometimes and screws up sometimes--who, in sho! rt, has to stake out his own 40 acres of humanity, just lik! e every one of us--he makes us see why we owe his kid more than we seem willing to give--his kid, and all the rest of our kids, every one of whom is exceptional.

Berube's second son, Jamie, has Down Syndrome. This book is an eloquent retelling of the family's adjustment to life upon Jamie's birth and through the next few years. Berube writes both intelligently and emotionally, touching on and interweaving issues of public policy, philosophy and the day to day realities of adjusting to a major shock. He vividly describes the unexpected joy and challenges that have come with having Jamie join the family. His story is inspirational and universally relevant, since we all at some point face and need to integrate life-changing events. Berube also demonstrates an excellent understanding of early child development, particularly in the linguistic domain. He successfully covers technical topics in an accessible, but always professional style. However, what is likely to remain with the reader is the enormous love with which this book is infused

This was one of the most thought provoking books I've read in a year! It moved me and made me think about all people and their needs and, more specifically, about my responsibilities as a parent to my daughter, who is special but not in the way that will make people shy away from her. In an era in which every one talks about personal responsibility but hardly anyone actually practices it, this book gave me hope that the future might be better than the present for my daughter and all children! I'd like to know the author and his family so I could be inspired by their thoughtfulness and committment