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

Michael Berube (Author)

Book Description

Publication Date: October 1, 1996

An impassioned and moving account of a father's attempt to realize the full potential of his child, born with Down syndrome. In telling the story of his son's development during the crucial first four years of life--learning to walk and talk, to move into the world and the lives of those around him--Michael Berube engages the charged issues involved in James's growth.

Editorial Reviews

Amazon.com Review

When Michael Berube's second son Jamie was born with Down syndrome, life as he had known it was gone. Suddenly abstract questions the successful academic and author had been too busy to think about were thrust before him. Berube tells how he and his wife came to know this astonishing new person as their son, an individual like their other son and yet who, to the world, was not an individual but the syndrome itself. Berube intersperses the story of Jamie's development with a critical analysis of society's response to disability, the inadequacies of American health care, and a discussion of such issues as eugenics and the priority society gives to budgeting for the disabled.

From Publishers Weekly

The twofold purpose of this impassioned reportage by the parent of a child with Down's syndrome is eloquently achieved by Berube (Higher Education Under Fire). First, he paints a clear picture of his beloved son, Jamie, and of the first four years of his obstacle-strewn life; second, he thoughtfully raises difficult questions "about our obligations to each other individually and socially, and about our capacity to imagine other people." Berube's investigation into the contradictory social effects evoked by clinical procedures in utero, genetic testing and the whole concept of "disabled" children parallels the poignant, intimate chronicle of how he, his wife (also a Ph.D.) and older son cope with the challenge of raising Jamie, whom he describes as "gradually emerging, like a slowly developing Polaroid of a child, into a vivid and indelible creature with a sense of humor." Berube, a professor of English at the University of Illinois, frames advocacy and righteous anger with wry humor. In doing so, he accomplishes the difficult feat of combining an extraordinarily personal narrative with an intelligent, knowledgeable discussion of public issues raised by his private experience.
Copyright 1996 Reed Business Information, Inc.

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Product Details

• Hardcover: 284 pages
• Publisher: Pantheon; 1st edition (October 1, 1996)
• Language: English
• ISBN-10: 0679442235
• ISBN-13: 978-0679442233
• Product Dimensions: 8.3 x 5.4 x 1.2 inches
• Shipping Weight: 1 pounds
• Average Customer Review: 3.7 out of 5 stars  See all reviews (11 customer reviews)
• Amazon Best Sellers Rank: #715,491 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

36 of 37 people found the following review helpful:

5.0 out of 5 stars Exceptional takes, August 4, 1998

By A Customer

This review is from: Life As We Know It: A Father, a Family, and an Exceptional Child (Paperback)

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.

11 of 11 people found the following review helpful:

4.0 out of 5 stars A moving story of a father and his special son, November 14, 1998

By A Customer

This review is from: Life As We Know It: A Father, a Family, and an Exceptional Child (Paperback)

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.

9 of 10 people found the following review helpful:

4.0 out of 5 stars Excellent book on the disabled in modern society, March 5, 1999

By A Customer

This review is from: Life As We Know It: A Father, a Family, and an Exceptional Child (Hardcover)

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.