Customer Reviews

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

5 star:		(4)
4 star:		(3)
3 star:		(2)
2 star:		(1)
1 star:		(1)

 

 

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.

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 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.

Berube writes a compelling book about his struggles to remain true to the parent/child relationship with his son who is diagnosed with Down's syndrome. Berube's book does a nice job of showing a different side of Downs syndrome - one where a child is a child, not someone (thing) to be feared, locked away or pitied. He writes clearly about the pressures to medicalize his son (meaning talk about him in the ways doctors would) since the medical world is such a part of their history with him. He tells of how he and his wife work to maintain decisions that are respectful of the child they are raising. Berube does a great job of explaining medical processes while also telling where they fall short, how they apply differently to different people and how he can continue to see others' points of view and wish more people could see his. Berube brings up big issues like abortion and (public vs private) health care to name a few. He relates his personal feelings to larger social conditions like how our society treats people with disabilities (which is not very well). This is a must read for teachers, doctors, nurses, and infact everyone, since we, as a society, need to work on seeing disabled people as people.

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

I read this book when it first came out a few weeks after my daughter (subsequently dx with Asperger Syndrome) was born. Minor disclosure: I went to grad school w/Berube and his wife, though I didn't know them. I've recommended this book to any number of people over the years: I've found him incredibly good at and honest about describing the kinds of thought experiments and adjustments parents have to go through. Yes, he gets into politics, deaf culture, philosophy, and law, which makes sense given his and his spouse's line of work and what I am sure are general habits of mind. I found it helpful, personally: there are a lot of memoirs out there that describe individual experiences; there are much fewer that frame those experiences within broader contexts such as policy, education, law, and yet those contexts affect our experiences (and our children's experiences) very profoundly.

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

I read this book as a pediatrician wanting to gain insight into my patients and their families. I really enjoyed the descriptions of raising their child. However, I found the philosophy and policy analysis a little too long winded and less helpful.

The rating I gave the book is an average of two seperate ratings. As a book of essays on everything from abortion to the state of education in the United States, Berube's book would rate five stars as a memoir by a father on a son with Down's Syndrome it rates two stars.

In fact we hear very little about Jamie Berube throughout this book. Yes, he pops up from time to time, but only to serve as a springboard for his father's rants on subject after subject.

Certainly the elder Berube's essays are thoughtful and insightful, but this is not the book I was looking to read. I find it misleading in the way that it is packaged as a memoir. Perhaps the publisher should rethink this, sell it as an essay collection, and then I would review it as a five star book.

I had expected this book to be a memoir about a boy with down syndrome, I thought that it was a dramatic story with lots of emotion. Instead it's simply a book discussing in great depth about biology and genetics. It discusses the reproduction process and mitosis and goes on and on on the topic of genetics. The book later goes on to talk about abortion and whether or not it should be allowed, and many other related debates. While I found the discussions about genetics and abortion to be relatively interesting, I don't understand why the book is based around it. This book is not so much a memoir as it is a biology textbook in disguise. if you want to read a biology textbook then by all means, buy this book. However, if you would like to read a touching memoir about a boy and his life with down syndrome, then try a different book, because as other reviewers have said: this book is not what it claims to be