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Raising Henry: A Memoir of Motherhood, Disability, and Discovery Hardcover – September 24, 2013

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Editorial Reviews

From Booklist

In this moving, literary book, Adams, a professor of English and American studies at Columbia University, shares the story of her second son, Henry, born with Down syndrome. Though she was pushing 40, she did not get amniocentesis when she was pregnant, and she doesn’t regret it, either. “The amnio reveals the genetic makeup of your fetus. That’s all,” she says. “It certainly can’t tell prospective parents what it will be like to raise a child with a disability or anything about the person that baby will become.” As she notes, “everyone came away charmed by Henry.” The book is filled with wonderful anecdotes portraying Henry in all his lovability. And it raises important questions about now-routine genetic testing to identify chromosomal abnormalities. Adams writes, “Down syndrome isn’t a disease that needs to be cured. The problem is with the world not our kids. I want to change the way other people think. I want to change the world.” This book is a step in that direction. --Karen Springen

Review

"An important, hopeful book."—Susannah Meadows, New York Times
(Susannah Meadows New York Times)

"In this quietly moving memoir, Adams writes about coming to terms with her son's diagnosis, education, limitations, and identity. . . . Generous and honest."—Boston Globe
(Boston Globe)

"We learn from Adams what it means to have a son very different from most others in mind and body, whose future is uncertain, but whose life is infused with love and so worth living."—Jerome Groopman, New York Review of Books
(Jerome Groopman New York Review of Books)

"Powerful, poignant, and persuasive."—Glenn Altschuler, Psychology Today: This is America blog
(Glenn Altschuler Psychology Today, This is America blog)

"In her luminous memoir . . . Adams writes about how the birth of her son changed everything, and, at the same time, brought her back to the beginnings of a journey that had been long in the making."—Sarah Torretta Klock, New York Family Magazine
(Sarah Torretta Klock New York Family Magazine)

“This is a terrific book—gorgeously written, beautifully realized.”—Michael Bérubé, author of Life as We Know It: A Father, a Family, and an Exceptional Child
(Michael Berube 2013-03-12)

“…this book is a composite of the challenges and enjoyments of the first few years of a child with special needs and the family.…very useful for parents, family members, but also professionals including physicians, nurses, therapists, and genetic counselors.”—Fran Hickey, M.D., Director of the Sie Center for Down Syndrome, Colorado Children’s Hospital
(Fran Hickey 2013-03-14)

“Adams succeeds in the difficult task of rendering intensely personal material in a way that makes any reader reflect on larger cultural questions…This book should be mandatory reading for all medical students, especially those entering the fields of obstetrics and gynecology.”—Georgina Kleege, author of Sight Unseen and Blind Rage: Letters to Helen Keller
(Georgina Kleege 2013-03-21)

"Rachel Adams’ Raising Henry: A Memoir of Motherhood, Disability, and Discovery is a must-read, moving, thought-provoking, important. I highly recommend."—Jon Colman, President, National Down Syndrome Society
(Jon Colman 2013-04-08)

"Raising Henry is not just a forthright and poetic family chronicle; it is a provocative exploration of Down syndrome, disability, and what it means to be human. Adams is feisty, compassionate, and brilliant."—Penny Wolfson, author of Moonrise: One Family, Genetic Identity and Muscular Dystrophy
(Penny Wolfson 2013-04-16)

"With extraordinary eloquence and breathtaking honesty, Rachel Adams has allowed us to share every intimate moment of the profound journey of parenting her son Henry. I found myself savoring every beautifully chosen word. This is a remarkable memoir!"—Emily Perl Kingsley, author of "Welcome to Holland" and Writer, Sesame Street
(Emily Perl Kingsley 2013-04-18)

"Characterized by a poignant honesty and great integrity, probing intelligence and nuanced thinking, this is a wise, admirable, illuminating book."—Priscilla Gilman, author of The Anti-Romantic Child: A Story of Unexpected Joy
(Priscilla Gilman 2013-04-30)

“Rachel Adams brings us along on her personal journey, and, along the way, we all discover that exceptionality is not ultimately defined by our genetic beginnings.”—Brian Skotko, M.D., M.P.P., Co-Director, Down Syndrome Program, Massachusetts General Hospital
(Brian Skotko 2013-06-14)

"Rachel Adams has a novelist's eye for story and a scholar's contextual insight. She's not afraid to document how she changes as events in her life take place, and thus, as her son grows, we see her grow as well."—Marie Myung-Ok Lee, author of Somebody’s Daughter
(Marie Myung-Ok Lee 2013-10-08)

Winner of the 2014 Delta Kappa Gamma Society's Educator's Award.
(Educator's Award The Delta Kappa Gamma Society 2014-04-11)
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Product Details

  • Hardcover: 272 pages
  • Publisher: Yale University Press; First Edition edition (September 24, 2013)
  • Language: English
  • ISBN-10: 0300180004
  • ISBN-13: 978-0300180008
  • Product Dimensions: 0.8 x 5.5 x 8.2 inches
  • Shipping Weight: 15.5 ounces (View shipping rates and policies)
  • Average Customer Review: 4.6 out of 5 stars  See all reviews (18 customer reviews)
  • Amazon Best Sellers Rank: #722,826 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

9 of 10 people found the following review helpful By J. DAVIDSON on October 7, 2013
Format: Hardcover Verified Purchase
Disclaimer: Rachel is my friend and Columbia colleague, and I talked to her regularly about the book while she was writing it. Please discount any bias, though - this is a remarkable book about an important subject. It reads beautifully - it contains a good deal of insight that would be especially interesting to parents of young children, but it's really about important questions to do with our beliefs about control and our expectations about what life will bring us that almost any reader will find gripping. Recommended for fans of Michael Berube, Andrew Solomon, Priscilla Gilman and those with an interest in childhood development and disability studies.
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3 of 3 people found the following review helpful By Lise Kim Horton on December 20, 2013
Format: Hardcover
As someone who has spent her life with a younger sibling with special needs, and worked with the mentally challenged, including many Down syndrome children, youths and adults, I was particularly intrigued to hear about this book. Rachel Adams is an academic, her husband is a lawyer and when their second child is born their world is thrown into surreal chaos when he is diagnosed as suffering from Down syndrome. Raising Henry is her memoir of the first three years of Henry's life, during which she is forced to navigate the medical, educational and social service worlds in pursuit of the best care for her child. This is a beautiful tale, but also a sad one. A joyous one but also a bitter one. Which is fitting as the experiences she relates run an almost unimaginable gamut. She doesn't just write about her own life, but offers insight into the past treatment children such as Henry would have received. It is chilling to see how recently - the 1970's - the standard advice was: Institutionalize your child. That we have come as far as we have in welcoming children with disabilities into our society, rather than hiding them away, attempting to give them everything they need to be as whole and successful as possible, is heartwarming. But there is still much more to be done, and Rachel Adams shines a light on how one woman can make the difference, and how one little boy can instill such determination, and such love, not only in his mother and father but in everyone who meets him. Adams doesn't shy away from making admissions that may not shine a good light on her. She talks about her own frustrations and reactions. But she also introduces you to a wonderful cast of characters, and some not so wonderful, and you are welcomed into her world by virtue of her honest story.Read more ›
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5 of 6 people found the following review helpful By Ordinary Mom on October 19, 2013
Format: Kindle Edition Verified Purchase
This book is about the author's experiences raising her disabled son over his early years. What makes it especially interesting is that the author is a disabilities scholar. She is also a great writer. I highly recommend this book to any parent, as her observations about the intersection between our own personal life experiences and our role as parents are fascinating for any parent to read. It's also just a well written book that tells a profound story.
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4 of 5 people found the following review helpful By Darian Burns on January 15, 2014
Format: Hardcover
“Raising Henry” by rachel Adams is a smart, funny, and incredibly moving book.  As a parent of a disabled child it often seemed Adams journey with her son Henry was my journey with my son. It felt that way because it was. This is the story of so many families.

One of the things which makes “Raising Henry” so effective is the self-deprecation. One thing that I really like about Adams’s style is her authenticity.  

Adams is a scholar of disability studies, and she brings many insights from her years of research into this book about her son, Henry.  As both a scholar and the parent of a child with Down, she alternates between working to make the world more accepting of people with physical and intellectual disabilities and the lure of medical “cures” for the condition. Any parent with a disabled child knows of the constant temptation to believe in the newest “cure”.

One of the strongest parts of her book is her diagnosis of the medical community’s inability to see children with Down syndrome as anything but “patients,” “sufferers,” or otherwise bearers of a medical condition that requires surgical or medical treatment rather than patient accommodation by educators and the public at large.  As the mother of a loving and very much loved child, she resents the fact that physicians and genetic counselors see the birth of Henry as something for which they must apologize and console her.   She is flooded with relief when people congratulate her on the birth of Henry, as they would the parent of any normal newborn, and resentment for the questions about genetic testing and the unspoken, unspeakable question, “why didn’t you abort?” 

Adams answers the many questions with what should be obvious. Henry’s life is his. He is and because he is he has value, purpose, life.
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2 of 2 people found the following review helpful By mrea4795 on April 17, 2014
Format: Hardcover Verified Purchase
A great read! As a student studying to be a speech pathologist but also just as an interested young adult, I'm so thankful to Rachel for sharing her story. Her story is insightful, witty and colored in a wonderful way by the constant push and pull of academia and reality.
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1 of 1 people found the following review helpful By Dtwn on November 28, 2013
Format: Hardcover Verified Purchase
I enjoyed the honesty that went into the writing of this book, and was lucky enough to have the opportunity to speak to Rachel Adams in one of my classes. The book is an honest look at the difficulties facing the parents of disabled children. While her story may not be relevant to everyone due to her economic well-being, it is certainly worth a look.
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