Raising Henry


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A Memoir of Motherhood, Disability, and Discovery

Rachel Adams

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A mother’s deeply moving account of raising a son with Down syndrome in a world crowded with contradictory attitudes toward disabilities

Rachel Adams’s life had always gone according to plan. She had an adoring husband, a beautiful two-year-old son, a sunny Manhattan apartment, and a position as a tenured professor at Columbia University. Everything changed with the birth of her second child, Henry. Just minutes after he was born, doctors told her that Henry had Down syndrome, and she knew that her life would never be the same.
In this honest, self-critical, and surprisingly funny book, Adams chronicles the first three years of Henry’s life and her own transformative experience of unexpectedly becoming the mother of a disabled child. A highly personal story of one family’s encounter with disability, Raising Henry is also an insightful exploration of today’s knotty terrain of social prejudice, disability policy, genetics, prenatal testing, medical training, and inclusive education. Adams untangles the contradictions of living in a society that is more enlightened and supportive of people with disabilities than ever before, yet is racing to perfect prenatal tests to prevent children like Henry from being born. Her book is gripping, beautifully written, and nearly impossible to put down. Once read, her family’s story is impossible to forget.
Rachel Adams is professor of English and American studies at Columbia University, where she is also director of the Future of Disability Studies Project. She is the author of Sideshow U.S.A.: Freaks and the American Cultural Imagination. Adams lives with her husband and two sons in New York City.
"An important, hopeful book."—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
"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
"Powerful, poignant, and persuasive."—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

“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

“. . . 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

“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

"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

"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

"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

"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

“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
"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

"In this moving, literary book, Adams . . . shares the story of her second son, Henry, born with Down syndrome . . . 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."—Booklist

"In this quietly moving memoir, Adams writes about coming to terms with her son's diagnosis, education, limitations, and identity. . . . Generous and honest, Adams politely rejects some of the frames others want to put on her family. Henry isn't an angel, she isn't a saint."—Boston Globe

Winner of the 2014 Delta Kappa Gamma Society's Educator's Award
ISBN: 9780300198911
Publication Date: October 28, 2014
272 pages, 5 1/8 x 8