Romy Wyllie

Loving Andrew: A Fifty-Two-Year Story of Down Syndrome

KIRKUS and INDIEREADER included "Loving Andrew" among their BEST INDIE BOOKS OF 2013.


“To know Andrew was to love him.” This is a poignant story of a family who chose to bring up their son with Down syndrome as a fully involved member. They overcame other tragedies to help Andrew be the best he could be, being what he was with the gifts that he was given.

In spite of being told that their firstborn son would have many limitations in life, his parents were amazed at what Andrew achieved. He learned to read and write, ride a bicycle – sometimes too far from home – play the piano, swim almost as well as his siblings, ride horseback and perform dressage, graduate in special education from high school, take classes at a community college, travel alone on Chicago’s public transportation system, hold a job in a regular supermarket for 25 years, win ribbons and medals in Special Olympics events, and serve as the lead acolyte in his church. Andrew’s ability to describe the demons of his paranoid schizophrenia that plagued his later years provides a picture of a little-known ailment among the Down syndrome population.

The book is aimed at a broad audience in order to help all people understand the humanity and value of a person with a disability. This is especially important as medical technology continues to improve prenatal testing for abnormalities, and parents are faced with the heart-wrenching decision to terminate a pregnancy or risk having a less-than-perfect baby. The number of children born with Down syndrome is being drastically reduced, just as opportunities for them to be accepted into the mainstream of life have never been better, and their development has improved exponentially. No embryo selection or prenatal test can guarantee a flawless product or rule out unexpected calamities such as the death from cancer of our second baby.

Excerpt from the Foreword by Brian Chicoine, MD:
“As the medical director of the Adult Down Syndrome Center… I always appreciate any occasion to get a more in-depth look into the lives of those individuals and their families. This book is one such opportunity… It is about the hope of that journey, and is told through the life of an amazing, delightful, loving, fun, and caring man. Each person has a story. Andrew certainly had his. In this book, you will get to know Andrew, learn his story, appreciate him, and love him. Perhaps you, too, will experience the journey, the hope, and the casting aside of preconceived notions.”

When the hospital staff delayed bringing Wyllie her firstborn child after his birth in 1959, she was immediately uneasy, and rightfully so: Andrew was diagnosed as a mongoloid, or what is now known as having Down syndrome. Troubled by the doctor’s explanation that “sometimes the best policy is to inform the mother, before she even sees her baby, that the child has died and then place him immediately in an institution,” she and her husband decide to keep their son at home and raise him as normally as possible. Wyllie details the early struggles with Andrew, from difficulties nursing to apprehension over what their family, friends and neighbors might think. She recounts their lengthy search for a school program to fit Andrew’s capabilities and their great fortune in finding Lambs Farm, a still-operating facility where Andrew lived happily for most of his adult life. Wyllie’s writing is lucid and remarkably forthright. She doesn’t shy away from the negatives, such as her frustrations and mistakes as the parent of a special needs child, or her concerns that her other, “normal” children were somehow being slighted. She also conveys the grief she faced in the tragic cancer death of her 14-month-old second child. The book features Andrew’s writing and drawings, letters from his teachers and co-workers, and interviews with many of the people in his life, which provide an intimate look at his intellectual, emotional and physical development. As a comparison, Wyllie also chronicles the experiences of two younger children, one born in 1980 and one in 1994, who also suffer from Down syndrome. Her account of the history and science behind the disorder is thoroughly researched yet highly readable, and she evenhandedly discusses the possible impacts of modern prenatal genetic testing. Of her ongoing struggle for better resources, Wyllie remembers that “the most difficult task was to capture the interest of the average person who does not have a special needs child.” Transcending this aim, her book is as richly absorbing for casual readers as for caregivers and loved ones of Down syndrome children and adults.
This clear-eyed, intelligent memoir is an invaluable resource for anyone whose life is affected by a developmental disability.

INDIEREADER REVIEW by Catherine Langrehr:

"Loving Andrew" is a biography of the author’s oldest son, Andrew, who was born in 1959 with Down syndrome.

At the time, social attitudes were such that the doctor advised Andrew’s father to tell his mother that the baby had died at birth, and to quietly have him institutionalized for life. Instead, the Wyllies decided to take him home and raise him, giving him the love and family structure they had always intended to give their children. Mrs. Wyllie tells the story of Andrew’s life in clear and loving language, discussing his education, his relationship with other children, including his (non-disabled) siblings (Jean, who died of cancer at 14 months, Lisa, and John), and his development. The book discusses Andrew’s struggles and accomplishments as he learned to take care of himself, hold down a job, manage a long-term romantic relationship, and function effectively in a group home, until schizophrenia and Alzheimer’s sadly brought an end to his life at the age of 52. Additionally, Mrs. Wyllie also discusses the similar milestones of two other people with Down syndrome, Lindsay Yeager (born in 1980) and Blair Rodriguez (born in 1994), in order to show how attitudes and available services have changed over time since Andrew’s birth.

The story is told with grace and sensitivity, not descending into condescension, nor ever scolding parents who made different choices than they did. The author’s deep love for her son shines through the book, warming it with her memories of his personality and charm. She is unfailingly and courageously honest about her thoughts and internal struggles, even when those are less than flattering to herself. Her experiences and lessons learned are clearly set forth, along with her wise and thoughtful perspective on topics such as educational mainstreaming, romantic and sexual education for the developmentally disabled, and the touchy subject of prenatal testing and selective abortion. The references to Ms. Yeager and Ms. Rodriguez give a different, and useful, perspective on Down syndrome from the point of view of younger generations. But the real light of the book is Andrew, and his self-assured strength, generous warmth, and heartfelt desire for independence are truly admirable.

Several parts of the book are absolutely heartrending – there are parts of it, such as the death of Andrew’s baby sister Jean, and Andrew’s own last struggle with mental illness and death, which will make any parent cry, and likely most non-parents as well. But the emotional tone of the book in general is loving, gentle, and full of hope.

Though Down syndrome children are of course individuals like every other child, and though the syndrome includes a wide spectrum of behaviors and capabilities, any parent facing the prospect of raising a child with Down syndrome might find this book to be a reassuring and helpful resource. It offers a view of not only the problems and struggles, but also the great joys that likely lay ahead of them. And anyone may be enriched by the life story of a young man who achieved a great deal, and became a wise and loving human being, despite having so many obstacles thrown in his way from birth onward.

LITERARY SALOON - Review by Rick Kogan.

Published in 2012, this book recently won second place in the 2013 nonfiction category of the IndieReader Discovery Awards, giving it the attention it deserved the first time around. Deeply personal, sometimes heartbreaking but ultimately uplifting, this is a love story between author Romy Wyllie and her son Andrew. Much of it is set in Hyde Park, where Andrew starts his life, school and work, and at Lambs Farm in Libertyville, where he was “one of the first residents of (the) new supportive living arrangement opened” at that pioneering and visionary institution, which has been empowering people with developmental disabilities for more than 50 years. There are triumphs and there are tears, and it is a credit to Wyllie’s gifts as a writer that she tells this story without artifice and embellishes it with all manner of important and revelatory tales of society’s changing attitudes about the disabled. Andrew died in 2011. He lives on here.

Once you start Loving Andrew by Romy Wyllie, you'll have a hard time putting it down. Wyllie deftly combines her inspiring personal story of the challenges and joys of raising Andrew, her first-born son who has Down syndrome, with fascinating information about how society has progressed in the treatment and acceptance of handicapped people. This is a book for everyone.
–Fran Yariv, author of seven novels, including Last Exit and Safe Haven

In Loving Andrew, Romy Wyllie has written a moving, unflinching disability memoir that tells a story most disability memoirs don't or can't touch. This is not a book about a cute, charming kid with Down syndrome; it's about a cute, charming kid with Down syndrome who grows up to become an independent adult with multiple challenges. It's also about what "family," "love," and "independence" can mean—for all of us. Loving Andrew tells a story that needs to be told, a story that needs to be heard.
–Michael Bérubé. Director, Institute for the Arts and Humanities, The Pennsylvania State University.

Selected Works

An in-depth, richly illustrated architectural history of the California Institute of Technology.
The residential designs of Bertram Goodhue are described in the context of his ecclesiastical and secular projects.
A mother's inspirational and informative birth-to-death story of a son with Down syndrome, born in 1959.

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