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

"Loving Andrew" has received eight awards. See Events page for details.

THE US REVIEW OF BOOKS. Review by Jacky Gilchrist

"...Andrew touched the lives of many, helping them in his special way become better people."
In today's world of Individualized Education Programs (IEPs), Individualized Family Service Plans (IFSPs), and the Individuals with Disabilities Education Act (IDEA), it can be unfathomable to imagine a time in which babies born with disabilities were routinely separated from their parents. Yet, a mere five decades ago, it was commonplace. Often, mothers were not even told that their babies had survived the delivery. Instead of reconnecting mother and child, the doctors would whisk the child away to an institution, where he would live a grim existence and would often be sterilized against his will. Andrew Wyllie, the subject of this book, would have suffered the same fate had it not been for the love, determination, and perseverance of his parents.

Today, parents in the U.S. have access to a comprehensive support system to guide them in raising a child with a disability. While it is by no means flawless, Wyllie and other parents in her position would have considered it a godsend in the 1960's and beyond. Had Andrew been born a few decades later, he would have worked with a team of physical therapists, occupational therapists, speech language pathologists, and others at little to no cost to his parents—courtesy of IDEA. Instead, Wyllie and her husband Pete had little access to crucial information about Down syndrome, much less support services. Thanks to their tenacity, however, Andrew did have his own homemade therapy program. Wyllie discusses a stimulation and exercise program she and Pete designed themselves to help Andrew develop his poorly toned muscles, which undoubtedly helped him sit up without support in his high chair by about eight months of age.

Drawing on a collection decades in the making of letters, notebooks, and other source materials, Wyllie's book encompasses the whole of Andrew's remarkable life. It progresses from the early days of bringing Andrew home to State College, Pennsylvania, to moving back to their native England and introducing Andy to family, to helping Andy learn to walk and acquire important self-care skills.

The sensitive topic of introducing a child with special needs to friends and family members is explored with candor. During the early years, some of those who met Andy displayed reactions that often resonated with the prevailing social attitudes of the time. Instead of receiving the usual compliments about a baby's adorableness, Wyllie and her husband endured remarks such as "Oh, he isn't so bad," and "He'll grow out of it." And as Andy grew up, he endured a fair amount of bullying. But many people who met Andy gave him the benefit of the doubt, and all who became acquainted with him grew to love him and to admire his unwavering positive attitude toward life.

Later in her book, Wyllie touches on the particular difficulties of puberty in children with Down syndrome, and shows her pride in Andy as he thrives in high school and with his first forays into employment. Unfortunately, Andrew's personal successes throughout his life did not prevent his later diagnosis of schizophrenia nor his passing after his diagnosis of Alzheimer's disease.

Like parenting itself, Wyllie's book is a labor of love, characterized by admirable resolve and insightful socio-familial analysis. She unflinchingly explores her own early emotions toward raising a child with Down syndrome and the many hardships associated with raising a child with a developmental disability. While the challenges associated with raising a child with Down syndrome cannot be overstated, Wyllie's narrative also depicts the incredible rewards of parenting and the immeasurable love of a child.

This heartwarming story goes beyond the scope of a typical biography. Wyllie interjects keen historical insight along the way. Toward the beginning of the book, she discusses historical attitudes toward those with disabilities, which were unsurprisingly barbaric. Throughout the course of her writing, she goes on to describe how public acceptance of differences slowly began to change with initiatives from the Kennedy White House, grassroots efforts from an "army of parents" across the country who sought to form a national organization, and finally in 1975 the establishment of a free, appropriate public education (FAPE) for all children with the passing of the Education for All Handicapped Children law.

Wyllie isn't only a family biographer; she is a social historian who isn't afraid to offer her own analysis and criticism as needed. Her delightfully detailed book opens a door to another world—a world that often exists right in front of the average person without his realizing it. As the book winds down following the poignant recounting of Andrew's death, Wyllie discusses the lasting impact her son had on so many lives. In loving Andrew and refusing to give him up, Wyllie found a resilient inner peace, a "greater sense of humanity," and a "different outlook on the measure of success."


KIRKUS REVIEW with star for exceptional merit.

Wyllie (Bertram Goodhue, 2007, etc.) moves away from architectural histories to document the life of her son, Andrew, who persevered and thrived despite Down syndrome.

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.