Loving Andrew: A Fifty-Two-Year Story of Down Syndrome
A mother recounts how the birth of Andrew with Down syndrome, and the loss to cancer of a second baby start a family's journey through the maze of parenthood. With the support of a loving father, mother, and two younger siblings, Andrew mastered the skills of life and became a contributing member of society. In spite of coping with schizophrenia in his later years, Andrew remained active, happy, and full of love until Alzheimer's stole his memory and brought his life to a close at the age of fifty-two.
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, 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.
This 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. Life is a game of chance and we should not expect to play God. No embryo selection or prenatal test can guarantee a flawless product or rule out unexpected calamities such as the death to cancer of our second baby.
Interwoven in the story of Andrew are: half a century of changing attitudes toward the developmentally disabled; improved educational opportunities; and discussions on pre-natal testing and abortion. Examples from two other children with Down syndrome, born 21 and 35 years after Andrew, help to illustrate the services that became available after passage of the law "Education for All Handicapped Children" in 1975, and underline the challenges that we faced without such services.
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. . . Perhaps you, too, will experience the journey, the hope, and the casting aside of preconceived notions."
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Romy started writing in her mid-sixties after a devastating wildfire destroyed fifty percent of the houses in her neighborhood. Realizing that all the materials she had been saving to recount the story of bringing up a child with Down syndrome would have been destroyed if her house had burned, she took a college writing class and started her first book. Although that book took eighteen years to reach publication, Wyllie has written two books on architecture: Caltech's Architectural Heritage: From Spanish Tile to Modern Stone published in 2000 by Balcony Press of Los Angeles; and Bertram Goodhue: His Life and Residential Architecture published in 2007 by W. W. Norton (New York and London). A monograph, Eva Maddox: Innovator, Designer, Educator has just been released (October 2017) by The Images Publishing Group, Australia. Excerpts from her book on Down syndrome have been published as opinion pieces in national newspapers.
Romy lives with her husband Peter, a professor emeritus of Geology, in Pasadena, California.
www.romywyllie.com
