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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."
RECOMMENDED by the US Review