Patricia Stacey has guts. Not only because she lived through a life-changing and potentially devastating experience, but because she could write about it passionately and spare no details, even those that reflected negatively on herself. She had a lovely normal daughter, and then a son who even as a newborn gave her cause to worry. Her perception of his differentness at Walker's earliest moments, and her willingness to do almost anything at all to help him develop, probably saved his life, physically, emotionally and intellectually: "We were losing him; he was slipping away into the shadows."
The crux of the matter with developmentally delayed children is the diagnosis: if they have one, they are suddenly eligible for a multitude of services and will have a predictable ride through the system. But the diagnosis is also a stigma which can prevent caregivers, teachers and even other parents and children from seeing the child as a whole person.
Though Stacey wasn't poor (she's a college professor, her husband an architect) she had to struggle financially to get Walker's treatment - lots of it. Her husband kept insisting they needed to move to a cheaper house; she kept waiting for the next miracle. And it always came, partly because of the remarkable willingness of the REACH early intervention team to advocate for Walker, and partly because of the connection she forged with the autism guru Dr. Stanley Greenspan.
Walker needed what Stacey and the team of incredibly diligent and loving caregivers call "floor time" - hours a day of prodding, observing, literally obsessing, in an inch-by-inch struggle to get his attention. According to his physical therapist, he was in sensory overload and even a trip outdoors (if not shrouded in blankets) could set his progress back for days - a progress measured in minute, very rare, victories. He needed every ounce of his precious energy to learn to communicate in some way with the rest of the world. A crucial juncture is Stacey's confrontation with a social worker who thinks that reluctance to take Walker outdoors is unwholesome. Being told that Walker needed to "fit in" by going out to socialize, and that refusal to do so would "put a strain on your family...on your marriage," Stacey shot back, "Do you realize what a strain it's going to put on our marriage, if our son doesn't learn?"
Diet played a role - Walker probably had food allergies. From his mother's descriptions he was covered with eczema, had problems breathing, and was pitifully frail for much of his first year. His physical development was torturously slow, matching his emotional deficits. Getting even the experts to believe that a baby can have allergies is an uphill battle, and the couple waged war every step of the way. They found out that there was no funding to help parents pay an exorbitant price for hypoallergenic baby formula. Stacey recalled that she had been given a drug called Terbutaline during labor - "we do it all the time," she was assured. Terbutaline could well have been implicated in Walker's disorder - but no one was interested, and she was told, "You'll never know why."
Stacey did become obsessed with Walker, and her obsession saved him. She tried not to neglect her daughter (in this she seems to have succeeded), her husband (a touch-and-go balancing act they both engaged in as he tried to support the family, spend quality time with his children and tackle awesome financial constraints imposed by the necessities of Walker's care), her friends (poignantly, she describes the loss of several to her need to work with Walker) or herself (on this score, it took the intervention of a Unitarian church group sending meals almost every day to help her realize how exhausted she'd become): "A woman pulled up in a pick-up truck. She was large, with dyed blonde spiked hair and several nose rings...she held a large box on her hip and passed it to me casually. I could tell she didn't want me to feel embarrassed...when I opened the box, I found an expensive take-out meal for four, two candles and a box of matches inside."
Sensory "issues", as they're called in the early childhood intervention profession, can pervade and ultimately destroy a life. A parent can come to accept hand flapping, repetitive speech (if any) and an almost total withdrawal of the child socially and emotionally. Then one obtains a diagnosis (generally something “on the autism spectrum") and the child is streamed through the schools, often a holy terror to his classmates and teachers as his sensory needs ebb and flow, and will wind up as an adult needing constant one-on-one supervision. The frustrating paradox is that no doctor will diagnose a child with autism until he or she is at least five years old, after the symptoms have ripened and there may no longer be any hope of recuperating the being of the person inside the symptomatically burdened physical facade.
As Walker progressed, his speech ran ahead of his other abilities. Stacey recounts his four year-old’s need to understand sleep before he could just do it. She tells him, "You need to go inside, into where your head is and think about your day. Then your thoughts will turn to dreams and your dreams will be sleep." After several tries he asks desperately, "Mom, can you sleep instead of me?"
It would be incorrect to make the claim that Stacey and the team, including Dr. Greenspan, "cured" Walker, because this could offer false hope to other parents who struggle with the effects of this bizarre and frightening disability. And the author makes no such claim. She simply tells her story, a story of determination and one-sightedness often in the face of apparently insuperable challenges, including the challenge of Walker himself, a boy who preferred staring out the window to looking at his mother.
By the end of the book we see Walker as a highly verbal, very charming child who can play well and engage with his family and other people. The label "normal" is never applied, and need not be. Walker is a happier person and his parents are vindicated in their tetchiness and their exhausting quest for Walker's truth.
Anyone who has a connection with autism and sensory disorders will want to read and re-read this book, in search of clues and hopeful road signs.