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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.
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Barbara Bamberger Scott/2005 for curled up with a good kid's book |
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For grown-up fiction, nonfiction and speculative fiction book reviews,
visit our sister site Curled Up With a Good Book (www.curledup.com)
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The Boy Who Loved Windows: Opening the Heart and Mind of a Child Threatened with Autism by Patricia Stacey