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George’s Place
By Carolyn See, September & October 2004
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I think of myself as an agnostic, or at least a person who doesn't
believe in a storybook God who keeps tabs on us all. During the nights before
and after the IEP, I railed at the God I didn't quite believe in, not for
my grandson, who through it all was sunny and uncomplaining, but for his mom,
one of the finest human beings on this earth, who, with her dear husband, was
going through the tortures of the damned.
About a year after my grandson's diagnosis, the four of us—he, his
parents, and I—flew to Chicago for an autism conference to find out as
much as we could about what we were dealing with.
At seminar after seminar, we heard about theory after theory. Autism may
have a genetic component, it may be the result of very intelligent people
having children together. It may have something to do with alcoholism or
depression running in families. We heard that autistic kids seem to absorb
toxic pollutants, especially mercury, from the environment; that the increase
in cases during the past 10 years may have come about by the greatly increased
numbers of vaccines babies receive and could have something to do with a
preservative used in those vaccines, thimerosal, a mercury-based compound. The
latter is a charge the drug companies deny.
Listening to all this, I felt almost unbearable anger. Here at the
conference were hundreds of respectable, well-educated, law-abiding
citizens—good parents, devoted grandparents. And here's this disease
that affects two to six children per thousand and is growing at a rate of 10 to
17 percent a year. I wondered if anyone was listening.
At that time, only one person in American public life had openly addressed
autism—Representative Dan Burton, a Republican from Indiana whose
grandson is autistic. Burton demanded and held congressional hearings, and he
squawked like the devil when special interests were able to slip a proviso into
the Homeland Security bill that would have exonerated drug companies from
liability. He talked to hundreds of people. He got a standing ovation. He's
a hero to the autism community.
I'm glad my daughter and son-in-law asked me to go along to this
conference, this noble, hit-or-miss quest for knowledge. I'm honored to be
of some use in all this, if only tangentially. But later, when a friend asks me
what it was like, I can only answer, "Have you ever been to a four-day
funeral?"
George is five years old now. Kidding on the square, I can say to my
daughter that her son has a life anyone might envy. He goes to kindergarten in
a special-education class. He has speech therapy two afternoons a week. He
takes gymnastics (for autistic kids) and loves it. He and his parents traipse
out on Saturday morning to social-skills class. George has been to the zoo and
the circus.
And the training—that behavioral therapy we heard about at the
beginning of this process—tends to work. His 10 hours a week—along
with school, gym, dietary changes, and huge amounts of love—have changed
his life dramatically. Every situation is different, of course. The
infrastructure of care for these children is still jerry-built, shaky,
desperately underfunded, and changing. But behavioral therapy for George comes
in the shape of four or five cheerful professional women who take turns sailing
into his house each weekday afternoon jabbering at him, trying to get him to
jabber back.
I don't like to talk about what all of this costs: the school district
and regional center split the cost of behavior therapy; health insurance covers
some medical services. George's extended family picks up all the rest,
which runs into thousands of dollars. I won't talk about the time all of
this takes to arrange. Or the heartbreak, all over again for all of us, when
George bursts into scalding tears and cannot tell anyone what's wrong with
him. I can't talk anymore about what my daughter and her husband have gone
through. It should be enough—it has to be enough—that George is
happy.
Still, George is my delight. When it's my night to baby-sit, he strides
in dressed to the nines, wearing a stylish backpack. He allows me a fleeting
smile, puts up with being hugged, and lopes over to his books and blocks.
He's beautiful. He's hard to get. He's delicious.
My grandson stacks the blocks, counting, up to 30. Then he counts backward.
He has the most beautiful, piping voice. He loves to hide and be found. When I
get tired of playing, he'll say, "Oh, come on, Grandma!" But
talking is not his strong suit. Often, he'll sing. It's a sound like no
other. When he's watching Snow White and the Seven Dwarfs for the hundredth
time, he hums along happily when the prince sings, "One song, I have but
one song…."
I try to get him to talk, and to follow along when I read books to him.
He's polite. He goes along with it for a while, but really he'd rather
be scoping out the electric fan or galloping through the house, capturing his
shadow against a white wall, or trying to. His favorite pastime is still to
throw my necklaces on the carpet. Then do it again. Finally, he comes and sits
down by me and smiles. He strikes a wise pose with his chin in his hands. He
says, "Hello, baby!" He's some of the best company in the
world.
It's a cosmic dance, I guess. I'm clomping around on the ballroom
floor, he's two-stepping in clouds. The important thing, however, is that
we're dancing together.
Carolyn See is the author of Making a Literary Life: Advice for
Writers and Other Dreamers (Ballantine Books, 2003) and five novels. Her
book reviews appear on Friday in The Washington Post. Her next
novel, Jerusalem, is due out in 2005.
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