Birth has a special vocabulary. My early
pregnancy featured graceful words such as conception and quickening.
Three years after having my son, though, I learned a new reproductive
word—stoppage. It means deciding not to have more children
after your living child is diagnosed with autism.
My attorney husband and I were eager for a child, maybe two, the
classic boy and girl set. After winning a stressful trial, he came
home to pack for our trip to the mountains. I remember the day, a
Friday in January, lying on the bed near a half-filled suitcase.
About the time we began to climb the misty mountain road, egg embraced
sperm and our son was conceived.
A precocious blond baby with big blue eyes, he spoke at 9 months
("dog" and "necklace"). Tall at 18 months, he
happily recited the alphabet. Then he turned hyperactive. We were
too busy chasing him to notice how his speech became echoes, how
he played with water and lights and cried with terror at the vacuum
cleaner's roar.
When he was nearly 3, after three miserable weeks, his first preschool's
director said, "Sorry, he's autistic," and threw us out.
We didn't believe it. The speech therapists I called said it was
impossible: He's sociable and talks too much. After the teacher at
his new school mentioned that he resembled her autistic nephew, in
a panic we called our niece, who teaches autistic children. She said
she'd known a month earlier. "So it's true," I said. "I'm
the mother of an autistic child."
These words horrify me now with their self-absorption. But they
were my attempt to realize the truth, to place myself in an awful
new universe.
Autism, a once-rare neurological disorder, is alarmingly common
these days. There are 10 boys and two girls in our neighborhood who
are autistic. L.A.-based Cure Autism Now quotes federal estimates
that one of every 250 U.S. children are autistic. In California,
the rate (excluding milder forms such as Asperger's syndrome) has
jumped to 10 new diagnoses per day. No one knows why; one theory
is that genetically susceptible children are pushed into the disorder
by vaccinations, diet or heavy antibiotics. Others simply emerge
autistic into the world.
Autism is a black hole, capable of crushing personality, reason
and affection. It has no known cause or cure. Forty percent of afflicted
children never speak, while about 25% display average to advanced
intelligence and language, but possess poor social skills and are
considered odd.
Slowly, the signs became evident to us. Frustration or noise made my son bang
his head or bite. He and I became a colorful pair, his head with its blue-yellow
bruises, my arms purple with bite marks. His fear of vacuum cleaners changed
to obsession. After the diagnosis, our bright little boy started walking in
circles, flapping his hands like a broken-winged dove. Watching his small shoes
trace a tightening O on the kitchen floor hurt more than his deepest bite.
Our neighbors with autistic children told us what to do. We removed
wheat and dairy products from his diet and sought school district
funding for 40 hours per week of behavioral modification therapy.
Soon, three therapists came to our home each day, in shifts. They
sat our son at a small table and helped him perform tasks while offering
play breaks and rewards. There were far-flung doctors, blood tests,
medications and three hours a week of speech therapy. In between
were depressing books and phone calls to veteran families.
But within 18 months he became the loving, curious child who'd
vanished for a time. At 5, he's a happy, singing boy who can lie
to cover his mischief (a cognitive milestone). Speech tests reveal
high scores and superior reasoning. His only real differences are
stubbornness, clumsy social skills, a variable attention span and
a fondness for mechanical equipment. To outsiders who know his label,
we are unlucky, but in our parallel universe we are among the fortunate.
At the park, strangers ask, "Is he your only one?" Yes,
I say, he's like five kids. Or I tell them I have no local family
help. But truthfully, I can't handle another child. A kid with autism
bears innumerable price tags. Therapies, diets and battles with schools
add to the high emotional costs. But it's worth it. Compassion is
the painful gift my son has given me.
For some parents, this becomes a soul-opening experience they
could not have gained otherwise. For others, depression, divorce,
bankruptcy, even suicide ensue. Most of us eventually adjust and
soldier on.
Even so, few have additional children after a diagnosis, because
we fear a possible genetic risk. My friend with three autistic boys
would have stopped had she known, although she's happy she didn't
(two have recovered). Stoppage is the rule, not the exception.
I look wistfully at small girls, with their pink dresses and steady
talk, but I love my son. He climbs into our bed, shouting "There
you are, Mom!" with wild delight. He brushes my hair and paints
my toenails. He hugs me so hard it chokes me.
"Am I going to love you for the rest of my life?" he
asks me, grinning, and throws himself on my lap.
This devotion makes me cling to him, revel in our hyperkinetic
attachment. It makes me think I could have another baby, a girl with
our blue eyes. But then I feel the fear. Not only of an autistic
child, but a regular child whose abilities might dim my vision of
my son. So I hold onto the words of the experts, who say he may lose
his diagnosis, work, marry, even have children. Grandchildren would
be a great solution to stoppage.
I know a woman whose son has completely recovered. She is pregnant.
We other mothers shake our heads at her hubris. She didn't even sperm-spin
for a girl, we whisper with awe (autistic boys outnumber girls 4
to 1). I once rode to an autism-mom party with her. The other women
in the SUV pumped her about her child, sighing at her success.
"I was just determined he wasn't going to stay autistic," she
said.
I was amazed that she would say such a thing to equally driven
mothers whose sons can barely function after the same treatments.
Then again, only a supremely self-assured woman would tempt the fates
again.
When my son turned 4, we went to the Salvation Army church of
his baby-sitter, who put him onstage to throw a dollar for each year
of his life into a basket.
"How old are you?" asked the pastor before a packed
Santa Ana congregation. Answer, I pleaded soundlessly from the back
of the room.
"I'm 4 years old," he said.
"And we thank God for your birthday!" she chuckled into
the microphone, as everyone watched him, the lone blond boy amid
the knot of dark-eyed Latino children. Later, as the brass band played
a birthday song, he danced. The pastor spoke in Spanish, and the
room roared with laughter.
"He may not speak Spanish," my baby-sitter translated, "but he
sure can dance."
I do not believe in God, but I thank him for my son anyway. I
am grateful for everything that I once took for granted, because
the world is full of children who cannot live the lives their parents
had planned. After everything we have been through, he is more than
I ever hoped for. In the face of what lies ahead, he is more than
enough.
Copyright The Times Mirror Company; Los Angeles
Times 2003. All rights reserved.
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