Carly’s Voice (16 page)

The first time we did, I noticed Carly seemed agitated when she saw our suitcases
in the hall. “Do you think she cares that we’re leaving her behind?” I asked.

“Please don’t ask that,” Tammy answered.

The winter holiday period seemed to be the worst for us. The change in schedule, high
expectations of joy, and lack of support staff due to the statutory holiday all conspired
to make the Yuletide gray. But clearly we were not alone in the struggle to maintain
a semblance of a normal family life. One year, a friend’s twenty-year-old autistic
son had what she termed a
freak-out
. Maybe it was the color of Aunt Rose’s sweater or the parsley in the stuffing. It
never
really matters what sets off a person with autism. Whatever it was resulted in six
police officers escorting the young man—who can become violent, much to his own remorse—to
the local emergency room in handcuffs, where he had to be sedated. She later sardonically
posted on her Facebook status, “So
this
is Christmas.”

Like our autism brethren, we learned to spend time with our other kids, together in
twos and fours though seldom as five because if it were five, then it would be six—Carly
always had a helper in tow.

Tammy and I did our best to institute date night, even if it was just going out to
a movie to sit in the dark quietly and not move.

And as Carly grew from toddler to child to adolescent, we formed our own odd reality.
It was a place of good enough. Not perfect for her, certainly not perfect for us.
But compromises are the staff of life. I stopped thinking of us as a traveling sideshow.
While not typical, for us, this was about as normal as it would get.

The same dream I have at least once a month. Just a different situation. Carly is
perseverating, stuck in a spin cycle of some repetitive behavior. The socks all have
to be out of the drawer, or the plates all have to be off the table, or she has to
wash her hands five more times, soap on the front, soap on the back, then repeat.
Classic OCD. This is part of the dream, but it is real life, too.

I am roiling with frustration. In my dream this has been going on all day and I’m
at my busting-open point. Probably because it has also been going on all day for real.
I yell, “Stop.
E
-
nough,”
and slap her just hard enough to hurt me. “This is
not
fair,” I plead.

“No, it’s not fair,” Carly cries. Then, “Mom. MOM. Dad slapped me.”

We look at each other in utter disbelief at the words from the broken machinery of
her mouth.

I hug her in tears that will not stop. Now I am the one perseverating. We run to tell
Tammy of how a slap cured Carly.

I’m beginning to dread sleep, but wonder if it will be the only place I will ever
hear my little girl’s voice.

And after the fire a still small voice.

—1 Kings 19:12

Q: @CarlysVoice:
Carly, do you think what you are able to do is a miracle?

A:
No, it took me a long time and a lot of hard work. Even before i spelled I communicated
with picture symbols and had a lot of therapy. It did not happen over night and i
worked so hard to get to this point.

“Carly’s been writing all day,” Howard said excitedly into the phone.

“She’s been doing what?!” I yelled back.

I was swerving down Route 64 from the south rim of the Grand Canyon toward Flagstaff.
It was March 10, 2005—spring vacation—and Tammy and I had decided to take Taryn and
Matthew away for a break in the routine. Years before, Tammy and I had fallen in love
with the isolating openness of the Arizona and New Mexican desert. Somehow the ocean
of multicolored sand interrupted by sun-toasted red clay mesas and grandfatherly Saguaro
cacti brought us peace. We had made several trips to the Southwest
in the years before autism framed our life. Now that Carly was ten years old, we needed
solitude more than ever.

As we descended the mountains and drove south watching the outdoor thermometer in
the rental car rise from just above freezing to nearly 80 degrees, my cell phone rang.
The reception was frustratingly broken. As best I could make out, and what I repeated
to my wife and children, was that Barb and Howard had been working with Carly all
afternoon, and she had been typing out words and short phrases on her voice output
device. To date, they had been using the electronic unit as a sophisticated picture
book with a voice. Carly would touch the picture of the items or activities and the
digitized voice would approximate a conversation. It was primitive, but less so than
Carly’s frustrated wails, finger pointing, and grabbing.

We lost the phone connection. I sat silently, absorbing the news, when the phone rang
again moments later, and I put it on speaker so we all could hear Howard.

He told us that he had spent the afternoon clearing items from the voice output device
to free up memory in anticipation of Barb arriving for her appointment with Carly.
“I was going to delete the alphabet function,” he said. “She isn’t using it for much.
We need more space for additional pictures and symbols.” Had he deleted that, what
happened that afternoon might never have happened. Or at least not for many months.

He reported that Carly was restless and cranky that day; whining, running around the
room, unwilling to complete her tasks. “What do you want?” Barb asked, her voice edged
with exasperation. “Sit down and help us understand what you need.” Barb corralled
Carly back to her chair at their worktable. To their astonishment, Carly reached across
to grab the device and touched the alphabet screen, slowly tapping out the letters
“H-E-L-P T-E-E-T-H H-U-R-T”
with her right index finger.

Barb and Howard were stunned. In the past few months, with
the help of therapists, Carly had learned to identify images and colors, and even
developed basic math and vocabulary skills. In addition, they had worked with her
on fine motor skills like cutting, pasting, and drawing—all the things that should
come naturally to a small child but were seemingly impossible tasks for our autistic
ten-year-old.

But she had never spontaneously expressed herself or communicated feelings of any
kind. Nothing that had happened in previous days would have prepared them for what
they just witnessed.

At first speechless, Barb and Howard hovered over Carly as if she were waking from
a decade-long coma. Howard ran upstairs in search of Tylenol, thrilled to comply with
her plea for help. Carly ran behind the couch and vomited.

Howard bounded back down the stairs. They cleaned Carly up, hugged her, and cheered,
tears in their eyes.

After years of isolation, the miraculous breakthrough had them floored with joy.

And now Howard was trying to recount this to us through a bad wireless connection.
Feeling somewhat confused by the news, we said good-bye, agreeing to phone when we
reached the hotel later that afternoon.

“Well?” I turned to Tammy as we continued driving. The other kids were silent in the
backseat. Anyone who knew Carly as we did would be incredulous. Spelling independently?
Words with meaning? Not Carly. How could she? She was a girl who still had toileting
accidents. A child whose only words were garbled sounds, and whose tantrums and destructive
acts were her strongest skills. This is not a child who writes, we thought. This is
not even a child who understands. Carly is “cognitively impaired.” Isn’t that what
all the doctors had been telling us for ten years?

“Do you think it’s possible?” Tammy asked, one eyebrow cocked and a dubious smile
on her face.

“I know how badly Barb and Howard want it to be,” I said, feeling both eyebrows rise.
“It’s possible they’re exaggerating. Or that they helped her.” I bit my lip and tried
to digest what I had just heard myself say. I’ve heard that denial is a way of coping
with grief. But I also think it works when we are confronted with something that violently
disrupts our worldview. It wasn’t that I doubted Barb and Howard’s veracity, but what
they were telling me was as incomprehensible as learning that a relative believed
to be dead was in fact alive. My heart and head raced as I played the scene out in
my mind over and over.

We drove in an electrified silence. Matthew and Taryn had stopped baiting each other
in the backseat of the rental car. They recognized that this was not a trivial moment
and were temporarily shocked into uncharacteristic muteness.

“There must be some sort of syndrome that affects, you know, people who work closely
with disabled people. Sort of a Stockholm syndrome,” I finally offered. Tammy and
I trusted Barb and Howard completely, but we weren’t sure if we could imagine that
Carly was writing exactly as they were telling us.

“They wouldn’t do that,” Tammy said. Or was she asking?

We drove on in a pensive quiet for a while longer. “What exactly did he say again?”
Tammy asked, as if the event was slowly seeping into her consciousness. I repeated
the story over and over as we picked at it like investigators exploring a mystery.

“Figures,” I finally concluded. “We’re three thousand miles away and Carly finally
has a breakthrough.” But I was smiling as I thought of Carly; possibly for the first
time in a long, long time.

Tammy and I had supported the therapists’ efforts to find some means of helping Carly
communicate, but neither of us had much hope of Carly ever becoming proficient at
any of these skills. She remained trapped in a noisy and chaotic muteness. As we watched
our other children mature into their ’tween and teen years, Carly
was still a mystery to us; the child we didn’t really know. One of her psychological-education
reports noted that Carly seemed to have receptive understanding of about fifty words
by the time she was six or seven. If that trend continued, she should have understood
only about one hundred to two hundred at the point she spelled for Barb—approximately
the number of words in a well-versed two-year-old’s vocabulary. We really had no idea,
though, what she did and did not understand.