Carly’s Voice (20 page)

Enough.

One morning in September 2007, after six months of escalating behavior, Tammy decided
to take matters into her own hands. While I was at work, she and Howard corralled
Carly into the back of her SUV and drove to the hospital. “We’re going to sit there
until they admit her. Until this becomes the doctors’ problem, we won’t get any help.”

Howard, Mari, Tammy, and I took turns staying at the hospital through the day and
night over the next week. Tammy had to run between carpooling Taryn and Matthew, food
shopping, and errands, and I had to keep ducking in and out to get to my office, which
was only a few blocks away. We all practiced triage with the rest of our life while
we snaked our way through the red tape of the diagnostic departments of the hospital.
The problem we were experiencing was that each specialist only looked at Carly from
his or her unique perspective. Psychologists looked at her behaviorally. Ear, nose,
and throat (a practice my wife refers to as Ears, Nose, and Wallet) from an upper
respiratory perspective. Neurologists looked at her brain scans and saw no abnormalities.
MRIs of every inch of her body, in fact, showed nothing. On paper she was good to
go. But
her violent outbursts at night and lack of sleep worsened. Her body was so black-and-blue,
the Children’s Aid Society had been called in by one of the less experienced nurses
without our knowledge. A primly dressed bureaucrat showed up to interview Tammy and
me. Fortunately, when the woman from CAS arrived, our pediatrician was in the room
and escorted her into the hall for a discussion. She did not return.

On the second or third night, around ten, as I tried to settle down on the small daybed
with its hermetically sealed mattress, Carly flung herself from the hospital bed and
began pounding herself. A nurse came in to check on the commotion, took one look at
Carly beating her neck and legs as I tried to contain her, and burst into tears. She
ran out, leaving us alone again.

The following afternoon Howard came by to visit. He brought a bag full of books and
games that Carly enjoyed. I didn’t really play with Carly so much as oversee her at
this stage, so I was surprised to hear that she played Connect Four. Skeptical, actually.

“She’s great at it. She beats me all the time,” Howard said.

I looked at him dubiously. Connect Four requires the players to focus and strategize.
It’s like tic-tac-toe on steroids. This was not something I believed Carly could do
readily. But after playing several games with her and losing, I felt like a fool for
doubting Howard.

The week slowly progressed, and seldom more than one test was conducted each day,
leaving hours of dead time. We pleaded with Carly to type and tell us what she was
feeling inside and why she was slapping herself. She had taken to winding up her arm
for leverage and smacking her neck just below her jaw with such impact it sounded
like a paddle on a wet behind. You could hear the smack all the way down the hall.
By then, however, she was as mute as she had been as a four-year-old.

By the eighth day, we finally felt like we were making progress. The team of doctors
who had been coming and going, seemingly
in no set pattern, finally met to confer on Carly’s case. Although they could not
come up with any diagnosis of a physical nature, they agreed to bring in a psychiatrist
with a background in pharmacology and experience working with problem adolescents.

The next day we met Dr. Stein. She was woman in her early fifties with dark hair and
an exotic look and manner that suggested a well-traveled and somewhat bohemian spirit.
She was quiet, a listener in the manner of psychiatrists.

Carly was off to the side of the conference table in the doctor’s small hospital office,
alternating between sitting and splaying herself on the institutional blue pleather
couch. I had become increasingly defensive in the presence of doctors who repeatedly
asked about Carly’s symptoms and then left us feeling like we were making it all up
because they could not find any clinical explanation. At first, I was a little unsettled
by the way Dr. Stein would stop talking and stare at Carly. I realized after the fact
that she was merely watching and observing, since Carly was unable to answer any questions
directly.

After a few minutes Dr. Stein spoke directly to Carly, something few specialists did.
“I am not an expert in autism, Carly,” she said, “but the doctors here thought I might
be able to help by exploring some different medications.”

She turned and said to us, “I’m usually brought in as a last stop with challenging
cases. I’m wondering if Carly is attending to noises or voices inside of her,” she
pondered out loud.

“You think she has schizophrenia?” I asked, my eyes widening.

“No, but sometimes people with rapid mood cycles and forms of depression may hear
and see things.”

Typically, I wouldn’t be too thrilled by a diagnosis of a mood disorder. My mother
had suffered with depression her whole life, and I lived through the devastation it
wreaks. In this case, however, I was happy for any concrete conclusion. So much of
Carly’s Carlyness was indefinable.

Dr. Stein agreed to see Carly on a regular basis over the coming weeks and to try
a course of medication called gabapentin. Originally developed for epilepsy, the drug
was sometimes now used for severe nerve pain and headaches. As Carly had been pounding
her body so fiercely, Dr. Stein wondered if it couldn’t be some form of nonspecific
neuralgia. Gabapentin had also been used successfully with some people who suffered
from bipolar and mood disorders, so it kind of felt like a panacea in Carly’s case.

Carly was discharged a day later, having completed every diagnostic test the team
could imagine with the team finding nothing out of the ordinary.

“It could be related to the onset of puberty,” our pediatrician reminded us. “Let’s
see how she does with Dr. Stein for the next few months.”

Again, did we have a choice?

In the coming months, Carly was a closely monitored lab rat as the doctors titrated
her medications up and down. Some had such adverse paradoxical effects—sedating medications
that made her intensely hyperactive—that she was on and then off them within days.

Tammy took to emailing Dr. Stein in the midst of the turmoil because to wait until
the next day would somehow blunt the pain and make us lose focus.

A few days later we’d be back for another consult with the psychiatrists. Blood tests
were ordered to be sure the medications weren’t causing some irreparable harm. Months
of careful, calculated experimentation followed under the direction of the medical
team. Add a white capsule and a red tablet to the orange horse pill. Let’s see how
we do with that. Better? Worse? The same?

A few weeks later Tammy sent another note reporting on Carly’s progress. Some days
she was unchanged. Others she seemed twitchy. Maybe her stomach hurt, but Carly wouldn’t
say. One
evening after a rebalancing of her medication, she fell asleep around eleven, but
no sooner had she dozed off than she sprang from her bed and started spinning in circles,
her face looking possessed. Other nights she’d fling herself to the floor and flail,
making push-up motions. Many nights she would awaken at 3:00 a.m. and never go back
to sleep. She used the bathroom and then spent the next four hours banging around
her room, stripping her bed, taking things off her shelves, jumping on her bed, and
jumping on the floor.

Tammy pleaded for the doctor to see us immediately. “I don’t know how much longer
we can keep this up . . . I am willing to continue with this medication trial but
would like your feedback on what I have described thus far. I am afraid this situation
is going to break up our family . . .” she wrote in an email one night after the bedlam
had subsided.

All we could do was cope. And wait. We had no other options, no further recommendations
or offers of help. Dr. Stein was always responsive and made time to see us. But medication
had to be adjusted slowly and carefully—one at a time. Over a period of several months,
the demons that possessed Carly seemed to subside. Not entirely, but enough that we
had moved through the crisis phase. Carly had become sufficiently calm and focused
to begin working with Barb again. This in itself felt like a major breakthrough.

“Tell them to stop yelling at me,”
she told Barb several weeks after being discharged from the hospital.

“Who’s yelling at you?”

“Mom and Dad. At night when I yell and jump around. It’s not fun for me. My legs and
arms tingle and I can’t make them stop. I have to move or it gets worse. I am hitting
to stop this feeling.”

She had told us once before that she struck herself to stop her body from doing something
it wasn’t supposed to do. But this violent behavior, we knew, had to have another
cause. Carly had finally
opened a sealed envelope. Why had she not been able to articulate this months earlier?
I wondered. Carly works on her own timetable and all we can do is wait. I pictured
Carly’s brain whirring and churning and reorganizing itself. Chaos to order, of sorts.
This little glimmer of insight was the breaking of a padlock. Even small children
can tell their parents when something is wrong. But with Carly we were always guessing.
Something as simple as stomach pain or a headache had to be intuited. Happy? Sad?
Anxious? Carly was never able to provide any insight into what drove her actions.
Doctors would ask us if we thought she was in pain as if we had a telepathic connection—adding
frustration to an already hopeless experience.

“I seriously doubt this is restless leg syndrome,” Dr. Stein said to Tammy one afternoon
when on a hunch we suggested that we try a drug we had heard about for this unusual
syndrome. “But Requip won’t have any interaction with Carly’s other meds, so it can’t
hurt.”

Within two weeks of starting Carly on the additional medication, the battle between
Carly and her limbs subsided, proving once again how random and capricious finding
solutions for Carly could be—and how diligent and assertive we had to be as parents
in looking for treatments. Although still hyper and often sleepless, Carly no longer
pounded her body black-and-blue. We began to learn how to orchestrate the complex
combination of behavioral therapy and medication, love and patience, to bring Carly
along. Having Carly begin to participate in her treatment plan opened new doors and
brought new insight. For more than a decade it had been the blind leading the blind.
But with Carly’s strengthening voice, we were beginning to see. Just a little.

I wish people would be understanding and caring. But how can they be when they just
don’t get it. I can explain it but no one will give me a chance. I want people to
understand that autistic people are people and we all have an inner voice.

—Carly

By the time she was eleven years old, Carly had cycled through four or five schools.
The local public school where we sidestepped the unions and brought in an ABA-trained
therapist, at our expense. The nice little not-so-local public school with the segregated
DH (developmentally handicapped) classroom. A small Montessori school that was experimenting
with an autism classroom came next. That was a $25,000 attempt at progress. Back to
the local public school with Howard in tow for one very successful year followed by
a dismal failure the next.

Carly wanted to learn. She had the ability to learn. However, there was no place that
offered the one-on-one approach she needed and the flexibility to accommodate her
physical and vocal outbursts; her need to stand up and jump around every few minutes,
her head banging and compulsiveness. She was picking up communication skills and,
although not reliably, many self-help skills like dressing
and brushing her teeth. She could follow basic instructions. But she was a spring-loaded
peg that didn’t fit anywhere. Tammy was continuously exploring options and there weren’t
many. It was a relief to have Taryn enrolled in parochial school that went to eighth
grade and Matthew in a nonparochial school that went all the way through high school.
At least they were “settled” and doing well. But Carly’s education was an ever-changing
kaleidoscope. “I just want a solution that will last more than one year and won’t
cost sixty thousand dollars,” Tammy lamented.

In addition to the musical chairs of her education, home care was still a massive
challenge. Even a successful school program could keep Carly engaged only Monday through
Friday, 8:00 a.m. until 3:00 p.m. That left roughly ninety hours a week that Carly
was awake, at home, and required one-to-one supervision. Howard, despite his Superman
status at our house, could cover only so many hours. To supplement, we engaged what
seemed like a revolving door of therapists and support workers—some covered by various
government agencies, some covered by revolving credit.