Carly’s Voice (17 page)

When we returned home from our trip, we quickly realized that this small portal into
Carly’s world would be one that opened and closed, randomly and capriciously. Days
would pass and she wouldn’t type a single word with Barb or Howard. And never with
Tammy, her siblings, or me. In fact, it would be months before I would actually see
Carly type at all, further fueling my skepticism. In my head, I knew what Howard and
Barb told me was true, but who could blame me for asking why, if she could type, did
she consistently refuse to do so? The following months left me in a hopeful limbo.

At Barb’s suggestion, we labeled everything in the house to help Carly learn how to
spell. “We’re going to take a whole new approach to teaching her,” she said. “We need
to move away from sign language, pictures, and symbols. This kid needs to type.” Barb
would now shift her meticulous, painstaking approach from matching words and pictures,
and coaxing tiny syllables from Carly’s mouth, to labeling her world with words and
letters and forcing her to type them out. It all sounded so promising and deluded
at the same time. But Barb, like Howard, has a way of proselytizing. They don’t so
much
suggest
as
tell.
Both share a calm intensity and patience that is required of those who work with
the disabled. But, unlike any other team of therapists we had worked with, their creativity
in coming up with new solutions and ideas suggested that they never stopped thinking
about Carly, even when they were off the clock.

So through the summer of 2005, stickers began appearing all over our house. Mirrors,
windows, doors, and cupboards were marked, making our house look like a bizarre 3-D
how-to manual. To this day, I still come across random stickers on pieces of furniture,
nooks, and crannies like archeological artifacts. Barb looked for ways to make Carly
use letters and words, even when she wouldn’t type. “Write out a list of choices on
a piece of paper,” she told us. “Make her point to what she wants.” Over time, we
realized Carly knew far more than we had imagined. Howard and Barb cooked up schemes
to force Carly into the world of words. They handed her a juice box without a straw
and made her point to the word
straw
before giving her one. Anything she wanted she would work for.

With Howard and Barb, Carly began to have occasional short conversations, tapping
out one letter at a time with her right index finger. It could sometimes take an entire
hour for Carly to complete a three-word sentence. But they were words. Words with
meaning.

One afternoon while working Carly accidentally hit one of her therapists, Dina. When
Howard explained that Dina was hurt, Carly spontaneously typed “
sorry
” with no help. We had been told that children with autism don’t exhibit empathy.
Over time we would start questioning many things we had been told about Carly.

Was it possible there was more to Carly’s personality than we had thought? After all,
Carly
was
autism. Autism, tantrums, and neediness. When you raise a severely disabled child,
you begin to see the flaws above all else. There were momentary smiles; infrequent
heartwarming acts of love, such as a snuggle and a giggle. But there was a wall that
couldn’t be breached, locking her in and us out. Bit by bit, now a few stones were
beginning to crumble.

After Carly had been writing for about a year, we started to see more clarity and
complexity in her writing. Startlingly, for the most
part, her spelling was correct, her diction and grammar almost flawless.

When Barb showed up for her session one afternoon, Howard informed her that Carly
had been writing in full thoughts all day. Barb gave him her inquisitive look, her
head half-turned, a slight furrow in her brow. She didn’t exactly doubt him, but she
needed to see exactly what he meant with her own eyes.

So when Carly returned from the bathroom that afternoon, she took hold of her DynaWrite
and tapped out,
“Look I will work for food.”
I think Barb and Howard fell off their chairs. Rather than a few basic words, our
daughter had full cogent thoughts. Even more, she had an attitude. A colleague of
mine has an adult brother with autism. We used to joke that he and Carly probably
sat in their rooms at night scheming and laughing at the rest of us. Although they
didn’t speak, perhaps they had full-blown dialogues going on in their heads. I paused
to ponder this observation and realized we had probably not been far from the truth.

“Will you type for Taryn?” Barb asked her later that afternoon.

“No way,”
she wrote.

Barb smiled at Carly’s use of typical ’tween slang. Barb and Howard pushed on, curious
to see where this would go. After an explosive bout of whining and crying, Carly returned
to her computer and painstakingly responded,
“you are mean. Ill stop spelling. Stop. I want to play.”

When Carly couldn’t come up with anything specific to do, Barb suggested they go outside.
“Outside,”
Carly readily spelled.

“How about taking a drive to my house?” Barb asked.

The floodgate of words had been opened, and Barb wanted to see what else would flow
forth. They climbed into Howard’s car, thinking they could contain Carly in one place
and get her to write more.
“I want to go Barb house for food,”
Carly offered. Her teachers were eager to comply. Once on the road, however, Carly
flipped
out. It started with a plaintive whine and sobbing and then escalated as Carly grabbed
at Howard, who was in the driver’s seat, while she was buckled in behind him. She
flopped back in the seat of the car over and over, screaming and crying, throwing
herself hard against the constraints of the safety belt.

“What’s wrong? What’s going on?” they asked over and over.

When they finally arrived at Barb’s several minutes later and turned off the car,
Carly calmed sufficiently to respond.

“You need a seat belt,”
Carly observed. Sheepishly, Howard acknowledged he hadn’t fastened his when leaving
our house.

Once at Barb’s house, the duo couldn’t help but push Carly further to see what else
she might have to say. We had already learned that for Carly, food is a great motivator.
Salty snacks are king. Popcorn, French fries, crackers, even pickles are her weakness.
The Ruler Supreme of all motivators was Lay’s potato chips. I think we could get her
to walk across a fire pit of burning coals for a single chip.

“Carly, type five words and I’ll give you the chips,” promised Barb.

A small, sly smile seemed to cross Carly’s face.

“Five words,”
she typed.

Barb and Howard burst out laughing, shaking their heads in disbelief.

“Okay, you win,” said Barb, doling out five chips.

“Just give me the bloody chips okay,”
typed Carly.

“How did she learn
that
expression?” asked Howard in amused shock.

They moved to Barb’s den to give Carly a well-deserved break. However, when Carly
noticed Barb’s husband, Barry, relaxing on the sofa with his newspaper and a bowl
of popcorn, her impulsive nature took hold and she grabbed violently. “Stop,” said
Barb. “If you
want something, you must ask for it.” She pushed the DynaWrite in front of Carly.
Carly flew into a rage and threw herself on the floor. The flopping, kicking, and
crying were nothing new to Howard and Barb. But Barry, not having been calloused by
firsthand experience with Carly over the years, quickly gave in to her demands and
handed her the bowl of popcorn.

Having turned the game in her favor, Carly sat down at the table in the next room
with the computer in front of her and coyly typed to Barb,
“I want nice man.”

As Howard and Barb shook their heads in satisfied amazement at Carly’s quick mastery
of emotional manipulation, Carly chided, “
I need salt.”

As years of noisy silence died, a prima donna was born.

Excerpt from psychological assessment, April 2006:

Dr. Susan Marcotte, PhD, C. Psych

Registered Pyschologist

Carly’s parents have requested a full-psycho-educational assessment of Carly to provide
an updated account of her cognitive and academic profile to determine her areas of
strength and learning needs . . .

The consistency in school, classroom and educational assistant appears to have been
helpful to Carly. Most notably, there was a period of time during the 2002/2003 school
year that Carly did not receive ABA within the classroom, during which time she was
seen to regress. Once her ABA therapy programs were reintroduced within the classroom,
her behavior began to improve noticeably.

Carly seems to have progressed in nonverbal areas of the academic curriculum . . .
she appears to have relatively stronger
problem solving skills. With her ABA therapist, she is demonstrating skills to type
words and concepts. She will type her responses consistently for familiar people.

A variety of measures were utilized to examine developmental skills . . . Previously,
her skills were assessed to be within the “Well Below Average” range (<1 percentile),
consistent with a 1 year, 10 month level. The Wechsler Individual Achievement Test
and the Peabody Individual Achievement Test were used to evaluate current levels of
achievement in the areas of reading comprehension, spelling, general mathematics,
and math computational skills. (Only subtests that could be administered in a multiple
choice or written output format were administered given Carly’s verbal output and
fine motor difficulties.) . . . Carly generally demonstrated academic skills at approximately
Grade 3 level with the exception of her math computational skills, which are weaker
at a Grade 1 level. While Carly’s academic skills may not be in the average range
of functioning, they do suggest continued academic progress.

In summary, Carly is an 11 year old girl who continues to present with Autism in addition
to a severe communication disorder. Previously, Carly’s presentation was also indicative
of a Moderate Developmental Disability. However, during the current assessment Carly
demonstrated considerable progress in being able to learn and share her knowledge
and she was able to demonstrate perceptual reasoning skills within the Average range.

I want to say to all the autism experts that keep on saying that I’m not really writing
that you proved that you are not an autism expert.

—Carly

During the first months that Carly was typing, she used various pieces of equipment
known as voice output devices. One, the DynaVox, was a red plastic box with a touchscreen
face that could be programmed with picture symbols of things Carly may want. Different
food items, activities, even emotions. Carly would carry the DynaVox around on a strap,
slung like a purse over her shoulder. The device, however, had no printing option,
leaving it as mute as Carly. Like a personal secretary, Barb would copy down word
for word both sides of any conversation on her pad of yellow-lined paper and give
it to us at the end of each session with a list of recommendations. Once we bought
Carly a laptop, Barb would type the spoken dialogue in between Carly’s writing, like
a court reporter.

A few other therapists had witnessed Carly typing, but we hadn’t seen it ourselves
yet. And any time they took out a video camera to film Carly, she stopped typing.
I’m sure they were worried that
we didn’t believe them, but for how long would anyone trust that Carly could type
full, cogent thoughts without actually seeing it? Given her behavior for the past
decade and everything we’d been told about her prognosis, I was more likely to believe
our dog could speak.

“Are you ready to show Mom that you can spell?” Barb asked Carly. It was early fall
of 2005 and Carly had recently had her second major breakthrough—typing in full sentences.

“she does not like me. She just likes my sister,”
Carly responded. Her words, in some ways, were all the more powerful because her
face did not show any sense of emotion.

“Your mother loves you very much,” Barb assured her. “What can she do to show that
to you?”

Carly usually rebuffed hugs and kisses. Because we had so long assumed her cognition
was far below that of her sister, our conversations with her were simple; seldom more
than demands for compliance: “Carly, let’s get dressed. Carly, let’s go swimming.
Carly, stay in your bed.” We were constantly doing for Carly, but did she know how
much we loved her? Did she know that seldom a moment of the day would pass without
her creeping into our thoughts?

Barb and Howard were holding one of their after-school sessions at Barb’s house. Carly
led Barb into her living room and sat next to her on the sofa. With the voice output
device on her lap, Carly was ready to open up and have a heart-to-heart with her confidante.