Carly’s Voice (4 page)

Our pediatrician did not seem particularly alarmed, but after the experience we had
had with Matthew, Tammy and I were on full alert. We were referred to a physiotherapist
at the Hospital for Sick Children, the first of what would become a legion of specialists.
When it was clear that one appointment per week would not get Carly moving, Tammy
enrolled her in a private clinic. Three times a week Tammy brought Carly to physical
therapy, where they would tediously coax Carly from lying to sitting, and from sitting
to butt-shuffling across the floor.

Excerpt from progress report, Play and Learn Integrated Nursery Program, January 4,
1996:

J. Spitz, Coordinator

At 10 months of age Carly has shown some delays in her language, gross motor, auditory
attention and memory, self-help and socialization skills. Frequent ear infections
with fluid in the middle ear may certainly have impacted her language and auditory
attention and memory skills. She appears to have some generalized low tone which may
be impacting upon her gross motor skills at this time. Therapy input seems to be appropriately
managed through the two therapists seeing Carly at this time. This gives Carly intensive
focus on motor development at this time. Carly and her mother have begun the weekly
parent and child program at Play and Learn. Through this program we can target specific
skills through a play approach. As well, home visits can commence at the family’s
convenience to provide other suggestions of activities that will enhance Carly’s development.
She will be reassessed in six months.

Just after Taryn’s and Carly’s first birthday, we had to acknowledge that Tammy’s
obstetrician had been right. We needed a bigger house. Our dining room, which hadn’t
been used for eating since the girls arrived, was filled with toys and scooters. Our
kitchen, barely large enough to be described as “eat-in,” required that we eat dinner
in shifts. And the two small bathrooms were always a traffic jam.

With three children instead of the planned two, we scrapped the idea of sending Matthew
to private school and in the winter of 1996 found a house in a leafy section of the
city near excellent public
schools, parks, and stores. If not exactly a dream home, given our budget (which we
overshot), it was more house than we had hoped for, and compared with our cramped
quarters, it was a mansion. Four bedrooms, a den on the main floor, and a finished
basement for a playroom. No more tripping over fire trucks and sit-on turtles with
wheels. “They’ll carry me out of here in a body bag,” I told Tammy.

This was to be our house for life. I sought a measure of serenity in a home to counterbalance
my rapid-fire job and rough-and-tumble family. Despite the awareness that Carly and
Taryn were developing on diverging paths, I was confident we were starting something
new and exciting. I had recently changed jobs, joining a hot new ad agency that had
recently opened in Toronto. I was given a significant role in running a large portion
of the agency’s flagship beer account. With my newly enlarged family and a house in
a great neighborhood with good schools, I was feeling pretty pleased with myself.

But as the professional side of my life took off, my home life was about to slip into
quicksand. Tammy was anxious about the growing chasm between the two girls. “Something’s
off,” she said. I chalked it up to her vigilant nature and refused to put it on my
“to worry about” list. Nevertheless, my wife began exploring play groups that would
be ideally suited to both girls. Taryn needed the stimulation to match her extroverted
personality; Carly needed it to pull her out of her sluggishness. For the next year,
the months between the girls’ first and second birthdays, they went to what was clinically
termed an “integrated early intervention program.” For several hours, several days
a week the girls would go to a center resembling a cross between a kindergarten room
and a kid’s birthday party. There they would encourage Carly to use her hands, paint,
and play like the “integrated kids”—those more like Taryn. There are still pictures
of Carly, smiling, covered in finger paint festooning a wall in our basement. But
these playful pictures captured only moments in time. As soon as Carly was home, she
would sit on the floor of
our den rocking back and forth, humming to herself, and ignoring the world around
her. Play was not something that came naturally to our daughter.

One of the instructors at Carly’s program told us, “You have to stay in her face.”
Specialized workers, originally paid for by insurance and then later out of our own
wallet when benefits ran out, would arrive at the house with jangly toys and oversized
Raggedy Ann dolls. For hours they would sit on the floor of our den or the playroom
with an exaggerated cheerfulness, encouraging Carly to follow instructions, take items
from one hand and pass it to another, and play like other two-year-olds. Carly mainly
stared up at them with a look that was a mixture of wonder and boredom. Taryn, on
the other hand, was already off to play dates with friends.

After mornings at preschool, Tammy spent the afternoons making the rounds at medical
facilities and hospitals. Sometimes I would take time off work to join her. The next
four years would feel like an incarceration in a house of mirrors. One doctor unable
to explain Carly’s lack of progress would send us on to another, who then pointed
us in another direction.

Step 1: Wait in beige-and-gray waiting room filled with toys you don’t want child
to touch for fear of infection by flesh-eating disease. Little worry for us, however,
as Carly ignored pretty much everything. Depending on the type of doctor (neurologist,
audiologist, geneticist, developmental pediatrician), exchange sympathetic looks with
other parents of kids who appear equally (but seldom as severely) out of step with
the world as Carly. Note: If at doctor such as ear, nose, and throat, avoid sidelong
glances of other parents who stare at Carly secretly thanking God their child is playing
with flesh-eating-diseased-Playskool-firehouse while Carly sits on the floor and rocks
back and forth.

Step 2: Admission to claustrophobic examining room with the assurance that doctor
will be along shortly (what’s the medical
definition of
shortly
?) and the taking of medical history by the resident or intern (“Can’t you just read
the notes from the previous eight doctors?
You
tell
me
what’s wrong.”).

Step 3: Repeat the medical history when the specialist finally arrives just as Carly
is completely losing it, screaming at the top of her lungs and attempting to fling
herself from the stroller, tethered by a waist strap; stare up at the pensive, twisted
face of the doctor as he/she reads through a four-inch-thick chart.

Step 4: The perfunctory physical examination of eyes, ears, pelvis, back, limbs, and
joints while Carly writhes and screams, making said examination even more perfunctory.
Think to self, “What can poking at our daughter uncover that the millions of dollars
in scans and blood tests failed to reveal?” A physical exam cannot possibly give us
any insight into what’s wrong with Carly.

Step 5: The raised eyebrow and sympathetic arm touch by doctor as we’re sent on our
way to see another special specialist. On occasion, stop to pick up requisition for
additional blood work or scans of head or random body part.

Step 6: Repeat and repeat and repeat until numb.

The momentum of appointments, play groups, and therapy was accelerating at an alarming
rate. The notes, papers, and schedules of doctors’ consultations taped to our refrigerator
were elbowing out Matthew’s and Taryn’s artwork and magnetic letters. There were weeks
where Tammy had at least one doctor or therapist’s appointment every day. We referred
to these years as the Fix Carly Years. Both Tammy and I have backgrounds in business
and marketing; we are career problem solvers. We hunched our shoulders to the gristmill
and pushed. In particular, Tammy took this on as a mission. In the evenings, she would
recount the conclusions from an appointment I had missed, though I confess many of
the details washed over me. Months melted into a slurry, with little to show for it.
On paper, anyway, Carly was perfectly healthy.

Carly became known as “the enigma of the Hospital for Sick Children” by the team of
doctors who had followed her. She had been assigned the label GDD (global developmental
delay) because she was missing most of her developmental milestones such as walking,
talking, playing, and following basic instructions. Later they added pervasively developmentally
delayed—a broad term for a spectrum of conditions such as autism because of her lack
of eye contact, social engagement, and speech. But there was no underlying cause for
these conditions. Carly’s lack of speech development was particularly confounding.
It would be several years before her inability to make more than garbled sounds would
be diagnosed as apraxia—a motor-planning deficiency in which the muscles in her mouth
failed to obey the directions from her brain. We could find no ailment to cure or
person to blame for Carly being so
Carly
. Our naïveté about what lay ahead was a blessing; we refused to be discouraged.
Delayed
had an optimistic ring. I reasoned that planes and trains that were delayed would
eventually arrive. In fact, many of the doctors’ reports told us that they expected
gains. Her pediatrician noted that with Carly, it was like being on a ladder: She
would move up, but we just didn’t know to where.

It took months of intensive MEDEK, a particularly draconian form of physiotherapy,
to coax Carly into walking on her own, which she would finally do just after her second
birthday. In addition to therapy appointments at a local clinic, therapists came to
the house to teach Carly how to hold a cup, move items from one hand to another, and
work on her fine motor skills—all the things most children intuitively learn. When
a therapist wasn’t persuading Carly into a standing position or encouraging her to
put pegs in holes, stack blocks, or thread a spool with string, Mari was. While Taryn
played, Carly worked; she worked harder than most adults.

At times, the girls were not so very different. On occasion, Carly could be all smiles
and giggles. The sisters would roll around like
oversized puppies on their bedroom floor, Taryn hugging her sister and saying, “Oh
Carly, oh Carly,” in that one-way conversation we’d all learned to have with her.
Carly giggled from the attention. From a very young age, Taryn reacted to her sister
with good humor and empathy. I sat on the den floor and would take turns bouncing
them on my knees, singing the children’s song “The Grand Old Duke of York.” But while
Taryn would gleefully yell, “More, more Grappa Dupa Yorp” when I finished the rousing
chorus, Carly would burst into tears until I started up again. “Again for Carly,”
Taryn would say, providing her sister’s voice. Taryn was protective of her sister,
guarding Carly as if she were a prized possession. Only on rare occasions when Carly
would grab food or a toy away did Taryn scold her with a furrowed brow.

Often, while Taryn would play with her Barbies, Polly Pockets, or coloring books,
Carly would sit nearby holding yet another developmental discovery toy we had purchased
in the hopes of engaging her. She would not play, per se, but rather turn the toy
over as if to check its country of origin and scratch at the imprinted bottom surface.
Her nails would trace over the embossed words like she was reading Braille, but her
eyes told me she was elsewhere. Often she would put her tiny index finger into the
screw holes that held the brightly colored plastic pieces together.

When not holding a toy, Carly would stare at her hands and wriggle her fingers as
if she were meeting them for the first time. “Carly’s doing fingie,” Matthew would
say. I would look on, encouraging her to press the green button to illuminate the
green light, or to stack the colored cups. I could not enter her world, whatever world
it was, and fruitlessly called her into mine.

Try as we did to encourage Carly to entertain herself, even for a few minutes, the
only acts she would spontaneously engage in were rocking and banging. Pressing her
heels deep into the mattress of
her bed or the cushions of her favorite overstuffed chair in the den, Carly would
lift herself to near-standing and then slam back with full force. All the while, she
would drone
ahhhh ahhhh ahhhh
—as soothing to us as nails on a chalkboard—and stare into space. If uninterrupted,
her methodical, vertebrae-shattering ritual could go on for hours. Despite best efforts
to redirect her or at least cushion the blows, she ultimately wore holes in the chair
and broke her solid oak bed so often that it eventually required steel-reinforcing
bars. This much we knew: Carly had strong core muscles. If nothing else, she likely
would never have a bad back.

Excerpt from psychologist’s assessment, February 2, 1997:

Dr. M. Mary Karas

Carly is only 25 months old. Yet with increasing awareness of the characteristics
of the PDDs, one can offer a provisional diagnosis consistent with her behavior profile.
Although she presents with the main characteristics of the developmental delay, she
also presents many features of the PDDs. She is resisting change, is affectively isolated
and has no functional communication other than through elementary gestures. She is
quite unaware of danger and seems to have a vague awareness of the characteristics
of the people around her . . .

The psychological testing revealed that Carly is delayed in a number of developmental
areas consistent with a diagnosis of PDD since she seems to represent with greater
delay in the area of language than intellectual abilities. Carly’s developmental
delay is at present the major consideration, but her parents’ and caregivers’ awareness
of her meeting many of the criteria for Autistic Disorder should also be of relevance
to programming efforts for her. The fact that she grows up with a highly competent
co-twin make her delays more evident to her parents and may have a more adverse effect
on them than had she been a singleton. On the other hand, her sister should provide
a role model for her to stimulate as well as play companion. The fact that Carly enjoys
her play and games with her sister reflects this benevolent influence of Taryn on
Carly.