Carly’s Voice (8 page)

Barb had started with PROMPT, a form of speech therapy where the therapist manipulates
the student’s jaw and mouth into position. Words were broken down into single sounds,
and then strung together. “We got the
c
sound out of Carly today!” one of her post-session summaries observed enthusiastically.
PROMPT seemed to work a bit, for a while. Carly could make sounds like
ooce
for juice,
cackah
for cracker, and even say
mama
. But over time, even these simple words disappeared. I was thoroughly disheartened
when meaningful sounds were mastered one week, then lost the next. There were periods
where Carly would make a step forward, being able to say Matthew’s name (“Ma-ah-foo”),
for instance, only to have the skill evaporate. For months they would work on a single
consonant. At this rate, we’d all be old before Carly could say her name.

The ABA therapists would then be instructed on how to continue to prompt Carly to
use this sound as much as possible through the week. Maybe she’d be able to do it
again next week. Maybe not.

Barb added sign language and then picture exchange techniques—endlessly looking for
ways to help Carly communicate. This last approach, known as PECS, was decidedly low-tech
but effective. Carly had stacks of cards containing photographs of things she might
want and she would merely have to point to make a request. Although cumbersome, it
beat screaming in frustration. Carly quickly got the hang of selecting cards for what
she wanted
most. Images of juice, cookies, storybooks, and swimming were used with frequency.
Broccoli and carrots much less so. She never pointed to “I love you.”

Barb believed that Carly’s inability to communicate fueled her anguish and tantrums.
At the end of each weekly home session, Barb painstakingly drafted clinical notes
summarizing the appointment and providing us with instructions that read like a how-to
manual. She wanted us to use multiple forms of communication, the theory being that
one skill builds on the other.

Carly had mastered a hard
g
sound after months of laboring. It’s one of the harder consonants to teach because
of the pulled-back position of the tongue, Barb told us. When Carly found she could
no longer replicate it, Barb was crushed. I came home once to find Barb, Mari, and
Tammy in our family room, Carly lying on the couch with her head hanging back off
the edge. As Tammy steadied Carly’s body, Barb supported her head and attempted to
use gravity to drop Carly’s mouth into position to make the elusive sound, but to
no avail. Barb shot me a look, a rapid raising of both eyebrows, as if to say, “Well,
we tried.” Barb was a cross between educator and the Army’s Corps of Engineers; she
never showed her frustration.

When Carly was four—just as she was entering the world of ABA—we began to witness
her exile from the community of her “neurotypical” peers. Taryn attended a neighborhood
nursery school and we became friends with a family up the street. They, too, had twin
girls, and despite Carly’s obvious lack of ability to connect, the Millses always
included Carly in any plans they made with Taryn and their daughters, Sydney and Katherine.
Carly seemed to have a connection with the girls’ father in particular. A family doctor,
Tony was calm and matter-of-fact. He seemed to look right past Carly’s oddness and
see something much deeper. In return, he was
one of the only people other than Tammy, Mari, or me who could hold Carly without
making her cry. She loved his unruly beard and metal-framed glasses.

After school, the three girls often went back to Lauren and Tony’s, and Tammy would
bring Carly over to join them. Their neighbor, Kathy, had a daughter who also attended
the preschool, and was another fixture of these chaotic play groups. The mothers all
got along well and it created a welcome community for Tammy, who spent so much of
her time pulled into the vortex of Carly’s doctors’ appointments. But one morning,
nearly a year after this ritual began, we were reminded that Carly was seen more as
a visitor than as a member of the community. Kathy was planning a birthday party for
her daughter. The invitation arrived addressed to Taryn. Not Carly
and
Taryn, just Taryn. Who invites just one twin to a party? At first Tammy tried to
rationalize that maybe it was a space thing. But given the size of the family’s home
and the fact that it was to be an outdoor party, she quickly faced the truth.

The family’s niece had been living with them while she finished a college course and
often babysat for Carly; we were sure they were keenly aware of the challenges we
lived with. A line was being drawn, one we would see over and over in the years to
come. Our “normal” four-year-old would be included, and our disabled four-year-old
would not. This little piggy gets roast beef, and this little piggy gets none. Uncharacteristically,
Tammy bit her lip and sent Taryn to the party.

Slights were not uncommon. Sometime later that summer, another mutual friend of Lauren’s
and Tammy’s was planning a party for
her
daughter. The Weavers lived several streets away and Mari’s sister worked as a nanny
for their children. In fact, Mari would often walk Carly and Taryn over in their strollers
so the girls could play together. When the invitation for their daughter’s party arrived,
again without Carly’s name on it, it stung like a hard slap
on a cold cheek. Tammy, not prone to tears, phoned Lauren and sobbed.

Ten minutes after Tammy got off the phone with Lauren, the mother phoned to apologize
and include Carly. Lauren had clearly set her straight. In the end, Carly attended
(with help from Mari), and she did great. I generally noticed that the kids were more
accepting of Carly’s uniqueness than the parents.

Had Carly and Taryn not been twins, the double standard of their treatment by friends
and members of our community would have been less obvious. But as it was, we had a
constant reminder of the normal childhood Carly was missing out on. We were forever
attempting to integrate Carly into Taryn’s world; the one with mainstream schools
and activities, friends and parties, dance, swimming and art classes. Carly’s world
was one of doctors and therapists. That was not a place for Taryn.

So when it came time to invite Taryn’s school friends to her birthday parties (wasn’t
it
their
birthday parties?), were we to put Carly’s name on the invitation? We decided that
the only way for people to see the girls as equals was to treat them as such. While
they may not share a social network, they did share a birthday. They both deserved
the same respect. It worked in some cases; thoughtful moms sent a card and gift to
a girl they’d never met just because she was Taryn’s sister. Others, clueless of the
hurt they would cause, chose to ignore Carly’s existence.

We couldn’t tell whether Carly felt the strangling loneliness that came from being
left out. With her lack of telltale emotions, it was easy to assume she didn’t know
the difference between being included and not. There was some relief in the delusion
that she didn’t understand the sights and sounds swirling around her. But Tammy and
I always felt as if we were being shunned by a clique. Getting Carly to blend in and
be accepted would be impossible. Winning a popularity contest was never the goal;
merely having a friend would
be a relief. Carly’s being shunned was a painful reminder of our child’s difference.
If she was not included in a five-year-old’s birthday party, would she ever be accepted
anywhere?

Excerpt from Northland Educational Centre, June 1999:

Carly is beginning to show an interest in symbolic play, particularly in the Daily
Living Center . . . Carly is able to identify five body parts and she enjoys the shape
sorter and puzzles when encouraged to do so. We continue to work on increasing Carly’s
attention span.

Carly continues to use a combination of communication systems in order to have her
needs met. These include sign, gestures, sounds and photos. A recent addition to her
verbal approximations is the “s” sound, which she has used to request “chips” and,
in a different context, “swing.” She has been observed to combine “words” by signing
“more” and saying “s” to request “more chips.”

Carly enjoys gross motor play such as running, jumping and climbing on playground
equipment. She is propelling herself well on a riding toy and now able to turn corners
. . . she has been practicing throwing and catching games. Carly has also been working
on “turning” activities and has shown good wrist movement when turning objects such
as jar lids.

Matching, sorting and copying are all important goals for Carly. She is now able to
sort two colors, match identical objects as well as pictures to objects she is motivated
by.

Carly has learned to independently remove her shoes and socks and shirt if they are
loose. She is working on independently putting on her socks. She drinks from a cup
with no
spillage. Next year we will introduce such fasteners as zippers, snaps and buttons
. . .

After two years at Northland, just past Carly’s fourth birthday, she began to outgrow
the services that the school provided. And even the reduced fees outgrew our credit
line. We moved on to the public school system’s watered-down services for special-needs
education. There were suitable placements for a child with more common disabilities.
However, for a child like Carly with a mixed bag of behavioral and what we presumed
were intellectual deficits, there was no perfect fit. The philosophy of the public
education system in our area was to offer “good enough” for as many as possible. It’s
what our friend and lawyer Martha Ellison once called “equality with a vengeance.”
Provide a bit to everyone, but not enough for anyone.

Even though we were prepared to send our ABA therapists into the classroom at our
expense, the rules of the school board forbade outside staff from working in the classroom.
In one of the neighborhood schools, however, the principal was prepared to be flexible
and admit a worker with Carly. Then, partway through the year, we were called to a
meeting. The teacher stood in front of us with a written statement.

“Your daughter does not seem to like me or the environment of our classroom,” she
read from her script. Her hand shook slightly as she spoke, and she avoided our stunned
gaze. She was a fastidious woman who kept her classroom tidy and efficient, and Carly’s
needs were anything but efficient. The principal and school board administrators looked
on in sycophantic sympathy.

“Doesn’t
like
you?” I interrupted, incredulously. “She’s
autistic
, for God’s sake. She doesn’t ‘like’ anyone.”

“I just don’t think I can do this,” the teacher responded.

As far as we could tell, the teacher had made no effort to learn
about autism or our daughter’s needs. Nor was she required to actually teach Carly,
since we had provided a trained ABA therapist to run all programming for the half-day
sessions. In fact, Carly wasn’t even
in
the classroom very much because her therapist withdrew her to a private work space
in the hall when she needed quiet and greater focus. But it was clear the battle was
already lost. Carly was asked to leave the school by the end of winter break.

We were told that there were more appropriate schools for Carly to attend, though
a tour with the director of special education made it clear that there weren’t. There
were specialized schools for the deaf, the blind, the medically fragile. There were
schools for the developmentally handicapped. The administrators stonewalled and bullied
Tammy to visit a school nearly an hour east of Toronto that they promised “is perfect
for Carly.”

“It is
not
perfect,” Tammy said. “Carly cannot sit on a bus for two hours a day. What if she
has to go to the bathroom? She can’t tell anyone. What happens in the winter when
at the slightest dusting of snow the bus service is canceled? Who will come to the
house to help us? We moved into this neighborhood so that Carly could put on her knapsack
and walk to school like all the other kids.”

Tammy was resolute. Just because we were made an offer did not mean we had to accept
it. While the school board would attempt to make us feel grateful for their largesse,
we, too, could dig in our heels. Through our sheer stubbornness borne from a lack
of reasonable options, Carly remained in the local public school for the next few
years. However, when a new principal arrived, it became all too clear that the improvised
program we were running was no longer acceptable. Either Carly would have to be assigned
to another school with a developmentally handicapped classroom or we would have to
make our own arrangements to educate her.

Excerpt from psychological assessment, February 2000:

Dr. Susan Marcotte, PhD, C. Psych Registered Psychologist

Carly attends school in the morning and therapy in the afternoon. Carly is a child
who needs a lot of direct one-on-one care. She can be extremely destructive and dangerous
to herself, both at home and at school, unless she is well supervised. Carly spends
a great deal of time out of focus and also rocking on a chair. Her communication skills
are limited . . . Carly has recently begun an Applied Behavior Analysis Program.

It is evident from this profile that Carly continues to demonstrate global developmental
delay and functions within the Developmentally Disabled range. Carly presents as a
child whose presentation in all three domains, stereotypic behaviors, communications
skills and social interaction skills, falls within the spectrum of Autism/Pervasive
Developmental Disorder. Carly is a child who avoids establishing eye contact, will
often spend her time spinning items and rocking back and forth. She makes sounds repeatedly
and used to flap her hands. In group settings, Carly tends to stay to herself. She
does not use toys appropriately and will often respond to requests with negativity.