Carly’s Voice (35 page)

I wasn’t sure what to make of the hypocrisy. Did she not see the contradiction of
despising those who suffered the same challenges as she? Maybe it wasn’t so much that
she despised them as the fact that they didn’t uplift her. Misery in fact does not
like company; it wants nothing more to do with it.

“Mom and I are working with Luc’s and Anton’s parents to create a house nearby. It
would be a lot closer and you could come and go more frequently. You could be home
more,” I pushed on with forced optimism in my voice. “But there’s a lot to do first.
It’s downtown, not too far from my office. And Shari lives right up the street,” I
said, referring to a woman who worked with Carly on occasion. In fact, knowing she
lived in the neighborhood made the entire plan palatable.

“Why don’t you just let her move home?” Taryn said with a pout, not looking up from
her drawing.

“Please, Taryn, that’s not helping,” I heard my parental voice say, shooting her a
caustic glance.

When Tammy came home, Carly was in bed. I showed her the conversation, which set us
back in our usual spin of “what ifs” and “if onlys.” We had debated the merits of
trying to convert our garage, a large free-standing structure at the back of our lot,
into a small apartment where Carly could sleep with the help of night staff. Or an
addition on the house. But it always came back to the same conclusion. We were not
equipped to run our own residential facility with the challenges of hiring and training
staff. As it was, our life was always one phone call away from being in shambles when
a worker called in sick or Howard needed a day off. No, the Parkdale house was our
only alternative, and now we needed to get it going as quickly as possible.

The next day, Tammy called Rebecca and Alyssa to say we were “in” if they were. We
were willing to trade in the ostriches and cows for indigent neighbors if only to
get Carly back to the city and somewhat closer to home. Maybe we could even find a
way to help the neighborhood improve once we got the kids settled in. Now with the
parents’ approval, Dave could begin the tiresome process of getting the license transferred
to Future Horizons, and we could take on the onerous task of designing the ABA program.
During the mudslide of paperwork and red tape, I would look for people to help me
get the house renovated and furnished to decent standards as quickly as possible.

The goal of opening the house within a few months began to look like fantasy. While
we had made some connections through our friends to replace the kitchen and bathrooms,
drywall the walls gaping with cracks and holes, and redo the worn floors, no one would
commit until they were sure FH would receive approval for its plan. FH needed to solicit
both funding from one government agency and licensing approval from another. And no
one would approve anything until a full education, staffing, and facility improvement
plan was complete. The months slowly clicked by, and the Parkdale
house remained empty with only the most rudimentary improvements completed. At least
water was no longer draining from the third-floor washroom into the living room two
floors below.

On good faith, our friend Karen had designers at her firm draft plans and make a list
of items required to improve and furnish the home. She also convinced one of her suppliers
to donate furniture for the dining and living rooms. A contact of Tammy’s who owned
a major lighting supply company offered to donate lamps and light fixtures. A national
home improvement chain offered to come in and renovate the bathrooms and kitchen and
provide supplies for us to complete many of the other improvements required to make
the crumbling hulk inhabitable. They had initially turned us down, but David Legendre,
a young colleague of mine, had a connection that he put me in touch with. As it turned
out, the executive David knew also had a child with autism, and our wives were acquainted
through the autism community. Through the back door we slipped and, without telling
the department that had originally rejected our request for charitable aid, this executive
was able to get us supplies and a construction team to do the work.

While we awaited final license and funding approval, FH and the families came to an
agreement on who would provide the training and oversee the development of the ABA
protocols and plans for the kids. Nearly a year past our original launch date, it
looked like we’d have Parkdale open by the late summer of 2008.

With spring approaching, we began to make our plans to withdraw our kids from Cedarview.
Carly would be attending camp during the summer. In the fall, she would transition
to Carlton, the private school for kids with autism that both Luc and Anton attended,
and move into Parkdale several nights a week. Far from a perfect life, it had the
ring of stability and hope. We allowed ourselves a few moments of self-congratulation
for the accomplishment and began the process of getting Carly ready for the transition.

Excerpt from psychological assessment, 2008:

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

Carly received Botox in January 2006 in her salivary glands for drooling problems.
It was reported to be somewhat helpful. Her impulse control problems and obsessive
type behaviors have been increasing. Carly has been prescribed a a variety of medications
in the past, including Luvox, Ritalin and Celexa, however, Carly’s parents found that
these medications generally increased her agitation, constant movement and compulsive
and repetitive behaviors. She also was previously taking risperidone due to anxiety
and hyperactivity and Chlorpromazine to assist her in falling asleep. Carly is currently
on Epival, Clonidine, gabapentin and, on occasion, chloral hydrate to assist in sleep.
Overall, Carly’s health is reported to be excellent.

Carly has been seen through this office since the age of 4
½
for a psychological assessment. At the time of the assessment, it was felt that Carly
was beginning to respond well to the Applied Behavioral Analysis therapy that she
was receiving. The results indicated that Carly continued to present with Autism,
a mild to moderate developmental disability and as ever communication disorder. In
comparison, the results of her most recent assessment at this office in April 2006
indicated average nonverbal ability and receptive language skills. She also continued
to present with Autism and a Communication Disorder. The current re-assessment is
being completed in order to gain an updated understanding of Carly’s progress to date
and to assist with educational program planning, to ensure that she has the
opportunity to learn to her fullest potential and manage behaviorally.

The assessment was completed over four sessions. The Wechsler Intelligence Scale for
Children—Fourth Edition was used to assess Carly’s intellectual functioning. Carly’s
abilities within the area of visual perceptual reasoning were within the Superior
range (91%). These results were stronger in comparison to her previous Average score.
She displayed categorical reasoning abilities within the Superior range (91%). Carly
also demonstrated Superior range ability to find missing essential details in a picture
(91 percentile). Overall, on the perceptual reasoning domain of the WISC-IV, Carly’s
performance was within the Superior range and continues to highlight her strong perceptual
reasoning abilities despite her challenges. However, it is very important to note
that Carly’s behavior issues associated with her Autism often interfered with testing
and the completion of each subtest often took a great deal of time.

The Peabody Individual Achievement Test—Revised was used to evaluate current levels
of achievement in the areas of reading comprehension, spelling and general mathematics.
On the PIAT-R Carly demonstrated Very Superior reading comprehension skills (98th
percentile for age range 13 years, 1 month). Her math problem solving skills for language
based problems were within the Superior range (95th percentile for age range +18).
She received a High Average score on tasks assessing her Academic knowledge involving
Science, Social Studies and Humanities, equivalent to a 16 year, 11 month level.

Overall, Carly’s behavioral difficulties, such as withdrawal behavior, social problems
and atypical behavior, continue to be related to her Autism. . . .

Hi Jonnie my name is Carly. My friend Howie told me I should write you. A lot of my
friends are in L.A and I don’t get to see them a lot. The friends I have here are
really my twin sisters’. They rather play with her then me. Howie said you are really
nice and wouldn’t care that I am different then lots of people. I like doing lots
of things like swimming, board games and just hanging out. I have to tell you I cant
speak out of my mouth but I can spell on my computer to be heard. Howie said that
you are going away to camp just like me for the summer. So I just want to know if
you would like to hang out together before camp starts. You can email me or tell your
mom to call Howie to set something up. Hopefully I will meet you soon

Your optimistic friend,
Carly

Hi Carly!

I would love to get together with you before I go to camp! I will have my Mom call
Howie as soon as possible!!!! Let me tell you a little bit about myself; I am 13 years
old and I have a younger brother and sister. My best friend is moving to L.A. next
year, and her name is Carly too!!!!! I love hanging out with friends (just like you)
and I also like swimming and dancing. What camp are you going to?

I can’t wait to meet you!!! You seem like such a caring and interesting person. We
can be email pals!

See you soon,
Jonnie

People on the autism spectrum are alleged to lack the social acuity to form deep emotional
bonds. This is a gross generalization, in my experience. Underneath Carly’s sometimes-robotic
façade she is capable of great empathy and playfulness. In Mel, she found a confidante
and buddy to whom she could open up. Carly had complained that there was no one at
Cedarview with whom she could connect. None of the other residents spoke in meaningful
sentences. Certainly none of them demonstrated the degree of self-awareness, humor,
or power of observation that Carly did. We thought of Mel as a godsend, as she would
open up to her in the same way she spoke with Howard and Barb at home.

“Is there anything you want to talk about or ask about?” Mel asked Carly. At Barb’s
recommendation, we tried to give Carly many open-ended opportunities to start a conversation—an
approach we use years later.

“I am really down today.”

“Do you mean you feel sad?”

“Kind of.”

“How come?”

“Really miss mom.”

“I miss my mom too a lot. But you get to see your mom on Sunday . . .”

“I know but I’m sad.”

“Well, did you know that lots of people get sad at this time of year? Do you want
to know why?”

“Yes.”

“’Cause its not very sunny at this time of the year. They call it seasonal affective
disorder.”

“Really.”

“Yes, maybe you miss the sunshine, too!”
“Are you sad?”

“I’m not sad now ’cause I like working with you. I sometimes get sad in the winter.
Most of the time I’m happy.”

“Well I’m down.”

“Is there anything I can do to make you feel better?”

“Well of course.”

“What?”

“Give me a exlax.”

“What! Are you feeling like you can’t go to the bathroom?”

“No”

“Then why would you need an ex-lax?”

“Don’t know.”

“Do you know what ex-lax is for?”

“I think so.”

“What’s it for?
“To make you feel happy”

“Well, ex-lax helps you poop . . . I think you’re thinking of Prozac or Paxil or something,
those are called antidepressants.”

“Are you on Prozac?”

“Nope, I don’t need it. Some people really need it ’cause they’re sad all the time.”

“I’m sad all the time.”

“Well, that sucks. Are there things that make you happy?”

“I like Ellen.”

“Well, people who need Prozac feel like nothing makes them happy, even Ellen or seeing
their mom.”

“I know.”

“Do you still think you need Prozac?”

“No. I guess.”

People had been coming in and out of Carly’s life as long as I could remember: Joanne,
Colin, Amy, Ana, Paula, Yifat, Guerrette, Lori, Susan—a dizzying list of young people
on their way to other careers, for the most part. Therapists who stopped in long enough
to form a bond only to have it broken after a year or two. Before Carly could write
and communicate with her companions, these relationships had an expendable quality
to them. Some people were better than others in that they were more patient, more
reliable, and more energetic. The relationships were defined more by what Tammy and
I needed for Carly than by what Carly wanted for herself. As Carly emerged, she began
to form her own connections with people well beyond the scope of our influence—and
even beyond our view.