Carly’s Voice (9 page)

Carly is not an easy child to look after and she is a child that requires a great
deal of direction in order to assure that she is using her time productively. Developmentally,
Carly functions between an 18-month and 2-year level. Carly’s social and communication
skills are her weakest areas of development. Cognitively, Carly functions between
a 2- and 3-year-old level. Carly appears to have benefitted from Applied Behavior
Analysis
intervention in the short time period in which she has begun. It would benefit her
to continue receiving this type of approach to her learning. Carly’s parents may wish
to consider a year in which Carly receives ABA half days and some half days with an
opportunity for inclusion in a regular Senior Kindergarten classroom with a shadow
. . .

Tammy’s friend Beverly, who was a grade-school teacher, suggested we visit a small
elementary school about fifteen minutes from our house. Crestwood Heights was a community
school nestled into a tree-lined neighborhood of curved roads and straight hedges.
Walking through the front door, we felt like we were stepping back in time, in a peaceful,
nostalgic way. The school had a special-needs classroom, and while most of the children
would be younger than Carly, who was around six years old, the small class size and
the offer of allowing us to bring in an educational assistant trained in ABA was about
as good as it could get. We would never know why this school had never been presented
to us as an option in the past. The only task remaining was to find a worker who would
meet our requirements—someone patient, energetic, and willing to be trained in ABA
and work full-time with Carly. Furthermore, she would have to be an appropriate teaching
assistant in the eyes of the school board.

Several years earlier, Beverly had introduced us to a young woman named Dana Dalal,
who had been a teacher’s assistant in Beverly’s classroom. “You have to meet her,”
Beverly had told us on a number of occasions. “She works with a little girl like Carly
who also goes to Northland part-time and is in my classroom in the afternoons. Dana
is amazing.”

When Tammy finally called to inquire if Dana would be willing to work with Carly for
a few hours on the weekends, we learned that she also worked part-time for Liz, our
ABA provider. Autism,
it turns out, is not only a closed world, it’s a small one, too. After meeting her,
we called Liz to request that Dana pick up some after-school ABA shifts with Carly.

Dana was calm and professional and, most important, not rattled by Carly’s outbursts,
tantrums, and the constant humming noises she made, like a teakettle wailing endlessly
for attention. She peered through dark-rimmed glasses with an intensity and wisdom
uncommon in any twenty-three-year-olds I knew. The fit with Carly was important, but
as Dana was at our house twenty hours a week and occasionally came to synagogue with
us on Saturday mornings to help us with Carly, the fit with
us
was equally critical. Carly’s therapists held a position in the family somewhere
between friend and family member. They are often present at mealtimes, family celebrations,
and the inevitable arguments that break out between stressed-out spouses.

When it came time to find the educational assistant to help Carly at Crestwood Heights,
we asked Dana if she had a clone or knew anyone like her who might be interested.
Parents of kids with autism covet one another’s prized therapists the way some people
covet their neighbors’ houses or cars. “Well, actually my brother is looking for work.
He’s just finishing his early education certification.”

Carly had had only female therapists and helpers in the past. Part of their task was
to help her bathe, dress, and use the bathroom. Neither Tammy nor I was too sure how
we felt about a young man taking on such a personal role. But we agreed to meet Howard,
because he would be working in the classroom with a female teacher.

Though they lack a physical resemblance, Dana and her brother shared a similar wiring.
Their mother had made a career of early childhood education and owned a nonprofit
group of day-care centers. In fact, she was a close friend of the executive director
of Northland. It was evident that this was a family dynasty of talented
people who loved working with children—especially those with exceptionalities. Howard
had the perfect educational background and, as an avid summer camp counselor, we knew
he had the required physical stamina and creativity.

I don’t know yet whether I believe in divine intervention. For the most part, I think
we get whatever we get and it’s up to us to make a go of it. But like Mary Poppins,
Howard dropped into our life at precisely the moment we needed him the most: August
6, 2001. Once Howard arrived, it was like he had always been there.

Although quiet, Howard exuded confidence with Carly. He had access to Carly’s ABA
team for training, but his intuition proved stronger than any textbook education we
could have given him. While some might have been put off by his take-charge approach
and the fact that he lived by the principle of asking for forgiveness, not permission,
we welcomed his leadership. I came home from work one evening to find latches drilled
into our kitchen cabinets to halt Carly’s invasions and a swinging chair from IKEA
hanging from our basement ceiling. I was impressed with Howard’s initiative and tenacity
but could never have imagined how much we’d come to rely on him.

The first year at Crestwood Heights, Howard developed Carly’s curriculum using the
supplies and tools in the classroom, the principles of Carly’s ABA program, and his
own imagination. The teacher had returned after taking some time away from teaching
and seemed enthusiastic to have Howard run the show. Tammy and I appreciated that
she spoke of Carly warmly and glowingly, but it quickly became clear to us that she
had little intention of rolling up her sleeves to learn the tough lessons of educating
a youngster with autism. She let Howard tackle the tricky task of keeping Carly focused
on her work.

Carly’s ever-expanding team resembled a Rube Goldberg
device—a series of interconnected parts, each serving individual functions, tenuously
connected to one another. Howard became the lynchpin as he spent the greatest amount
of time with Carly. At first Howard spent the school days at Crestwood with Carly,
but within months, he was working with her after school as well. Although he was respectful
of the ABA team leader and other therapists, it was clear within a matter of weeks
that his bond was far tighter with Barb than with any of the other specialists. Where
ABA followed rules and protocols, Barb and Howard followed Carly. They seemed to notice
details about her that others missed.

“She’s smart,” Howard told us.

“Uh-huh,” I responded, not wanting to dampen his enthusiasm.

We had seen the progress reports from school. Carly was beginning to point to letters
on a letter board to spell words like
cat
or
dog
. She was completing 100-piece jigsaw puzzles faster than an adult. But the overall
impression she gave—with her hyperactivity, table slapping, and wailing—made it hard
to see our daughter as intelligent.

“No, really,” he protested, sensing my skepticism, before recounting a story that
had happened earlier in the week.

“Just watch Carly for a second,” he had said to the teacher. “I’ll be in the hallway.”

The small bag of potato chips Howard had been using to reward Carly for completing
a sorting exercise lay folded shut on the classroom table.

“I’d put those on your desk,” he suggested to the teacher as he walked out the door.

“Howard, I’ve been teaching school for twenty-five years. I think I can keep Carly
out of the chips for a minute,” the woman replied.

When Howard left the room, closing the split door behind him, Carly grabbed for the
crumpled yellow bag. One step ahead of
her, the teacher snatched them away and put them on her desk at the front of the room.
Having missed her chance, Carly sidled up to the desk, giving the woman what seemed
to be a nuzzling.

“Oh, sweetie,” she said, assuming Carly’s act was one of affection.

Quickly, Carly attempted to reach around the teacher for the bounty, but her teacher
was one step ahead of her again and moved the remaining chips out of Carly’s reach.

Thwarted, Carly picked up the teacher’s reading glasses and flung them to the center
of the class. As the woman bolted to catch them, Carly snapped up the bag and dumped
the remaining chips on the desk before taking handfuls and shoving them in her mouth
with a satisfied “mmmmmm.”

Excerpt from developmental pediatrician’s assessment, February 10, 2002:

Dr. Nancy Robards, MD, FRCP Developmental Pediatrician/Director Child Development
Centre

Carly has been experiencing behavioral problems for some time, however, this has been
increasing over the last 3–6 months. This has been manifested by increasingly restless
behavior, impulsivity and frenetic-like activity. She has developed some compulsions
including touching things and tapping people on the head. She is unable to sit still
and is in constant motion. She has an increase in stereotypic and repetitive behavior
including grinding her teeth, increased sensitivity to noise, increased self-injurious
behavior including head-banging . . . she has also experienced some emotional liability
manifested by crying for thirty minutes to one hour at a time. There is more restlessness
and she has developed significant foraging behavior. She will often rummage through
the kitchen looking for food or if
food is out anywhere, she will go through the boxes looking for different items. She
does eat some of this food, but really it is more the looking around for food that
is problematic as opposed to overeating.

We had a long discussion with Carly’s parents regarding which were the most important
target symptoms at the moment. We agreed that her repetitive behaviors and increased
restlessness and activity were the most concerning . . . we have recommended the decrease
in the dose of Luvox . . . we discussed the use of two other medications . . .

From Carly’s eighth to tenth years, her education once again became a frayed patchwork
of in-class and homeschooling. Howard needed time off during the day to complete additional
college courses and was only able to work with Carly in the afternoons and weekends.
A fight ensued with the school board over who would take over his job with Carly at
Crestwood Heights. Our position was that a suitably trained ABA therapist was critical;
ideally, someone that we selected and trained. The board’s position was based on union
seniority, and they thought that a thirty-five-year-old male accounting clerk who
worked in the school system and wanted to work in the classroom was an appropriate
choice. The winds that had blown favorably for the previous two years had clearly
changed direction.

Tammy called to complain that Carly required ABA to learn and that putting her in
a classroom for developmentally handicapped children with an untrained worker was
negligent, if not criminal. “We have written reports from Carly’s psychologist and
developmental pediatrician stating that she requires ABA to learn new skills,” she
told the school superintendent. He resisted, claiming that ABA was the “flavor of
the month” in treatment of autism and
that Tammy had no right to interfere with the implementation of special education
in the Toronto District School Board. “You do not get to determine how we teach children,”
he said, and hung up.

A series of pointless emails of escalating anger followed. As we sunk deeper into
the bureaucratic quicksand, I decided to call the board directly and set up a face-to-face
meeting. We agreed that Tammy wouldn’t attend and that we’d try a good-cop/bad-cop
approach. Tammy had already declared which one she was and carried a grudge as a form
of exercise. I could at least fake tolerance.

I was led to a small conference room in the sprawling maze of cubicles and offices
at the board of education. I gathered my thoughts and channeled calmness as I prepared
to explain that their staffing plan was a misguided idea and would not be in Carly’s
best interests.

The superintendent did not attend, instead sending one of his direct reports. A woman
in her late forties entered.

After a few pleasantries, I came right to the point. “Carly has been making real progress,”
I said, hoping that a positive start would ease the conversation. Keep it all about
the student, I reasoned. “I’m sure we all want what’s best for her. Tammy, our doctors,
and I just don’t think it’s best for her to have someone without the right training.
Kids with autism need the stability of routine, and her ABA program is her routine,”
I pointed out.

“Union rules are unequivocal,” she told me. “We must give priority to union members
with seniority and cannot let one of your therapists jump the queue.”

“I don’t understand how a man who was an accounting clerk last week is suitable to
work with a girl with autism this week,” I said, hoping my sarcasm underscored how
ludicrous the board’s plan appeared.

“I’m sure we will provide the candidate with appropriate training to support the teacher,”
she parried.

“Is he trained as an ABA therapist?” I asked rhetorically. “Will
he come to our house for team meetings and to understand how to work with Carly?”

“All of our teachers take a seminar on ABA and autism now,” she replied, referring
to a two-hour lecture on the definition of applied behavior analysis provided to special
ed teachers.

“Come on, Deborah.” I exhaled. “You know that’s not what I mean. We are willing to
provide hours of training every week and the supervision of a Board Certified Behavior
Analyst as well as a registered psychologist. And we’re not even asking the board
to pay for it!”

But I had my suspicions about what this was really about. The school board had caught
wind of us bringing ABA into the classroom—a policy no-no. Furthermore, by bringing
Howard into the school, even though he was officially an employee of the school board,
we had compromised the seniority policies of the union. This seemed to be all about
keeping the union happy.