When Barb asked her the following week how she enjoyed the program, Carly was hesitant to write. Barb went on to ask her who was in her group.
“Boys,” Carly answered.
Thinking she had opened the door, Barb went on asking questions but got no response. Finally, Barb hit on the idea of asking if she had flirted with the boys.
“Yes,” Carly coolly answered.
Barb shot a look at Howard. “Do you think she knows what flirting is?” I’m not even sure Taryn understood the concept of flirting at the time. “What do you mean by ‘flirting’?” Barb pressed her.
“I gave them hugs and fliped my hair,” Carly answered to the stunned silence of her teachers.
“Did you have a boyfriend there?”
“Come on. I am too good looking,” Carly concluded with an air of cockiness. She then signed “finished” by waving her hands, palm to chest, signaling she was done speaking for the day.
Tammy called Dina to tell her what Carly had written and see how she had been acting around the other kids.
“Oh my God,” Dina replied, laughing. “I was wondering what she was doing. She kept hitting her hair.”
By all accounts, our daughter should be devoid of self-confidence. She cannot speak, independently engage in activities, or even wash and care for herself. If we were to believe her words, however, she did not see herself as out of the game.
I give Tammy credit for nurturing Carly’s self-esteem. “Why is it that they make these kids look so disabled?” she once asked me, referring to how teachers tied bandanas around the necks of kids who drooled or dressed them for the convenience of the caregivers in bibs and easy-fastening clothing. Tammy had always focused on making Carly look and feel as appropriate as her twin, by styling her hair and dressing her in the same types of jeans and shirts that her sister had. Carly was beautiful. At eleven, her awkward gangly body was filling out; her complexion was smooth and bright. In the years that would follow, we would learn that Carly saw herself as a typical kid locked in a body over which she had little control. I would like to think that by treating her similarly to her twin, we helped instill this sense of self.
As Carly’s voice became stronger and steadier, we began to see a playfulness, coyness, and an ability to manipulate. Before she wrote, one schoolteacher noted that Carly was the only person she knew who didn’t speak but could lie, referring to how Carly used her communication bracelet to request a bathroom break to avoid unpleasant tasks. But with words, Carly was proving that she could go head-to-head with the adults that controlled her world.
We had been trying to bribe Carly to type in longer sentences. When she typed two words, we gave her two chips.
“We want you to type lots of words. If you type an eight-word sentence, you’ll get eight chips,” Howard encouraged her.
“You don’t need numbers. Just give me the bag,” she demanded.
At that point, laughing, they gave her the bag. She had earned it for her wit as much as for her proficiency. Carly concluded the session by saying she wanted a hug from Howard, something she had never expressed before.
Not every session with Barb and Howard was as productive. Some days she refused to type and they would work on other communication methods like sorting words written on flash cards to help Carly learn vocabulary. We imagined that writing for Carly was like exercising a muscle. It was difficult and awkward. She typed painstakingly slowly with her right index finger. Attempts by her occupational therapist to engage other fingers in the effort failed. We felt that in time, however, she might become more fluent. This has not been the case, and it would be many months before she could reveal how hard it was for her to sit and focus on the task of spelling.
Despite these dry periods of writing, Barb and the team—at our urging—refused to use other forms of encouraging Carly to type, such as facilitated communication. FC had been around since the seventies as a technique of helping children with a variety of challenges that limited their oral or physical abilities to communicate. The facilitator helped by supporting the arm or wrist of the person as they expressed themselves using a keyboard or computer. However, there had been a number of studies discrediting the veracity of the writing by those using FC. We didn’t want to get involved with anything that could be misconstrued as therapists influencing Carly’s words or intent. We wanted to understand our daughter truthfully.
We had so many questions for her; we ached to have full conversations as spontaneously as we did with our other children. Though we tried, Carly would not sit and have a conversation with her family members. We only had witnessed her typing firsthand in the previous months because Carly finally allowed Howard to videotape some of their sessions so he could show us what she was capable of.
Still not understanding the controlling power of Carly’s obsessive-compulsive disorder, we tried endlessly to convince Carly to write with us. Drawing on her years of experience working with other children with speech-language challenges, Barb told us that keeping kids engaged is the first step to teaching them to communicate. She continuously looked for ways to let Carly guide the conversations. “If she’s motivated, she’ll type,” Barb said. One afternoon Barb pulled out one of her large photo albums filled with family pictures. “Let’s look through it,” she told Carly, “and you can ask me anything you want about the people you see.”
Barb slowly turned the pages of plastic-covered images of family events and vacations, images that are generally more interesting to those familiar with the subjects in the picture. Carly, however, was intrigued and was able to settle, looking in the general direction of the album. She tapped at an old black-and-white picture at a family gathering.
“Is that woman your mother?” she typed.
Startled, Barb asked how she knew that.
“She looks like you,” Carly replied.
“Who’s that?” Carly asked pointing to a picture of a teenage boy shooting baskets in front of the house.
“My son, Brandon.”
“He’s hot.”
Before Barb could ask whether Carly was referring to his appearance or his body temperature, Carly went on to ask, “Does he have a girlfriend?”
Howard, who is always quick to smile at Carly’s antics, burst out laughing. “Oh Carly, where is this coming from?”
But this interest gave Barb an idea. Why not ask if Carly would like to have a weekly chat with Brandon, who lived away at college? Using the webcam and instant messaging, Brandon would be able to talk to Carly, and she could respond in writing. Clearly she was motivated by boys, and what better way to start getting her to communicate with the outside world.
The next week, Barb arranged for their first online conversation.
With Brandon sitting at his desk in his dorm room, Carly started the conversation by asking, “Why do you have a grocery cart in your room?”
Brandon turned to look behind him and laughed. “Oh, my roommates and I use it to haul groceries and stuff.”
“Do you have a girlfriend?” Carly continued.
“Um, yeah,” he replied.
“That’s not good,” she chided. “Is she as cute as me?”
They all laughed. “No,” Brandon flattered her. “You’re way cuter.”
Carly seemed satisfied and signaled that she had had enough typing for the day.
“Did you like that, Carly?” Barb asked. “We can do it again.”
“Esss,” she replied, this time out of her mouth.
And by a stroke of luck, we discovered that the topic of boys could help us bridge the divide.
11
A Shaken Can of Coke
Q: What’s the one word you’d use to describe autism?
A: That’s a hard question. I don’t think you can just pick one. I think I would say things don’t always look like they appear. Just because in your eyes I might not look smart does not mean that’s the case.
—From a conversation with a producer of ABC News
Like a wobbly f
oal exploring its freedom, Carly’s voice started small and gained strength. As she opened up, she became more of a daughter and less of a charge. As long as Howard was present, Carly would hold court at the kitchen table with Tammy, Matthew, or Taryn looking over her shoulder and have short conversations after dinner. Howard would lean back like a grade-school student defying the teacher’s plea, his lanky frame cantilevered in his chair propped up on its back legs. From this precarious position, he would guard the bowl of chips used as reinforcement for Carly completing a phrase or sentence. He had a patient way of looking Carly in the eye and speaking firmly but calmly, as if drilling words into her to initiate a conversation. Most of the time her siblings cheered her on with words of encouragement. As we learned that Carly had a sassy sense of humor and a greater vocabulary than we had imagined, Taryn couldn’t resist testing her to see how far she would go.
“Do you know what constipated means?” Taryn asked her nonchalantly one evening after hearing us discuss Carly’s lack of bowel movement that day. Taryn was not asking out of sisterly love; she had a mischievous twinkle in her eye.
“When you can’t shit,” Carly replied unfazed.
I don’t know what makes me laugh more. Her flip answers or the lack of expression on her face when she’s cracking jokes. Matthew walked into the room and asked Carly how she was.
“Dad?” she asked, ignoring Matthew’s question.
“Yes, Carly?”
“Did you drop Matthew on his head as a baby?”
“No. No, Carly, we didn’t.”
She was becoming quite the troublemaker. But I wished her increasingly clever expressions matched an evolution in her behavior. Rather than becoming more calm and in control, as Carly ended her preteen years, her levels of agitation and explosive outbursts were becoming more frequent and ferocious. She had started violently slapping herself on the thighs, arms, and neck. If the fit escalated, Carly would throw herself to the floor and bang her head or slap her hands or feet onto the hard surface. Her pediatrician and clinicians could bring little understanding, and Carly was mute on the subject when asked. Perhaps it’s puberty, reasoned one of her doctors.
The therapists’ response was to intervene and get her to focus on something else, which they call redirecting. Containing Carly was like subduing a bucking bronco. Carly’s lean, sturdy frame was strong from years of rocking and struggling with her support workers. Taryn and Matthew would scold her, telling her to stop while Howard or I would attempt to hold her and restrain her from hurting herself.
“I can’t stand watching Carly do that to herself,” Tammy cried despondently. “It makes me sick to my stomach every time she does that. What good is it if she’s smart inside if she’s such a mess on the outside?”
I suppose we realized how Carly must have been suffering. I know we were. There were days when the house felt like a pressure cooker. Carly’s outbursts, after a long day of work, left me raw and short-tempered. Taryn and Matthew would withdraw to their rooms to hide from the chaos. But Tammy and I had nowhere to run. We wanted to believe it was some sort of behavior that Carly could control. Her doctors seemed unable to find any physiological reasons for her discomfort. They tested her ears, eyes, and stomach and shrugged their shoulders. While Carly seemed to have a growing vocabulary and understanding of her situation, on the topic of her outbursts she was unable to offer any clues to the cause or even articulate how she was feeling.
I came to dread the nights. Howard and Mari would be gone for the day. Carly would drift off to sleep fine, but by three in the morning be up jumping around her room bleating and braying like a cornered horse.
After months of unreturned phone calls and unsatisfying answers from our doctors, Tammy was determined to get action. We called the Cleveland Clinic because of its holistic approach. They agreed to look at all of Carly’s charts and let us know if they felt they could help. “I don’t care how much this costs,” Tammy said. “She can’t go on like this.”
As we assembled the charts and files to send them, Carly’s condition was deteriorating. It was so bad that Barb had discontinued her sessions. “There’s no point in me trying to make her work while she’s so behavioral,” she said sympathetically. Tammy and Howard had on more than one occasion brought Carly to the emergency room hoping that if a doctor saw her in the midst of a meltdown, they would be sympathetic and admit her for more advanced tests. After waiting three hours one afternoon, they were sent home with no solutions, feeling more hopeless. Eventually, Tammy called our pediatrician and left a message that we wanted Carly admitted to the Hospital for Sick Children, Canada’s preeminent pediatric hospital. And still we waited. Canada’s healthcare system is socialized. This means that all citizens receive excellent care paid for by the government, but wait times and a sense of urgency are generally the cost of this privilege.
Enough.
One morning in September 2007, after six months of escalating behavior, Tammy decided to take matters into her own hands. While I was at work, she and Howard corralled Carly into the back of her SUV and drove to the hospital. “We’re going to sit there until they admit her. Until this becomes the doctors’ problem, we won’t get any help.”
Howard, Mari, Tammy, and I took turns staying at the hospital through the day and night over the next week. Tammy had to run between carpooling Taryn and Matthew, food shopping, and errands, and I had to keep ducking in and out to get to my office, which was only a few blocks away. We all practiced triage with the rest of our life while we snaked our way through the red tape of the diagnostic departments of the hospital. The problem we were experiencing was that each specialist only looked at Carly from his or her unique perspective. Psychologists looked at her behaviorally. Ear, nose, and throat (a practice my wife refers to as Ears, Nose, and Wallet) from an upper respiratory perspective. Neurologists looked at her brain scans and saw no abnormalities. MRIs of every inch of her body, in fact, showed nothing. On paper she was good to go. But her violent outbursts at night and lack of sleep worsened. Her body was so black-and-blue, the Children’s Aid Society had been called in by one of the less experienced nurses without our knowledge. A primly dressed bureaucrat showed up to interview Tammy and me. Fortunately, when the woman from CAS arrived, our pediatrician was in the room and escorted her into the hall for a discussion. She did not return.
On the second or third night, around ten, as I tried to settle down on the small daybed with its hermetically sealed mattress, Carly flung herself from the hospital bed and began pounding herself. A nurse came in to check on the commotion, took one look at Carly beating her neck and legs as I tried to contain her, and burst into tears. She ran out, leaving us alone again.
The following afternoon Howard came by to visit. He brought a bag full of books and games that Carly enjoyed. I didn’t really play with Carly so much as oversee her at this stage, so I was surprised to hear that she played Connect Four. Skeptical, actually.
“She’s great at it. She beats me all the time,” Howard said.
I looked at him dubiously. Connect Four requires the players to focus and strategize. It’s like tic-tac-toe on steroids. This was not something I believed Carly could do readily. But after playing several games with her and losing, I felt like a fool for doubting Howard.
The week slowly progressed, and seldom more than one test was conducted each day, leaving hours of dead time. We pleaded with Carly to type and tell us what she was feeling inside and why she was slapping herself. She had taken to winding up her arm for leverage and smacking her neck just below her jaw with such impact it sounded like a paddle on a wet behind. You could hear the smack all the way down the hall. By then, however, she was as mute as she had been as a four-year-old.
By the eighth day, we finally felt like we were making progress. The team of doctors who had been coming and going, seemingly in no set pattern, finally met to confer on Carly’s case. Although they could not come up with any diagnosis of a physical nature, they agreed to bring in a psych
iatrist with a background in pharmacology and experience working with problem adolescents.
The next day we met Dr. Stein. She was woman in her early fifties with dark hair and an exotic look and manner that suggested a well-traveled and somewhat bohemian spirit. She was quiet, a listener in the manner of psychiatrists.
Carly was off to the side of the conference table in the doctor’s small hospital office, alternating between sitting and splaying herself on the institutional blue pleather couch. I had become increasingly defensive in the presence of doctors who repeatedly asked about Carly’s symptoms and then left us feeling like we were making it all up because they could not find any clinical explanation. At first, I was a little unsettled by the way Dr. Stein would stop talking and stare at Carly. I realized after the fact that she was merely watching and observing, since Carly was unable to answer any questions directly.
After a few minutes Dr. Stein spoke directly to Carly, something few specialists did. “I am not an expert in autism, Carly,” she said, “but the doctors here thought I might be able to help by exploring some different medications.”
She turned and said to us, “I’m usually brought in as a last stop with challenging cases. I’m wondering if Carly is attending to noises or voices inside of her,” she pondered out loud.
“You think she has schizophrenia?” I asked, my eyes widening.
“No, but sometimes people with rapid mood cycles and forms of depression may hear and see things.”
Typically, I wouldn’t be too thrilled by a diagnosis of a mood disorder. My mother had suffered with depression her whole life, and I lived through the devastation it wreaks. In this case, however, I was happy for any concrete conclusion. So much of Carly’s Carlyness was indefinable.
Carly’s Voice Page 13