Having turned the game in her favor, Carly sat down at the table in the next room with the computer in front of her and coyly typed to Barb, “I want nice man.”
As Howard and Barb shook their heads in satisfied amazement at Carly’s quick mastery of emotional manipulation, Carly chided, “I need salt.”
As years of noisy silence died, a prima donna was born.
Excerpt from psychological assessment, April 2006:
Dr. Susan Marcotte, PhD, C. Psych
Registered Pyschologist
Carly’s parents have requested a full-psycho-educational assessment of Carly to provide an updated account of her cognitive and academic profile to determine her areas of strength and learning needs . . .
The consistency in school, classroom and educational assistant appears to have been helpful to Carly. Most notably, there was a period of time during the 2002/2003 school year that Carly did not receive ABA within the classroom, during which time she was seen to regress. Once her ABA therapy programs were reintroduced within the classroom, her behavior began to improve noticeably.
Carly seems to have progressed in nonverbal areas of the academic curriculum . . . she appears to have relatively stronger problem solving skills. With her ABA therapist, she is demonstrating skills to type words and concepts. She will type her responses consistently for familiar people.
DEVELOPMENTAL SKILLS
A variety of measures were utilized to examine developmental skills . . . Previously, her skills were assessed to be within the “Well Below Average” range (<1 percentile), consistent with a 1 year, 10 month level. The Wechsler Individual Achievement Test and the Peabody Individual Achievement Test were used to evaluate current levels of achievement in the areas of reading comprehension, spelling, general mathematics, and math computational skills. (Only subtests that could be administered in a multiple choice or written output format were administered given Carly’s verbal output and fine motor difficulties.) . . . Carly generally demonstrated academic skills at approximately Grade 3 level with the exception of her math computational skills, which are weaker at a Grade 1 level. While Carly’s academic skills may not be in the average range of functioning, they do suggest continued academic progress.
In summary, Carly is an 11 year old girl who continues to present with Autism in addition to a severe communication disorder. Previously, Carly’s presentation was also indicative of a Moderate Developmental Disability. However, during the current assessment Carly demonstrated considerable progress in being able to learn and share her knowledge and she was able to demonstrate perceptual reasoning skills within the Average range.
10
From a Whisper to a Shout
I want to say to all the autism experts that keep on saying that I’m not really writing that you proved that you are not an autism expert.
—Carly
During the first months that Carly was typing, she used various pieces of equipment known as voice output devices. One, the DynaVox, was a red plastic box with a touchscreen face that could be programmed with picture symbols of things Carly may want. Different food items, activities, even emotions. Carly would carry the DynaVox around on a strap, slung like a purse over her shoulder. The device, however, had no printing option, leaving it as mute as Carly. Like a personal secretary, Barb would copy down word for word both sides of any conversation on her pad of yellow-lined paper and give it to us at the end of each session with a list of recommendations. Once we bought Carly a laptop, Barb would type the spoken dialogue in between Carly’s writing, like a court reporter.
A few other therapists had witnessed Carly typing, but we hadn’t seen it ourselves yet. And any time they took out a video camera to film Carly, she stopped typing. I’m sure they were worried that we didn’t believe them, but for how long would anyone trust that Carly could type full, cogent thoughts without actually seeing it? Given her behavior for the past decade and everything we’d been told about her prognosis, I was more likely to believe our dog could speak.
“Are you ready to show Mom that you can spell?” Barb asked Carly. It was early fall of 2005 and Carly had recently had her second major breakthrough—typing in full sentences.
“she does not like me. She just likes my sister,” Carly responded. Her words, in some ways, were all the more powerful because her face did not show any sense of emotion.
“Your mother loves you very much,” Barb assured her. “What can she do to show that to you?”
Carly usually rebuffed hugs and kisses. Because we had so long assumed her cognition was far below that of her sister, our conversations with her were simple; seldom more than demands for compliance: “Carly, let’s get dressed. Carly, let’s go swimming. Carly, stay in your bed.” We were constantly doing for Carly, but did she know how much we loved her? Did she know that seldom a moment of the day would pass without her creeping into our thoughts?
Barb and Howard were holding one of their after-school sessions at Barb’s house. Carly led Barb into her living room and sat next to her on the sofa. With the voice output device on her lap, Carly was ready to open up and have a heart-to-heart with her confidante.
“I want Mom to spend time with me. With little me,” Carly pouted. “I want to go away with her like Taryn,” she said, referring to a short trip Tammy had taken with Taryn a few months earlier. She went on to complain that we sent her away on weekends, referring to a weekly residential program she had begun to attend at a camp north of the city for children with autism.
Barb was winded. I’m not prepared for this, she thought. As a speech pathologist, she knew strategies to help kids communicate. Now she felt she was being thrown into a much tougher role, that of a psychologist. In the eight years of working with Carly, she had never had a conversation with her, much less heard an emotional outpouring like this. She was terrified of wasting the moment, saying something wrong and losing Carly back down the dark tunnel of silence. I need a brilliant answer, she thought, and called to Howard, who was sitting just out of view in the hallway.
“You don’t need to be a doctor,” he said. “You have kids. Think like a mother.”
Barb went on to reassure Carly of Tammy’s commitment and love.
“This is something that your mother needs to hear, Carly. Can I tell your mother we discussed this?” Barb asked.
“Yes. But not that I spell,” Carly replied, paying no attention to the impossibility of the task.
“How can I tell her if I don’t tell her you spelled all this?” Barb pointed out.
“You will find a way,” she said, cryptically.
“Carly, we are all so proud of you. You are making such great progress. You know, spelling is really going to help you out in the end. Just think, if you spell for people, you’ll get the things you want. Do you think you can spell for your mom and dad?”
“No. Stop,” she answered. Then, “Maybe.”
Another glimmer of hope. Or was it? I’d like to say this revelation came with a watershed sense of relief. That would be a lie. Carly wouldn’t type spontaneously. She would never sit down at a computer or use her voice output device and initiate conversation. If we attempted to place one in front of her, she would push it away as if it were Brussels sprouts. Getting her to write took coaxing and reinforcement, generally with potato chips. And she never spoke with Tammy, her siblings, or me unless Barb or Howard was at her side. Years later we would learn that what we thought was teen stubbornness was in fact OCD, obsessive-compulsive disorder. It wasn’t that Carly didn’t want to type with us; she was unable to force her body to do so unless the situation was exactly right for her. By right, it meant having Barb and Howard at her side.
Barb raced over to our house immediately after concluding her session with Carly. Tammy, Barb, and I sat on the back porch, a covered, open-air extension of our kitchen. It was a place Tammy and I would often escape to for an early-morning coffee or glass of wine in the evening. “Is it cocktail hour yet?” I would joke at nine in the morning a
fter a particularly rough night. Even in the fall, though faded, the garden bloomed resiliently and the light was warm and golden.
Barb was tearful as she told us about the conversation. “She is so intelligent,” she said. “She has an awareness, understanding, and feelings so much more sophisticated than any of us had imagined,” she marveled. “She may look like she is not listening, or not understanding, but I think we know now that’s probably not the case.” The underlying knowledge of how hurt Carly felt for being treated like the ugly stepsister hung between the three of us as we silently sat sipping a drink.
“I don’t know what to say,” I lamely offered.
“I wish she would talk to us. Tell us how she feels,” Tammy said.
“I wouldn’t engage in a power struggle,” Barb intuitively reasoned. “I would speak in front of her the same way you speak with Taryn. Don’t say anything in her presence you wouldn’t say to your other kids. Don’t make her type just for practice or to please us; she knows how to spell. She’ll type when it can be used to satisfy her own needs, not ours.”
Carly’s growing awareness was in some ways exciting; it meant she had intelligence far greater than we imagined. It also meant that the often-harsh language and brutal honesty that should have been reserved for moments behind closed doors had not been lost on her. She was a silent witness to her life in our family. This realization left me with an overpowering sense of guilt. I was angry at myself and others who spoke hurtful words, mistakenly assuming they floated over Carly’s head. I regretted every scolding and the callous comments I would make about Carly’s behavior when speaking with others directly in front of her. Several years later she told us, “You know how people talk behind people’s back? With me, they talk in front of my back.”
Regret for our past, frustration in our present, and anxiety about our future created a vortex of emotion. Tammy looked thoughtful. She may have felt a sense of guilt in what Carly told Barb, but she did not let it show. My wife is a pragmatist and likely was already thinking ahead to what had to change in our life. We had to relearn how to be with our daughter. There were so many bad habits to break. While her outbursts and uncontrolled behavior would continue to limit the degree to which Carly would be able to participate in all aspects of our family life, we immediately ceased talking in front of her about events we believed were too challenging for her to handle.
We never did let on to Carly that Barb had spoken with us about feeling like a second-class citizen. Instead, we immediately made plans to experiment with a simple overnight vacation. Matthew was planning on spending a weekend with a friend and his family who had moved out of the city to what had been their country house. We told Carly we wanted to take her downtown to stay overnight in a hotel. “We can swim in the pool, go out for dinner, and watch TV in bed. Sound good?”
“Eh ess,” she replied with what I imagined to be a gleeful smile.
“Should we invite Taryn?”
“Eh ess,” she said a second time.
I was grateful that Carly’s jealousy was not so deep-rooted that it would drive a wedge between the girls.
We began looking for little ways to include Carly in activities we had formerly thought would not interest her. As long as we had Howard at her side, we mustered the energy and confidence to venture back to restaurants, holiday dinners at friends’, and even the occasional movie. Howard was able to cajole and convince Carly to behave in ways Tammy and I could not. And when Carly erupted into flailing tantrums, he had the patience to whisk her away and get her refocused. For both Tammy and me, the wailing set off internal chemical reactions that left us filled with despair. But Howard was firm and calm and seemingly unscathed by Carly’s temperament.
I had so many questions to ask her. I still do. This awareness that Carly was so there but so unreachable made me despondent. I felt I was owed an explanation for what was going on inside her body that caused her outbursts or her compulsiveness. Yet on these points she was mute. Even when posed by her tireless pair of helpers, she would not answer questions that would offer any insight into her internal struggles. I would even have been satisfied with silly banter, the kind Taryn, Matthew, and I engaged in, about school, TV shows, or my annoying habit of speaking in imaginary foreign accents and making up tales of adventures in my fictional past. Carly, I’m sure, had an opinion about all of this. But she would not engage.
It was like having a buffet laid before me and then told not to partake. No manner of sly manipulation would break the stalemate. “What would you like for dessert, Carly?” I would ask. “Cake, cookies, or ice cream.” We seldom even served dessert, but if it would get her typing, I’d gladly have served candy for breakfast. Carly would sit with her voice output device between us, rocking in her chair and humming. No dessert was served.
After she began typing, we cycled through various types of equipment hoping that Carly’s recalcitrance could be assuaged. Each was met with a similar lack of enthusiasm. The energetic consultants at the agency that supplied the equipment would optimistically push a new version of the DynaWrite or some such device in front of Carly and inquire, “Do you like it?”
“No” Carly would choose from the words printed in front of her.
It would be several years before we understood why Carly refused to type on the light, quick, and convenient equipment. As she began telling us that she wanted to “be normal, like my sister Taryn,” it occurred to us that the devices that were intended to help her join our world instead made her feel more like one who does not belong. They made her feel like she was disabled; like she stood out from other kids her age. When I look back, I can only shake my head at the absurdity of the logic. The squawking, bleating, flopping, and flapping were much more obvious signs of her disability. But since these couldn’t be controlled, Carly focused on the handful of things that could. She had no interest in a bright red plastic device with a strap worn over her shoulder that in effect said, “Disabled Kid Who Can’t Speak.”
Laptops were still expensive and relatively slow to start up compared to the devices offered to us, but we reasoned that it was a good alternative. No kid wants an “Augmentative Communication Device” emblazoned with a metal tag identifying it as leased from a government agency. But every kid wants their own computer. Thus began our love-hate relationship with technology. For the next three years we churned through numerous laptops as they were dropped, slammed shut, and choked to death with the detritus of potato chips and juice.
We began archiving our conversations with Carly. First, Carly typed only with Barb and Howard, the valiant magicians who pulled language out of her through her fingertip. Later, Carly began conversing with a few therapists, doctors, or workers that she bonded with—always with Howard by her side. Most of the time Carly worked either at our dining room or kitchen table, or at the round worktable set up in the basement. Her therapists would sit several feet away, one on either side, and they would pass the computer back and forth to Carly. Howard often sat to her right and kept a small bowl of chips in sight, but out of grasp. From the start, Barb and Howard were careful never to touch Carly as she typed. She was highly ritualistic because of her OCD, and they didn’t want her to become dependent on physical encouragement. Their sessions sounded like a one-way conversation between adults. I could often hear the voices of Barb and Howard rise and fall, but I could never hear my daughter, or even the mechanical voice from her device or computer. Carly’s written words would chronicle her childhood.
Bit by bit we were rewarded with glimpses of Carly’s hidden personality. She was becoming like one of those cakes with the charms and coins baked in. I looked forward to coming home from work to find out if there was a little surprise. Had she unveiled anything of what was going on inside?
We once asked her why she kept dumping the contents of her dresser onto the floor or why she stripped her bed incessantly.
“I know I’m not supposed but I can’t help myself. That’s why I hit myself sometimes. I’m tryi
ng to stop my body from doing something it shouldn’t.”
In the long stretches when Carly would refuse to type in front of Tammy or me, Barb became a vocal advocate. She continuously reminded us to find ways to make Carly communicate with words. She developed a sheet of standard questions and laminated it, placing copies around the house and in a communication book. Rather than a binder of pictures and symbols alone, Carly now had pages of phrases, words, and concepts (“I feel sad”) that she could rifle through and point at to make herself understood. “I want her to feel like she’s in control,” Barb counseled us. “So much of her life is dictated to her, she needs to feel like the director now.”
That Carly could begin expressing herself was a relief for all of us. It meant that over time, she would be assured of some measure of independence. Some of the walls isolating her from us could be breached. More amazing was the sense of self that was emerging. I felt like we were discovering the lost city of Angkor. As we hacked through the tangled vines and overgrowth that shrouded Carly from us, we were discovering a fully formed, intricate personality.
Keeping Carly busy was still one of our biggest goals. Because of her restlessness, there was no “just hanging out.” Tammy found a winter holiday camp at a community center nearby that would keep her occupied while school was closed for the winter break. One of her therapists, Dina, agreed to supervise her, as the program was designed for nonchallenged kids. There were really very few programs for kids with autism, and what the hell, we thought, shouldn’t she be around other kids whose behavior we wanted her to imitate? As long as those running the programs would have her, and the activities could be modified with her ABA therapist’s assistance, we were game.
The camp week was successful. Interestingly, the other kids—all around nine or ten years old—warmly welcomed Carly. They were fascinated by her odd behavior, juxtaposed with her eagerness to be a part of the activity. I have always been heartened and amazed that kids welcome Carly far more than many adults do. I had anticipated a backlash or teasing, but over the years those have occurred infrequently. Somehow, even when she won’t write, Carly has an ability to engage other children that I cannot explain. Perhaps it comes from her sudden smile and giggle: fleeting and surprising but infectious.
Carly’s Voice Page 12