Carly’s Voice

by Arthur Fleischmann

  It took months of intensive MEDEK, a particularly draconian form of physiotherapy, to coax Carly into walking on her own, which she would finally do just after her second birthday. In addition to therapy appointments at a local clinic, therapists came to the house to teach Carly how to hold a cup, move items from one hand to another, and work on her fine motor skills—all the things most children intuitively learn. When a therapist wasn’t persuading Carly into a standing position or encouraging her to put pegs in holes, stack blocks, or thread a spool with string, Mari was. While Taryn played, Carly worked; she worked harder than most adults.

  At times, the girls were not so very different. On occasion, Carly could be all smiles and giggles. The sisters would roll around like oversized puppies on their bedroom floor, Taryn hugging her sister and saying, “Oh Carly, oh Carly,” in that one-way conversation we’d all learned to have with her. Carly giggled from the attention. From a very young age, Taryn reacted to her sister with good humor and empathy. I sat on the den floor and would take turns bouncing them on my knees, singing the children’s song “The Grand Old Duke of York.” But while Taryn would gleefully yell, “More, more Grappa Dupa Yorp” when I finished the rousing chorus, Carly would burst into tears until I started up again. “Again for Carly,” Taryn would say, providing her sister’s voice. Taryn was protective of her sister, guarding Carly as if she were a prized possession. Only on rare occasions when Carly would grab food or a toy away did Taryn scold her with a furrowed brow.

  Often, while Taryn would play with her Barbies, Polly Pockets, or coloring books, Carly would sit nearby holding yet another developmental discovery toy we had purchased in the hopes of engaging her. She would not play, per se, but rather turn the toy over as if to check its country of origin and scratch at the imprinted bottom surface. Her nails would trace over the embossed words like she was reading Braille, but her eyes told me she was elsewhere. Often she would put her tiny index finger into the screw holes that held the brightly colored plastic pieces together.

  When not holding a toy, Carly would stare at her hands and wriggle her fingers as if she were meeting them for the first time. “Carly’s doing fingie,” Matthew would say. I would look on, encouraging her to press the green button to illuminate the green light, or to stack the colored cups. I could not enter her world, whatever world it was, and fruitlessly called her into mine.

  Try as we did to encourage Carly to entertain herself, even for a few minutes, the only acts she would spontaneously engage in were rocking and banging. Pressing her heels deep into the mattress of her bed or the cushions of her favorite overstuffed chair in the den, Carly would lift herself to near-standing and then slam back with full force. All the while, she would drone ahhhh ahhhh ahhhh—as soothing to us as nails on a chalkboard—and stare into space. If uninterrupted, her methodical, vertebrae-shattering ritual could go on for hours. Despite best efforts to redirect her or at least cushion the blows, she ultimately wore holes in the chair and broke her solid oak bed so often that it eventually required steel-reinforcing bars. This much we knew: Carly had strong core muscles. If nothing else, she likely would never have a bad back.

  Excerpt from psychologist’s assessment, February 2, 1997:

  Dr. M. Mary Karas

  DIAGNOSTIC IMPRESSIONS

  Carly is only 25 months old. Yet with increasing awareness of the characteristics of the PDDs, one can offer a provisional diagnosis consistent with her behavior profile. Although she presents with the main characteristics of the developmental delay, she also presents many features of the PDDs. She is resisting change, is affectively isolated and has no functional communication other than through elementary gestures. She is quite unaware of danger and seems to have a vague awareness of the characteristics of the people around her . . .

  SUMMARY

  The psychological testing revealed that Carly is delayed in a number of developmental areas consistent with a diagnosis of PDD since she seems to represent with greater delay in the area of language than intellectual abilities. Carly’s developmental delay is at present the major consideration, but her parents’ and caregivers’ awareness of her meeting many of the criteria for Autistic Disorder should also be of relevance to programming efforts for her. The fact that she grows up with a highly competent co-twin make her delays more evident to her parents and may have a more adverse effect on them than had she been a singleton. On the other hand, her sister should provide a role model for her to stimulate as well as play companion. The fact that Carly enjoys her play and games with her sister reflects this benevolent influence of Taryn on Carly.

  Fifteen years later I looked through the color-coded medical files and remembered how much I had forgotten. True, Tammy had maintained the frontline role of investigator in attempting to unearth the causes of our daughter’s issues; I worked to pay for that which insurance or socialized medicine would not. But I was not completely absent. Doctors’ clinical notes refer to my presence at appointments I have long since purged from my memory. I have little recollection of the consultations with geneticists, neurologists, audiologists, dieticians, physical therapists, occupational therapists, developmental pediatricians, and psychologists that would become a full-time occupation for Tammy. And after all that, after years of blood tests, skin biopsies, metabolic studies, MRIs, evoked potentials, hearing tests, and God recalls what else, we knew only this: Carly was, as her developmental pediatrician stated in her notes, complicated.

  Scanning the doctors’ notes reminded me of all the things that Carly wasn’t. Most parents have a long list of comical stories from their children’s early years. Once I lay sprawled across our bed, grabbing five minutes of quiet while the twins napped. Just as I dozed off, Matthew pounded through the bedroom like Napoleon invading Italy, chanting “stinky farty butt, stinky farty butt,” and knocked over a framed photograph balanced on the nightstand. When he noticed what he’d done, he contritely stammered, “I’ll fish stick,” meaning to say “fix it.”

  Taryn made us laugh with her independence and vivacity. Taking toys out of the closet, she would settle on the floor at our feet and happily play for hours. She always maintained a sense of humor where her sister was concerned. Once Carly was lying naked on our bed after a bath; perhaps she was three or four. Taryn picked up one of Tammy’s credit cards that was on the nightstand and pretended to swipe it in the crevice between Carly’s buttocks, announcing, “I’ll pay with credit.” She and Tammy laughed so hard tears streamed down their cheeks.

  A few minutes later, Taryn came back into our room and dropped her pajama pants to reveal a Tootsie Roll poking out from her bottom. She squealed, “I have a fudgy butt!” before falling to the floor in gales of laughter. Perhaps I should have been concerned about my children’s scatological preoccupation, but it provided such comic relief that we encouraged it.

  Even Taryn’s sassiness had an innocent sweetness to it. She once called her nursery school teacher missy. “My name is Miss Whittington,” the young woman corrected her. “Okay, Missy Miss Whittington,” Taryn said with a giggle. Even at three she had a comic’s sense of timing.

  But I cannot think of any such memories of Carly.

  The pages that document the first years of Carly’s life are an inventory of inabilities. “Working with Carly was hard,” noted her developmental pediatrician upon our first consult. “I got her to sit at the table and take objects I offered to her, but she was unable to stack cubes or put pegs in a pegboard. She did not respond to any language cues. I heard some consonant babble, but no isolated words.” Even a year later, after hours of intervention, Dr. Stephensen, a developmental pediatrician we saw regularly, noted that “I still find Carly a bit of an enigma, but one cannot deny that she has gotten a thorough workup with so many consultants involved.”

  Even when Carly did acquire skills, they were often used in ways that reminded me that she was distinct from her brother and sister. Once she learned to walk, she immediately began to run—generally headlong into dang
erous situations like a busy street. Once she found the joy in grabbing objects, she began flinging them—a plate of food or a cup of juice. I came to appreciate Mari more and more. After dinner, she would sweep and mop up the pounds of food Carly had flung (had she actually eaten anything?) and take the girls out for a walk to the park.

  For the hour they were out, the house was reasonably quiet. Matthew’s best friend lived across the street, so the two were inseparable after school. Tammy would be at her desk plodding through the reams of forms the government creates to discourage those of us in need of help from applying for it. And I could sit quietly, read the paper, and eat in silence for thirty minutes and ready myself for when Mari left for the night and Carly was gearing up for round two. Not exactly a family meal, but we were making the best of our distorted reality.

  Perhaps we’ve never felt an a-ha moment with Carly because her progress was overshadowed by her challenges. She finally learned to walk and, in a fashion, feed herself. She could utter a few bleary words such as mama and cackah, meaning cracker, or ooce for juice. Even these approximations for language would soon evaporate like steam. By four years old, she was not toilet trained and would awake in the middle of the night and remain volcanic for hours. No sooner up, she would strip off her pajamas (a skill in itself, her developmental pediatrician reminded us), rip off her diaper, and jump about her room barking ahhhh ahhhh ahhhh. And then rock. Always the incessant rocking. The rocking became the manifestation of everything I hated about Carly’s condition. It was irritating, destructive, and unstoppable. “Ssshhhhh,” I would say, but it came out more like, “Stop, God damn it.” In some ways it was best that Carly couldn’t speak; my expletives were often free-flowing.

  Taryn, who shared the room with Carly, somehow slept through it. Either that or she had learned the first lesson of growing up as the sibling of a disabled child: Lay low. Tammy’s and my exhaustion and frustration from the Sisyphean task of remaking the bed, reclothing Carly, and tucking her in left us in a perpetual short-tempered state.

  Tammy spent hours searching for someone who could help dissipate the hurricane that was our daughter. We couldn’t find anyone up to the task, much less a cure. What simple solution could there be to stop a thirty-pound child from hurtling her body full force against a wall? We learned to improvise and tackle bits and pieces at a time. One night I came in to kiss Carly good night and found Mari had put Carly in a tight-fitting Lycra bathing suit over her diaper. “She has trouble taking it off and she seems to like it,” Mari explained. We had read that some kids like Carly were comforted by the sensation of snugness. Besides, if she couldn’t remove the bathing suit, she couldn’t remove the diaper. It was a novel solution that we used until Carly became fully toilet trained—a skill she finally mastered when she turned five. At least foraging in the dark for her pull-ups and her pajamas was a thing of the past. Getting her to sleep through the night would be something that would take another seven years, however.

  In addition to being diagnosed with severe autism and oral apraxia by her developmental pediatrician, Carly had been identified as having moderate to severe developmental delay at the age of two. It was a broad and general expression that has replaced the abhorrent term retarded and is used when doctors can’t identify any specific condition. “Carly has no specific etiology,” is how they put it. Several years later, I Googled etiology. I learned that it was of Greek origin and meant “the study of why things occur or the reasons why things exist.” Greeks used myths to explain phenomena they couldn’t rationalize. For all the answers we’d gotten as to why Carly was as she was, a myth would have been as useful.

  I didn’t blame the doctors for their lack of specificity. How could I? Carly couldn’t engage in many of the diagnostic tests they tried. She didn’t follow multistep instructions or tasks nor could she speak to explain what was going on inside her body. On occasion she cooed when held and cuddled by Tammy and me, and often giggled and laughed with her sister. Most of the time she was content to be adrift in her own world, sitting on the periphery of ours.

  As we dragged her from doctor to clinic to lab and back again, day after day, it occurred to us perhaps we were merely trying to label and identify her. How many more needle pricks would we make her endure? Sleepless nights with electroencephalogram leads attached to her little sweaty head? Evoked potential, hearing, and sight exams? Skin and muscle biopsies? The repetitive narrative of providing oral history to each subsequent doctor, nurse, and resident was enough to make us want to call it quits. Through her early childhood, we had learned nothing that was helping her come back to us, nothing that made her play with other children or even play meaningfully by herself, nothing that would help her noisy mouth form intelligible words. We had diagnoses, but little insight into what could be done to help Carly escape the whirlpool.

  We were beginning to feel that enough was enough and decided there would be no more physical suffering on account of science. “If it’s just information for information’s sake and no cure will come from it, then it’s time to stop,” Tammy said to me one evening, her body slumped on the couch, defeat on her tear-streaked face. We no longer held out hope that we would discover a specific part of Carly that was broken and could be easily fixed. Global developmental delay, pervasive developmental delay, autism, oral-motor apraxia—all conditions, but none of them specific ailments. Had she had cancer, we’d have known what to do. Had she incurred brain damage or had a stroke, we would understand her condition. But Carly’s affliction was like a blob of mercury: visible and dense and real, but try to grab it and it jumped from our grasp.

  Despite what doctors described in her medical records as “valiant efforts by her caring and deeply committed parents,” we would never receive an a-ha moment, much as we craved one. One dead-end street led to another. Somehow, life had to move on. Our other kids were growing and developing. We were running out of referrals and recommendations. And while our medical system is public in Canada, many of our therapies and consults were beyond coverage and had pushed our credit line to the brink. “I feel like there’s a button in her brain we just need to switch on,” Tammy said. But that button would remain out of sight, out of reach. In our hearts, we had hoped to find a magic pill that would turn Carly into someone else; someone who could speak, play, and be with us. But that folly had to come to an end. It’s not that we would give up on our daughter, but it was time to stop asking why, and start asking now what?

  Excerpt from clinical genetics report, October 12, 1997:

  Dr. D. Shaet, Division of Clinical Genetics

  Developmental milestones are delayed but have improved . . . she does not like laying on her stomach and to move she shuffles on her buttocks. Carly’s fine motor skills are delayed but she acquitted many milestones during the last year. She improved her pincer grasp but does not like to touch objects and does not pile blocks. She makes no attempts to put a puzzle together and does not scribble.

  Regarding language, she has difficulties both in receptive and expressive language . . . she does not follow more than a one-step command. Carly interacts with her sister frequently, but not other children. . . .

  The investigations done so far have failed to reveal any specific diagnosis. I explained to the parents that I doubt if we will be able to further delineate her condition. However, we wish to continue following her every 2 years and would like to be updated of her growth, development and of any medical/neurological investigation done . . .

  Sincerely,

  D. Shaet, MD, FABMG, FCCMG, FRCPC

  Division of Clinical Genetics

  CC: file, Dr. I. Tine (Neurology), Dr. D. Stephensen

  (Developmental Pediatrics), Dr. J. Kobayashi (Neurology),

  Dr. M. Goldstein (Pediatrician)

  A Recurring Dream

  I am dreaming a dream I’ve had many times since Carly was born. The two of us are sitting in the kitchen. Or maybe it’s the den. We are talking. Carly is talking. She’s teasing me about some
thing.

  “How do you like my haircut?” I ask her.

  “It looks like your head got caught in a food processor,” she deadpans.

  I wake up laughing out loud.

  Then I roll over on my side and cry.

  2

  Red Lentils and Chemo

  In the winter of 1996–1997, we had come to realize that the terrible twos for Carly would be nothing like those we had experienced with Taryn and Matthew. We struggled to find ways to cope with her sleeplessness, bleating, and crying; her inability to walk, play, or approximate the beginnings of language. Rather than enjoying Carly’s childhood, we were consumed by the tedious task of pushing her from one doctor to the next. While we had a clear diagnosis of autism and developmental delay, there was no clarity on the best way to educate or care for our daughter.

  Raising three kids—a seven-year-old and two two-year-olds—is challenging in an ideal situation. That one of the two-year-olds didn’t walk, talk, or show any interest in play made for a tedious existence. There were only so many times I could take them to the zoo, where we could push Carly in her stroller while Matthew bounded ahead and Taryn clutched my hand and waddled alongside.

  We were also faced with Carly’s bouts of inexplicable sobbing. As she sat on the floor, her face would twist up like she was in pain and she would shriek for hours. She would raise her arms to be picked up, but once held, squirm to be put down. At first, my heart would break. Tammy and I took turns trying to comfort her. Over time, as doctor after doctor could find no cause for physical pain, frustration took over.

  At a stage where most young mothers who didn’t work outside the house were beginning to enjoy play dates and walks to the park with their two-year-olds, Tammy’s full-time job was to scamper down the rabbit hole of doctors and therapy appointments in search of an answer to the puzzle that was our daughter. It was little surprise to me that the quest to find the broken link inside Carly’s brain would leave Tammy wan and without energy.