About the Author
A passionate advocate for children with autism, Arthur Fleischmann is the founder and president of John St., a Canadian advertising agency.
Excerpt. © Reprinted by permission. All rights reserved.
Carly Fleischmann is the daughter of Arthur Fleischmann, author of Carly's Voice, which chronicles Carly's inspiring journey through the challenges of living with autism.
Patrick Lawlor has recorded over three hundred audiobooks in just about every genre. He has been an Audie Award finalist multiple times and has garnered several AudioFile Earphones Awards, a Publishers Weekly Listen-Up Award, and many Library Journal and Kirkus starred audio reviews.
Actress and director Cassandra Campbell has narrated nearly two hundred audiobooks and has received multiple Audie Awards and more than twenty AudioFile Earphones Awards, including for Orange Is the New Black by Piper Kerman.
Carly’s Voice 1
In the Eye of the Storm
A news reporter once asked me to describe our a-ha moment with Carly. He wanted to understand that blinding flash of insight we had had about our daughter. I thought for a moment before replying, “There never has been a moment like that. Carly has always just been Carly.”
From the moment our daughters were born on a gray morning in January 1995, both my wife and I knew which twin—Twin A or Twin B—was going to grow up to live the life of Carly, and which would become Taryn. Call it intuition or cosmic intervention, but one baby just was a Carly.
After the unsettled time around the birth of our son four and a half years earlier, we were elated to close the book on trauma and start a new life with our enlarged family. Matthew had been born during the grieving period for Tammy’s mother, who had died suddenly just months before his birth.
Having the twins had not come easily. Creating life was not an issue for Tammy; sustaining it had been. After three miscarriages in the years after Matthew was born, we were about to break the curse. We looked forward to a fresh start. Quid pro quo; we were owed that much.
“How many bedrooms do you have?” Tammy’s obstetrician-gynecologist had asked her cryptically five months earlier, during the summer of 1994.
“Three,” Tammy replied.
“You might want to consider four,” Dr. Amonkwa said.
It seemed that the Clomid, progesterone, and aspirin that he had prescribed had broken the cycle of lost babies and parental despair. Rather than one child, Tammy was pregnant with twins. Other doctors had told us that perhaps more children were not meant to be. But we, and in particular Tammy, seldom took “perhaps not” at face value.
After careful monitoring for the rest of the nine months, Tammy gave birth to our daughters. We considered naming them after the drugs that made their successful birth possible, but Clomid and Progesterone Fleischmann would have been cruel.
Our older twin and middle child arrived at 7:38 a.m., and her little sister, Taryn, fourteen minutes later. Carly had been the feisty one in utero, clamoring to get here. But once she arrived, she seemed to take a look around and say, “Oh, wrong place.” This world would never be in step with our little girl. Within weeks of her birth, Carly took on a startled and cranky look, one that matched her demeanor.
Taryn was peaceful and elegant with a cap of dark hair and a quizzical expression. But Carly arrived blotchy and patchy and looking surprised. From the prenatal medical records, there was little to suggest that the fraternal twins would have such different fates. Tammy’s medical chart indicated that the delivery of the girls was “spontaneous, vaginal, and uncomplicated,” much like the act of their creation had been. After a week in the hospital, we bundled our tiny new-potato-like parcels into furry winter baby buntings and brought them home to our modest Toronto house.
The next six months were a bleary, sleep-deprived period of normalcy. As normal as a household can be with three children under five, two of whom eat every three hours, twenty-four hours a day. Tammy and I would plod up the steep, narrow staircase to our bedroom around 9:00 p.m., lugging two babies and six mini-bottles of formula. Frighteningly, all six portions would be consumed before 5:00 a.m. the next morning, each feeding followed by the requisite diaper change.
Tired as I felt, I couldn’t fail to smile at the two little swaddled lumps. Carly and Taryn slept in a large woven basket that we placed atop a low dresser that Tammy had been lugging through life since college. It was stained a puzzling shade of green and had more sentimental than aesthetic value. Now tucked into an alcove in our bedroom, it served as a pedestal on which our daughters started their lives.
The two girls had spent nine months pressed together in Tammy’s womb and felt completely natural being tucked in tightly, snuggled closely. We made a conscious effort from the start to give them unique identities, refraining from dressing them the same or referring to them as “the twins,” but rather as Carly and Taryn. Yet, they were two halves of the same whole and would lie together, reaching out and touching each other, practically hugging. How were we to know that one day they would grow to be like the front and back cover of a book—matching opposites—with so much separating them?
Since dinner parties were out of the question (not that they happened often before the girls’ arrival), we covered our dining room table with a large pad and plastic tablecloth for changing the babies when downstairs. Tammy’s friend Sue would come over on Sunday afternoons and help us with laundry. While Tammy simultaneously fed the two babies, Sue and I would cook as much food as we could squeeze into our freezer for the week ahead. The first months were a blur of laundry, poo, spit-up, quiche, and lasagna. But Tammy was happy to have a family after the false starts and dying hopes. I have scores of photographs of the early days, each of us taking turns holding both babies. We both seem to have a tired but amazed expression, as if to say, “How’d this happen?”
Life took on a chaotic rhythm that was made manageable by the arrival of our nanny, Mari. Mari had recently moved from St. Lucia to join her sisters and cousins; one sister worked as a nanny for a friend of ours. She took to our daughters immediately, a broad, open smile spreading across her usually serious face whenever she saw the two girls. Although a very quiet person, Mari exuded confidence in running our household—a thankless task we were more than happy to relinquish. For the next twelve years she would buttress our family and steadfastly help care for all three of our children and home. Tammy and Mari divided the never-ending tasks of Matthew’s school and after-school activities and the seemingly endless work required to keep Carly and Taryn fed and clean. Tammy and I took a divide-and-conquer approach from the start, something that would stand us in good stead in the years to come.
My career had me at the office by 8:00 a.m. and seldom home before 7:00 p.m. Nevertheless, after work I did my best to focus on Matthew—to be sure he wasn’t left out. We had been warned that boys in particular could get regressive when new babies come into the house. I recall my brother more as a tormentor when he was nine or ten. He once tried to feed me cat food and put pepper in my sister’s chocolate pudding. On other occasions, he would hide under my bed or in the closet at night until the lights were out, then jump out and scream. Ghouls really do exist, at least until they become teenagers. Eventually, even little boys outgrow their wickedness.
Not knowing what to expect, I assumed Matthew might continue in the family tradition since he had his rambunctious tendencies. A year or two before the girls were born, we had bought a book titled Raising Your Spirited Child to help us understand why even the smallest thing, like an itchy tag at the neck of his shirt, could set off a full-blown tantrum. He was a rigid kid who vacillated between playful sweetness and the terrible twos that had overstayed their welcome.
While Mari and Tammy bathed the girls, I would eat dinner with Matthew. Then, in the warming spring evenings, I would take him to the park. As we walked, I often reflected on how Matthew’s infancy was also anything but ordinary.
Always a snorty eater, in the fall of 1990 when Matthew was eight months old, we had to rush him to the emergency room, barely able to breathe. After several days in the hospital while the doctors ran tests, we were told Matthew had been born with a double aortic arch. The vessels carrying blood to and from his heart were wrapped around his trachea and windpipe, literally strangling him like jungle vines choking a tree.
But Matthew was a trooper and rebounded from surgery quickly. Five years later, Matthew loved to hear how he had been a brave patient, how he was giggling and laughing within days of his operation. He wore his scar as a badge of honor. “You have no trouble eating now,” I joked with him. “Remember the time when you were two and Mom and I caught you taking an ear of corn out of the garbage after dinner?” Tammy and I had been washing dishes, and, upon hearing Matthew making noises of gastronomical bliss, found him smiling up at us as he finished an ear of corn that had been scraped from a plate into the garbage.
By late spring, the girls were sleeping through the night; Matthew was on a schedule; and Tammy and I even got an hour or two of quiet time before bed. We felt like we had gotten off the dirt road and onto the open highway. We traded a sedan for a minivan and ventured out on day trips and visits to friends, always lugging the girls, an oversized twin stroller, a huge diaper bag, and our rambunctious five-year-old son who ran circles around us making sounds like the Indy 500.
Before their first birthday, however, we began to see Carly and Taryn heading in different directions. Our first challenges with Carly were innocuous enough. Tubes in her ears to relieve the heavy fluid buildup one month. A few tests with audiologists to be sure the infections hadn’t compromised her hearing the next. Tammy and I could handle this level of intervention. Lots of kids had tubes put in their ears. It was as common as diaper rash. Just by looking at her, however, we knew that Carly had deeper issues than goopy ear canals.
While Taryn’s skin had smoothed into creamy baby softness, Carly’s often had a ruddy, chapped look. Taryn’s eyes seemed to giggle almost from birth, while Carly often wore a dozy gaze. And while Taryn was making headway at crawling, pulling herself up, and achieving all the other milestones of a toddler, Carly languished on her back. The biggest difference between the girls, however, was their personality. Taryn was happy and peaceful; Carly cried incessantly, earning her the nickname Cryly.
Our pediatrician did not seem particularly alarmed, but after the experience we had had with Matthew, Tammy and I were on full alert. We were referred to a physiotherapist at the Hospital for Sick Children, the first of what would become a legion of specialists. When it was clear that one appointment per week would not get Carly moving, Tammy enrolled her in a private clinic. Three times a week Tammy brought Carly to physical therapy, where they would tediously coax Carly from lying to sitting, and from sitting to butt-shuffling across the floor.
Excerpt from progress report, Play and Learn Integrated Nursery Program, January 4, 1996:
J. Spitz, Coordinator
SUMMARY AND RECOMMENDATIONS
At 10 months of age Carly has shown some delays in her language, gross motor, auditory attention and memory, self-help and socialization skills. Frequent ear infections with fluid in the middle ear may certainly have impacted her language and auditory attention and memory skills. She appears to have some generalized low tone which may be impacting upon her gross motor skills at this time. Therapy input seems to be appropriately managed through the two therapists seeing Carly at this time. This gives Carly intensive focus on motor development at this time. Carly and her mother have begun the weekly parent and child program at Play and Learn. Through this program we can target specific skills through a play approach. As well, home visits can commence at the family’s convenience to provide other suggestions of activities that will enhance Carly’s development. She will be reassessed in six months.
Just after Taryn’s and Carly’s first birthday, we had to acknowledge that Tammy’s obstetrician had been right. We needed a bigger house. Our dining room, which hadn’t been used for eating since the girls arrived, was filled with toys and scooters. Our kitchen, barely large enough to be described as “eat-in,” required that we eat dinner in shifts. And the two small bathrooms were always a traffic jam.
With three children instead of the planned two, we scrapped the idea of sending Matthew to private school and in the winter of 1996 found a house in a leafy section of the city near excellent public schools, parks, and stores. If not exactly a dream home, given our budget (which we overshot), it was more house than we had hoped for, and compared with our cramped quarters, it was a mansion. Four bedrooms, a den on the main floor, and a finished basement for a playroom. No more tripping over fire trucks and sit-on turtles with wheels. “They’ll carry me out of here in a body bag,” I told Tammy.
This was to be our house for life. I sought a measure of serenity in a home to counterbalance my rapid-fire job and rough-and-tumble family. Despite the awareness that Carly and Taryn were developing on diverging paths, I was confident we were starting something new and exciting. I had recently changed jobs, joining a hot new ad agency that had recently opened in Toronto. I was given a significant role in running a large portion of the agency’s flagship beer account. With my newly enlarged family and a house in a great neighborhood with good schools, I was feeling pretty pleased with myself.
But as the professional side of my life took off, my home life was about to slip into quicksand. Tammy was anxious about the growing chasm between the two girls. “Something’s off,” she said. I chalked it up to her vigilant nature and refused to put it on my “to worry about” list. Nevertheless, my wife began exploring play groups that would be ideally suited to both girls. Taryn needed the stimulation to match her extroverted personality; Carly needed it to pull her out of her sluggishness. For the next year, the months between the girls’ first and second birthdays, they went to what was clinically termed an “integrated early intervention program.” For several hours, several days a week the girls would go to a center resembling a cross between a kindergarten room and a kid’s birthday party. There they would encourage Carly to use her hands, paint, and play like the “integrated kids”—those more like Taryn. There are still pictures of Carly, smiling, covered in finger paint festooning a wall in our basement. But these playful pictures captured only moments in time. As soon as Carly was home, she would sit on the floor of our den rocking back and forth, humming to herself, and ignoring the world around her. Play was not something that came naturally to our daughter.
One of the instructors at Carly’s program told us, “You have to stay in her face.” Specialized workers, originally paid for by insurance and then later out of our own wallet when benefits ran out, would arrive at the house with jangly toys and oversized Raggedy Ann dolls. For hours they would sit on the floor of our den or the playroom with an exaggerated cheerfulness, encouraging Carly to follow instructions, take items from one hand and pass it to another, and play like other two-year-olds. Carly mainly stared up at them with a look that was a mixture of wonder and boredom. Taryn, on the other hand, was already off to play dates with friends.
After mornings at preschool, Tammy spent the afternoons making the rounds at medical facilities and hospitals. Sometimes I would take time off work to join her. The next four years would feel like an incarceration in a house of mirrors. One doctor unable to explain Carly’s lack of progress would send us on to another, who then pointed us in another direction.
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