Carly’s Voice

by Arthur Fleischmann

  Dr. Stein agreed to see Carly on a regular basis over the coming weeks and to try a course of medication called gabapentin. Originally developed for epilepsy, the drug was sometimes now used for severe nerve pain and headaches. As Carly had been pounding her body so fiercely, Dr. Stein wondered if it couldn’t be some form of nonspecific neuralgia. Gabapentin had also been used successfully with some people who suffered from bipolar and mood disorders, so it kind of felt like a panacea in Carly’s case.

  Carly was discharged a day later, having completed every diagnostic test the team could imagine with the team finding nothing out of the ordinary.

  “It could be related to the onset of puberty,” our pediatrician reminded us. “Let’s see how she does with Dr. Stein for the next few months.”

  Again, did we have a choice?

  In the coming months, Carly was a closely monitored lab rat as the doctors titrated her medications up and down. Some had such adverse paradoxical effects—sedating medications that made her intensely hyperactive—that she was on and then off them within days.

  Tammy took to emailing Dr. Stein in the midst of the turmoil because to wait until the next day would somehow blunt the pain and make us lose focus.

  A few days later we’d be back for another consult with the psychiatrists. Blood tests were ordered to be sure the medications weren’t causing some irreparable harm. Months of careful, calculated experimentation followed under the direction of the medical team. Add a white capsule and a red tablet to the orange horse pill. Let’s see how we do with that. Better? Worse? The same?

  A few weeks later Tammy sent another note reporting on Carly’s progress. Some days she was unchanged. Others she seemed twitchy. Maybe her stomach hurt, but Carly wouldn’t say. One evening after a rebalancing of her medication, she fell asleep around eleven, but no sooner had she dozed off than she sprang from her bed and started spinning in circles, her face looking possessed. Other nights she’d fling herself to the floor and flail, making push-up motions. Many nights she would awaken at 3:00 a.m. and never go back to sleep. She used the bathroom and then spent the next four hours banging around her room, stripping her bed, taking things off her shelves, jumping on her bed, and jumping on the floor.

  Tammy pleaded for the doctor to see us immediately. “I don’t know how much longer we can keep this up . . . I am willing to continue with this medication trial but would like your feedback on what I have described thus far. I am afraid this situation is going to break up our family . . .” she wrote in an email one night after the bedlam had subsided.

  All we could do was cope. And wait. We had no other options, no further recommendations or offers of help. Dr. Stein was always responsive and made time to see us. But medication had to be adjusted slowly and carefully—one at a time. Over a period of several months, the demons that possessed Carly seemed to subside. Not entirely, but enough that we had moved through the crisis phase. Carly had become sufficiently calm and focused to begin working with Barb again. This in itself felt like a major breakthrough.

  “Tell them to stop yelling at me,” she told Barb several weeks after being discharged from the hospital.

  “Who’s yelling at you?”

  “Mom and Dad. At night when I yell and jump around. It’s not fun for me. My legs and arms tingle and I can’t make them stop. I have to move or it gets worse. I am hitting to stop this feeling.”

  She had told us once before that she struck herself to stop her body from doing something it wasn’t supposed to do. But this violent behavior, we knew, had to have another cause. Carly had finally opened a sealed envelope. Why had she not been able to articulate this months earlier? I wondered. Carly works on her own timetable and all we can do is wait. I pictured Carly’s brain whirring and churning and reorganizing itself. Chaos to order, of sorts. This little glimmer of insight was the breaking of a padlock. Even small children can tell their parents when something is wrong. But with Carly we were always guessing. Something as simple as stomach pain or a headache had to be intuited. Happy? Sad? Anxious? Carly was never able to provide any insight into what drove her actions. Doctors would ask us if we thought she was in pain as if we had a telepathic connection—adding frustration to an already hopeless experience.

  “I seriously doubt this is restless leg syndrome,” Dr. Stein said to Tammy one afternoon when on a hunch we suggested that we try a drug we had heard about for this unusual syndrome. “But Requip won’t have any interaction with Carly’s other meds, so it can’t hurt.”

  Within two weeks of starting Carly on the additional medication, the battle between Carly and her limbs subsided, proving once again how random and capricious finding solutions for Carly could be—and how diligent and assertive we had to be as parents in looking for treatments. Although still hyper and often sleepless, Carly no longer pounded her body black-and-blue. We began to learn how to orchestrate the complex combination of behavioral therapy and medication, love and patience, to bring Carly along. Having Carly begin to participate in her treatment plan opened new doors and brought new insight. For more than a decade it had been the blind leading the blind. But with Carly’s strengthening voice, we were beginning to see. Just a little.

  12

  Person Farm

  I wish people would be understanding and caring. But how can they be when they just don’t get it. I can explain it but no one will give me a chance. I want people to understand that autistic people are people and we all have an inner voice.

  —Carly

  By the time she was eleven years old, Carly had cycled through four or five schools. The local public school where we sidestepped the unions and brought in an ABA-trained therapist, at our expense. The nice little not-so-local public school with the segregated DH (developmentally handicapped) classroom. A small Montessori school that was experimenting with an autism classroom came next. That was a $25,000 attempt at progress. Back to the local public school with Howard in tow for one very successful year followed by a dismal failure the next.

  Carly wanted to learn. She had the ability to learn. However, there was no place that offered the one-on-one approach she needed and the flexibility to accommodate her physical and vocal outbursts; her need to stand up and jump around every few minutes, her head banging and compulsiveness. She was picking up communication skills and, although not reliably, many self-help skills like dressing and brushing her teeth. She could follow basic instructions. But she was a spring-loaded peg that didn’t fit anywhere. Tammy was continuously exploring options and there weren’t many. It was a relief to have Taryn enrolled in parochial school that went to eighth grade and Matthew in a nonparochial school that went all the way through high school. At least they were “settled” and doing well. But Carly’s education was an ever-changing kaleidoscope. “I just want a solution that will last more than one year and won’t cost sixty thousand dollars,” Tammy lamented.

  In addition to the musical chairs of her education, home care was still a massive challenge. Even a successful school program could keep Carly engaged only Monday through Friday, 8:00 a.m. until 3:00 p.m. That left roughly ninety hours a week that Carly was awake, at home, and required one-to-one supervision. Howard, despite his Superman status at our house, could cover only so many hours. To supplement, we engaged what seemed like a revolving door of therapists and support workers—some covered by various government agencies, some covered by revolving credit.

  Nights continued to be the black hole of desperation. While on occasion Carly might sleep peacefully for six or seven hours, we could pretty much rest assured that we could never rest assured. None of her doctors had found a solution to her insomnia and agitation. On average we were getting about three hours of uninterrupted sleep at a time. I’m still amazed that Tammy and I weren’t perpetually sick.

  Rebecca, a friend with twin teenage boys with autism, suggested we look into a more stable solution. One of her sons was on the more severe end of the spectrum. At over six feet tall and weighing 185 pounds with an o
ccasionally aggressive temperament, he was too much for the family to cope with full-time. Rebecca had already moved past the phase of grief and mourning and come to accept the fact that her son must leave home. Now a young man, he lived at a residential program run by Cedarview Institute for part of the week, and came home the other days where he had a one-on-one worker who took him to a specialized school for autism. They also had a nanny and an extended family who stepped in to help both financially and, on occasion, physically.

  At Rebecca’s suggestion, Tammy and I drove up to visit Cedarview. The girls were away at their overnight summer camps—Carly at a camp for children with various physical and developmental challenges—Matthew, then fifteen, was doing whatever it is that teenage boys do. The residence was located in a small town off the provincial highway that leads to what Torontonians call “cottage country”—a general term for hundreds of miles of lakes and forests stretching from an hour north of Toronto up to the edges of Georgian Bay and the Niagara Escarpment.

  “How do Edward and Rebecca do it?” I asked Tammy as we drove for what seemed an eternity. “Sending him up here . . .” I wasn’t criticizing; I was asking for permission.

  “What choice do they have?”

  The social worker who was coordinating our services suggested that we explore a routine for Carly that would have her living at Cedarview from Thursday to Sunday and at home the rest of the week. They had staff on duty twenty-four hours a day, seven days a week, which suited Carly’s perpetual motion. The plan sounded good on paper, anyway. We would send therapists to Cedarview, in shifts, for about ten hours a day to supplement the residential staff. In short, we were creating a school and behavior program that would help Carly get academics and learn to better manage in the nonautistic world. When at home, she would work with Howard, Barb, and our ABA team.

  Friends and family tried to encourage us for taking constructive measures. Placing Carly at Cedarview was never intended as a permanent solution to the permanent question that was her life. But it was something that could be done for a period while we thought through her young adult years. And possibly, just possibly, she would mature into a calmness that would allow her to live at home?

  I felt that creeping sense of loss as we drove along the two-lane highway that snaked through the flat farm country north of Toronto. The road narrowed and we passed through small villages with century-old churches, farmhouses, and disused cemeteries where the town’s founders were laid at rest. For many Torontonians, this route was a gateway to happy family weekends at the cottage. For me it felt more like the Odyssey.

  We drove silently as I turned off the highway onto the rural route leading to Cedarview. We saw the brick house rising up before us. My pulse quickened and my throat tightened. I focused on the pinging noise of the pebbles popping up under my car and the dust wafting across the road. I could still change my mind, I thought. And go back to, what? I parked near the front door and got out.

  The way a prospective house buyer sizes up a piece of property as he enters, I did the 360 look before climbing the steps to the covered porch. There were fields stretching out behind the main house, a large well-tended barn, a few gardens drying in the summer sun. What did I expect to see, a warning sign telling me to turn back before it was too late?

  We passed through the worn screen door into the foyer where we were met by the executive director and a senior staff member. I glanced around the entrance hall, lined with cubbies for the residents’ jackets, shoes, and outerwear. Each person had a hook and a basket, but it was hodgepodge of miscellaneous items, and I thought about how Tammy and Mari worked so hard to keep each of our children’s clothes neatly stored in their closets and drawers. It’s odd, the details that stick in my mind. Things of such little consequence at times of such great ones.

  The director was very cheerful and clearly proud of his facility. We had been told by the government agency that was managing Carly’s file that he had an excellent reputation and ran a squeaky-clean program. I’ll be the judge, I thought. I am suspicious from the start, though cynicism is something I can ill afford.

  The tour of the facility, however, was impressive. Although it was shabby by the standards of a private home, I could not deny the house looked well run. It was clean, spacious, and sufficiently appointed for the six or seven kids who lived there on either a full- or part-time basis. We were shown the room that Carly would use and were assured that although she would be staying in it only three nights a week, no one else would use it when she was not there. We were encouraged to bring our own furniture and decorations to make it feel homey. However, the house manager reminded us, we would need to use the plastic-covered mattress they provided and meet other standards of the safety codes they followed. It was a further reminder that this is not a home; it is an institution.

  Our tour concluded with a walk through the barn and the gardens that surrounded the home. A young man was weeding in the garden. “That’s Greg,” the director told us. “He loves weeding and gardening, and he earns an allowance to do it. He’s saving up to buy a little refrigerator for his room.” Greg looked up and gave us a widemouthed smile as if to say, “Isn’t that cool?”

  There was one other girl who lived in the house; she was a few years older than Carly and also nonverbal. From the description of the other residents, I quickly surmised that none of them received the same degree of therapeutic intervention that Carly got. The kids were placed at Cedarview because of their need for one-on-one supervision and their families’ diminished strength. This place was their only option for survival. We were no better or worse, but that was little comfort.

  We went back into the house and sat at the large island in the well-appointed kitchen. Big wooden cupboards and long counters stacked with cookware lined the walls. An enormous industrial refrigerator hummed. All things considered, I liked the room because it was unlike the sterile kitchens I’d seen in other residential facilities. Two young women in shorts and oversized shirts were preparing lunch. “It’s a bit quieter here on weekends in the summer,” the director told us. “Some kids go to camp or are away with their families.”

  “When she’s here, will she be lonely?” I braced myself so my voice wouldn’t crack. Seclusion is one of the things I feared most for my daughter. She was already so isolated. Unable to speak, unable to connect.

  “We keep the kids busy,” one of the young women offered up. “We take them swimming or into town and out for walks.”

  I heard the buzzing of a fly and looked out the window across the gardens at the fields below. There were a few cows grazing alongside an ostrich. It was a bizarre sight, but I’m used to weird by now. I wonder if Carly can be happy here, in this strange and unfamiliar place. Maybe the best I could hope for was a lack of unhappiness, I thought.

  Through the morning Tammy had been solid. She asked all the practical questions. Schedules, pedigree of staff, work space for Carly’s ABA therapists, Internet access, quality of food. She wound up a little bit as she attempted to explain the peculiar temperament of our daughter, an excitability that had gotten worse over the years.

  I glanced into the next room where an unusually tall young man of about seventeen sat at a large table used for crafts and games. He sat with a mountain of crayons, picking one up at a time and breaking it in half and throwing it back on the enormous pile. All the while he made squawking sounds that went from being jarring to annoying. Tammy had no need to worry that our daughter would be out of place here.

  “How do you manage the meds?” Tammy asked, concerned about accurately dosing the increasingly complicated buffet of Carly’s medication.

  We were shown a large, locked cupboard on the sidewall of the kitchen. It was designed to house cans of tomato sauce and tuna, but was now a vault of mood stabilizers, antiseizure medications, and antidepressants that were often used for people living with autism. Each resident’s prescriptions were labeled and stored in their own individual boxes. “The shift supervisor dispenses
the medicine,” we were told. Confusion and overdosing was a constant fear of ours when anyone other than Tammy or me administered Carly’s pills.

  The tour and grilling complete, we agreed to a trial period. The director was pleased—glowing, really. He tried to give us the sense that life at Cedarview was like life at a resort or on a cruise ship. Happy, happy, happy. Activities, great supervision, excellent food, and fresh air. What else could anyone want for their child? My hackles went up again.

  We knew a few people whose kids stayed at Cedarview. It would provide nighttime supervision and accommodate the daytime ABA therapy. The building felt more like a home than most facilities. With this meager rationalization, I agreed to the plan.

  Tammy and I drove back to Toronto, somewhat relieved. We had been looking for a solution to our pending crisis. Fall was coming, and with it would come the unanswerable question: What should we do with Carly for school and staff support? It was only July, and we had a plan in place, so we allowed ourselves a sigh of relief.

  13

  Growing, Apart

  I was once told that a block of wood is only a block of wood if you want it to be. So make it something else.

  —Carly

  The house was peaceful and even-keeled for the four days a week that Carly was at Cedarview. Life took on an eerie calm and flow. Homework, lessons, outings, and friends stopping by. It all seemed so sane.

  Inevitably I would walk into Carly’s room to put something away, however, and the image of her empty bed, her possessions neatly in place, even just the smell of her body lotion, would halt me in my tracks. It reminded me of the shrine that parents of lost children maintain years after their child’s death.