As the days dragged into weeks and months, we realized this was not a life but a slow demise. It was either Carly or us. Years before, one of the staff at Northland, the special-needs school Carly attended as a toddler, introduced us to the idea of respite care. Respite is the chance for families raising disabled children to have a break. In principle, these little breaks were supposed to give the families a chance to regain their strength and perspective.
Run by various agencies, respite programs take place in either residential houses that have been converted to group homes or large institutional facilities. Pick your poison. The woman at Carly’s school suggested we contact Caring Friends, an organization that ran six or seven residential homes for teens with autism who were too challenging to raise at home. The families of several of Carly’s classmates made use of their services. The homes were located in diverse suburbs where larger houses were affordable and neighbors kept their distance. Clients, as they were known, might live in a residence on a part-time or full-time basis. In addition to these more permanent arrangements, families could plan occasional respite weekends. The executive director of the facilities suggested that this might be appropriate for us. Although Carly would be younger than the other residents, she explained, she would have her own room and sufficient staff to care for her.
On a parched summer afternoon when Carly was around five, Tammy and I drove out to visit a home that had space available for a weekend every month or two. It was a typical suburban Toronto home located in the labyrinth of a planned community about forty-five minutes east of our house. As we pulled up, the only distinguishing feature I noted was the large, somewhat battered transport van parked in the driveway. Over time, I was to learn that such a vehicle was the hallmark of group homes.
We walked up the path to the front door and the façade of normalcy began to fade. I noticed the cracked garage light, skeletal plants gasping in the dried flowerbed, and the sprung spring on the screen door, small signs I would learn are symptoms of houses that are not homes, inhabited by residents who have bigger things to tackle than aesthetics.
Andrea, the facility’s manager, welcomed us in. She was a woman in her forties, casually dressed in jeans and a T-shirt. Like many of the other managers of residential homes we would meet over the years, she had a calm professionalism, almost a detachment from the noisy chaos of the house. As we chatted briefly, I was struck by the matter-of-factness in the details of handing one’s child over to strangers. There was no judgment, no probing of why we were doing what we were doing. Andrea was more interested in Carly’s issues, her condition, what she needed. It was a relief that guilt was not a required payment for the services provided.
“We can get more of the details later,” said Andrea. “Why don’t I show you around the house and introduce you to some of the staff.”
From the front hall, I looked around the house hoping for some measure of cheer. I could feel Tammy’s anxiety rising. Her eyes darted around the open-space living and dining rooms; I think I heard her sigh. The furnishings, likely donated by well-meaning families, were sparse and well-tormented: a cracked leather sofa, and someone’s uncle’s La-Z-Boy that never had seen better days. An overhead light shone, its mismatched bulbs casting urine-colored light. The whitewashed walls were no match for the larger residents whose outbursts left them dented, scuffed, and pockmarked like a war zone. The kitchen extended into a family room where four or five boys sat around watching TV. The staff, a few young women, was making lunch. I saw the same multitasking we engaged in at home; trying to prepare sandwiches with one hand and blocking one of their charges from pillaging the refrigerator with the other.
Although I saw nothing overtly disturbing, there was little to comfort, either. The house had all the basics for survival. Unbreakable dishes and cups, clunky furniture, a table at which to eat. This was a place for strangers who lived together, but in the summer heat I felt no warmth.
I tried to maintain an upbeat air as I watched these gangly teenagers barking, flapping their arms, and shaking their heads. How could I leave my daughter, a girl no more than four feet tall, in this land of giants? My stomach churned.
“Are there any girls or smaller children who live here?” I asked Andrea.
“There is a girl, who is twelve. She lives here Monday to Friday. Her mother passed away earlier this year, and her father finds it difficult to manage,” she explained. I could not meet Tammy’s downward gaze. Only a few years past her first bout of lymphoma and chemo, I could see the film running in her mind—will that be us? But she was silent.
“And there is a little boy, about eight, who will be here some of the weekends,” Andrea continued.
We would learn over and over that autism was primarily a world of boys. For every female diagnosed with the disorder, there are four males. Many grew to be large, loud near-men with stamping-mad tendencies. Their behaviors are vocal and physical and sometimes aggressive. Carly, on the other hand, had more feral traits—smearing gobs of cream cheese on the furniture, tearing into packages of food, or repetitively flinging the clothes from her dresser and cupboard. But she was not aggressive—never hit or bit others, shrieked, or grew violent. Carly was not like most kids with autism. Even in her oddness, Carly was odd.
“Do you do activities with the kids?” asked Tammy. “Carly doesn’t sit still. She doesn’t watch TV. She needs exercise.”
“Depending on staff, we go out for walks or to the mall,” the woman said hopefully.
The thought of Carly spending a weekend inside on a warm sunny day made my soul sink. I grew up in a time and place where days were spent outdoors—roaming and finding adventure. I knew that left to her own devices, Carly would sit and rock, twisting and breaking whatever small items she could get her tiny hands on.
“Respite is for you, not Carly,” a friend would tell us as we lamented our decision over dinner out one night. I repeated this over and over in my head like a mantra. At home, we would try to make Carly’s life as disciplined and perfect as we could. For two days every month, good enough would have to be good enough. I wanted to feel relief in the permission to let go, but all I felt was profound sadness. Looking over at Tammy, I saw blankness in her eyes. It was a look she wore most days now. In a glance I could see she felt a desperation so thick she was suffocating.
Andrea took us to the second floor, where we poked our heads into the bedrooms and bathrooms. The rooms were bland, with a few personal effects of their residents strewn on the bed or dresser. Some rooms were reminiscent of a college dorm; the clutter was typical of teenage boys, a canister of Axe Body Spray and a few posters of rock heroes or voluptuous movie stars. But all the rock posters and cans of body spray in the world will never make this home. Only home is home.
We finished the tour and sat in a small room used as the administrative office. Andrea explained the schedule, handed us the ream of forms we would need to complete, and reviewed the qualifications of the staff that worked in the house. We had no doubts that the program was well managed. It had come highly recommended by people we respected. But this did little to improve our spirits. Rather than seeing this as a gift, we saw this as the first stumble onto the slippery slope of resignation. Today it was the occasional resting point, but one day, we feared, it would be the final destination.
We drove home in silence. Neither of us strong enough to broach the subject. But it was understood: We would give this a try.
Several weeks later, we packed Carly’s little overnight bag for her first respite weekend. “Pack some of Carly’s favorite things,” Andrea had suggested. A toy. A blanket. A pillow. But Carly had formed no attachments save for potato chips. She did not take comfort in possessions or people, from what we could tell. But we packed the blanket and stuffed animals that we tucked Carly into bed with every night. And a few of the stim toys—objects that she liked to fiddle with to relax herself—such as the octagon of colorful wooden tubes and bells strung together with elastic thread that she could s
tretch and rattle. Optimistically, we included some of the picture books I read to her every night.
Tammy and I tried to explain to her siblings why Carly was going away for a weekend. “It’s like a sleepover,” I lied. I can’t remember what we explained to Carly. We clung to the belief that she didn’t fully comprehend her surroundings. There were never tearful good-byes when we dropped her off at day programs or school like other normal kids. Perhaps parting from her family carried no fear or anxiety for her. I wish I could say the same for me.
I have limited recollection of the first few times Carly stayed at Caring Friends. I cannot recall what we did in those first weekends of freedom. Did we laugh? Run errands? Go out with friends? Probably we slept. Fitfully.
I do, however, remember the last. Tammy and I had quickly learned that the key to survival was to take turns with thankless tasks. Both the dropping off and the picking up duties had to be shared, as neither of us could handle that much emotional stress in one weekend. Leaving Carly filled me with a sense of loss and guilt, followed by the giddiness of knowing I could slow down if only for two days, followed by the guilt over feeling giddiness. The pick-up on Sunday brought relief that Carly seemed no worse for wear from her weekend. It also brought the dread of facing the next week back in the hole in which we started.
It was my turn to drive pick-up duty on what would be Carly’s final stay at Caring Friends. That weekend, we had done what the social worker at the agency that funded our respite program suggested: We acted like a regular family. On Saturday, Tammy and I took Matthew and Taryn to see a movie and out for dinner, and on Sunday, we relaxed with The New York Times over extended cups of coffee.
When I got to the house on Sunday evening, I found her on the sofa in the den, rocking back and forth, her hands over her ears. This did not surprise me, as it was the only state of rest she knew, other than sleep. She was wearing a soiled T-shirt and the elastic-waisted jeans she had been wearing when she arrived on Friday. And she reeked. At five Carly was still not consistently toilet trained.
After cleaning her up the best I could and disposing of the soiled diaper, I sought out the shift manager. “What the hell?” I asked her. “Why is Carly in the same clothes from Friday? And she’s filthy!”
“I’m not sure,” she said. “The worker that was with her this afternoon is gone for the day,” as if this were a logical explanation. Then, “And we’ve been a little short-staffed this weekend.”
For a brief moment I actually empathized. I knew what it was like to herd cats with one hand. As I gathered up Carly, so small and shabby, my open-mindedness dissipated. Over the past months, Carly had come home clean and healthy. Sometimes she would bring a small craft she had done. Not knowing all the details of how Carly’s time had been spent while away made it easier to accept that everything was fine. Or if not fine, then acceptable. But seeing Carly in a state of seeming neglect and the staff’s unapologetic nature led me to wonder whether this was not a thoroughly unusual circumstance.
The shift manager took out a clipboard as we were leaving. “Shall I put you down for the same weekend next month?” she asked.
“No, I don’t think so,” I said. Then, just in case, I added, “We’ll call you during the week,” as I led Carly out the door into the chilled dusk.
Exhaustion had given us the permission to place Carly in respite. The sleeplessness, the inability to spend time with Taryn and Matthew, or even to take a shower without worrying about what hell Carly was causing, was unsustainable. Handing our child to others to care for—was that not a final act of desperation? I realized, as I fastened Carly into her booster seat and closed the car door, that even this extreme act failed to stop our free fall. Placing Carly in the hands of others, even for a few days, left a hollow feeling in my gut. I could not relax despite the quiet in the house. Looking at my soiled daughter rocking in her car seat, my conscience jeered, “I told you so.”
As the dizzying fall continued, I lamented as I knew we had not yet reached rock bottom.
6
It Takes a Village
“Susan,” I said, “what can we expect?” We had come back in for another consult with the psychologist who had been following Carly’s development since our daughter was four years old. I had reread her latest evaluation over and over, each time feeling more lost.
Tammy sat in the chair next to mine as Dr. Marcotte reviewed the findings in the latest of what would become biannual evaluations. She hedged. “You two are doing everything you can for her. More than most. Keep in her face. Keep pushing her.”
“What will her future look like?” I try again, hoping for some measure of specificity. I like things in neat steps and stages.
“It’s very hard to tell how far a child like Carly may progress.”
We sit in silence, Tammy looking worn, drained. Having now survived nearly a decade of Hurricane Carly, we had hoped for some measure of promise. Some tiny piece of stony land that wouldn’t sink under our step.
“But what might her future look like? As an adult?” I press on, undeterred.
“Carly may be able to function somewhat independently. Maybe even a vocational job.”
My family is a family of professionals. Each generation encouraged to stretch farther than the previous. Mopping the floors at McDonald’s was not ever a part of the plan. Today I snort at my arrogance and small-mindedness. Tammy and I had had high expectations for all of our children. To be happy and independent, for sure, but to do something important and worldly. We had clung to some hope that Carly would emerge from this as a child emerges from a phase.
“I see,” I lie. “And our living situation?” It’s all I can manage to articulate. I don’t like choking up in public, and I see Tammy is now fighting hard not to cry. She squeezed her hands tightly in her lap and looked out the window.
“You can only do your best, for as long as possible,” the doctor continued. “There are group facilities you can explore when the time comes . . .” she said vaguely.
“I see,” I said again. But I still didn’t.
I battled the deflating loss of hope that Carly would ever catch up to her siblings. Along with the grief came a crushing boredom. I had hoped that by the time Taryn and Carly were well into their primary school years that life would be busy with family activities. Although I don’t consider myself the super dad, the type that coaches soccer, plays football with his kids, and volunteers at the school, I did look forward to spending time with my children. Matthew and I had taken up karate when he was about nine. Two or three times a week we trained at a dojo nearby and it became a routine we continued until we both earned our black belts around the time he finished high school.
Taryn and I played games, or I would take her to swimming, soccer, and hockey practice and watch her outpace boys twice her size. She had earned the nickname “Minnie” for her diminutive stature—all skinniness and smiles. Carly, however, was impossible to engage. Despite the fact that she never stopped moving, she didn’t do anything. Unless being guided through an activity by one of the therapists, Carly would lapse into one of two modes: sit and rock or run and destroy.
We met other families in the autism community. Many seemed to embrace their child’s disorder as if their uniqueness was as benign as left-handedness or freckles. “I think they’re in denial,” Tammy once said.
I sensed their admiration of their child’s unusual behavior to be genuine, and I was jealous. I saw no beauty in this condition. Autism was a thief. The opportunities it stole from Carly were obvious: the chance to participate, to play, to learn, to fit in. It stole a sister from Matthew and Taryn. It stole energy and money and patience. It was stealing our daughter, bit by bit. I saw no beauty, only evil. What force of good attempts to rob a parent of the love of a child? I was greedy; while I had two children with whom I could speak, play, and be a father, I wanted all three.
Some parents that we met through our autism network and from programs Carly attended were capable of
filling the role of therapist. In fact, a main tenet of ABA is to include parents in the training so they can provide consistent direction. Tammy and I marveled at their patience, sitting on the floor and supervising their youngsters as they put colored pegs in holes for a reward. The mere thought of it made me yawn. I found that the style of communicating with my child in the manner of a therapist turned me from a parent into an instructor, further distancing me from my daughter rather than bringing me closer.
“I feel like I should spend time learning Carly’s programs,” I told Tammy. “At least I’d have something to do with her.” Lowering my voice out of embarrassment, I added, “But I hate doing those repetitive tasks. It’s so freakin’ dull.”
“We’re good at getting stuff done for Carly,” Tammy reminded me. “But we are not therapists.”
During the whirly years of her childhood, the only time Carly was calm was on long walks to the park. When she was constrained by her stroller or a swing, I had a sense of peace; it was as close to a normal father-daughter experience as I could get. Taryn preferred to run all the way to the park. Carly, on the other hand, would melt down into a tantrum if we didn’t use the stroller. We began calling her the Countess von Carly because she wanted to be pushed in her carriage, even when she was six years old. Eventually, we bought an oversized stroller for children with physical disabilities rather than fight.
Flying through the air, snugly squeezed into a safety swing designed for children half her age, Carly seemed to find a serenity she couldn’t find on the ground. The motion and the wind in her face seemed to provide a sensory relief we could not replicate elsewhere. She could swing for hours, her eyes closed, hands over her ears, and making a humming sound through her closed lips. Brrrr, brrrr, brrrrr. Mmm. Mmm. As I watched the other kids play, my mind drifted. What if I could just take a gram of Taryn and inject it into Carly? I dreamt of what it might be like to have twins who were both normal. Maybe Carly was dreaming the same thing.
Carly’s Voice Page 8