Carly’s Voice

by Arthur Fleischmann

  [11:37:58 AM] Arthur says:

  Shari lives two doors up the street from the house.

  [11:38:19 AM] Arthur says:

  but it may take us a while to work it all out.

  [11:38:25 AM] Arthur says:

  so you have to be very patient.

  [11:38:27 AM] Arthur says:

  okay?

  [11:40:01 AM] Carly says:

  can i see uit

  [11:40:29 AM] Arthur says:

  i will have to find out. right now, there are a few young men who live there. they will be moving out.

  [11:40:37 AM] Arthur says:

  then we would need to do some work to fix it up a bit.

  [11:42:26 AM] Carly says:

  can i put a hot tub in

  [11:43:15 AM] Arthur says:

  hmm. i don’t know. it’s pretty expensive!

  [11:44:17 AM] Carly says:

  and a big pool

  [11:44:28 AM] Arthur says:

  well i KNOW they can’t put a pool in.

  [11:44:32 AM] Arthur says:

  the backyard is very small.

  [11:44:39 AM] Arthur says:

  in fact, right now, it’s just the driveway.

  [11:44:50 AM] Arthur says:

  but I want to put in a patio and a garden if they will let me.

  [11:45:06 AM] Arthur says:

  i think maybe we should think about putting a pool in at our house though!

  [11:45:14 AM] Arthur says:

  and you would use it here.

  [11:48:34 AM] Carly says:

  i want a big pool

  [11:48:45 AM] Arthur says:

  I hear you. I do too!

  [11:51:26 AM] Arthur says:

  Carly, what else would you like to talk about?

  [11:52:17 AM] Arthur says:

  It’s great that you are writing. I know you don’t like it,

  [11:52:40 AM] Arthur says:

  but it is the only way we can all understand what you are thinking and what you want.

  [11:53:01 AM] Carly says:

  ellen had a woman on and she had a son like me and she fixt him

  [11:54:00 AM] Arthur says:

  Carly, I know that your challenges make your life very hard.

  [11:54:06 AM] Arthur says:

  But you do not need to be fixed.

  [11:54:17 AM] Arthur says:

  you just different than some other people.

  [11:54:22 AM] Arthur says:

  But you are very smart.

  [11:54:27 AM] Arthur says:

  You can write.

  [11:54:37 AM] Arthur says:

  And as you get older, you will have more control over your body.

  [11:54:47 AM] Arthur says:

  And you will be able to type very fast like me!

  [11:55:00 AM] Arthur says:

  Trust me, you will be able to do a lot of things.

  [11:55:10 AM] Arthur says:

  But don’t give up hope. And be patient, okay?

  [11:56:51 AM] Arthur says:

  Mom, Howard and I are going to see Dr. Stein again in a few weeks and talk about some changes to your medication.

  [11:57:35 AM] Carly says:

  he can now talk i want toooooooo talk like him

  [11:58:03 AM] Arthur says:

  i know you do. but promise me you will keep writing for now. we will keep looking for ways to help you speak.

  [11:58:15 AM] Arthur says:

  but you are so smart and have good things to say. so write them!

  [12:01:59 AM] Carly says:

  it is to hard and if I could talk i could stay home with you

  [12:02:38 AM] Arthur says:

  I know. But that isn’t the reason you live at Cedarview part of the week.

  [12:03:00 AM] Arthur says:

  you live there because they have staff who can help you take care of yourself.

  [12:03:10 AM] Arthur says:

  they have lots of people who can help teach you.

  [12:08:38 AM] Carly says:

  if i could talk i would tell you i dont want to go i want to stay with you and mom

  All good things come to an end, as the expression goes. Thank God, everything bad has an expiration date, too. Although Cedarview provided the services we needed, no one felt good about Carly’s living situation. Even Taryn and Matthew pouted that we had sent their sister away—an accusation that was hard to hear. It was clear, however, that Carly was still not ready to live full-time at home if Tammy and I were to maintain a marriage and our sanity. But there had to be a long-term alternative to Carly’s living many miles away four days a week and being homeschooled the other three.

  We had become close to two other families through our years of litigation and negotiation with the government and schools over providing the needed services for our children. The families each had a child living part-time at Cedarview. They were equally eager to find a way to have their children be a part of their lives without losing their minds. After an exhaustive search of the options available to children and young adults and their families, we came to the conclusion that the area of the country we lived in was several decades behind other areas of North America. Our dream was to have a home in Toronto that was run by staff trained in ABA where kids could live full- or part-time, and have access to one of the two top private schools for children with autism in the city. It was a lovely dream. A $400,000-a-year-per-kid dream based on the estimates of the government agency that managed Carly’s residential care. With that price tag it would remain a dream. Kids who are “in the system,” as they are described, have a per diem amount allotted to them and none of the three families could get that kind of allotment. Nor were we in a position to fund it personally.

  The families were used to hearing two words: expensive and no. Neither was daunting any longer, however. We learned that the only way to not get no for an answer was to ask a different question. So rather than asking for direct funding and purchasing our own property for the three kids, we took a slower, collaborative approach.

  Peter McPherson, the executive director of the youth services agency we relied on to help fund Carly’s per diem at Cedarview, was not the usual bureaucrat with whom we had worked before. While he maintained good relations with his government counterparts, playing by the rules as necessary, he had a creative bent and a progressive attitude. In him, we saw a kindred spirit and the hunger to do something radically different for kids with autism in Toronto.

  “We want to start a program like the Eden II model on Long Island, New York,” Tammy told Peter. We had regularly scheduled plan-of-care meetings with the social workers and Peter to assess Carly’s living situation, and we used this as an opportunity to spring our latest idea on him. “We want Carly closer to home. And she needs to be in school.”

  We were sitting in the small office Peter shared with one of his colleagues. The offices, a rabbit’s burrow of cubicles and nooks, housed the government-sponsored agency that was responsible for providing services for children who either were at-risk in their homes or required extensive support and intervention. Most cases were dire; many families involved single parents, welfare support, and a heartbreaking list of dysfunctions and catastrophes. We were an anomaly.

  We were three relatively well-heeled families with good homes and good jobs. It would have been well within Peter’s rights to show us the door and call us ingrates. Each of our three children had private rooms at a well-run group facility. Because of the government’s philosophy that keeping children home was the first priority, there were limited facilities to support kids like ours. And those that got in were the province’s most tragic cases. But we wanted more. While we were constantly pushing for better services for our kids, we were critically aware that our kids already had it pretty good. More than a few times I caught sidelong glances between social workers and administrators as we requested more funding, more services, and better settings over the years. I knew what they were thinking; it wasn’t subtle.
Rather than being cowed by embarrassment, Tammy and I chose to think of ourselves as Carly’s advocates. “Why doesn’t she deserve more?” we reasoned. Anything we asked for was to improve her quality of life.

  “We want to open our own group home,” our friend Rebecca told Peter. On the days the other families’ sons were not at Cedarview, they attended Carlton Learning Centre. In fact, both families had been founders of the school. They had helped create something out of nothing, so the prospect of starting a new group home did not seem so far-fetched to them. “Perhaps we could do it in association with either Carlton or Autism Resources,” said Rebecca, referring to the two programs the families were currently using.

  Peter, a man in his fifties with the remnants of an Irish brogue and clear, blue eyes, sat and listened patiently. We had come to expect the litany of excuses that often poured out of the social service workers and bureaucrats we’d encountered over the years. But the request sounded reasonable, if not lofty, and faced with three earnest couples, Peter paid attention. He nodded, dutifully explained all the hurdles we’d have to overcome, and agreed to help. “But you’ll never get your own license,” he said. “The province stopped writing new licenses for youth facilities.” Peter went on to explain the red tape we’d have to hack our way through to find an alternative. Tape of any color didn’t discourage us given our collective skill at tackling bureaucracy.

  “But I know there’s a group home for intellectually challenged young adults in midtown,” Tammy pointed out. “It’s in a great family neighborhood about ten minutes from us.”

  “That house was licensed about twenty years ago,” Peter interrupted. “There are no houses in those kinds of neighborhoods anymore.” He wasn’t being obstinate, but wanted us to lower our expectations. We would not be creating a group home in the rarified air of an affluent or even middle-class urban setting. Most homes were located on the outskirts of the city or well into the country where real estate prices were more modest and neighbors less troublesome.

  In the coming months we had a series of meetings with various groups with the experience and licenses to run group facilities for children and teens. After meeting several and testing their interest for the task, we found one with the same enthusiasm as Peter. The group, Future Horizons, ran numerous group homes across the city. It was important for us to find someone with not only the horsepower to get a program like this up and running, but the open attitude to allow parents to be involved in its design. Most parents of kids needing residential programs were in crisis themselves. They looked upon any help as a godsend and seldom challenged the form it came in. We weren’t sure if not-for-profit groups were ready for our utopian vision and assertive manner.

  While Dave, FH’s director, began the search for viable residences, Tammy organized a trip to Long Island to meet with the regional director of the Eden II program. Both Peter and Dave joined her, as did Rebecca. The team returned from their two-day tour excited by what they saw. Eden II had been in existence since 1976 and was known as a model of excellence in providing living and education services to young adults and adults living with autism. The facilities were family homes in suburban neighborhoods. Residents each had their own room and participated to the best of their ability in the running of the house. During the day, the younger residents attended either local schools or schools for students with autism. Because the homes were located in the community, families were encouraged to be part of the household.

  Our troupe quickly adapted roles that matched our personalities and skills. Rebecca, who was completing her master’s in education, played the role of ensuring the program met the high standards they had created at Carlton. Ryan, a successful lawyer, had the calm, practical skills to help master the bureaucracy. His wife, Alyssa, was the daughter of two psychologists with a background in supervising residential group facilities. With my business background, I acted as project manager and sought out creative ways to get the house (if we ever found it) renovated and furnished. Tammy was Tammy—smart, connected, uncompromising, and tenacious. Any time a compromise was proffered in order to expedite the program, Tammy fought back. She reasoned that we had compromised enough. “Why should these kids get less because of their disability?” she continuously challenged. “Shouldn’t they get more to help them overcome it?”

  The families met regularly on our own to discuss who would provide training for the house staff. We knew we’d probably have to fight with FH on this issue, as they were accustomed to hiring, training, and maintaining all aspects of their facilities. But they had never run a home exclusively for residents with autism. And with a combined thirty-five years of experience in raising kids with the disorder, we were adamant about having input into the program design.

  Our meetings were about twenty percent business and eighty percent support group. We rotated locations, but it seemed like Rebecca and Edward got an unfair share of hosting responsibility.

  A bottle or two of wine and sushi often accompanied our discussions, which drifted from planning agendas to updates on the progress of our kids. My alcohol consumption increased alarmingly during the months of planning. Alyssa’s mother and father would join us as counsel on the issues of group facilities. Although not always productive or well organized, our meetings allowed us to stay well-bonded as a team. Inevitably, everyone would be assigned a task to focus on until our next love-in.

  “I think we’ve found two options,” Dave said to me somewhat breathlessly one afternoon. “There’s a large home downtown and one out in the eastern suburbs, in Scarborough. Probably our best options.” We were looking for a needle in a haystack. We wanted a house in a good neighborhood that was already licensed. The three families lived somewhat centrally, and it was essential that any location not be in one of the eastern or western suburbs of the city—generally where most of the group homes were located. With traffic, getting to these towns took almost as long as getting up to Cedarview. Carly had already attended respite programs in the far eastern reaches of the city, and Tammy and I wanted to move forward, not back. Ryan and Edward made the trek out to Scarborough one afternoon anyway, as they had boys and felt that a suburban location might offer up more outdoor space for activities.

  “Send me a postcard,” I told them.

  On a chilly fall evening all six of us and representatives from FH met at the second option, a house in Parkdale, a downtown neighborhood that’s been in the process of gentrifying for about fifty years. This would be the meeting where we agreed to proceed with one of the two facilities—or pass on both and hope we’d find something more uptown.

  Dave warned us that if we passed up one of these two opportunities, he could not be sure when or if another alternative would come along. It wasn’t exactly a threat, but we knew that if we didn’t take one of the two imperfect homes, our dream could be delayed by a year or even indefinitely.

  My initial reaction to the downtown location was utter despondency. The house had been used as a group home for many years, and the bruising and battering was evident. It had the unmistakable air of neglect that characterizes publicly funded housing facilities. Tired, worn, and institutional. Currently, there were three residents who would be relocated within the coming months. I tried to look past the bare light bulbs, broken shades on the windows, water-stained ceilings, and cracked walls. It was a large home, enormous really.

  In its day, Parkdale had been a grand neighborhood of large and imposing Victorian mansions. Its being located only minutes from Lake Ontario and the parks that line the shore, and a quick commute to the downtown core, made it an ideal affluent neighborhood. But through the 1960s and 1970s, real estate zoning changes allowed the conversion of many dwellings and apartments into halfway houses for those leaving drug and alcohol rehab. The crime rate in the neighborhood was higher than in the rest of the city, but as one policeman I asked told me, “Mainly petty theft. Addicts looking for their next hit.” Not comforting.

  However, in recent years, due to the explosive
real estate market in Toronto, many neighborhoods had become unaffordable for young professionals and families. Thus, houses like the one we were considering rubbed shoulders with renovated, well-maintained Arts and Crafts and Victorian single-family dwellings. Even on the block on which this house sat, it was not unusual to see a nanny pushing a small child in a stroller down the street past gnarled men sitting in broken lawn chairs on the front stoop of their tenement.

  “Can you really see Carly living here?” Tammy whispered in my ear.

  “I can’t see her living anywhere,” I replied, trying not to lose enthusiasm after so many months of planning.

  We huddled together on a few thrift-store couches in the basement, so as to stay out of the way of the residents and staff upstairs. The parents sat quietly, avoiding each other’s glances. We had hoped for more. We always do.

  Rebecca, the eternal optimist, broke the ice. “I think it can be fab,” she said in her ironic post-hippy slang. “It just needs work. And it’s only a few minutes to Carlton and downtown. You know, we’re downtowners, so this kind of neighborhood doesn’t really bother us.” In fact, it was only fifteen minutes from the Annex, where they lived, but while it was close, it was light-years away. She looked up at her husband, hoping for his nod of agreement. Edward continued to look at his feet. The rest of us could only inhale and sigh.

  “I gotta tell you,” said Dave, “we can let this one go and keep looking. But you’re not going to find anything else in the city. Certainly nothing in a nicer neighborhood,” he reminded us again. “Let’s at least take a look around.”

  We’d come this far and, after looking for four months, we were beggars. We plodded up the narrow, windy stairs, starting our investigation on the third floor. It was a maze of jagged hallways and rooms, but ample space for a few bedrooms and office space for the night staff. “Probably good for the girls’ floor,” Dave said. At least, I thought, the girls would have their own space away from the boys who were even more rough and tumble than Carly.

  I closed my eyes for a moment to imagine my daughter sleeping here. Outside I could hear the traffic of Queen Street, the main thoroughfare just north of the house. Only feet away, through the thick, cracked brick walls, was a halfway house for old, drunk men. From their second-floor porch, they could look down into the paved backyard of what was to be Carly’s new house. My stomach churned and I wondered why we were always in the predicament of making the best of a bad situation.