Carly’s Voice

by Arthur Fleischmann

  “We can try to get Karen to help us get the place renovated and decorated,” Tammy added hopefully. She was referring to a friend who had a successful architectural design company.

  “A designer group home, with hookers and addicts as neighbors. Maybe they’ll come for a barbecue this summer,” I replied sarcastically when Dave was out of earshot. I knew I sounded like a snob, but I was having trouble feeling gratitude just yet. Nevertheless, I forged on, resigned to making this work.

  The rest of the tour revealed little to be excited about except the raw size of the house. It was dark and lopsided, like the bowels of a whaling ship. A few broken and stained (with what?) pieces of institutional furniture, bare floors, dripping faucets, and broken toilets. But it was in Toronto, licensed, and ours for the asking. It wasn’t perfect, but it was about as perfect as you get when you’re dealing with autism.

  Dave agreed to keep looking for a few more weeks while we decided. He would also give the agency that currently ran the house a provisional statement that we were interested, just to get the paperwork going. We pretended we’d think it over, but we knew our decision was made for us. The kids couldn’t stay at Cedarview another year while we kept looking. We were all weary at the thought of another winter of commuting and having our kids living in a different area code. Tammy and I were even more motivated; although Luc and Anton seemed happy enough at the residential program, Carly was miserable.

  “I don’t belong there,” she said to us one night.

  I felt my world cave in. I had fooled myself into believing, since she had never mentioned it, that somehow she didn’t mind living up north for part of the week. We knew she liked Mel and one of the other women who worked with her. She never talked about the other residents, but that wasn’t surprising since she didn’t really have any friends in Toronto, either. Every Wednesday or Thursday when she made the trek up there, and on Sunday afternoons when I met the van at the truck stop to bring her home, my heart constricted and my skin tingled. I was nauseated by the situation. But she didn’t cry or act up, so for months I could fool myself into believing she was happy. Recently, however, Carly made it obvious that this was not the case; I had to face the truth.

  First, she made passing comments in conversations. When it was time to buy a dress for her bat mitzvah, Tammy asked her if she wanted to come out to the store to look for one. “Can you bring it home?” Carly asked.

  “Why?” asked Tammy.

  “I don’t want to leave home ever. I miss it too much.”

  “Oh, Carly. Do you know why you go to Cedarview?”

  “Because I act silly and you want me to be like Taryn but I can’t”

  She later wrote a note to Tammy just before heading up to Cedarview for the weekend: “I am going to Cedarview. I am going to work hard there so I can stay with you.”

  Eventually she was direct in her pleas, and began exploring guilt as a strategy—one in which she became frighteningly proficient.

  “Hi Mom,” she started one Saturday morning on instant messenger.

  “Hi Carly. Dad’s here too. How are you today?”

  “I’m okay. But I want to come home.”

  “I know. You will be home tomorrow and now you stay home until Thursdays.”

  “You come today please. I want to come home.”

  “You will be home in just one day, Carly. We can’t drive up this afternoon. I know you’re disappointed, please understand we are doing our best to get you home soon. What are you doing today? Are you going to the mall?” Tammy tried to redirect her.

  “Oh, I get it. You don’t really want me there.”

  “You know that is not true! That’s called guilt. You are getting good at it. We have to say no lots of times to Matthew and Taryn. They cannot get what they want the minute they want it either.”

  “You can come. You just don’t want to.” “Carly, we can’t. We have to take care of a lot of errands today. Remember, you are home more now; you just need to be patient.”

  “I guess I just, well, wish I were home.”

  “I know. I want you here, too. I miss you and love you so much. You know we are working on this. You have to trust me and just be a bit more patient. Can you do that?”

  “yes. I guess.”

  “Thank you. I know this is hard.”

  “Bye.”

  “Bye for now.”

  It was becoming harder to ignore the fact that Carly was not a silent observer. She began telling her therapists that she was acting out because she hated living away from her family, and using manipulation to force our hand. But when she was home, she still lacked independence, sleep was challenging, and the complexity of managing her life frequently overwhelmed us. We could feel the walls pressing in from both sides.

  After dinner one evening Howard and I were trying to get Carly to write with me directly. He quietly started to edge himself out of the room while Taryn sat across the table doodling on a pad and half paying attention. Tammy was out with a friend for a coffee. We had learned to divide and conquer and grab a few minutes for adult social time whenever we could. “Who’s nice at Cedarview?” I asked Carly innocuously.

  “The cows,” Carly answered. She was learning teen sarcasm and I sensed attitude, even without the telltale facial expressions or voice.

  “Who else?” I asked her, undeterred. I was perhaps prodding at a sore spot, but I was hoping to hear Carly talk about other residents or staff that she enjoyed spending time with.

  “The ostrich too,” she said with no evident sense of irony.

  “Are the people nice at Cedarview?” I attempted to redirect her.

  “They are okay.”

  “What is not nice about the place?” This was not going as I had hoped, but perhaps as I had expected.

  “Being away from you,” she said. Oomph. The plunge of the guilt dagger struck its mark. Of course, a child would rather be at home with her family, but we had become good at deflecting reality. In finding her voice, Carly was able to force us to face up to the truth.

  “I know. It makes me sad too, Carly.”

  “You are going to have to fix me.”

  “You don’t need fixing. You are not broken. You will learn to control yourself better in time. They are helping you learn to do this.” I left out the part that it was also allowing Tammy and me to breathe, but I’m sure she could see through my ruse.

  “but I can’t,” Carly said.

  “You are already doing so much more than you did a few years ago. You are making great progress. Carly, you don’t need fixing. Why do you say that? What do you think needs fixing?”

  “My brain.”

  “You are not the only one like this, Carly. What do you think about the other kids with autism at Cedarview?”

  “They make me feel sad.”

  “Why?” I asked. We had never broached the subject of her peers. Those with autism are supposed to lack social awareness. With this preconceived notion, we didn’t overly concern ourselves with her thoughts about a community or peer group. We had made care and therapy a priority, balancing it with her integration into our family life.

  “They are just like me,” she responded with clarity. “I want to be around normal people. I belong at home.”

  I wasn’t sure what to make of the hypocrisy. Did she not see the contradiction of despising those who suffered the same challenges as she? Maybe it wasn’t so much that she despised them as the fact that they didn’t uplift her. Misery in fact does not like company; it wants nothing more to do with it.

  “Mom and I are working with Luc’s and Anton’s parents to create a house nearby. It would be a lot closer and you could come and go more frequently. You could be home more,” I pushed on with forced optimism in my voice. “But there’s a lot to do first. It’s downtown, not too far from my office. And Shari lives right up the street,” I said, referring to a woman who worked with Carly on occasion. In fact, knowing she lived in the neighborhood made the entire plan palatable.
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  “Why don’t you just let her move home?” Taryn said with a pout, not looking up from her drawing.

  “Please, Taryn, that’s not helping,” I heard my parental voice say, shooting her a caustic glance.

  When Tammy came home, Carly was in bed. I showed her the conversation, which set us back in our usual spin of “what ifs” and “if onlys.” We had debated the merits of trying to convert our garage, a large free-standing structure at the back of our lot, into a small apartment where Carly could sleep with the help of night staff. Or an addition on the house. But it always came back to the same conclusion. We were not equipped to run our own residential facility with the challenges of hiring and training staff. As it was, our life was always one phone call away from being in shambles when a worker called in sick or Howard needed a day off. No, the Parkdale house was our only alternative, and now we needed to get it going as quickly as possible.

  The next day, Tammy called Rebecca and Alyssa to say we were “in” if they were. We were willing to trade in the ostriches and cows for indigent neighbors if only to get Carly back to the city and somewhat closer to home. Maybe we could even find a way to help the neighborhood improve once we got the kids settled in. Now with the parents’ approval, Dave could begin the tiresome process of getting the license transferred to Future Horizons, and we could take on the onerous task of designing the ABA program. During the mudslide of paperwork and red tape, I would look for people to help me get the house renovated and furnished to decent standards as quickly as possible.

  The goal of opening the house within a few months began to look like fantasy. While we had made some connections through our friends to replace the kitchen and bathrooms, drywall the walls gaping with cracks and holes, and redo the worn floors, no one would commit until they were sure FH would receive approval for its plan. FH needed to solicit both funding from one government agency and licensing approval from another. And no one would approve anything until a full education, staffing, and facility improvement plan was complete. The months slowly clicked by, and the Parkdale house remained empty with only the most rudimentary improvements completed. At least water was no longer draining from the third-floor washroom into the living room two floors below.

  On good faith, our friend Karen had designers at her firm draft plans and make a list of items required to improve and furnish the home. She also convinced one of her suppliers to donate furniture for the dining and living rooms. A contact of Tammy’s who owned a major lighting supply company offered to donate lamps and light fixtures. A national home improvement chain offered to come in and renovate the bathrooms and kitchen and provide supplies for us to complete many of the other improvements required to make the crumbling hulk inhabitable. They had initially turned us down, but David Legendre, a young colleague of mine, had a connection that he put me in touch with. As it turned out, the executive David knew also had a child with autism, and our wives were acquainted through the autism community. Through the back door we slipped and, without telling the department that had originally rejected our request for charitable aid, this executive was able to get us supplies and a construction team to do the work.

  While we awaited final license and funding approval, FH and the families came to an agreement on who would provide the training and oversee the development of the ABA protocols and plans for the kids. Nearly a year past our original launch date, it looked like we’d have Parkdale open by the late summer of 2008.

  With spring approaching, we began to make our plans to withdraw our kids from Cedarview. Carly would be attending camp during the summer. In the fall, she would transition to Carlton, the private school for kids with autism that both Luc and Anton attended, and move into Parkdale several nights a week. Far from a perfect life, it had the ring of stability and hope. We allowed ourselves a few moments of self-congratulation for the accomplishment and began the process of getting Carly ready for the transition.

  Excerpt from psychological assessment, 2008:

  Dr. Susan Marcotte, PhD, C. Psych Registered Psychologist

  BACKGROUND AND OBSERVATIONS

  Carly received Botox in January 2006 in her salivary glands for drooling problems. It was reported to be somewhat helpful. Her impulse control problems and obsessive type behaviors have been increasing. Carly has been prescribed a a variety of medications in the past, including Luvox, Ritalin and Celexa, however, Carly’s parents found that these medications generally increased her agitation, constant movement and compulsive and repetitive behaviors. She also was previously taking risperidone due to anxiety and hyperactivity and Chlorpromazine to assist her in falling asleep. Carly is currently on Epival, Clonidine, gabapentin and, on occasion, chloral hydrate to assist in sleep. Overall, Carly’s health is reported to be excellent.

  Carly has been seen through this office since the age of 4 ½ for a psychological assessment. At the time of the assessment, it was felt that Carly was beginning to respond well to the Applied Behavioral Analysis therapy that she was receiving. The results indicated that Carly continued to present with Autism, a mild to moderate developmental disability and as ever communication disorder. In comparison, the results of her most recent assessment at this office in April 2006 indicated average nonverbal ability and receptive language skills. She also continued to present with Autism and a Communication Disorder. The current re-assessment is being completed in order to gain an updated understanding of Carly’s progress to date and to assist with educational program planning, to ensure that she has the opportunity to learn to her fullest potential and manage behaviorally.

  The assessment was completed over four sessions. The Wechsler Intelligence Scale for Children—Fourth Edition was used to assess Carly’s intellectual functioning. Carly’s abilities within the area of visual perceptual reasoning were within the Superior range (91%). These results were stronger in comparison to her previous Average score. She displayed categorical reasoning abilities within the Superior range (91%). Carly also demonstrated Superior range ability to find missing essential details in a picture (91 percentile). Overall, on the perceptual reasoning domain of the WISC-IV, Carly’s performance was within the Superior range and continues to highlight her strong perceptual reasoning abilities despite her challenges. However, it is very important to note that Carly’s behavior issues associated with her Autism often interfered with testing and the completion of each subtest often took a great deal of time.

  The Peabody Individual Achievement Test—Revised was used to evaluate current levels of achievement in the areas of reading comprehension, spelling and general mathematics. On the PIAT-R Carly demonstrated Very Superior reading comprehension skills (98th percentile for age range 13 years, 1 month). Her math problem solving skills for language based problems were within the Superior range (95th percentile for age range +18). She received a High Average score on tasks assessing her Academic knowledge involving Science, Social Studies and Humanities, equivalent to a 16 year, 11 month level.

  Overall, Carly’s behavioral difficulties, such as withdrawal behavior, social problems and atypical behavior, continue to be related to her Autism. . . .

  20

  Saying Good-bye

  Hi Jonnie my name is Carly. My friend Howie told me I should write you. A lot of my friends are in L.A and I don’t get to see them a lot. The friends I have here are really my twin sisters’. They rather play with her then me. Howie said you are really nice and wouldn’t care that I am different then lots of people. I like doing lots of things like swimming, board games and just hanging out. I have to tell you I cant speak out of my mouth but I can spell on my computer to be heard. Howie said that you are going away to camp just like me for the summer. So I just want to know if you would like to hang out together before camp starts. You can email me or tell your mom to call Howie to set something up. Hopefully I will meet you soon

  Your optimistic friend,

  Carly

  Hi Carly!

  I would love to get together with you before I go to
camp! I will have my Mom call Howie as soon as possible!!!! Let me tell you a little bit about myself; I am 13 years old and I have a younger brother and sister. My best friend is moving to L.A. next year, and her name is Carly too!!!!! I love hanging out with friends (just like you) and I also like swimming and dancing. What camp are you going to?

  I can’t wait to meet you!!! You seem like such a caring and interesting person. We can be email pals!

  See you soon,

  Jonnie

  People on the autism spectrum are alleged to lack the social acuity to form deep emotional bonds. This is a gross generalization, in my experience. Underneath Carly’s sometimes-robotic façade she is capable of great empathy and playfulness. In Mel, she found a confidante and buddy to whom she could open up. Carly had complained that there was no one at Cedarview with whom she could connect. None of the other residents spoke in meaningful sentences. Certainly none of them demonstrated the degree of self-awareness, humor, or power of observation that Carly did. We thought of Mel as a godsend, as she would open up to her in the same way she spoke with Howard and Barb at home.

  “Is there anything you want to talk about or ask about?” Mel asked Carly. At Barb’s recommendation, we tried to give Carly many open-ended opportunities to start a conversation—an approach we use years later.

  “I am really down today.”

  “Do you mean you feel sad?”

  “Kind of.”

  “How come?”

  “Really miss mom.”

  “I miss my mom too a lot. But you get to see your mom on Sunday . . .”

  “I know but I’m sad.”

  “Well, did you know that lots of people get sad at this time of year? Do you want to know why?”