Carly’s Voice

by Arthur Fleischmann

  Yet, for the next two and a half years, life entered a period of relative stability. Tammy’s cancer was in remission; Taryn and Matthew were doing well at school; john st., the ad agency my partners and I started in 2001, was gaining momentum; and Carly had a routine. On Wednesday or Thursday afternoons Howard would drive Carly up to Cedarview and on Sundays the staff would drive her partway back to a rest stop on the highway where I would meet them. In all of the time she was there, I only went to Cedarview four or five times. By not actually making the drive up, I could imagine myself to be an accomplice but not a felon—and that felt a bit better.

  There were now two other families we knew with children residing at Cedarview on a part-time basis, and the fathers would wait together to meet the kids at the end of the weekend. Seeing my friends Edward and Ryan was a measure of consolation. Edward is a world-renowned classical musician, and Ryan is a successful partner at one of Canada’s largest law firms. I figured if guys of such standing could handle the outsourcing of their children, then I should be able to suck it up, too. The logic was desperately flawed, but I looked for any crevice to stick my toe into. On Sunday afternoons, as the sunlight faded, we’d stand in front of the Tim Hortons drinking coffee and waiting for the dusty van to pull up and dump its contents into our arms.

  “How was the week, kids?” one of us would ask as their sons and my daughter tumbled out. None of them spoke or spoke much, so we never got an answer. We’d get a proper report by phone later from the staff.

  It would have been nice to think the three of them were like peas in a pod, a little tribe of autistic kids living together. The stuff of Disney movies and kids’ novels. One boy was nine, the other sixteen, and Carly in between. But from what I could tell, they barely acknowledged each other’s existence.

  I imagined that Carly was forlorn, scared, and angry about her living situation, though in the early months, she never commented to Barb or Howard about any of these feelings. This was triage, and neither Tammy nor I wanted to probe too deeply into how Carly might feel about this living arrangement, as there were no alternatives we could come up with.

  We engaged Autism Resources, one of Ontario’s top providers of ABA therapy, to oversee Carly’s program. Dr. Marion Walden and her staff managed her program both at Cedarview and at home in an effort to create some structure and continuity in targeting the areas of behavior that were most troublesome for Carly. Autism Resources recruited staff that lived near the facility, and a senior supervisor drove up from Toronto at least once a month for training and staff evaluation. Howard and other staff filled her time in Toronto with activities and academics. We liked the idea of having private staff with Carly for up to eight hours a day. I kind of thought of it as “blasting” Carly with ABA in an effort to see how much progress she could make. It also gave me some peace of mind that our therapists could keep an eye on Carly’s living situation and tell us if they saw anything alarming.

  I tried not to think about the windswept isolation of Cedarview, particularly as the fall closed in with its rainy, gunmetal days. Carly bonded quickly with Mel and Genna, two of the therapists assigned to her, and it was of some comfort that she had two young women whose company she enjoyed. Up to this point, Carly typed only with Barb and Howard, so it was a significant breakthrough to have her typing with her new companions.

  Mel was the senior of the two and took on a role of big sister. We established a few protocols almost immediately. Although the Internet coverage at Cedarview was spotty, we asked Mel to replicate the activity Howard had begun: having Carly instant message me every day or two, whenever I was at my desk during her shift. In addition, we asked Mel to save the conversations and lessons she worked on with Carly, and type in her side of the dialogue as best as possible. It wasn’t only Carly who had been starved of language for eleven years. We all had an insatiable hunger to see everything Carly wrote down, particularly in the early days of her self-expression.

  Carly’s first emails from Cedarview were terse. Her inability to sit for long periods of time without the need to get up and jump around combined with the painstaking pace of her typing meant she could do little more than make simple requests or comments, in simply structured messages. Nevertheless, I felt like I had hit a vein of gold and each email was like a new strike.

  I had come to check my personal email almost as regularly as my professional ones on the off chance Carly would send me a note. That was always more reliable than instant messaging, since in my line of work, I don’t sit still for very long. Any note where the “From” line was accompanied by “Carly Fleischmann” got my immediate attention.

  “I want to go to a movie,” I read in one such message on a Friday morning in late 2006. She had been working with Mel, and they instituted a practice of giving Carly time at the start of each session to just talk about whatever she wanted. “Is Howie coming? I want to see Nanny McPhee,” the note finished.

  If Taryn or Matthew asked me to take them to a movie, I would think nothing of it. I was happy to oblige. However, when this simple request came from Carly, I felt like taking an ad out in the local paper.

  I quickly replied, hoping to catch the two of them still working.

  “Hi Carly. I would love to see Nanny McPhee, but only if we can have lots of popcorn. I will email Howard to come too, okay? Not sure if he is in town or not. See you in a few days. I love you. Xoxo”

  An hour later as I was back at my desk, I noticed another message had come in from Carly’s account.

  “Can we go out for dinner too. How much popcorn can I have. I will be good at the movie but what if its too hard to sit. Will you walk with me in the hallway. How about if I shake my hand that means I need to go out for a walk. Ok? Can I have candy too. I want Howard to come. Taryn and mom and matthew can come too.”

  I fired off a response: “Hi Carly. It’s Dad. I think that’s a great idea to shake your hand when you need to go out at the movie. Maybe you will like the movie so much you will be able to sit for a long time. You can take little breaks though when you need it. We can get a large popcorn to share. Let’s see about the candy. Too much junk food isn’t healthy. You’re doing a great job writing. I hope you will write like this when you are home with us too. It helps us understand what you want.”

  Just after lunch, I noticed she had replied yet again. This was the longest volley of emails I had ever had with either of my daughters. “I want candy too,” she said. “I have not had a lot at cedarview. I have been working for tractor rides and [to watch] ellen. So my tummy is junk free. Ok?”

  I grabbed the phone and called Mel’s cell. “Holy crap! Did she really write all of this?” Carly had full conversations with Howard and Barb, but with me she tended toward short phrases and one-word answers.

  “Yeah, she was really focused,” said Mel. “But when she was done, she started slapping the table and got up to jump around.”

  “Well, give her a big reward. That was amazing. Can you tell her we’ll take her this week?”

  “Carly,” I heard Mel say. “Dad says you can go see a movie when you get home from respite.” Then to me, “I think she smiled.”

  I called Tammy and Howard to share the experience. Later I printed out the email and showed it to some of my colleagues who were aware of the struggles we’d had with Carly over the years, as if I were showing them her Harvard diploma. In the psychological yo-yo of Carly living at Cedarview, this was one of the highs.

  Carly, Tammy, Howard, Taryn, and I went to see a movie sometime the next week. I braced myself, not knowing what to expect. Howard bought a large bucket of popcorn and handed Carly one kernel at a time for the next hour and a half. With only one break out to the hallway to jump around and flap her arms, she made it through the entire movie with noises so controlled, no one around us seemed to notice.

  At home, Howard encouraged Carly to keep up the dialogue. It may seem odd that Carly preferred to talk to me on IM when I wasn’t present rather than speaking with me when
we were together, but I was just happy to have her addressing me directly. I felt as if I had been granted an audience with the queen. Like many parents do, Tammy and I saved all Matthew and Taryn’s schoolwork and art projects in a big bin. In Carly’s case, we saved and catalogued all of our discussions and emails, creating a time capsule of conversations.

  Each of Carly’s notes was like a tiny piece of a puzzle. While I usually have no patience for jigsaws, over the two years that she lived part-time at Cedarview, part-time at home, I eagerly collected the tiny random shards that, like a mosaic, began to form a beautiful picture of my daughter.

  From: Carly Fleischmann

  To: Arthur Fleischmann

  I am going shopping with Howard.

  He said I can make dinner

  I don’t know what to make

  Will you eat my dinner

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Hi dad

  How are you

  I am doingfine

  Why arnt you on msn

  I wantto talk to you

  From: Carly Fleischmann

  To: Arthur Fleischmann

  I want you to take me swimming

  I don’t think colin will and Howard is mean

  Can you take me.

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Hi dad

  I got my hair cut

  Colin made me look funny Howard said

  I saw your website. It is funny

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Howard is so silly

  He made me fill up my pot of water in the bathroom sink

  I am making kraft mac and cheese

  Do you want some

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Hi dad I am talking to you in my room

  I won and got to take my computer to my bed

  I like spelling on my bed

  We have lots of snow here and cars get stuck

  Its so funny the wheels spin and the car does not mve

  I want to go on a snow mobile

  Can we do it

  Willyou go on one

  I thnk it would be fun

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Hi dad what does sassy mean

  Howard said I am sassy in my emails

  Is that a good thing

  Do you want to talk to me

  Cheeky means your cheeks get all red

  Like when matthew sees a girl

  Just joiking

  That was being cheeky, right

  Im not that dumb

  Even though people think I am

  But I will show them

  I want to beat matthew in connect four tonight

  I will win.

  From: Carly Fleischmann

  To: Arthur Fleischmann

  I don’t know what to do when I come home

  I looked at black creek pioneer village because I want to walk around

  It looks like fun

  I saw go karting too but you drive to slow and mom wont drive

  I sent pop pop a letter.

  I want him to drive

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Joanne said Julie [Howard’s wife] is going to pop Can we go see the baby on Sunday

  Is Howard going to come with the baby to the house

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Why did Julie not have her baby yet

  Joanne said she was going to have it

  When is her baby coming

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Why hasn’t Howards baby come

  Does he know that he’s late

  Just kidding

  From: Carly Fleischmann

  To: Arthur Fleischmann What are we doing on Sunday

  Can we go to the science center

  I want to go with you

  Can we see Howards baby

  From: Carly Fleischmann

  To: Arthur Fleischmann

  Hi dad

  When do I get to see you

  I miss you

  Cant wait till you come home

  Love Carly

  On and on they went. My daughter likes outings. I never really knew that. Carly has a sense of humor. A sense of irony. And a sense of self-esteem. What else would I learn about my daughter? I wondered.

  Barb and Howard were encouraging us to converse using instant messaging. “I want Carly to have the opportunity to voice her opinion,” Barb told Tammy and me. “I know it’s so slow, but give her the chance whenever you can.”

  “Well, when I’m at work, Howard, you can just have Carly log on. We can IM whenever I’m at my desk.” Her typing was sufficiently slow that I could multitask, often holding a meeting or a phone conversation at my desk while she methodically tapped out characters that became words, words that became revelations.

  One day at work I received the following email. “whats a interview?” she asked. Carly would sometimes start a dialogue with a question, but there were times I often felt like I was being dropped into the middle of a foreign film—I could understand some of the random words but felt like I was grasping for comprehension of the greater context. She strove for efficiency in typing given the enormity of the effort. I logged into instant messaging to practice live conversation, as Barb had suggested.

  (4:08:54 PM) dad says:

  Hi Carly, are you there now?

  i will tell you about an interview.

  (4:12:56 PM) Carly says:

  what is it

  (4:13:43 PM) dad says:

  hi. an interview is when you want to get into a school or get a job, you have a meeting with the person who is in charge. you tell them about yourself and why you believe you should be allowed to attend the school. where do you want to interview?

  (4:15:40 PM) Carly says:

  can i spell in the interview

  (4:15:45 PM) dad says:

  Yes. of course.

  (4:17:58 PM) Carly says:

  Howard said he can get mee in to work at a baggle [bagel] store

  (4:18:09 PM) dad says:

  oh. that’s a great idea!

  i think we should speak with Claire [Carly’s senior ABA program director] about adding some cooking exercises into your daily programs. and at Cedarview too!

  (4:20:06 PM) Carly says:

  when the store is closed

  (4:20:27 PM) dad says:

  you mean to work there making bagels when the store is not open?

  (4:22:06 PM) Carly says:

  yes to try it

  (4:24:19 PM) Carly says:

  but i need to have a interview

  (4:24:32 PM) dad says:

  okay. well dont worry. they will ask you questions and you will need to answer them. they will ask you things like: why do you want to make bagels?

  (4:27:04 PM) Carly says:

  because it will be fun

  (4:29:20 PM) dad says:

  they may ask you what you would like to do at the bagel store?

  (4:32:06 PM) Carly says:

  make lots of baggles

  (4:32:17 PM) dad says:

  what kind of bagels are your favourite?

  (4:34:26 PM) Carly says:

  with black things on top

  (4:35:58 PM) dad says:

  those are called poppy seeds. they might ask you why you think you would be a good person to hire for the bagel store.

  (4:37:51 PM) Carly says:

  i like poppy seed what do i say

  (4:40:17 PM) dad says:

  i think you would tell them that you are a hard worker. and you are very honest. and they should give you a chance to show how you would be a good employee!

  (4:47:06 PM) Carly says:

  Howard says ineed to work on alot of things

  (4:47:
31 PM) dad says:

  well, that’s true. you have to be able to stay focused. and follow directions. but if you really want to do this, i think you can learn. you are very smart, Carly.

  (4:55:54 PM) Carly says:

  Howard said Claire can give me a interview

  (4:56:26 PM) dad says:

  you mean she can help you learn how to do an interview?

  (5:03:42 PM) Carly says:

  yes

  (5:04:01 PM) dad says:

  that would be great! and you could start practicing working in the kitchen at home and at Cedarview. if you could cook for me, what would you make? bagels??

  (5:12:29 PM) Carly says:

  can we go to Great Wolf Lodge to swim

  The pacing of our conversations was slow and clumsy, as if passing through an interpreter. I wasn’t always sure I was keeping up with her, or her with me. I would just be getting into the rhythm, and Carly would veer in a new direction. In this case, we went down the path of discussing a family trip to an indoor water park and hotel that was popular with kids. Parents who were less keen to run through the tepid water appreciated the hospitality of the hotel, which served alcohol in the lounges overlooking the pools.

  By the summer of 2007, Carly had been shuttling between home and Cedarview for about nine months. I relied on these sometimes-terse conversations to get to know Carly, despite our physical separation. Although I deeply appreciated the fledgling connection forming between us through words, I nevertheless found the abruptness of how conversations started and ended, how some of my queries would go unanswered, jarring. Midconversation, it was not unusual for Carly to type “I am done,” crisply ending the exchange. Manners were not something worth expending effort on.

  (10:47:05 AM) Carly says:

  you never come get me

  (10:47:33 AM) dad says:

  Hi Carly. i am working tomorrow. but mom isn’t so she will come get you in the afternoon. think about what you want to do at home this weekend. maybe swim?

  (10:48:30 AM) Carly says:

  swim

  (10:48:43 AM) dad says:

  good. i think the weather will be nice. Howard wants to come by and see you at home tomorrow. is that okay?

  (10:54:01 AM) Carly says:

  i need a cheesie

  (10:54:28 AM) dad says:

  well, you’re writing for me, so i think you deserve a cheesie. ask for one.