Carly’s Voice (22 page)

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??