Carly’s Voice (46 page)

Tammy and I have been asked how we do it. What keeps us moving forward? Sometimes
it’s just inertia. But we keep sight of Carly’s dream to be accepted. She wants to
live life fully, accomplish great things, and not be pitied. She just wants to be
understood. What else can we do? We get up in the morning when the alarm goes off.
And never accept “no” or “maybe.”

Still, there are days where one step forward is met with two back; I have not yet
returned to the days of peaceful sleeps, awaking in laughter. That is the real price
of autism. It’s not the money required for education, therapy, and staff. Or even
the forgone opportunities. The real cost is the lack of security we feel in our lives
together—as if we are perpetually stepping onto slick ice for the first time, never
sure of our footing and what catastrophe may await us.

It’s been fourteen years since Carly was diagnosed with autism and cognitive impairment.
We were warned that she might never develop abilities beyond those of a child and
would likely spend her life in a group home. Carly has defied most predictions and
lived a life out loud, to paraphrase Émile Zola.

These days, I think more about what’s still to come than what might have been. I tiptoe
into Carly’s room and whisper in her ear as she sleeps, “Everything will work out.
Everything will be fine.” Then closing her door gently, I slip into bed next to Tammy
and pray that I’m right.

The world looks beautiful when we walk with our eyes open.

—Carly, June 11, 2009

(Grammar and spelling edited for clarity.)

Wow, I can’t believe you made it all the way to my chapter of the book! So tell me
the truth. You really didn’t end up reading all of my dad’s boring writing, did you?
There could only be three explanations for how you ended up at the end of the book,
reading this chapter.

Okay, so option one is you bought the book and while you were opening the book, it
fell to the floor and landed on this chapter. THANK GOODNESS FOR YOU.

Or option two, you started reading the book and got so bored that you just wanted
to know how the story ends and you turned to the last chapter and found out who wrote
it. Now you’re so happy that you are not going to put down this book until you finish
this chapter.

Or option three, you read the cover jacket of the book that says my dad will pay you
$100 if you read the whole book from top to bottom and fill out the online quiz.

Ha ha, made you look at the cover jacket.

All joking aside, I love my father and feel so honored to have him share my story
with you, the reader. People have always called me a miracle child, but the truth
is, as you read in the book, my spelling really did not come overnight. It took lots
of hard work, time, and devotion to get where I am today. My father and mother have
always been there for me and thanks to their hard work and dedication to me, I am
able to share with you my inner voice.

So, why do I call my voice my “inner voice”? The truth is ever since I was a young
child, I talked. The words never flowed out of my mouth or came out of my head to
be shared with the outside world, but I talked to myself in my head. The earliest
thought I have of me talking in my head and wanting to share something with the outside
world was when I must have been five or six years old and my nanny was in the kitchen
making some food for Matthew, my brother, and Taryn, my sister. She was asking them
what they wanted to eat. I remember my brother replying first and then my sister yelling
in her idea. I recall telling her in my head that I wanted Kraft Macaroni and Cheese.
My nanny at the time repeated the orders back to my brother and sister but never repeated
mine back to me. I think that was the first time I really realized that my outer voice
wasn’t like Matthew’s or Taryn’s. I remember thinking at that point in time that I
was different. I kind of knew it, I guess, but never really realized it until that
day.

So, as you can see, I always had a voice. It was just inside of me. I would talk to
myself and even reply back to people sometimes even though they couldn’t hear me.
My voice was always special to me even though it was only for me to hear. I remember
thinking that if I could get my inner voice out and share it like Matthew or Taryn,
then maybe I wouldn’t be so different. However, my inner voice stayed inside of me
for over ten years of my life. I do believe we all have an inner voice and it’s just
trying to find its way out.

The day after I realized I was different I also started to see other small differences
between my sister and myself. She would be able to sit in front of a TV for hours.
I couldn’t understand how she was doing it because when I attempted to do that, I
would have information overload.

Sticking a brush through my hair felt like someone was ripping my hair out strand
by strand. Yet my sister would sit and brush her hair like it was no big deal. Occasionally,
my mother or father would have to yell at her to do it, but she was still able to
do it without any problems.

The smell and sensation of different foods would always present problems for me. However,
it never seemed to be an issue for my sister or brother. One of the biggest things
I noticed was that they would always want to be touched or hugged or to roughhouse
with each other. However, any time they tried that with me, it felt so constricting
and overwhelming that I needed them to back off. I could never understand how they
were able to do all those things I couldn’t.

Life at that point started to even seem more different than my siblings. I realized
that I had therapists come to my house every day getting me to do things that seemed
to come so natural to Matthew and Taryn. I remember thinking that I wished that I
would be good at something that they weren’t, so they would have to have a therapist
come in to teach them something. I used to share a room with Taryn, and every morning
she would get dressed all by herself and run into the washroom to brush her teeth,
when she remembered to. I can remember for me every day one of my therapists would
come in and work on how to put on clothes. It felt so hard. I hated the feeling of
taking off my clothes and the feeling of putting
on cold clothes. During one of my sleepless nights I remember turning on the light
in my room and trying to put on my clothes all by myself. I think I forgot my underwear
and couldn’t do up the button to the pants and had my shirt half on as I started to
wander down the stairs to see if I could find some food. I think that’s when my mom
found me and sent me back to bed. She was so tired and didn’t even realize my makeshift
accomplishment.

Later on in life I started to realize that I was taking in information a lot different
than the typical children around me. I always had a hard time understanding what people
were saying. Even as a young child I would only be able to understand one or two words
in a sentence that someone was saying to me. I now realize it wasn’t that I didn’t
understand the words, it was that my brain couldn’t focus directly on the conversation.

Let me break it down for you and set a picture up in your mind like they do on
CSI
and those other TV shows. Picture yourself in a coffee shop with just one other person.
The person starts talking and you are able to focus directly on what they are saying.
For me that is a different case altogether. The woman who brushes along our table
leaves an overpowering scent of perfume and my focus moves. Then the conversation
over my left shoulder from the table behind us comes into play. The rough side on
my left sleeve cuff rubs up and down on my body. That starts to get my attention,
as the whoosh and whistle of the coffee maker blends into different sounds all around
me. The visual of the door opening and shutting in the front of the store completely
consumes me. I have lost the conversation, missing most of what the person in front
of me is talking about. With more scents to smell, more overwhelming visual input
coming in from the coffee shop, and more audio conversation from people talking at
other tables in the room, I find myself only hearing the odd word the person in front
of me has said.

So I know what you are thinking. With all those things going on,
how do I drink my coffee? Just joking. How do I understand what people are saying?
About a year and a half ago I coined a term called
audio filtering
. Lots of people with autism do it and it’s something we learn to do on our own. I
don’t even think doctors, scientists, or psychologists even know we do it.

Audio filtering is hard to master, and some people who audio filter only manage to
use it a little bit in their lives and might not be able to control when they are
doing it. The best way to explain audio filtering is to bring you back into the coffee
shop. Imagine having a DVD remote control programmed in your brain and when the conversation
starts you can pause, slow it down, rewind, or skip things. Now just because you can
do all those things does not mean you understand the conversation. You now have to
be able to pick out and understand everything that is going on around you, including
other conversations, before you start to understand yours.

For lots of people with autism, this can take days weeks, months, and even years.
For those parents, educators, or doctors reading this book, think of one person you
know with autism. Have you ever seen them, in a room, start to laugh or cry or get
mad or even scream for no reason you can pinpoint? The reason you can’t pinpoint it
is because they are audio filtering. I have learned to audio filter a minute to two
minutes after a conversation has started. It’s harder being in a big hall or movie
theater or a stadium where it can take longer and can become very overwhelming at
times.

Let me clarify something. Audio filtering isn’t just for sorting out audio input.
It also helps sort out smells, physical touch, like a rough shirt cuff, and also visual
input. I think audio filtering is ingrained or hardwired into the brains of people
with autism. We just have to figure out how to use it and control it.

Communication was a big goal of mine, but at the same time it was a big goal for everyone
around me. Barb, my speech pathologist, was working on many ways for me to communicate
ever since
I could remember. I recall having popsicle sticks jammed in my mouth and being taught
how to use my hands and fingers to do signs for sign language. It was always hard
and, to tell you the truth, frustrating at times. I can almost picture the first time
I was introduced to using picture symbols. I remember thinking, Wow, I point to a
picture of chips and someone just hands it to me. That, to me, was amazing. The first
time I communicated, I asked for something and I got what I asked for. Now the hard
part I understood, but with everything going on around me how do I duplicate it or
do it again? I took a while to get the hang of it. At first I found it was hard to
stop my impulses to pick other picture symbols that weren’t the ones I needed at the
time. For example, I would want to tell someone that I needed the washroom, but the
chip picture always looked too inviting to ignore.

As the years went on I was introduced to Howie, who would become an important person
to Barb and me. I think Howie, like Barb, always believed I had something important
to say and wanted me to find a way to get it out. Howie and Barb would always come
up with neat ideas for me to communicate. One of the things they came up with was
a big binder that they made me carry around my house and school that had picture symbols
all throughout the pages. The picture symbols didn’t only have pictures on them, they
had words streamed across the top. Those words would lead me to spelling, but that’s
for another paragraph.

I recall Howie asking Barb in my classroom what was the ultimate goal for me to communicate?
Barb turned her head at me and then back at Howie. She began to say, “Carly is six
and for now, I think we need to focus on picture symbols because I think the long-term
goal is to have Carly use a voice output device.”