Carly’s Voice (47 page)

Howie had only worked with me for a couple months at this point and I think he wasn’t
too sure of me, at first, but when Barb mentioned a voice output device, something
must have clicked in
Howie’s head. That day, and for the next weeks and months, Howie pushed picture symbols
over and over again. A lot of my days at school had to do with programs that taught
me the meanings of the symbols or how to use the symbols to express my wants and needs.
I was always good at identifying pictures, but because I wasn’t fully able to audio
filter, I didn’t always understand the full label for the picture.

The way I understand it is, my mind works differently than most people’s. When I see
something, I take a picture of it and it stays in my head. This is why I have trouble
looking at people’s faces. When I look at someone I take over a thousand images of
that person’s face in less than a minute. Now think of my brain as a digital camera.
The more I look at someone’s face, the more pictures I take. Because I take so many
pictures, my brain or, as in my example, the camera gets full. I am no longer able
to process the pictures or images and I am forced to turn away. That is why, for most
people with autism, you will see their eyes wandering or face moving in a different
direction when you are talking to them.

Because of my ability to take pictures of people, objects, and images, the picture
symbols Howie introduced every day stuck in my head. My progress was not slow but
not fast. However, midway through the school year, Howie convinced Barb and the school
board that I was ready for a voice output device. I think the day I got my voice output
device was a big moment in my life, and I did realize how much work and effort I was
going to have to bring to the table. Looking back, I worked over and above what most
children do in a day. Using ABA, Howie and Barb worked on their own program to teach
me how to master the voice output device. From day one, Barb and Howie would only
hold my hand to teach me where the symbols were. Once I learned the location of the
symbols, Barb made sure no one would help or assist me when I used my voice output
device. Even though my fine motor skills prevented me from
holding a pencil, I was always able to point and target images. Barb and Howie wanted
people who were around me to know and to see that I was able to do this all on my
own.

My first voice output device was big and only let me use eight symbols at a time.
Howie made a book with over a hundred symbols and categorized them to put on the voice
output device when I would be in different situations. Wow, to think about it, Howie
had no life. Just joking. He had a girlfriend at the time, who he later married.

A little bit after I got my first voice output device, I was already growing out of
it. My parents, with the guidance of Barb and Howie, ended up getting me a computerized
voice output device, which changed my life. The voice output device had words scrolling
at the top of the symbols. My photographic memory started taking in those images/words.

A couple of years later, Howie and Barb started coming up with a spelling program.
The program was really clever and I recommend it for anyone wanting to teach someone
with autism. They showed me pictures with text and would first get me to match Scrabble
letters to the text. Once I was able to match, I then had to spell the word without
seeing the text. It was all sight learning. There is something I never told Howie
or Barb: I already had over two thousand words in my head that I was just processing
and their program started getting me to understand what to do with those words.

I find it weird, but I have never been asked what was going through my head the first
time I spelled. The truth is, as you probably read in my dad’s chapters, I was feeling
sick that day. Oh wait, I forgot you haven’t read his chapters. So, I was feeling
sick the first time I spelled. Howie pulled me over to Barb and I just felt achy all
over. I remember thinking I didn’t want to use my voice output device, so why are
they making me? I knew Howie wasn’t going to let me go without getting me to say something.
I just wanted them to
know I was not in a good place and then, in my head, I saw the word
help
, a word that had been on the main page of all my voice output devices since the beginning.
I started to spell it:
H E L P.
I then pulled away to lie back on the couch when Howie pulled me back. I think they
were shocked and I, well, I didn’t really process my accomplishment yet. I felt really
nauseated and threw up a little in my mouth when Howie pulled me back to spell. I
was placed in front of the voice output device again and, well, you know, I wrote
“
teeth.
” In my head, I was just trying to think of a word that would describe what just happened
in my mouth. In hindsight, I should have written the word
mouth
, but I was just a kid.

I didn’t fully understand what I had done until a day or two later. It took time for
me to process that part of me, again. I was proud of my accomplishment but did not
know how really big it was. It would open a world for me I really wasn’t sure I wanted
to be in. Don’t get me wrong. The ability to communicate my wants and needs is great;
however, with great abilities come greater expectations.

A month after I started typing, all new and creative programs emerged. I remember
my silly brother Matthew running around my house with a label maker labeling everything.
Howie made me look at every word I walked by. Just to tell you how crazy my brother
and Howie were, they labeled the toilet and every time I sat down, Howie made me point
to the word. It was really crazy but helped me start to audio filter the label with
the word.

As the months went by, I started to get new voice output devices that would help me
showcase my newfound skill. I started using a device called a Lightwriter that made
me feel like I was even more different than everyone else. All my other devices always
piqued people’s interest with all the pictures and their shocking talking ability.
Because of that, I never felt different but with my Light-writer I never got the same
reactions, and I got more strange looks than curious looks. After I kept pushing away
these devices, Howie
looked into getting a computer for me. He found an amazing program called WordQ that
had word prediction and also had the feature of text-to-speech so I could have a conversation
with anyone in a room or around the corner.

Sitting at a computer brought new
and
familiar challenges to me. I have been quoted as saying:
“My body feels like a can of Coke that has been shaken for hours.”
Now sitting down at a table and writing a sentence took all of my concentration and
strength. I would find, after talking for only five minutes, as soon as I would stand
up, it felt like someone opened the can of Coke and I would just explode. I would
have to get out all this built-up energy by jumping, running, and rocking. To look
back at it now, I wonder what my mother and father thought about it. Here I was, a
girl that was now able to spell but freaking out after sitting so calmly?

More challenges always seemed to present themselves. I had a hard time using both
hands and if I would bring my left hand up to help me type I found it got in trouble.
So I would concentrate not only on typing but on keeping my hand down and out of trouble.

My ability to keep the amount of focus and concentration I needed to type was always
a challenge. There were times I would just refuse to type for days and months. I never
thought of it as giving up or quitting but more of taking a small break or rest. I
know what you’re thinking. How would I express myself or get my needs met if I couldn’t
talk? The fact of the matter is I found not talking a challenge, but I think it was
also easier in ways. I was able just to run in to the kitchen and grab what I wanted
or just point to something and people were so glad I pointed, they would just give
it to me.

If I had to pick a point in my life that really made me excited to be able to type
it would have been my bat mitzvah. My sister had her bat mitzvah speech all ready
to go and no one really knows this, but I had mine made up as well. I write all my
work in my head and regurgitate it onto the screen. I even knew who I wanted to read
my
speech for me. At one of my sessions with Barb and Howie, I told them my goal. I told
them I wanted Ellen DeGeneres to be my voice. Barb was shocked, and Howie said, “Okay,
let’s talk to your parents and see what we can do.”

I started to write Ellen a letter and every time my finger hit the keys, I got more
excited. Like I said before, I had the whole speech written in my head, but getting
it on the computer seemed to take forever.

A couple of weeks before my bat mitzvah, my life changed forever. All my hard work,
all the hard challenges I had to overcome to write my long speech felt worth it. My
mother and father sat me down and told me that Ellen saw my letter and agreed to read
it. There is no greater feeling than knowing you can do something that may have seemed
impossible. From that day forward, I welcomed challenges.

My life had changed. I started to write on social media websites and writing my own
blog. I felt that I needed challenges in my life so I challenged myself to be on
Larry King Live
and to even be invited to a conference called the Annual International Technology
& Persons with Disabilities Conference at CSUN in San Diego. These challenges kept
me thinking and knowing that I am capable of doing anything and everything I set my
mind to. Well, I mean of course, my whole life I was told I wouldn’t talk and here
is my voice talking to you.

My recent challenge has had to do with me attending a typical high school. In case
you’re wondering if I succeeded with that goal, all I can tell you is the principal
has chased me around the school and I broke the captain of the football team’s nose.
Just joking. I made lots of friends this year and had my first real party at my house.
I even went out to a movie with a group of friends and didn’t need a worker. As for
schoolwork, I got A’s on a lot of my assignments and had a fun time learning.

A wise man once told me that a seed needs love and nurturing to become a flower and
a caterpillar needs time and persistence to become a beautiful butterfly. So that’s
why I say everyone has an inner voice that is waiting to come out and all they need
is you.

Thank you for reading my dad’s book about my life, and I promise my book, written
by me, will come out soon so you don’t have to read my dad’s chapters. Just joking.

Or am I?

I’m not sure what to make of the fact that I’ve gotten to know my daughter more by
conversations she’s had with others, answers to questions posed by strangers, and
her blog posts than by any direct dialogue. I guess I’m just grateful for the opportunity,
however it comes. What I am certain of is that even at the young age of sixteen, Carly
has already had a profound impact on those affected by autism.

Of the thousands of questions, words of support, and comments from Carly’s followers
and readers through various social media channels, there seem to be several recurring
themes. It has been Carly’s mission to help debunk the myths and share the truths
about life with autism. Here are some of the observations I thought you might find
compelling.

When it comes to the unusual behaviors exhibited by many who have autism, sometimes
there is a method to their madness.

Q: dillon @CarlysVoice
Hi Carly, i have written to you before, My question for you is this, My children have
often overheard people say to us, oh you poor dears, we dont feel that way we feel
very lucky. How do you as one who has autism feel when you hear this? I would like
to have an idea how our boys feel at these times, as they dont speak but thru sign.
A:
I hate when that happens my moms friend just had a tragic accident happen and she
had one of her two autistic sons pass away and people told her its for the best. It’s
really sad the way society views the importance of life just because he was different
does not mean he did not have any importance or any things to teach us. We all have
feelings even if we don’t often show it at times.

Q: kevin @CarlysVoice
I have a 16 yrs who has a fascination with cards, numbering as like the clock on a
VCR. Do you have any thoughts why?

A:
Repetition is always a good way for us to stim. Visually stims like seeing numbers
& repeating it in our head/out loud are always great.

Q: SgtMgt @CarlysVoice
My 6yrold son gets sad and cries often, & I cant figure out why. Do U have any suggestions
how I can figure out what is wrong?
A:
It could be many things. Is he on any medication I have had lots of extreme mood
changes like crying and being angry for no reason. It was because of the medication
It could be things that are happening earlier in the day or days that he is just processing
through now.