Thanks For Being My Friend
I have made amazing friendships on my Apraxia Adventure.
There are individuals I consider my Apraxia Guardian Angels. They are people who see and have only seen me for who I am, not my Apraxia nor my 'funny accent.' I'm sure your child has or will meet their own Angels. I was blessed to have met one of my first Angels (outside of family members) when I was a non-verbal five year old.
Her name is Nicole and she's been my best friend through practically my entire Apraxia Adventure.
Eighteen years later, she is generous enough to share her perspective in being my friend and what it was like given my Apraxia.
Please enjoy.
Please enjoy.
I’ve known Alyson since I was
four years old. When we first became friends she did not speak very much, but
that didn’t matter because I always knew what she meant. I think I was drawn to
her because she was living in her own little world that existed in parallel to
everyone else’s. She had to. She created her own reality and it was a pleasure
to escape the world and join hers for a while.
As she got older, her speech
improved tremendously. She still talked differently, but now people knew what
she was saying. I personally did not notice this, as our relationship did not
change. We still played Barbie’s for hours, and when we had sleepovers I would
fall asleep laughing to her ridiculous, make-believe stories using the names of
boys we had crushes on and girls who were mean to us.
I was always protective of
her, but we were in different grades so I did not see much of her at school. I think a lot of people knew not to say
anything to her in front of me. I have a distinct memory of being in 4th
grade talking to Aly on the playground. When I was walking back to the kickball
court, two boys were behind me and one muttered, “How did she understand
anything she said?” As I turned around, the other boy said, “Shhhh, that’s her
best friend and she runs faster than everyone here,” and they bolted in the
other direction. I was probably naïve to the amount of teasing that occurred
because I witnessed so little of it. I can’t really imagine the meanness she
faced or the judgment she must have felt from the kids at school. All I know is
she never seemed too phased by it. I know it was difficult and tiring at times,
but the world Aly created at a young age was the world she let define her, and
I can guarantee the opinions of dumb kids at school were not part of that
definition. She became a cheerleader in middle school, excelled tremendously
both academically and socially in high school, and kicked-butt in college. But
this was not an accident; this was a choice that she made with fierce
determination accompanied with a twisted sense of humor. She made an active decision
to take ownership of her Apraxia and fight through whatever weird societal
stigma is placed on people who don’t fit a perfect mold.
The reality is that everyone
has issues that they deal with in life. Everyone has a stack of problems that
they must face every time they wake up. However, what makes something like
Apraxia different is that you have to wear it on your sleeve. Most people can
cover up their issues with a smile and some small talk, but every person that
Aly speaks to knows there is something different. This could make it so much
more defeating. People in my life only know about my issues if I am close to
them, or if I have divulged that information to them. Apraxia, like many other
struggles, is something that must be dealt with everyday. What makes Apraxia
unique is that there is always an audience. I am not saying that Apraxia is
anything “wrong” or anything to be ashamed of. Because it is not. What I am
saying is that it makes Alyson Taylor different, and on days when Aly does not
want to appear different, she has no choice.
I can honestly say that I
don’t hear her “accent” when she speaks. I have known her most of my life and
all I hear are the content of her words. However, I know that is not the case
for everyone, because I am often annoyed when she has an interaction with a
stranger. Often the first word out of a person’s mouth is a comment about her
speech instead of an acknowledgement of what she was trying to say.
“Where are you from?”
“I’ve never heard a voice
like yours.”
“Do you mind explaining why
you talk like that?”
How annoying would that be?
Having to explain something that is innately you. This always seemed to bother
me more than it bothered her. She loved to say that it was a British accent, or
that she was from Australia, and sometimes she even took pride in explaining to
someone what Apraxia was. I was always in awe of this. How was she always so
poised with these strangers? I wanted to beat their faces in…. She’s from
Burbank, California; can you just do your job and seat us at our table? But no,
Alyson doesn’t mind. Alyson owns it. She’s not afraid of your questions or your
silly comments. She is proud. She is brave. This journey has been hers to carve
and she has made it incredible.
Although there have been less
than great moments, she has grown a garden on land they said was infertile. I
remember going with her to speech therapy in early elementary school. Sometimes
she would come home crying because she hadn’t improved as much as was expected.
But the tears never lasted. Moments later she would brag about the peanut
butter they used to help train her tongue when sounding out a word. Then she
was back the next week, ready to take on the next challenge. Never defeated. This
was a pattern she has continued throughout her life. Limit the dwelling, find
the silver lining, and keep going.
Being Alyson’s friend was
never hard or weird because she has Apraxia. Being Alyson’s friend is fun and
exciting and exhausting and confusing because she is complicated and smart and
driven and fearless.
I wish I had an answer for
anyone struggling with Apraxia. I wish I had an answer for anyone struggling at
all. All I know is that you should keep pushing. I’ve loved Aly since before
she could put a sentence together, and she’s loved me through plenty of my own
battles. Just put one foot in front of the other and take pride in who you are.
The right people will see you. Remember that one setback does not define you,
and don’t forget to look around. Your fan club is waiting.