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.
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.