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Elina Csapo Apraxia Interview - Young Able Voices

Hello,


I'm Elina Csapo, and I use she/her pronouns. I'm currently 17 years old, entering my senior year at The Hun School of Princeton. My primary job is being a student-athlete, however, my passion is Young Able Voices (YAV), a peer-to-peer support group aimed at connecting kids and teens with hidden disabilities to one another, I founded YAV approximately 15 months ago in July of 2022. I also juggle a couple of part-time jobs, allowing me to contribute to my expenses. I work at the Front Desk of the Holiday Inn Express in my town, and I also babysat and pet-sit.


was adopted at 2 ½ years old from Russia. When I came home, my mom had me checked out by many doctors and specialists. I was also in a program called early intervention. They diagnosed me with a speech disorder. However, I was diagnosed with Childhood Apraxia of Speech (CAS), at four years old by a private speech and language pathologist, SLP.


Growing up, It definitely was hard to make friends, and it was hard to join groups and activities as I was seen as that girl who no one could understand. You see, my expressive language intelligibility was about 50 percent. I definitely was a victim of bullying and unkind words. The most common phrases I would hear were, "Could you just speak English?" And "You sound so weird, no one can understand you." Of course, this hurt; however, I never thought of myself as the weird girl. I knew I wasn't "normal," but I was unique, and for a long time, that worked for me. Even though many didn't try to hear my voice, those I did have in my life, cherished and supported me, and they worked to hear my voice.


Getting to where I am today took a lot of patience but also a lot of grit. When I was younger, my mom was called into my school to meet with the literacy specialist. Upon meeting this "expert," my mom was advised that I would likely never learn to read. At an IEP meeting a week or two later, my mom was advised that my prognosis was to be barely a C student. After these meetings, my mom cried for weeks until she realized that however well-meaning these "experts" were, they didn't know me, and they were not going to create my destiny. Seriously, who has the audacity to say that a 5-year-old won't be capable of achieving something as important as reading, or anything really? Well, my Mom stopped crying and then began to teach me how to read, assigning me daily "mommy homework” after my regular homework. The mommy homework was intentionally challenging, as my mom had started the process of building my resiliency and, with it, my confidence. She would focus on my academic strengths and then my weaknesses. Each day before I went to school, she would remind me I was smart, and we celebrated every accomplishment, no matter how small.


Apraxia is like navigating a labyrinth where unkind words, mockery, and mistreatment lurk, testing your determination and stamina. I have always felt my whole life that I had to prove to everyone that I belonged. I would never allow myself to be defined by my Apraxia as I know I am so much more capable than what people think I am. However, while doing that, I was secretly trying to pretend my Apraxia didn't exist, which definitely did not work for me. However, when I finally accepted my Apraxia and stopped trying to hide it, my life changed. So many new opportunities presented themself to me. My journey of accepting my Apraxia has led me to:


● Create Young Able Voices - my nonprofit (status pending)


● Host small assemblies for speech students in schools,


● Attend and present at an Apraxia teen meetup,


● Speak at an Apraxia national conference.


● Connect at summer camps.


● Doing a TEDx talk this October.


● Additionally, the coolest benefit is being able to meet amazing people along the way.


One of my biggest fears was when I told people about my Apraxia, they would think of me as less than. Especially when I say it's a neurological speech disorder. Many believe that having CAS means we are not intelligent. I try to dispel this myth by engaging those people in thoughtful conversations, and hopefully, they will realize that my intelligence should not be questioned. However, the biggest misconception I have received is that most people believe I have an accent. Many people ask when they meet me, "Oh, where are you from?" or "Nice accent." This is hard for me to explain to people as I am from a different place, but when I try to say yes, I’m from Russia, but my speech sounds different because of my speech disorder, they fight me on it… I know, crazy. Yet, I try not to let this affect me as I know they don't know any better. This is the same approach I take with some of the mistreatment I had when I was younger.


It's a long story of how I created Young Able Voices. However, it started during the pandemic after I was told by my middle school speech teacher in 8th grade, that I had "graduated speech class." Graduating from speech has always been one of my biggest dreams. However, when it came, I didn't feel that I was done with speech. However, who am I to argue with "experts." Yet, near the end of my freshmen year, I noticed that I was having trouble saying certain sounds and recalling them. Luckily, one of my old SLPs had started her own speech therapy practice. While seeing her again, I realized that Apraxia is the gift that keeps on giving and that it will always be a lifelong struggle. Frustrated with this new realization, I looked for a support group for teens with Apraxia or anyone with a hidden disability. I really wanted to have a group of people who understood firsthand my challenges. I figured I could find one, as my mom had a few Facebook support groups for parents of children with Apraxia. I figured there must be one for kids or teens who are going through the same struggle. Yet, I found none. I was bummed, but let it go, for a bit anyway.


So, I was going on my first date at the end of my sophomore year when I realized I couldn't say my date's name. The name had two r's in it, and r's are my nemesis. I called my speech teacher up, and we practiced his name for ten minutes. As a thank you, my mom sent her a piece I had written about Apraxia for my school literary magazine, which they had not published. Finding this piece impactful, Miss Lori then sent it to all her clients, and within three hours while still on my date, I received an email from a teacher at my school wanting to chat about her 4-year-old daughter, who was recently diagnosed with CAS. She was concerned about what her future might look like. That night, after my date, I told my mom someone needed to build a community that helps kids and teens with CAS, or any hidden disability, to help them know that their future is bright and that there is hope for them. A place where they can feel heard and know that they are not alone. My mom gave me her look. So, in July of 2022, I started Young Able Voices, a peer-to-peer support group for kids and teens with hidden disabilities to never feel isolated again.


My hope is that kids and teens realize from Young Able Voices that you don't need to struggle alone; there are others who are facing similar issues. It's better to go through it with a group than by yourself. Just like practicing speech class with a bunch of people. Even though it might seem like Apraxia is a small population of people, not as many know all of these resources are out there. I just learned about many of the Apraxia resources just this year!


To learn more about Young Able Voices go to www.youngabelvoices.com Follow Young Able Voices on social media!

Facebook: @YoungAbleVoices

Instagram: @young_able_voices

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