Posted September 8, 2021
My name is Rhiannon “Rhys” Arjona, I am 18 years old, I was diagnosed when I was 3 days old with Tetralogy of Fallot and other clear-cut signs of 22q. As for difficulties, I had heart surgery when I was 3 months old since I would turn purple due to my Tetralogy of Fallot, I over heat quite easily since I can’t regulate body temperature well, I have learning differences (I prefer the term differences instead of disabilities) in math, reading, and writing and I also have a lot of back and neck pain.
My school years went relatively well all things considered, I got really lucky and had great support from my teachers and parents. I went to a public school for the first 3 years but then switched since it wasn’t meeting my IEP needs, they would pull me out of class to get help and then they got mad at me for ‘skipping class’, even though 2-3 of my teachers were really wonderful and absolutely amazing. After that I went to a homeschool hybrid public school, so my mom was around the building when I attended classes as well as other students’ parents. I really liked that school and the people there they really helped me overcome my fear of sharing my writings and actually asking for help when I needed it, I was still bad though. I got to be a teacher assistant for some other students with IEPs in a history and Spanish class and found out that I was really good at it.
After I graduated middle school I went to a public high school the transition wasn’t easy and wasn’t pretty to say the least, it took me a lot of time to get used to having that schedule and I had a lot of anxiety around it. When I was a freshman I sometimes had to miss school because of it, but I eventually met some really cool people and teachers who helped me through it.
I joined theater in freshman year and even though I wasn’t able to do a lot of the productions as an actor I always tried to help with work parties and building sets as well as ushering. I learned so much from my high school theater teacher and really owe him a lot for being a safe and fun person to talk to. Theater became my main hobby and pastime in middle school and I am really glad that I stuck with it since I feel like I learned a lot about myself from playing someone else, and understanding how my 22q worked for me in general.
I took Japanese in high school and it was one of the hardest things I did since I have bad phonemic answers but I was persistent about it because my sensei was absolutely amazing. Her class quickly became my absolute favorite to be in. Learning Japanese was hard for me since a lot of the sounds sounded the same, my sensei encouraged me to keep going with it. It took me a lot longer to learn and I failed almost every test the first time I took it but the more I put my mind to it and the longer I did it, things started to make sense, I learned Japanese and am now able to have speaking conversations. I am really proud of myself for sticking with it and continuing to learn. I had to get a lot of extra help from my dad and my sensei but it really all payed off. And I learned more than just Japanese in that class, my sensei helped me see that if you wanted to learn something even if it takes a lot longer than someone else you just have to try and try again, and have to learn from your mistakes to get better at them. That helped me so much in my education journey with having 22q. It’s really how I overcome my challenges.
I don’t really do anything specific to help keep myself healthy; I just try to eat healthy foods.
Some of the accomplishments that I am the most proud of are: Graduating high school with a very good GPA, taking 3 years of Japanese, getting inducted in to the International Thespian Society, getting into my dream college and of course being a big sister to Rhonwen, my 3-year-old sister.
My advice for someone with 22q is know you’re not the only person out there, that there are other people going through the same or similar issues as you. Thinking that you’re alone only makes things worse, but knowing that there are others can help you see the bigger picture. As my Sensei taught me, “If you want to learn something keep going, it might be hard for you but you have to keep moving and learn from your mistakes to get better. It might take longer but it isn’t a race. If you fail a test, try again.” I am going to University of Alaska Southeast, one of my goals is to get a degree in something to do in history. My goals are to work on an animated show with Dan Povedmire and Swampy Marsh, the creators of my two favorite animated TV shows. I would also like to meet Jennifer Lee and Rick Riordan and I would like to work as a writer for Disney one day or become a teacher.
I run an account for 22q advocacy on Tik-Tok called Redfor22q. I make videos sharing my experiences. I also hope to hit 20K someday.