Interview with staff writer Tyla Jenson for the Grizzly Growl, the official student voice of Copper Hills High School. Although the interview was never published in their paper, we wanted to share the discussion here. Natalie attended school with Tyla at RSL Academy High School before Natalie graduated, and Tyla transferred to CHHS.
Is it okay if i record this interview?
Yes, of course! Would you mind if I also posted about this interview on my podcast site? I would love to get your picture for the website article, or we could meet for a picture together.
How old are you?
I’m 19 years old.
What’s your life story?
That’s a long answer, but here goes. I was born in California, and moved to Utah when I was only 3 months old. At the time we moved I was diagnosed with Cerebral Palsy and Epilepsy from an inutero stroke. I was 8 months old when I started having seizures and got my diagnosis. I grew up having 5 to 20 seizures every day, even though I took medication for the seizures, it wasn’t effective. I was on a special ketogenic diet that helped reduce the number of seizures, but it didn’t always work. I had to wear hand and foot braces for my left side that was paralyzed from the stroke I had.
When I was 10 years old my seizures changed and got worse. I would stop breathing and turn blue. When the seizure was over I didn’t know where I was, and I didn’t recognize people until things came back. My heart would race and I was scared at times because I didn’t know what happened. My mom and dad decided then that I needed to have a brain surgery – it was the last thing they could do to control the seizures. So on July 26, 2011 I went to Primary Childrens Hospital where I had a brain surgery, and that day was the last day that I had a seizure. I have been seizure free for almost 9 years now. My parents call July 26 my second birthday because it’s when I got my life back.
Since the brain surgery things are more normal. I still have paralysis on my left side, and I have IDD, but things are much better. I am a Global Messenger and athlete for Special Olympics Utah. I have gone to Seattle, Washington for the Summer Olympics and to Abu Dhabi in the United Arab Emirates for the 2019 World Games, where I represented Utah and the United States with my partner Katie. Katie and I are unified partners and youth leaders.
I have been an advocate for kids and adults with disabilities like me, and I am also an advocate for people who have seizures. We really need research to help cure epilepsy. Some people who have seizures could end up dying from one – and I don’t want families to go through a loss like that. Every time that I see something like that it just sucks and makes me want to cry.
My family does a lot of volunteering for charities. We volunteer at the Millie’s Princess 5k, and we donate gifts for patients at Primary Children’s Hospital because I spent time there as a patient and I know what it’s like there. My family started the Purple Dash 5k for Epilepsy, and we fundraise for Special Olympics and do the Best Buddies Friendship Walk.
How do you find the positive in things when the world could be falling apart?
It’s important to remember that we are all struggling at times. I know it can be hard because it has been really hard for me at times too. But I know that my connections with others help me, and those connections can help them too. We all need to be able to ask for help when we need it, and I try to help others when I know they aren’t feeling okay. When I was younger, it was really important for me to be out doing things with other kids, like playing soccer because I love soccer. In school it was important to connect with other students, and with my teachers. I wanted to do the same things, and I did the same things as everyone else, and they understood the ways that I was different – like I could have a seizure, and if that happened my teacher or my friends knew what to do. But I’m the same in a lot of ways too. I love music and movies and art. I love soccer and cycling. I like to laugh.
There are times when things get hard. It’s okay to feel sad or frustrated. That’s the time to reach out, or to get engaged. Find a way to change someone else’s world and it will change yours too.
What is your podcast about?
We host a podcast called the KatnNat Unified Nation Podcast where we talk to people about the Special Olympics inclusion revolution, and about what it means to be part of the spirit and heart of a unified generation. You can find us at katnnat.com, or on social media by searching for KatnNat Podcast. We have reached California, Hawaii, Illinois, New York, Utah and Washington. We have interviewed Tim Shriver, president of Special Olympics. We interviewed Stephanie McMahon from WWE, and we have been part of Humans Of New York too. We’re a pretty big deal, LOL .
Our podcasts are posted at http://katnnat.com/wp/category/podcasts/ but you can find more interviews and articles at http://katnnat.com, and our media listings are at http://katnnat.com/wp/press/
If you could say anything to the kids at my school right now what would you say?
You go to Copper Hills High School now, right? Go Grizzlies! I have some really good friends who went to Copper Hills. What I would say though, is that everyone can learn to be more accepting of the people around them. Take time to get to know someone who you see every day, but don’t really know. Being inclusive isn’t just about accepting that people are different, or by being around people who are different. It’s about understanding, and engaging. It’s including people who you met and thought were different at first, but found what you have in common too. It’s letting people be a part of what you love, and letting them share what they love too. I would love to see Copper Hills add a Diversity Officer to the SBO – someone who can represent inclusion and lead student activities for Spread the Word campaign, or speak to assemblies about inclusion.
Anything else you want to add?
Best Buddies Utah is hosting a Friendship Walk that’s coming up on June 20th. It’s a virtual walk, but you can join me and Katie as part of our team. We would love to have Copper Hills join us and represent inclusion in the Jordan District!