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Overcoming Obstacles: Meet Alexis

August 16, 2017

HOW does Alexis hear? With a thirst for adventure, a passport in hand, and bilateral cochlear implants!

All About Me

Hi, I’m Alexis, and I’m 16-years-old. I live in Iowa where I love to raise farm animals, but my true passion is traveling the world and seeing as many new places as possible!

 

Hearing My Way

In preschool, I began to fail my hearing tests and got my first pair of hearing aids. From then, my hearing slowly got worse. Not only was I not hearing, but when I did hear, I didn’t understand. My mom would tell me to do something, but I’d do something else. My friends would say one thing, but I’d hear something different. I was diagnosed with severe auditory neuropathy, a hearing disorder. In fourth grade I became a candidate for cochlear implants because of the neuropathy. Once we knew my first cochlear implant was a success, I received my second implant the following year. It was such a relief to be able to hear people again... and understand them correctly! My cochlear implants have been the best choices I’ve ever made.

 

Overcoming Obstacles

Around the time that I got my cochlear implants, my vision was getting worse, and I was starting to have balance problems. After years of genetic testing and doctors appointments without answers, we convinced my grandma, who also has hearing and vision loss, to go to the eye doctor with me. When the doctor compared our optic nerves, we discovered a genetic link, and I received an of official diagnosis of a genetic mutation (OPA1), resulting in Dominant Optic Atrophy Plus. Unfortunately, for me it causes both progressive hearing loss and progressive vision loss along with balance problems.

 

School Days

Before I was diagnosed with auditory neuropathy and received my cochlear implants, I attended a private school that didn’t provide me with the support I needed. When I didn’t hear or understand, I felt accused of acting out or not following directions. When I couldn’t hear my friends or misunderstood what they said, I felt left out. Luckily, my parents decided it was time for a change. My new school was a huge turning point for me, and I felt like my happy self again. My new teachers were supportive and made me feel included in class. They checked in to make sure I understood. Over the years, my teachers at my new school have gone above and beyond to help me. My science teacher assigned us a research project about hereditary diseases, and allowed me to study my own disorder, DOAplus. This was the first time I ever researched my condition and talked to my classmates about it. Even though it wasn’t easy to find out that there is no known cure for DOAplus and that if I have kids, they will have a 50% chance of having this condition, it was an important step in my understanding and acceptance. Another supportive teacher has been my Physical Education (P.E.) teacher, who gives up his free period every day so that I can do my physical therapy exercises in his of office to help my balance.

 

Travel

After I found out that I was slowly losing my vision, I decided that I wanted to travel as much as I could while I can still see. My family, school, and local community have been so supportive in my journey. With their help, I’ve already experienced so many places, including 4 European countries and more than 15 states in the U.S. One of the best parts has been connecting with other kids from all over the world.

 

 

On the Farm

I have a passion for agriculture (the science of farming) and take classes at school where I
learn to raise chickens and other farm animals. My cow, Storm, is a few months old and drinks from a bottle. I take her to an annual ‘kindergarten forest’ to teach kids about agriculture. I turned this love of agriculture into my own business in the hopes of raising money to travel. At my local Farmer’s Market, I sell vegetables from my garden, homemade treats like my award-winning banana bread, and jewelry.

 

Vision for the Future

I hope to have a career that involves one of my two passions: animals or travel. I want to be a veterinarian because I have a special bond with animals. I also would love to be a travel blogger who gets paid to travel the world and write about new places and experiences. I know that my hearing loss definitely does not and will not stop me from accomplishing my dreams. I may have to go about them differently, but I can do anything I set my mind to; nothing will limit me.

 

Alexis’ Advice

Do everything you can before you can’t do it anymore. You never know what life will throw at you. Just because you have hearing loss or another disability, it does not change your ability to achieve your dreams. Most importantly, I have learned to live by The Golden Rule—treat others how you would like to be treated. You never know what someone is going through in their life. If we all show patience and compassion, the world will be a better place.

 

Know an inspiring teen with hearing loss who should be on our next cover? Let us know! info@hearingourway.com

 

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