Harper Lee Heffley

Harper Lee Heffley – Kentucky
Interview by Inspiring Teens
Nomination by Kendra Heffley
Photography by Jim Tincher Photography
Issue 40 of Inspiring Teens Magazine
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​The Nomination: Harper Lee Heffley is an inspiration to all she meets. Harper was diagnosed with Tourette Syndrome at 8 years old. Her symptoms began long before that, but as her mother, I did not understand what was happening. In my search of an answer, TS, came up in a google search when putting in her symptoms and we went on the journey of diagnosis and treatment. She is now 17 and is thriving.
She is a National Teen Ambassador for the Tourette Association of America and goes to Washington D.C. each year in March to Rally for others living with Tourette. She speaks confidently and passionately for a cause that effects 1 out of every 160 children between the ages of 5-17, about 1/2 go undiagnosed. It is her mission to help get more people diagnosed sooner and get the medical treatment they need and to continue standing up for those with disabilities. She is an inspiring teen and I look forward to the future as she and other inspiring young men and women make a difference in their community and our world.

Photography by a friend

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Tell us about Tourette Syndrome. What is it and how does it affect you?
Tourette Syndrome is a neurological disorder that affects how my brain works. Since my brain does not work the same as other people’s, neither does my body. I often cannot control the movements and sounds my own body makes. I often will twitch my neck and my head, snap my fingers, or make squealing noises uncontrollably. Tourette’s for me also comes with other co-occurring conditions like, OCD, ADHD and Anxiety. Tourette’s is not the same for everyone. It is different for all of us. It is a silent struggle for some of us because some may think we are being over dramatic or are just hard to handle, but the struggle goes deeper than that.

How did you apply for the TS Ambassador for the Tourette Association of America and what does the role entail?
When I was younger, I felt like I was all alone because I knew no one else with Tourette. I barely understood what Tourette’s even was and my parents did not quite know either. My mom had reached out to a family friend who had a cousin with TS. She came over and met with me and she helped me understand that I was not alone and there are many other people with this disorder. Then when I became a teenager my mom found out there was an ambassador position open in KY for the Tourette Association of America, here I could be an inspiration to others. It required that I write and essay and apply online. Once my essay was accepted, I had a phone interview. I was excited to get the news that I was selected. I have had the opportunity as an ambassador to go to Washington D.C. for the last two years in March. I have had the pleasure to meet with KY congressmen and senators and help them understand the struggles people with TS are faced with and ask for their help by continuing the funding for the Tourette Association which continues research and medical outreach to diagnose and help more people. The most important role that being an ambassador entails is dispelling myths about Tourette syndrome and helping others understand how to be kind to people living with TS.

Photography by Jim Tincher Photography

How do you advocate for others with Tourette Syndrome?
By being a part of the National Teen Ambassador program, it has allowed me to take my advocacy for this disorder all the way to Washington D.C. For the past two years in March, I have traveled to the capital to speak to KY congressman and Senators about what Tourette syndrome is and asking them for their support. I also advocate by posting on social medica to get the word out about TS to a wider audience. I also have spoken to a 3rd grade class to inform them about TS because a boy in the class was diagnosed with it and needed help explaining his situation to his peers and teachers. Helping others to understand and then be kind to others with differences is my passion.

What do you enjoy most about your leadership role in this?
There are many great things about having a leadership role in such an incredible organization. The thing I enjoy most about it is, being able to inspire others. Being able to advocate for others who maybe cannot advocate for themselves is important to me. I used to be very shy and embarrassed to even talk about my Tourette. I am proud to have a leadership role where I can talk about struggles I have faced and hopefully inspire others to not be embarrassed of what makes them different and be proud of who they are.

Photography by Jim Tincher Photography

​What is your special connection with special needs people and how does it connect to what you plan on pursuing after high school?
Since middle school, I was very interested in being a student helper in the special needs’ classroom. From my first day, I was inspired by everyone in there and knew I wanted to help those kids. Most special needs kids do not always know how to express how they feel or cannot say what they are thinking. I feel like I had that similar issue when I was first getting diagnosed with Tourette. I feel like I can understand when they are frustrated and know how to help because I have experienced the same frustration. Since helping in the middle school, I took it a step further and started helping with a special needs’ boy at church. When I got in high school I started being a peer teacher in the special needs room and now as a senior I am blessed to be able to work with extraordinary people that I love for half of my school day in Co-Op.

What is the biggest struggle people have with Tourette Syndrome, and how do you want other people to respond?
The biggest struggle people have with Tourette is understanding what it is or being insensitive to it. Most people only view TS as a disorder where you curse or say inappropriate things constantly without control. This is only the case in about 10% of people with TS, the symptom is called coprolalia. Many TV shows and media only portray this one symptom, but Tourette can be many things to those of us living with it. People with Tourette have tics and tics can be anywhere from snapping your fingers to screaming out loud. Tics are different for everyone with Tourette, we are not all the same. The word Tourette’s is often used as a punch line in someone’s joke. I feel like most people do not understand it, so they choose to make fun of it. I would like for people to stop using the word Tourette as a joke or calling us names. I, instead, would like for people to understand what it is and be more kind to anyone that is different than them.

What is the hardest thing you have ever accomplished, and how did you do it?
The hardest thing I have ever accomplished is going through my diagnosis and treatment of Tourette. There were many obstacles when it came to getting diagnosed. Not just realizing I had a mental disorder, but also finding the right treatment and medication for me. Also dealing with bullying and people not understanding my situation. However, I had a supportive family that helped me get through this and accomplish treatment and getting through my diagnosis.

What advice would you give to someone who wants to be where you are today?
The best advice I can give anyone is to always believe that you are capable of anything you set your mind to. When I was younger, I did not completely believe that to be true. I am where I am today because my parents told me I could do anything I set my mind to and they were completely right. Never give up on yourself because there are obstacles in your way. Anything can happen.

Photography by Jim Tincher Photography

Where do you see yourself in 5 years/what are your plans?
In 5 years, I hope to be graduating from Western Kentucky University with a teaching degree. I then hope to start teaching at a high school in a special need’s classroom. For a while now I have known my passion is to help special needs kids and I hope I can inspire them in a classroom one day.

What is your favorite activity or pastime that was not in your nomination?
My favorite pass time is dancing. I have been dancing since I was about 3 years old. I danced on a competitive dance team for a few years and enjoyed every minute of it. I have done several solo dances in competitions and now I am dancing on my high school dance team. I enjoy entertaining a crowd and just going out in front of people and expressing how I feel with dance.

Do you have a hidden talent? What is it?
Art and painting are a hidden talent of mine. I enjoy being creative and drawing or painting for fun. I do not do it often but sometimes I like to just sit down and paint and relax.

If you could publicly present any topic to a group of your peers what would it be and why?
If I could publicly present a topic to my school or a group of my peers, I would do a presentation on Tourette Syndrome. I think it is very important for more people to know the truth about what Tourette is and how people should respect others with differences.

3 things on your bucket list
I have a lot of interesting things I would like to do. The top 3 would be
i. Traveling out of the country to Rome or Greece
ii. Working at Disney World, like my mom did
iii. Going on a family trip to Colorado

Who do you find inspiring?
Many people have inspired me in my life including my parents, my grandparents, teachers and my sister. However, one of my biggest inspirations is my mom. Both of my parents have taught me to be independent and think for myself, and they have made me believe that I can do anything I set my mind to. My mom is someone I can always go to and talk to her about anything. She has gone through hardships in her life that she opens up to me about. She teaches me that no matter who does not support me, I always have my family that will. She teaches me to be kind to everyone I meet and to always have grace. I could never be where I am today without my mom. She has always been understanding to me and everyone she meets. One day I hope I can be half the woman my mom is.

What about you inspire others. Why do you think you are inspiring?
I think what others find inspiring about me is that I am kind to everyone, and I am always willing to help anyone out with what they are going through. I am always understanding of someone else’s situation. I think I am inspiring because I do not use my situation with TS as an excuse but rather as a way to connect and teach others.

How do you keep your schedule straight when you are so busy?
I have always had a busy schedule between school, sports, clubs and social life. I keep it all in order by always planning. I try to make schedules and plans and make time for my friends and family.

Look for Harper Lee in issue 40 of Inspiring Teens Magazine!

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click here for more information on issue 40

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