Brad interviews Malia from San Diego
B: What is your name?
B: How old are you and where are you from?
M: 16, San Diego CA
B: How long have you had Tourette Syndrome?
M: Symptoms manifested when I was 3 years old.
B: What kinds of symptoms do you have?
M: For as long as I can remember I’ve been spelling everything I hear in my head, in Spanish, as well as making a chirping sound deep in my throat. A newer symptom of mine is flexing all of the muscles in my fingers and wrists. When I was in fourth grade, I used to whip my arm out to the side rapidly.
B: What is life like for you living with Tourette Syndrome?
M: Life with Tourette Syndrome is relatively typical. In times of high stress or emotional turmoil my symptoms worsen, but since the rest of my siblings also have TS, it’s normal to be making some sort of noise or TS related movement in my family.
B: What advice can you give other kids who are newly diagnosed with Tourette Syndrome?
M: Tourette Syndrome is not a death sentence, nor is it something you will have to “suffer through.” Yes, there will be times in your life when it feels like TS is holding you back, but the truth is, all of the noises and movements become a part of who you are. I wouldn’t be Malia without my bird noise.
B: What is the hardest thing about living with Tourette Syndrome?
M: My biggest struggle has been in changing people’s perceptions of TS. It’s hard to explain to kids my own age that whatever it is that I do, I’m not doing on purpose. Most are under the impression that I’m a class clown, when in reality I’m just stressed out and symptoms of TS are manifesting themselves.
B: What do you think other people should know about Tourette Syndrome?
M: Contrary to popular belief, not everyone diagnosed exhibits Coprolalia, and TS is not contagious, nor do diagnosed people make noises or movements with the sole intention of annoying others. People with Tourette Syndrome are completely normal. We’ve all got things we do, whether it’s doodling on everything, fidgeting with things, or making a bird noise.
B: What are your strengths and what do you like to do?
M: I am extremely focused on promoting a national campaign I helped to start, called “I AM NORM”. Created by 20 carefully selected teens across the U.S. Our main goal is to redefine the word “normal,” helping to include kids with disabilities in everyday life. I am currently raising funds for a charity event called “Over The Edge,” where participants who raise $1000 rappel off of the side of a 33 story hotel, all for inclusion. Help me out by going to http://www.iamnorm.org and clicking on the link.
Another thing I’m really passionate about is recycling. I make jewelry out of trash and broken everyday items like pencils, old gift cards, measuring tapes and silverware. I’m very environmentally conscious, so I feel that if I can take something that could potentially be trash, and make it wearable, then I’m doing my part to help our planet.
In addition the campaign and jewelry making, I love basketball, writing, American Sign Language, and volunteering.
B: What are your goals in life?
M: I hope to one day become either an American Sign Language teacher, or a teacher at a school for the deaf.