Celebrate the wonderful story of Mia

Downers Grove IL

12 October, 2021

12:11 PM

Description

Tourette Syndrome (TS) is a neurodevelopmental disorder characterized by uncontrollable motor and vocal tics. TS is not as rare as many think--an estimated 1 in 100 individuals has TS or another Tic Disorder and 50% have gone undiagnosed. TS affects all ages, genders, ethnicities, and races," explains Amanda Talty, President and CEO of the Tourette Association of America. "Additionally, 86% of people living with TS have a co-occurring condition, such as ADHD, OCD, depression, or anxiety. By raising awareness and increasing understanding, we can make a meaningful difference in the lives of those impacted by TS." The Tourette Association of America (TAA) raises awareness and fosters social acceptance through education and robust social media campaigns. We provide support, hope and help across the nation to those with Tourette Syndrome through our national network of 31 Chapters, 83 support groups and 20 Centers of Excellence, we provide local assistance to children, adults and families in need. 17-year-old Mia Eschman from Swansea, IL is one of the members of the TS community. Mia was diagnosed with TS at age 7 years after tics and OCD tendencies were observed for several years. CBIT was attempted at age 8 years but was not successful. Mia just wasn't ready for it. Tics really increased in the 4th grade and med trials started. Her meds caused her to fall asleep for an hour each day during reading class. School staff allowed her to make up work she missed when asleep, but her parents abandoned that medication by the start of 5th grade because of too many side effects. Middle school was a struggle due to anxiety and depression issues, as well as an increase in tics. However, once we addressed anxiety and depression with meds and counseling her tic frequency decreased. CBIT was attempted again and was very successful. An example of Mia's CBIT success was at age 13 years during a CBIT session she had about 70 facial and vocal tics in one minute. Once the appropriate competing response was identified she reduced her tics to 2-3 times in 2 minutes. This was a huge breakthrough! Her success with CBIT coincided with her training as a Youth Ambassador for the TAA in July, 2018. Since being trained in San Antonio, Mia has explained TS to classes of 3rd and 4th graders, a group of elementary teachers, and a group of school psychologists in the Metro East area, near St. Louis, MO. Mia has also participated in a "young adults" with TS panel for the St. Louis TS chapter, and the virtual 2021 National Advocacy Day where she had the opportunity to discuss TS issues and relevant legislative needs with staff of IL congressmen and women. Every year during TS Awareness Month Mia has shared information about TS on social media and included a fundraising link. Mia is now 17 years old, and is preparing to start her senior year at Belleville Township High School East in Belleville IL. She has taken all honors classes, has a 5.0 GPA on a weighted 4.0 scale, and is ranked #1 in her class. Mia has received awards in school for character and achievement and was selected to participate in the IL Honors Orchestra and Jazz bands in 2021, where she played oboe and bass guitar. She has many interests and hobbies which have provided her with a wonderful support system of friends, teachers, and coaches. She started playing piano at age 5 years, and added the oboe and bass guitar at age 10 years. In high school brought Mia started playing the flute, xylophone, marimba, and upright bass. She is proficient in all, and loves being a part of every high school band. Mia has also enjoyed teaching piano and guitar lessons for the last 2 years. Mia has played club softball since age 10 years, and played high school softball her freshman year. A year ago a new player joined Mia's club softball team, and Mia noticed immediately she had facial tics. Mia has been very open with her teammates and coaches regarding TS and her symptoms, and kept waiting for the new girl to share "I have TS too," but it never happened. However, about 2 weeks ago, Mia's teammate's mom contacted me and shared they just received the diagnosis. Mia's teammate has had tics for years; however, her doctors and parents attributed tics to other reasons and thought she would grow out of it. In the last year, they started investigating the source of tics again, which lead them to a neurologist and the TS diagnosis. Mia's mom shared getting the TS diagnosis has been overwhelming on many levels; yet, even though they have felt overwhelmed her daughter keeps saying "if Mia is OK I'm going to be OK." The mom has repeatedly said "we don't know what we would do without Mia as an example. This has helped all of us." Mia's ownership and management of her TS have evolved. She has been presented with tools and supports to manage her TS since her diagnosis. Early on she was not able to use the tools offered to her; however, as she has matured and her TS has progressed she has experienced much success. Mia loves "paying it forward" with others as she shares her TS knowledge and resources. About Tourette Syndrome and Tic Disorders Tourette Syndrome is a neurodevelopmental disorder characterized by sudden, involuntary movements and/or sounds called tics. They can include eye blinking, head jerking and facial movements — throat clearing, sniffing and tongue clicking. The involuntary utterance of obscene words is called coprolalia, and it's much rarer than people think: Only 10 percent of people diagnosed with Tourette experience these symptoms. There is no cure for Tourette. The cause also remains unknown, but it is thought to involve genetic, neurological and environmental factors that can be treated. Tourette is underdiagnosed. Many children, parents, teachers and even physicians don't fully understand TS, which can lead to bullying, a lack of community support, an improper diagnosis and a host of other issues that impair the quality of life for someone with TS. Get Involved: Please give to help others like Mia at the Tourette Sydrome Association of America.