My husband and I have not one, but two children diagnosed with Tourette’s Syndrome (TS). We consider ourselves very fortunate as this disorder is not life threatening. However, it IS heartbreaking.
Tourette’s Syndrome is a genetic neurological disorder that affects both your physical and emotional well-being. The hallmark sign of Tourette’s is tics. These are sudden, brief, intermittent movements or sounds. Symptoms range from mild to severe. Severe symptoms may significantly interfere with communication, daily functioning and quality of life. Tics are involuntary just like blinking. If you try not to blink, eventually, your body takes over and blinks for you. This is the same for tics. My girls can try to hold in a tic, but eventually their body takes over and the movements begin. Try not blinking right now, hold out as long as you can. Your eyes are becoming uncomfortable, dry and you have the insatiable desire to blink to feel better. This is how my kids feel 24/7 while trying to control and hold in their tics.
Many people misunderstand Tourette’s and think that it means a person cannot control words that come out of their mouth. This is a unique and very uncommon form of this disorder, but media and society choose to focus on this for the “comedy” of it. Our girls do not have this form of Tourette’s.
Besides the physical ramifications, there is also the emotional part. Not only the emotions they experience when teased, but also in how they perceive social situations. For example, I might turn to speak to my daughter, but I scowl because the sun is in my eyes. Rather than understand the sun is in my eyes, she may interpret that I am angry with her. Essentially, the misread social cues can cause social interaction issues.
It has been a long road in our house, just as in any home where there are special need issues. The difficulty is not in the tics themselves, but in seeing the girls lack of confidence when ridiculed or excluded. However, this has changed over the last year due to the girls dedication in educating their peers and community on Tourette’s Syndrome!
Our girls have learned to advocate for themselves and those who share their disorder. They have become Youth Advocates for NJ Center for Tourette Syndrome and have received extensive training on how to spread awareness. In the past year, this is what they have accomplished:
ABC News in Philly did a feature story on Anna and how her bravery allowed her to approach her 5th grade class and explain about her disorder and answer any questions they had. From this, a couple kids within her school felt comfortable to ask for help with their own TS.
When Ava was diagnosed, Anna stood at her side while they both explained how Tourette’s works to her 3rd grade class. Both girls are certified to present programs to schools, organizations and clubs (and have done so) throughout the state. At there last presentation, a 12 yr old boy was inspired to tell his classmates that he also had Tourette’s.
The girls are also trained to work with Neurologists when they teach at Resident symposiums about diagnosing and treating TS. The girls teach the Residents how to treat the person, not just the disease.
The girls were honored at NJ SkyBlue Professional Women’s Soccer team game for their dedication to spreading TS awareness.
Tim Howard, US World Cup Soccer Goalie, who also has TS, presented a soccer clinic for kids with TS and the girls were invited to meet him.
The girls approached our local borough requesting that June 4 be designated Tourette’s Awareness Day. Their request was granted.
Currently, the girls are organizing a Tourette Syndrome Awareness 5k Family Walk in our town, Medford Lakes, on Sunday, September 20. http://www.active.com/donate/NJWalksMedfordLakes
As a family who has supported their community endlessly, we respectfully request that you all support us with this Walk. All money raised goes toward the programs the girls (and others) put on in our area along with helping to fund the NJCTS Youth Scholarship fund.
You can help by signing up for the walk, being a sponsor, or volunteering to help with the walk. Anything is appreciated. We cannot tell you how this advocacy work the girls are doing has built their confidence. They are empowered. You can help them empower others by joining us for this great day.
Thank you to all who have supported our family thus far and to those who will support us now. Applications for the walk, donations and sponsorship are available at Jersey Pools and Spas and our family. Please join us and help build the confidence of other kids with challenges. Thank you.