From May 15 to June 15, the Tourette Syndrome Association (TSA®)—the only national, voluntary health organization for people with Tourette Syndrome (TS)—joins the hundreds of thousands of families affected by TS to help raise awareness of this baffling disorder during National Tourette Syndrome Awareness Month.
One of the main goals of the awareness campaign is to encourage people who are troubled by symptoms of Tourette Syndrome and to encourage them to seek medical attention.
Throughout the month, local TSA chapters across the country will work to raise awareness, increase education and reduce stigma associated with TS. One such event is Government Relations Awareness Week from May 30 to June 6. During this week, TSA chapters and families hold district meetings with elected officials and community leaders to raise local, state and federal elected officials’ awareness of issues impacting families living with Tourette Syndrome.
What is the Main Symptom of TS?
Tourette Syndrome is a condition of the brain that affects 3 in every 1000 children in the U.S. A person with Tourette Syndrome has a symptom called “tics”. Tics are movements and sounds that are out of the person’s control. A tic can be something that is hard to notice like “throat clearing” or “rapid blinking” or a tic can be something easy to notice like “loud screeching” or “leg twitching”.
There are also some conditions that may come along with Tourette Syndrome such as Attention Deficit Disorder, Obsessive Compulsive Disorder, and Learning Disabilities. The combination of these disorders can result in extremely complex symptoms.
My son has Tourette Syndrome. He was diagnosed when he was 9 years old. He is now 12. It is a disorder that he faces every day of his life. Going to school is extra challenging, both from an educational perspective and from a peer acceptance perspective. Today we went to a restaurant and some of his tic events began to start. I could tell he was upset, when he leaned over and said to me, “I don’t want everyone to see me when this happens.” What does a parent do to help the situation? He can’t stay locked away in seclusion. My heart aches for him. My response to him was, “Don’t worry about it. If it happens, it happens.” I hoped it would give him the courage to relax. Unfortunately he continued to have difficulties. So as soon as our food was brought to the table, we had it put into to-go boxes and we left the restaurant.
It is this scene that my son faces every day. I only wish I could take the pain, the sorrow and the stress off of his shoulders and let me carry the burden. Unfortunately that is not possible. Instead I stand at his side, proud, and defiant – defiant to letting the disorder get the best of us – defiant to anyone who has a smart remark or a leering stare. This is my son and I love him. I only wish I could protect him all of the time, which isn’t always possible. I just want him to know that it is nothing to be ashamed of and that he needs to stick up for himself. It is not easy, but I will make sure he survives. We pray for a cure, and look forward to the day when it comes so we can yell out in celebration.