To our family, Tourette Syndrome isn't a big deal. To the outside world, it's like a scary disease. People are scared of what they don't know. So our hope is to educate as many people as we can. Here is Carson's story.
Carson was diagnosed 7 years ago with Tourette Syndrome. A genetic disorder that he inherited from his mothers side of the family. It started with throat clearing and licking his shoulder. I took him to the doctor on three separte occasions to see if he was getting sick, but after 3 times of hearing he's not sick, the doctor said, but I think he might have TS. We were then sent to a specialist who informed us that he had to have ticks for more than a year before he could officially be diagnosed with TS. We tried several different drugs and went to therapists to help control his ticks, but nothing worked. The meds made it so much worse. We opted to deal with the ticks and learn to control them ourselves. We looked up everything we could on the internet and learned as much as we could about TS. In doing so I learned that I too have (unofficially)TS and Carson's uncle.
Over the years we have learned that when he experiences any kind of strong emotion, like anger, excitement, anxiety, sadness, happiness, scared, depressed, stress, fatigue, etc, that his ticks are worse. We have also learned what calms him down or ever takes the ticks away, like, using his hands. Drawing, origami, video games-these tend to calm him. There is still so much that we are learning and so much more we need to do, but for now we are taking it one day, one step at a time.
We were told that Carson's ticks will continue to get worse until he hits puberty, at which point they will level off, get better, or possibly go away. Right before this happens, there is a calm where you think its gone or gotten better, and then it comes back with a vengence. I really hope that we are at that stage because the ticks that he is experiencing right now are really bad. At times he looks like he is having a seizure because his whole body is ticking so badly. He kept falling off his chair the other day and finally had to lay on the ground to avoid hurting himself because the ticks were so bad.
The last 2 years have been the hardest for him. Because of his Tourette's, he has been the victim of bullying. we are considering pulling him out of school. I am worried about his self esteem and his emotional state. He is a good kid with a heart of gold. If only his fellow classmates could see what the rest of us already know about him. My heart breaks for him. It's almost more painful being the parent. We have to carry the pain of our children and our own pain.
We need to teach our children that we are all children or our Heavenly Father and He loves each of us very much no matter our differences.
If anyone is interested in learning more about Tourette Syndrome, please go to their website at, www.tsa-usa.org. We are so grateful for the love and support we have from all of our family and friends. We love you.
