My son Joe...

... has been on my mind lately. He amazes me. Everyday he bravely leaves the comfort of our home and goes to school. In a world where everyone is trying to fit in and be like everyone else, Joe stands apart in many ways. Joe was diagnosed with Tourette Syndrome 2 years ago. Over night everything changed for him. He is no longer in charge of his body. His brain is & it compels his body to do things that many of us would rather not do, especially in public.

One morning 2years ago he awoke with vocal tics. All of the facial tics (eye blinking, nose twitching) that seemed like nervous twitches finally made sense to us. I knew right away that he had TS. I am going to talk openly about TS in my blog. Joe wants it that way. It is a part of who he is. The more people that are aware of TS, the more misconceptions can be dispelled. We want Joe to be accepted in every way and that means accepting that he has TS. Like many fellow sufferers of TS, Joe is bright and does amazingly well during school despite the fact that his tics are battling for his attention the whole day. He is very social and has many friends that are accepting of his tics and to that I am grateful. However, the last several days have been hard for him. His tics are increasingly getting stronger and more noticeable. He can no longer quietly hide them. When he comes home from school they explode on the car ride home and drive him "crazy".

My only prior experience with TS was (1) watching a show about someone with TS who was in a courtroom trial for being fired from his job for uncontrolled swearing. (That tic affects about 6% of the TS population) (2) A cousin of ours has TS (3) A young man when I was in college shot himself to death in front of a nearby LDS temple and he had TS.

TS is a genetic disorder but the gene responsible for it is unknown. No blood test or brain scan can detect TS. They think that Dopamine is improperly metabolized and that is what causes the unexplained twitches, jerks, and other sounds and vocalizations. Although one can stop the tics for a few moments, it is like holding in a sneeze...eventually it will come out. The tic that you have today will not be the tic that you have tomorrow,...they are constantly changing. There is no cure for TS and there is no one medicine that is known to help everyone with TS because everyone is different. That is why we choose to not medicate, because it is all experimental and there are adverse side effects. TS is a neurological disorder that also can cause ADHD and OCD, both of which Joe has. If he does something with one hand, he HAS to do it with the other. Many sufferers of TS have what are called TS storms. They have to work harder to get control of their emotions and their tempers.

I know of very few disabilities that are joked about like TS. You can find many videos of so-called people with TS on you-tube. I ran across one the other day on accident and it was disturbing. I was also in church one Sunday and a man was making fun of an old high-school teacher who had TS. It was hurtful. I should have said something to him but what could I say that would make him not feel as lousy as I was feeling? It made me sad for my little Joe.

Having a son with TS has been a blessing for me. I am now aware that there are many children that struggle with various conditions that we might not be aware of. If I see a child that is misbehaving, I try not to think "what is wrong with the parents". I am trying to be less judgemental. I am trying to raise my children to be accepting of those with differences.