My son was diagnosed with Tourette Syndrome (TS) when he was seven years old. Before his diagnosis, I doubt my husband or I could have answered the question “What is Tourette Syndrome?” Now it seems that sometimes we explain it on a daily basis. We struggled finding the right medical care for him, and began the process of trying different medicines to help him with the symptoms of Tourette Syndrome. In 2005, I stumbled upon an article about a doctor who was familiar with Tourette Syndrome (TS) and was involved in research for TS and Obsessive Compulsive Disorder (OCD). We contacted him and soon thereafter began travelling (two hours one way) for CBT therapy to help with my son's OCD. Finally, after three years of going from doctor to doctor, we had found someone who could help. Not only could he help, but we were included in a medical study which meant we received this therapy at no cost! (Therapy which is usually about $300 per session.) It was quite obvious to us as this point that God had his hand in this. We began seeing some progress with my son's OCD and with his TS and finally began to breathe a sigh of relief.
As is common with Tourette Syndrome, once he began getting closer to puberty, the TS and tics started to rev their engines up once more. So once again, we began weekly visits to our doctor—still a 2 hour drive one way. And once again, God provided. We were able to be included in a medical study that “coincidentally” was geared specifically for kids his age—learning to cope and manage life with Tourette Syndrome. Again, we’ve seen great progress….although we have learned and experienced that the only consistent thing about TS is that it isn’t consistent!
When my son was first diagnosed with Tourette Syndrome, I think it would be fair to say that we went through a sort of grieving process. We thought some of the dreams we had for his life would be unattainable now. What we are beginning to realize more and more, is that those dreams are REACHABLE, but the path to get to those dreams may look a little different than we had envisioned. Now, instead of being embarrassed by his TS, he has begun to embrace it, and see that perhaps God has placed this in his life to give him a platform to help others.
Last spring, my son was trained as a Youth Ambassador for the Tourette Syndrome Association. Now he is equipped to go into schools and other settings and share with his peers and others about Tourette Syndrome. He has been interviewed by several newspapers and many have been encouraged by his boldness. He has spoken to a psychology class at a community college, elementary schools, education fairs, support groups, and with his classmates. Each time he speaks about TS, I see his self esteem grow a little more.
The past eight years have been quite a journey, but God has been faithful. Now as my son finishes up ninth grade, we once again have more steps to take. He's just recently received his passport....the next big step is going on a mission trip with his youth group to Nicaragua in June. This is a HUGE step for me as his mom! And no, I'm not going, but I have my passport just in case! This young man has more compassion in his heart than any other 15 year old boy I know. He'll do great.....it's me I'm worried about!
As hard as it is to let go, I know it's the right thing to do. Do I still worry? Absolutely! But as I sit back and watch what an amazing young man he is becoming, I realize he's going to be just fine.....and he's going to make a difference in this old world!