Most people who have heard of Tourette Syndrome have this picture in their mind of some uncontrollable person who swears. Anything we see on TV or read about is usually about the more extreme cases of Tourette Syndrome. However, the majority of people who are diagnosed with TS have a mild or moderate degree of it.
Tourette Syndrome is characterized by uncontrollable tics that are manifested in a variety of ways. These tics can be vocal or physical. Vocally, they can range from throat clearing to yelling out things. Physically, they can cause someone to contort their face or flail their arms. There are even more symptoms that can happen anywhere in between. Tourette Syndrome is a very complex condition.
My oldest son was diagnosed with TS when he was 9, although, I knew before then that he had it. The earliest I can remember seeing symptoms was when he was 6 or 7 years old. He started off by making these strange faces, which we thought he was doing on purpose. Then it progressed into vocal noises, mostly clearing his throat and making this gulping type sound. I first heard about TS when he was 8 years old and I pretty much diagnosed him myself. It wouldn’t be until he was 9 years old that we were referred to a neurologist who gave him the official diagnosis.
Although you can take medicine to control the tics, we opted not to. I was homeschooling him at the time and felt if we could avoid medication, we would. By the time he was 11 years old he developed a sleeping disorder that I was told was connected to TS. He would sometimes go 48 hours without sleep. We ended up putting him on medication for that. Along with the sleeping disorder was a rage disorder that was extremely difficult for our family to deal with. At one time I thought TS had overtaken our family.
In 5th grade I put my son into public school. Initially he had a difficult time adjusting and because he was anxious, his tics increased. Tics will increase if a person is stressed or anxious. Other kids began to tease him and called him names like “Disease.” So about two months into the school year his teacher allowed me to come in and talk to the students about Tourette Syndrome. That was a breakthrough moment because after that, no one ever made fun of him again.
When my son entered middle school he desperately wanted to be “normal” and hated having to be on medicine. I was told by his neurologist that when a TS patient enters their teen years, the tics would stay the same, get worse or get better. In the middle of his 6th grade year we began to slowly wean him from his medication. His sleeping had gotten better and his rage disorder seemed to be going away.
By the time he entered 7th grade, he was completely off his medication and doing great. All of his tics disappeared. I can’t really explain it except that my son also greatly believed in the power of prayer and did a lot of that. As a mom, to see him overcome that condition was like a huge burden had been lifted.
Today he is about to wrap up his sophomore year and there are still no signs of TS. He hopes to join the Air Force so I’m glad that if he does, the tics won’t stand in the way. I encourage parents who have children with TS to find support. Tourette Syndrome is not something that just a child deals with, the entire family does. Sometimes you can feel alone in this, so I encourage parents of children with TS to reach out and get that support.
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