Church Newsletter

Back when Liam was first diagnosed with TS, I spoke to the CE director at out church and we talked about whether or not we should tell the other kids in the church school about his TS. At the time, I didn't feel like it was necessary- Liam's tics were pretty mild. In my mind, I was still trying to keep as much a sense of normalcy as I could, and trying not to make Liam feel needlessly stigmatized. Our outlook on telling other people has changed along with Liam's tics. Now I try to tell everyone that I can about Liam's TS- if they've been informed, and they remain intolerant, shame on them. If I don't take the opportunity to educate them and they're intolerant, shame on me. The ministers have given me the opportunity to write a piece for the church newsletter to explain TS. Oy- think they'd mind if I wrote the whole newsletter? I guess I can try to be brief. In addition, Liam's class and the older kids are going to watch "I Have Tourette's, But Tourette's Doesn't Have Me". It's a great start, and hopefully a jumping off point for discussion other than "what a horribly behaved child" at coffee hour.

Here goes:

Several of you were treated to a "cue" during pageant rehearsal. The cue was a high pitched squeal that sounds almost like a whistle- the young children were told that they were to smile at the audience when they heard it. Or you might have heard it during coffee hour and wondered why the parents of that child were letting him behave so badly and completely ignoring the noise and not reprimanding him.

Liam was diagnosed with Tourette Syndrome in March. The diagnosis was a relief for me- I could officially get Liam the accomadations that he needed in school. It was a relief for Liam- I showed him "That Darn Tic" a newsletter written by kids with Tourette's, for kids with Tourette's. He was so happy to know that he was not alone. Tourette Syndrome is a neurological disorder that causes a person to make repeated and uncontrolled (involuntary) movements and sounds (vocalizations) called tics.

Liam is not badly behaved, he's not trying to be annoying, he has a neurological disorder. Shortly after Liam was born, I was standing at the front of the church with our family, Liam's godparents, Rebecca, T. Michael and the all of the children gathered around the baptismal font. Many of you were probably in church that day, and I took great comfort in the fact that Liam had his church family surrounding him and promising to help raise him in the path that God has chosen for him. God chose a tough path for Liam.

We've been working on techniques to quiet Liam's tics on the bus to help make it easier for the bus driver to concentrate. When I asked her the other day if the gum chewing was helping, she told me that it was so much better and asked me if it helped at home. I told her that I wouldn't know- we don't expect Liam to try to hold in his tics at home, it's really uncomfortable for him and our home is Liam's sanctuary. Liam is free to tic without anyone batting an eye. My hope is that Central will be a sanctuary for Liam as well, that church is one place where he will be understood and accepted.

For more information on TS, please visit the TSA website- http://www.tsa-usa.org/ . I'd also like to invite you to read my blog http://beth-lifesatwitch.blogspot.com/ .