Spreading Awareness

Taken from the Center for Disease Control website:
"Community-based studies that include previously unidentified cases have reported estimates of 6-8/1000 children with Tourette Syndrome. The first-ever national estimate among a nationally representative sample of U.S. children revealed that 3 out of every 1000 children between the age of 6 and 17 in the United States have been diagnosed with Tourette Syndrome, according to a study by the Centers for Disease Control and Prevention released in the Morbidity and Mortality Weekly Report. Because this estimate is based on parent report of a Tourette Syndrome diagnosis, and diagnosis is less likely for children with limited access to health care services, this prevalence estimate is likely an underestimate of all the children who actually have Tourette Syndrome. "

Sadly, Tourette Syndrome is still horribly misunderstood by the general public. I spend a lot of time these days reading and posting on the National Tourette Syndrome facebook page. It's a great place to exchange ideas about ways to live with this more easily, sometimes just to vent in a place where you know other people will understand, and to share successes. One of the best things about it is that I've met people from all over the world who I instantly have a connection with. It's been a huge blessing. One of my friends from the national TSA facebook page is a mom in Korea who publishes a TS newsletter there. She's asked my permission to use Liam's article in her newsletter and will send us a copy when it's done. Liam is thrilled. He's being translated into Korean! Quite an accomplishemnt for a 10 year old writer. My friend has asked me to expand on it and write my own article. I'm so touched and honored to be asked. So I'll share it with you all.


My name is Beth Newberry and I'm the stay at home mom to three wonderful children, Diane (13), Liam (10) and Aidan (6). Liam was diagnosed with Tourette Syndrome on March 30, 2010. The diagnosis came as a relief for me, I finally had some answers and an explanation for what we'd been going through with Liam. When he was in preschool, we started to notice that he'd throw his head back and blink rapidly. I mentioned it when we went to his annual check up. The doctor told me not to worry about it, that it was a tic. She also said that he would probably grow out of it, or that the tics may change. She also told me to try to just ignore it because he might not even realize he's doing it and talking to him about it might make it worse.
The rest of preschool and Kindergarten went by without too many problems. When Liam got to first grade, his teacher complained quite a bit about his behavior. His tics were pretty mild, but she complained about his lack of control in class. Second grade was a nice respite. His teacher was much more flexible, and wonderful about communicating with me. I would let her know if I saw any new tics, and she would let me know if she noticed any. During this time period, my husband just thought that Liam needed us to be more strict and more structured and that he needed a teacher who would crack down on him and give him some discipline. The whole year was horrible. Liam's homework load would take several hours a night with me constantly on top of him to finish. It was stressful for both of us. On top of that, he was being kept in for most recesses because his handwriting was not "neat enough". His teacher kept insisting that he just needed practice, while I knew in my heart that something was really wrong and no amount of practice would make it improve. My husband was all on board with the strict approach, but Liam was so miserable. He was cooped up during the day, and then forced to sit for hours rewriting everything he had done during the day at night.
During these years his tics would change. Some of his tics included noises like blowing air through his lips which made a sound sort of like a horse. There was a lip pulling tic that would cause bruising. We also started to notice some echolalia where he would repeat things that other people said, but usually in the form of a song.
Fourth grade was a tough transition into a new school. His teacher was a wonderful man who has moved on to be a principal at another school. He was kind and caring, and realized that Liam was not just acting out to be difficult, but that he needed special accommodations to help him do his best. His teacher called in the OT to have her help to give Liam the type of things he needed in his classroom to help him concentrate on learning. I decided that it was time to find a neuro-psych group that would evaluate Liam for Tourette Syndrome. I got in touch with our pediatrician and told them that we needed a referral.
Liam was so relieved when we got his diagnosis. He finally understood why he was not able to control his body. I showed him The National TSA website and "That Darn Tic" a newsletter that they put out for kids, and written by kids. He was so happy to know that there were other kids out there with Tourette Syndrome too.
Liam's transition to fifth grade was tough. The work load got harder and leading up to the start of school, his tics got much worse. His motor tics increased to full body tics. He developed a vocal tic that's a loud squeal that sounds like a sharp whistle. Liam and I discussed the idea of him going on medication. While the medication has definitely not been a magic cure all, it definitely helped a bit with the tics. We've worked on dealing with his anxiety (which increases the tics) by working with a therapist and getting involved with the local TSA. We have also educated Liam's class and (thanks to a friend who runs an overall special needs education program at the school) his entire fifth grade class about TS. The school administration has been wonderful and supportive. I have a great line of communication with the principal who has been caring and supportive.
My next big goal is to get Liam's middle school ready for him. I'd like to get the principal and the staff ready for him to be there, and get the older kids ready to hear his shrieks in the hallways and bathrooms. I feel lucky to live in a fairly small town (10,000 people). A lot of the kids already know each other through the town sports programs and from the lower school.
This has been a big change in how I have to parent and what I need to do for my children. Overall, I think it's been a good change. I need to concentrate more on listening and on what Liam's needs are, and less on what my expectations are.