All TSA of Texas support groups are FREE of charge and have supervised fun for kids with TS and their siblings while the adults meet separately!

The Matcha Family

by Shelley Matcha

     Seven years ago, like most people in this world, all I knew about Tourette Syndrome was what I had seen on television.  Then one day, out of nowhere, my adorable, bright, athletic, well-behaved and loving 6-year-old son started blinking his eyes - hard.  I didn't think much of it at first - probably just allergies.  But as it went on, I began to notice it more and more.  It just didn't look right.  After school one day, I actually counted them - over 30 blinks in one minute.  I instantly knew something was terribly wrong.  I was terrified.  I didn't know it at the time, but this was the beginning of our journey with TS. 

     I made an appointment with our pediatrician, and did my best to hold myself together until Colton and his little brothers went to bed that night.  Then I got on the internet to try to figure out what could be going on.  For some reason I can't explain, I wondered if it could be TS.  I read about the symptoms online - how symptoms often begin with eye blinking or small noises around the age of 6 or 7.  Then I remembered how Colton sometimes made small noises - like little hiccups - when we were reading together at night.  Could that be a vocal tic? 

     Our pediatrician suggested we see a pediatric neurologist, so I called the neurologist's office expecting to get in right away.  No, it didn't work that way - we had to wait three whole months.  I couldn't believe this wasn't considered more urgent and I didn't know how we would get through until then. 

     I felt so lost.  I worried all the time.  I spent hours every night researching TS on the internet.  Many of the things I read scared me so much I couldn't sleep.  But I had to keep reading, trying desperately to find something to make me feel better. 

     I had so many questions.  How much longer did he have before everyone would stare at him everywhere he went?  When would he start cussing or barking like a dog?  How much longer could he play sports?  Would he be placed in a special classroom at school?  Would he have any friends? Did he have any chance of a normal life?  At least it's not cancer, friends and family tried to reassure us.  He won't die from this.  I just wondered if he'd want to. 

     Luckily, my internet research eventually led me to TSA of Texas.  I called the hotline and left a message, and someone called me back within a couple of hours.  Sheryl explained to me that she was not a doctor, but the symptoms I was describing did sound like they could be TS.  Surprisingly, I was actually relieved to have more of an answer.  She went on to say that if it was TS, it was no worse than having something like asthma.  She reassured me that most kids with TS had mild to moderate symptoms - not what I had seen on television.  Only 15% of kids with TS could not control using bad words.  There was no reason Colton would ever need to stop playing sports, and he would most likely remain in a regular classroom at school.  She talked to me for a long time, and I finally felt like I had some answers.  My husband is still grateful that after learning about the many hours I was spending on the internet, Sheryl cautioned me to be careful when looking online since so much of it is about the most severe cases, and she gave me a list of trusted websites.    

     Unfortunately, there was not a support group in our area, but we knew Colton had tics, and we needed to talk to parents who knew how to handle them.  My husband and I drove three hours to the nearest TSA Support Group meeting in Katy.  I braced myself for the worst as we walked in the door. I was certain it was going to be very depressing.  After all, what was there to be happy about if your child has TS?

     I could not have been more wrong.  Everyone was so warm and welcoming.  I met several kids with TS - or at least I was told they had TS.  Really, they just looked like any other group of kids.  And they were laughing and having fun with each other.  This was so reassuring.  The parents were relaxed and laughing, too.  I was laughing!  Several parents gave us some great advice that I remember word for word to this day.  As we left, for the first time since I counted those blinks, I felt like we were going to be okay.  Our family was going to make it.  We could be happy.  And most importantly, Colton could be happy.     

     With the help of TSA of Texas, I learned much more about TS over the next several months.  This made it a little easier for us to accept when Colton was officially diagnosed with TS and one of our 4-year-old twins began showing TS symptoms just 4 months later.  But I must admit we were still thrown for a loop when our third son was diagnosed with TS just 6 months after that.  As Chase so aptly put it, "You mean we all have tics???!!!"  How could it possibly be that all three of our beautiful boys have TS?  We had not even known to be worried about this.  TSA helped us figure out how to explain all of this to our boys, start a support group in our area, find a neurologist best suited to help our family, and most importantly gave us hope that our children could not only survive, but lead productive and happy lives.

     Over the last 7 years, we have had to deal with all kinds of tics, such as eye blinking, eye rolling, eye rubbing (to the point of making sores), lip biting (more sores), facial grimaces, head turning, neck jerking, shoulder shrugging, toe dragging, rubbing against things, repeating words at the end of a line when reading, squeaking, spitting, humming, sniffling and making other odd sounds.  One of the boys has ADHD and several learning disabilities, and one of them has some OCD.  Yes, of course, there have been some bad days and some tears (mostly mine), but most of the time this is just background noise and our lives are pretty "normal" in spite of it all.

     I wanted so desperately to be able to do something to make it better, but as you know, there still is no cure for TS.  Medications can sometimes help reduce symptoms, but they do not eliminate them, and they all have side effects.  But working through TSA to help other families, changing the public perception of TS symptoms even in small ways, advocating in the schools for my children and others with TS, and developing relationships with tutors and doctors who are knowledgeable and supportive has helped me to feel like I am fighting the good fight, that I am "doing something," and this gives me some comfort.

     Through our Austin support group meetings (yes, I started a group here!), my boys have met so many kids with TS that they really don't see themselves as that different from any other kids.  It's "not a big deal."  They see their symptoms only as annoyances and don't let TS slow them down.  They get good grades and have rooms full of trophies and ribbons from various sports.  They all take music lessons and they have plenty of friends.  And yes, they are happy.

     We still don't know exactly what the future holds, but I know my boys will be okay.  And I continue to be thankful every single day for the life-changing support my family receives from TSA of Texas.   

Has TSA Helped Your Family?  We would love to hear it from you!  Please help us spread the word about the difference TSA of Texas makes in the lives of those dealing with TS.  Please send your story to [email protected].