Tourette Syndrome Awareness Month runs from May 15 to June 15 this year. Many people don’t really understand Tourette Syndrome. So today, we’re featuring a story by Johnson & Johnson mom Raquel Garzon. She shares her experience of raising a child with Tourette Syndrome.
Before having my daughter Tatiana, I suffered the loss of six pregnancies and thought I would never be able to deliver a baby of my own. The arrival of Tatiana healed many wounds and filled an emptiness that was hard to describe.
She was a beautiful, quiet, and observant baby. She was a baby I could take on an airplane and go half-way around the world without even a peep leaving her lips for the entire trip. Strangers were fascinated by her and her intriguing stare.
At 18 months of age, Tatiana’s extreme silence went from something worthy of envy to that of great concern. She seemed to understand everything, yet she said nothing. We started her in private speech therapy sessions, and it was around this time that Tatiana started having tics.
I first noticed her tics one day while she was watching television. She would open her mouth really wide and squint her eyes – almost like she was yawning, but much bigger with very sudden jerking movements. At times, she would do this once every few minutes. Other times, she did it over and over again, every two to three seconds.
Even though it didn’t seem to bother her at all, the repetitive movements drove me to tears. I was obsessed with her tics. I looked for them and hated seeing them all at the same time. I recorded her tics with a video camera to show to her pediatrician and began searching the Internet for answers.
Her pediatrician saw the video and didn’t seem too concerned. He said, “Kids are weird, and tics are not uncommon … we won’t worry unless she has them for more than a year.” A year? I thought I would die if I saw her jerking for that long.
Tatiana’s tics progressed to also involve her eyes, her tongue, and her nose. She had tics that would go in a certain order: open mouth, tongue sweep over top lip, and nose crinkle.
She sometimes barked or said the same nonsense word over and over again when she finally began to speak. She would chew on books and eventually eat pieces of the pages. She had drooling and spitting tics that were a combination of embarrassing and infuriating for me to watch. She bit her nails incessantly. All the while, she wasn’t bothered.
Then she started having night terrors. The first one she had was so frightening I was sure that someone had broken into the house and done something terrible to her. During these episodes, she always had her eyes open – as if she was awake — but never seemed to remember having them, even when she finally began to speak and tell us things.
Tatiana was officially diagnosed with Tourette Syndrome (TS) at age four by a pediatric neurologist. She said that she really didn’t treat tics, but encouraged us to learn as much as we could about TS and join a support group. We did both. And when Tatiana turned six, I enrolled her in a research study on TS and genetic links, so that we could contribute to the science and research on TS.
Tatiana is now seven years old and finishing the first grade. She is excelling in school and reading at a third grade level. She plays the piano, plays on a soccer team, runs cross country for her school, takes dance classes, and will try virtually anything.
She has gone parasailing, ziplining in a rain forest, rock climbing, snorkeling with sharks and stingrays, traveled all over the world, and ran (without walking!) her first 5K at Disney this year on the Tourette Syndrome Association Team to raise money for TS awareness and research.
Her tics are barely noticeable by others, but do get worse when she is hungry, tired, or stressed. She now noticeable by others, but do get worse when she is hungry, tired, or stressed. She now notices her tics and can tell when something she is doing is a tic or not. She has tics that bother her, and she has tics she likes.
We attend events for TS where she can be around other kids and adults with a variety of different tics. When we are with other people with TS, she starts having more tics … it’s like a tic party. We talk about TS because it is important for her to know that it is a part of her, but that it does not define or limit her.
We have been told that tics can worsen or improve through cycles and can worsen through puberty, so I have to make sure that Tatiana knows as much as possible about TS and is prepared for any questions, comments, or teasing that could come her way. Our family has learned a lot along the way – not just about TS, but about life and people.
Now, as I watch Tatiana, I don’t even notice the tics that used to bring me to tears. I just see a wonderful, adventurous, and curious spirit that sees no limits to what she can do. I don’t even wish for her tics to go away anymore because they are a part of a perfect package … a package that for me, has taught me to never give up, and to embrace the journey.
To find out more about Tourette Syndrome, visit the national Tourette Syndrome Association website at http://tsa-usa.org/.
Raquel C. Garzon, MS, RD, LD/N, is Senior Vice President of Programs and Delivery and Director of Nutrition at the Human Performance Institute Division of Wellness & Prevention, Inc., a Johnson & Johnson Company. She is responsible for all of the Corporate Athlete® Course Nutrition content and has provided her expertise on Energy Management Technology and nutrition strategies on national TV and radio, as well as a variety of publications and speaking arenas.
She is currently pursuing her doctorate in Global Health Sciences at Nova Southeastern University. She has two children and enjoys traveling, adventure racing, and salsa dancing.