What is Tourette syndrome? If your child has Tourette syndrome you will probably be asked that question many times or, without being asked, you will need to explain about Tourette to justify your child’s behavior if vocal and/or motor tics bring unwanted attention to your child. Today’s post has tips how to explain Tourette syndrome to your child’s classmates and the importance of being proactive in telling all staff members at your child’s school.
Tourette: Not a Laughing Matter,
Starts Usually in Between Ages 5 -7,
and Often Tic Reduction in Adulthood
Tourette syndrome (TS) is not a laughing matter, as often depicted in social media. TS is not a psychological condition; it is a neurological one. Tourette syndrome is probably, in part, a genetic condition, which means that a person inherits it from his or her parents. TS is not contagious. It is believed that about 200,000 Americans have the disorder with millions more manifesting associated conditions. Tourette syndrome is more common in boys than in girls.
Tourette almost always starts before age 18 – usually between ages 5 and 7. The percentage of kids who have a complete remittance of tics as they grow older is only around 10% only. However 90% have significant reductions. Unfortunately TS stays with you all your life but it will not shorten your life nor make you sick.
The syndrome is a condition that affects a person’s central nervous system and causes tics. Tics are unwanted twitches, movements (motor tics) or sounds (vocal tics) that people make.
The tics that come with Tourette syndrome may not necessarily need to be treated, because they are rarely dangerous or harmful. But if they are embarrassing, disruptive, frightening, painful or get in the way of school, medication can help. Also special behavior therapy can help manage and reduce tics in children, teens, and adults. You can read about this in the book “Nix Your Tics!” by Dr. Duncan McKinlay.
What Are Tics?
Some people explain tics as what you experience when you hiccup. You do not know when a hiccup is coming and you do not know how to stop one. Or another explanation is like when you have an itch. The URGE to tic, not the tic itself, is involuntary. Like scratching an itch – the itch can’t be controlled at all, but there is a bit of control over the scratch…however at a great cost to the individual.
Some say tics are like an itch. Others say tics are like pressure, tickle, tightness, warmth, etc. The fact kids suppress tics means on some level they are aware of the itch. You can’t suppress something that is completely involuntary, or have no idea is coming. But also there are those tics that come out of nowhere. Some are so sudden that they surprise even the person with the tic. They don’t see them coming!
The urge to scratch the itch is so overwhelming that the individual cannot concentrate on anything else. So like an itch, a tic can sometimes be controlled, with a lot of restraint on the individual’s part. However in the end the tic has to come out and by then it will even be stronger. Moreover tics wax and wane and change.
Tourette Syndrome and School ~
Tell School Staff and Classmates
Ridicule and Rejection
More Hurtful than Tics!
If a child has many tics and is embarrassed by them, to make life at school more bearable, a meeting with his teachers before a new school term is in order. Here you must discuss how to explain to the other students in your child’s class about Tourette and the particular tics your child has. Also any other adult in the school setting from bus driver to cafeteria staff, from music teacher to gym teacher must be informed so they know what is going on. If you thought bullying was a problem at school multiply it tenfold when you send a child with Tourette to school.
Plan this meeting long enough in advance so the teacher can find teaching material about Tourette to help with the presentation : a video, books written for children… Also I recommend to have the child present for most of the discussions.
Discuss accommodations like having to leave the classroom at any time if your child is overwhelmed. Have your child shown where he may go (Safe room/safe person). However, what you must strive for is for the child to feel at ease enough in class that those accommodations are rarely used. The permission might relieve enough stress that in itself it is a plus.
Involve your child in planning what is going to be said to his class and decide who will say it. Let your child decide if he wants to be present and if he wants to speak. Your teacher must be flexible for last minute changes in your child about these decisions.
Presentation to the class should accomplish the following:
- Allow the child to blend in and be accepted Tics and ALL.
- Inform his peers about Tourette. Especially to clarify misinformation that they might have.
- Reassure the class that they cannot catch it. That it is not fatal. That TS is inherited like the color of their hair, eyes…
- Make sure they know Tourette syndrome means that there is something in the child’s brain that tells his to make noises/motions… all day long.
- Explain how the child can’t help it because it is a medical condition. Compare it to blinking your eyes. Just like your brain tells you to blink your eyes, his brain tells him to tic.
- Play the game “Do not blink” to make the children understand what needing to tic feels like.
- Explain how Tourette has affected the child. Be sure to explain that throughout the year tics can change.
- Strive to have the classmates understand and accept the Tourette not pity the child. Education brings compassion.
- Make them realize that ignoring the tics is the best way to go.
A Game to Lighten the Presentation on Tourette and Tics
Play the game “Don’t think of the elephant” to make them understand what a tic is and how difficult it is not to tic. First start by asking how many were thinking of an elephant while you were talking. Then emphasize that they must not think one second in the next minute about an elephant. After the minute is over ask the question again . The game lightens the mood but brings home the point you are trying to make.
Refresh and Repeat the Presentation on Tourette
Refresh and repeat the presentation throughout the year because kids forget, tics change, kids have new questions and the student with Tourette might want to add information. This would be a good time to invite a successful adult with TS in person/video. Also talk about other disorders so the students develop open minds and open hearts to all Special Needs.
- Book Review of Nix Your Tics! Eliminate Unwanted Tic Symptoms: A How-To Guide For Young People by Dr. Duncan McKinlay
Thank you Bridget for taking the time to write such a detailed comment. I am sure many parents of kids with Tourette or individuals with TS will find your suggestions helpful. It is very true the point you make about giving a child “free time in their own space” when they return from school. I hope you are having a good year and that, like many, your tics will lessen when you get older. Lorna the mom and grandmother of kids with Tourette
I am a thirteen year old girl, and I have had tics all of my life. My parents did everything they could to keep them from happening, at first. They cut caffeine out of my diet for a while. That didn’t help. Lowered sugar amounts. Didn’t help. They tried to keep me extra hydrated. Didn’t help. However, around the time they were trying hydration, there was an incident. In about, I think it was third grade, I was having a tic episode in class. I anxiously raised my hand to ask to get to the bathroom. I was really just going to get a drink, but I felt to embarrassed to tell her the real problem. The teacher told me to hold on a bit, and that we were going to use the restroom shortly. I waited, and eventually we did go. I had been ticking during most of the waiting time. I got a drink and prepared to go back to the classroom. The teacher asked me why I didn’t use the restroom, and I said I hadn’t needed to. She asked me why I had asked to leave, and I told her I just really needed a drink. She looked at me in a way that made me feel embarrassed. I later found out that water wasn’t the solution either. My parents eventually allowed me to handle my tics my own way. I managed to find a way to suppress the tics, though I still felt the urge often. Though I do think in some ways it could be beneficial for a teacher to know about a child’s tics, I do not think it is necessary for the students to know. I feel very embarrassed when talking about my ticks and would find it traumatizing to explain my tics to a class of students who did not- and most likely never would- understand what tics felt like. I find it frustrating when my mother speaks for me because she does not understand either. The most frustrating- yet common- thing people say is, “He/She tics when they are excited.” It is EXTREMELY probable that is not the case. I myself do not relate to this, and I have talked to many other kids with this who also did not relate. I find it that I tic most when I am not doing anything, or when I am stressed. The best thing to do is to keep your child busy, but not too busy. I myself find it the worst in long car rides while staring out the window for prolonged periods of time. Try to give your child something to do in these types of situations. Music is not going to be an acceptable solution. Often times, if I am having a tic episode, music can often make it worse. Again, I have found ways to suppress the tic enough to wear I do not tic around people as often. However, the more a child suppresses the tic, the worse it will be when it comes out. I myself do not find tics a bad thing. As a child who tics, I find it relaxing and almost enjoyable to allow myself to tic. However, when I am around people, I just find a way to keep busy. I may appear fidgety, but I am not often caught ticking. What I have found the most useful, is this bracelet a friend gave to me. It has a piece shaped like the sun, so there is a small cave on the back that is big enough to place my thumb inside. If I feel the urge to tic, I reach over and run my thumb along the inside of the charm on the bracelet. As I said before, to some people, I may appear uncomfortable or fidgety. People may even think I am lying to them when I am really just struggling to suppress. However, this is preferable to me rather than have them see me tic. I would seriously suggest that when your child returns home from school, you simply allow them twenty to forty minutes to sit in a space completely alone and allow them to do as they please. You may have problems working plans around this, but it is needed. I myself actually find ticking a stress reliever, and find myself stressed and or anxious when I have suppressed for too long. Sometimes this may be weeks; other times this may only be hours. I am just suggesting that you allow your child to decide how they will handle it. Others may find other ways to handle it, but these are the things that have worked for me.
Thank you so much for this post this will really help me understand my sons situation
Hello Sisi, Thanks for your kind words. Happy to read you found our post on Tourette and School helpful. Lorna
Hi Bridgit, this is very helpful for me, mom of an almost 7yo who has just been diagnosed with TS. She has alway had trouble on long car rides, I keep a bag of car games, coloring and books.
Have yours lessended more since you were my daughters age or you just manage them better? She has complex vocal and motor. She is very bright and outgoing. She wanted the therapist to come into her class and explain why she does her habits so she wouldn’t have to explain anymore. It went very well, but this is 1st grade and we don’t know what the future will be and how much more severe her tics can become. Taking it 1 week at a time.
Hello Katherine Smith Brown, Happy to read that it went well when your daughter’s therapist went in class to explain about Tourette. You talk about the future…for many with TS the tics often lessen with adulthood. Also the person has learned what triggers their tics and may know better how to “control their environment” so they have chosen to work someplace where they feel better. Hope your child has a good year at school. Lorna (mom and grandmother of children with TS)
Hi my granddaughter, who is six years old, just been diagnosed with tic. I need help with how to handle this with the kids at school picking on her.
Hello Valerie, We have many suggestions in the above post, Tourette Syndrome and School: Your Child, His Tics… To help a child who is being picked at, the first thing that the parents or caregiver can do is to talk to the child’s teacher(s). From there be sure to arrange a second meeting or conversation to see if the situation is better. All the best to your granddaughter. Lorna
I can’t thank you enough for this post. My son (6) is about to start a new school and I have been so worried about him settling in and making friends. I think I am making it too much of a big deal as I am so nervous, where as he does not seem to be. Thank you for being so open and honest and giving me some much needed advice.
Thanks for such a great information, This will helpful for my daughter.
Thanks, happy to read our post on Tourette syndrome is helpful for your daughter.
For me, the feeling of an oncoming tic, especially a vocal tic, feels like pressure in my throat.
Thanks Alexis for sharing this. I hope you are having a good year, Lorna
Alexis, Tough hard to explain, it feels the same for me. I’ve tried to explain it before like trying to stop a yawn, starting in my throat and then a type of “energy” ? through the back of my neck. Very hard to explain, but the same since I was a child. I am 41 now 🙂 -Pierrette