Tourette Syndrome ~ Your Child, His Tics and School

Happy Tourette Syndrome Awareness Month!
From May 15th to June 15th

It's nice to encounter touretters ticcing in excitement, anTICipating this post. It's TICrageous . Aw shucks - I'm TICkled you think so.

What is Tourette syndrome?

Tourette syndrome is not a laughing matter I know too well. 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 100,000 Americans have the disorder. Tourette syndrome is more common in boys than in girls.

It 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, painful or get in the way of school, medication can help. Also special behavior therapy can help reduce tics in children and teens with Tourette syndrome. More about this in a future post about the the book "Nix Your Tics!" by Dr. Duncan McKinlay. This book is the only youth how-to guide for these evidence-based techniques for managing tics.


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.


Tourettes and School~ How can the transition be made smoothly?


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 Tourettes 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 Tourettes to school.


Plan this meeting long enough in advance so the teacher can find teaching material about Tourettes 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/she wants to be present and if he/she wants to speak. Your teacher must be flexible for last minute changes in your child about these decisions.


The presentation to the class should accomplish the following:

*Allow the child to blend in and be accepted Tics and ALL.

*Inform his/her peers about Tourettes. 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/her 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/her brain tells him/her to blink and make my noises…

*Play the game “Do not blink” to make the children understand how needing to tic feels like.

*Explain how Tourettes has affected the child. Be sure to explain that throughout the year tics can change.

*Strive to have the classmates understand and accept the Tourettes not pity the child. Education brings compassion.

*Make them realize that ignoring the tics is the best way to go.

*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. (Ask 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 throughout the year because kids forget, tics change, kids have new questions and the TS individual 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.

Teachers could use Life's a Twitch and Nix Your Tics! by Dr. Duncan McKinlay, Ph.D., C.Psych. as resources for their Tourette presentation.  I wrote a post about this wonderful advocate for Tourette and about these must-have guides for families dealing with Tourette entitled Nix Your Tics! Eliminate Unwanted Tic Symptoms by Duncan McKinlay

 When Dr. Dunc, as he is called, was guest for a Tweet Chat session at The Coffee Klatch May 19th, 2010 finished on this encouraging question and answer:

What do kids/teens with TS often need to learn about themselves?

That they can still be whoever and whatever they want to be. Their ATTITUDE about their tics will hold them back more. With a good self image and confidence there is less anxiety and less tics and a better life.

Do you think children of today have more compassion for peers with Special Needs than when you were growing up?