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Teaching your class about Tourette's

 

 

 

Teaching your class about Tourette's Syndrome can be a very good experience for you and the class.  It will help the kids in your class understand why you do the things you do and that you can't help it.  

 The first step is to let a parent, the school counselor or your teacher know that you would like to talk to the class about Tourette's Syndrome (TS).  Set up a good time with the teacher to make the presentation.

Most kids do the talking themselves but some kids don't want to be in the room when the presentation is given.  Some kids want their parents to be there, others like to do it on their own.  You can make the presentation in any way you like.   

A lot of kids find it helpful and fun to bring in a snack to share with the class while the presentation is given

The school counselor may have some material that may help you explain TS to your class but if they don't here are some suggestions:


Jennifer Zwilling, a 16 year old with TS, with the help from her sister and brother, founded The Tourette Syndrome Youth Ambassador Program.  The program trains children and adults to educate classes about TS.  You can find a video of Jen giving her presentation and more of her program materials at http://www.tsa-usa.org/People/kids/YouthAm.htm.  Jennifer was was nominated and became a 2007  BRICK Award Winner, (www.brickawards.org) for her efforts.

 


 

Inexpensive informational brochures are available through Tourette Syndrome Association, Inc. (TSA).

 


Some kids have shown the HBO Documentary - I Have Tourette's but Tourette's Doesn't Have Me to their class.  It is available through the TSA website.  Be sure to leave some time at the end to answer questions.

 


Ask the class how many of them know the difference between a tic, spelled t-i-c, and a tick, spelled t-i-c-k?  Explain to them that a tick spelled t-i-c-k is a little bug that attaches to your skin and sucks blood.  A tic, t-i-c, is a movement or sound that a person doesn't have complete control over.  A lot of people have tics, like sniffing, grunting, or licking lips.  Most of the time these tics are no big deal but sometimes a person has tics for long enough that a doctor says that person has Tourette's Syndrome.  A person with TS can sometimes hold the tics in for a little while but will eventually have to let the tics out.  It is kind of like blinking or breathing.  You can stop for a little while but at some point you can't help but let it go.  Have the class hold their breath for as long as they can or have them try not to blink.  Tell them that it is hard work trying not to tic. Now ask the class to raise their hand if they were thinking about monkeys.  Tell them not to think about monkeys for the next minute.  Explain that it is hard not to think about something that someone tells you not to think about.  Then ask, "Now, how many people were thinking about monkeys?"  It is like this with tics.  When you ask someone not to tic, it only makes them think about it more and makes it almost impossible NOT to tic."  It is helpful for a person with TS when those around him/her try their hardest to ignore the tics.

 


 

This is how one special person named Haejinn explains her TS to kids:

First, letís talk about the brain. We all know that our brains are kept in our heads. Did you also know that the brain is kind of the BOSS of your whole body? The brain has to keep track of what every other part is doing and then try to fix it if a part isnít doing what itís supposed to do. If you want your hand to move over and pick up a glass of juice, itís your brain that is in control of every movement that is needed to get that juice into your hand. But your brain is also responsible for things you donít even pay attention to. Did you know that when youíre reaching for that glass of juice, your brain is also talking to the muscles in your legs and waist, making them move Ďjust rightí so that when you do reach out for the glass, you donít fall over? Iíll bet you didnít even think of that!

So, Iíll bet if you try to think of all the things the brain has to pay attention to, you can imagine that it is very, very busy! Since the brain is so busy, it has helpers. You can think of these helpers as little messengers. The messengers carry the brainís message to the right part of the body. For example, if the brain decides itís time for the toes to wiggle, it tells a messenger ďHey, go tell those toes to start wiggling!Ē.

Sometimes people are born with TOO MANY messengers. After all the messengers have been assigned their job, there's a bunch of these messengers left over. They want to help too, but the brain says 'No, I've already got enough helpers. Go sit yourselves in the corner over there and occupy yourselves and stay out of our way."

Well, of course, the extra-messengers soon get bored and angry and decide they're going to help whether the brain likes it or not. So THEY start telling different parts of the body to do stuff. Now, these parts don't know there are extra messengers. They just know that when they're told to do something, they do it EVEN IF THE OWNER OF THE BODY DOESN'T WANT THAT PART TO DO IT.

If you donít believe me, try to not blink as long as possible. Pretty soon the brain will decide it's time to blink and send down a messenger. The poor eye will be confused.

"Here's the kid I belong to telling me not to blink, but at the same time, here's one of the brain's messengers telling me that I HAVE TO blink. Well, I better listen to the messenger before the brain gets mad at me!"

So then, of course, your eye will blink because it thinks itís doing what the brain tells it to do.

Thereís a lot of silly things these extra messengers make me do. Sometimes they want me to stamp my feet. Sometimes they want me to growl. (I like that one, itís kind of fun!). Sometimes they make me shake my head. And lots more!

  


 

You may also want to try reading My Friend Ben by Jeanne Westphalen to the class (the monkey example above was taken from this book).  Clicking on preview will make the whole book viewable and printable (the first page is blank so be sure to scroll down).  It is written specifically to explain TS to a classroom.  The last several pages are geared for teachers and includes activities for teachers to do with the class.

 



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Glossary


 

 

Disclaimer- I am "just a mom".  Every effort was made to insure this information was as accurate as possible.  However, no information found on any website should be substituted for the care of a licensed competent professional.

 

A WORD ABOUT SPELLING
The official name of the condition, according to the DSM-IV-TR, is Tourette's disorder.
Tourette's is also referred to as TS, Tourette Syndrome, Tourette's syndrome, GTS, and Gilles de la Tourette's Syndrome.
You may also see it referred to as the Tourette Syndrome Spectrum Disorder,
but many proponents of this terminology include conditions in this alleged spectrum
which have not been shown to be part of or genetically linked to Tourette's syndrome.
Common misspellings are tourettes syndrome, tourretts, tourrettes, touretts, terrets, terets, turettes, and turrets syndrom.
Tourette's disease is another common misnomer (it's not a disease).
Another common misspelling is ticks: ticks are nasty beasts that bite dogs and people. People with Tourette's disorder have tics.

 

Thank you to TSNW for permission to use the copywrited wording above and for her countless hours of dedication to Tourette's education. 
Thank you to Haejinn for permission to print her story on how to tell kids about TS (found on the FAQ page).
Thank you to Haejinn, SLeaska, HBool, Glen625,Sabina0815, MaterialDiva, BlueChin and KBurra for their support and help getting this website up and running.  It was truly a collaborative effort.
Thank you  to Teri and Leah for their input and support.  Not only have you helped with this website but you have also supported us through this journey.  Words cannot thank you enough!
A huge THANK YOU to our son for not only helping with this site but for teaching me more about life,  humility, and humanity than anyone else I know.

 

Copyright 2006.  All right reserved.
No part of this publication may be copied, re-printed, or used in any form without my prior written consent.
By Cristimo3: Growing Up With Tourette's Syndrome- Information for Kids


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