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Talking to your children about their Tourette's

 

Since this websites debut I have received many emails about the issue of how to talk to a child about TS.  One mom wrote, "Wow!  This information is so great but I don't even know where to start with my son.  How do I talk to him about TS without making him upset or anxious?"  I wish I could tell you all that I handled things perfectly with my son but I made plenty of mistakes along the way.  Having worked through these mistakes and having asked professionals and other veteran parents about this topic, I have formed some opinions about what works and what doesn't.  As you read this, please be aware that this is only my opinion.  You may want to consult a qualified psychological professional to guide you through the process. 

Some would suggest not to say anything about TS to your child until the child is aware of the tics or if/when someone says something about their tics to them.  My problem with this approach is that even the most open communicative children don't tell their parents everything.  They may notice their tics a long time before they mention it.   Also, I think it is important for them to feel comfortable or at least have a strategy for what to say to people before someone says something to them.  Kids often fill in the blanks to things that they don't understand.  For instance, a child might notice the tics but not say anything because they think if mom and dad (or guardians) aren't talking about it, it must be really bad- maybe I'm crazy- maybe I'm really sick, etc. etc.   My own son thought that there was a limited amount of movements a person could make in their lifetime.  Since he was making so many now, he figured he would probably be paralyzed by the time he was an adult.  While it doesn't sound logical to me, it made perfect sense to him.  He worried about that for quite a while before he finally asked me about it.

 

When is the right time?

This is a very individual decision.  Every child is different.  What is right for one child, may not be right for another.  It is my opinion that it is never too early to talk to your child about things that directly impact them.  As soon as you know your child has TS or has tics, it is a great time to talk about it as long as you, the parents/guardians, have come to terms with a diagnosis.  The worst thing would be to talk to them when you are upset.  Before you have your talk, be sure you are calm and collected. 

 

How to I explain it to him/her?

It depends on their age.  Considering that most children are diagnosed between five and eight, I am going to discuss it in terms of that age.  I think the best way to approach it is in a direct manner.  There are many good resources on our page about Teaching your Class about TS.  Most of these can be adapted for telling your own child about TS.  Here is one example of how to tell a child about TS:

  Start by reading My Friend Ben and then start a discussion with your child.  "John you may have wondered why we took you to the doctor last week.  We took you because we noticed you make a lot of movements and sounds (you may want to give a couple of examples of your child's tics but don't over do it).  The doctor we went to is called a neurologist and he sees lots of kids who make these movements and sounds.  He told us that you don't have complete control over them and they are called tics- just like in the book.  Having these movements and sounds- like you have-is called Tourette's Disorder.  It doesn't mean there is anything wrong with you and you aren't sick.  Lots and lots of kids have tics.  Some just have more tics than other kids.  You didn't do anything to cause your tics and there is NOTHING wrong with having tics, we just want you to know what they are so you don't feel upset about them.  Dad and I want you to know that if you have any questions about the tics, please ask us.  We will always be available to answer your questions.  We love you very much."  Be sure you have some answers to basic questions but don't be afraid to say, "You know, that is a good question.  I don't have an answer right now.  I'll look into it and get back to you."  Also, if at any point you have told your child to stop something that you now believe to be a tic you can add something in there about it.  For example, "Remember when you kept clearing your throat and I kept telling you to stop it.  You said you couldn't and I told you to stop it anyway.  Honey, that was a mistake and I'm sorry.  I didn't know it was a tic and that you really couldn't help it.  It must have made you feel bad and I would never make you feel that way on purpose."  It made my son feel better that I validated how that made him feel.  Of course, you would modify this to fit how you speak and what you are comfortable with. 

 

Avoid using judgment words like, "Your tics might not be as bad as you get older."  Instead try saying, "Your probably won't have as many tics as you get older." The important thing is that your child feels supported.  Your child needs to know that they did not cause the TS and there is nothing "wrong" with them.  I did want to mention that I make it a point not to tell my son things like, "Your tics aren't a big deal."  I understand the desire to make children feel better by saying things like that, but he is the one that has the tics.  I really can't say that they won't or shouldn't be a big deal to him.  What I can do is show him through my actions that they aren't a big deal to me and they don't change the way I feel about him in the least.  I can make sure he knows that he is loved and supported.  Hopefully, he will come to the conclusion on his own that his tics aren't a big deal and learn to deal with comments from other people in a constructive way.   Sometimes, our actions say more than our words.  I also want to say that it is absolutely normal to feel annoyed by the tics from time to time (especially when we are tired or frustrated already).  I have heard from moms who feel guilty that the shrieks and clicks are driving them nutty.  Don't feel guilty, it is natural.  Give yourself permission to leave the room or take a break.  As long as your child doesn't know that you need a break from the tics and you don't lash out at your child in frustration, there is no harm done.  This is where a supportive spouse, partner or friend can help tremendously.  It isn't always easy but you can get through it.  I know I have made mistakes and I have apologized to my son many times.  Don't be too hard on yourself.   You can get to the point where you are comfortable with TS.  We have gotten to the point now where our son will joke about his TS and come to us with concerns. 

 

My child is refusing to talk about his TS with us.  He says he doesn't have it. 

What can I do?

This happens mostly with adolescents but can also occur with younger children.  The last thing any child wants is to be different from his/her peers.  It is hard enough being an adolescent without having to deal with TS too.  Sometimes, statements like this point to a bigger problem (like depression, anxiety, etc.).  In those cases, outside help is key.  However, in cases where it is just denial, I think what is important is to remember your child doesn't have to talk to you about it (that is something he/she has control over).  However, as parents we can talk to them and hope that when they need us they will come to us.  I know of one person who handled this situation so wonderfully that I wanted to share it with you.  After several episodes where this mom tried to talk to her son only to have him blow up at her, she told him that he didn't need to have a discussion with her but he did need to sit there and listen to what she had to say.  She told him that she understands having TS is very hard for him and he doesn't want to have it.  She then told him in a nutshell what TS is (see our FAQ page) and gave him examples of some of his tics.  She explained that most likely his tics would decrease as he got older and he had every chance at being a successful adult.  She told him that she and his father were there for him to answer any questions he might have and would always support him-even if he didn't want their support.  He stormed off in a huff saying he didn't have a clue what she was talking about and she knew nothing.  It was a couple of weeks later that he came to her on his terms and they had a nice long talk about TS.  She had planted the seed of understanding.  It just took a while for him to decide to accept her help.   Sometimes, leaving a brochure from the TSA or some other TS information, in their room is helpful too.  They might not want to talk to you about it or let you know they are interested, but if you leave it where they can view it without being seen, they may just pick it up and read it.  Remember, as hard as this is for you, it is much harder for them!  

 

 

My child's siblings are saying things to my child about his/her tics. 

How do I handle that?

 

Again, this depends a lot on how you choose to parent.  I am not saying there is one right way.  However, one way that we have found effective is to start by explaining to the siblings that I know it is hard for them to understand their brother and I know that sometimes his tics can be annoying.  As an illustration, I tell them to try and stop blinking.  The moment they blink, I say, "Stop it."  I repeat that several times.  Then I say that it is just like that with their brother's tics.  Can they imagine if people kept telling them not to blink but they just couldn't help it.  Now imagine if people made fun of them for blinking or told them they were annoying when they blinked.  It would make them feel so bad.  I then tell them that their brother has one place in the whole world that he can feel safe and that is in his own home.  I will not tolerate any making fun of tics or telling their brother to stop.  If the tics are bothering them, they may get up quietly and leave the room.  Also, if they ever have any question about their brother's TS, they can quietly come to us and we will answer their questions.  They will never get in trouble for having questions.  Please note that I approach them in a supportive way and try to let them know that I am not angry with them but their brother needs their help.  Some siblings of other TS children have said, "Well, I can't help telling him to stop."  In my opinion this is not acceptable because neurologically they can help it.  However, you also have to be fair to the siblings.  For instance, it really isn't fair to little sister if she is watching TV and big brother with TS comes into the room and starts making loud vocal tics so she can't hear.  In this case a gentle redirection or discussion with big brother might do some good.  I prefer the redirection method for most younger kids.  For instance, ask big brother if he would like to help you with something, play a game, etc.  

 

As I said above this is only opinion.  Hopefully, it will be of help.

 


 

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