Tourettes

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Tourettes

I am a Child and Youth Care worker in a school.

We have recently admitted into Grade 6 a twelve-year-old boy who suffers from Tourette's Syndrome. He has tics and jerks, and makes sudden noises, and while the staff are careful to minimise the effects of this and to give support to the boy, it is very difficult to manage the reactions of the other children, ranging from fear and embarrassment to joke-making.

He is already starting to stay away from school. I would be very grateful for any advice and suggestions as to how we may be more helpful in this case.

Rosa
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Hi Rosa,

I believe that sometimes we want to make things normal by presenting like there are little to no differences between people.

I would have a day where each person has a chance to share something bizarre about themselves. Have a day when each person in the class can ask questions about the things they think are "weird", but know that it is not polite to inquire about. If the boy with tourettes is willing, invite him to tell the class a little what it is like for him to have it. Maybe (this is nothing more than an idea, don't try it without talking to others), perhaps others in the class can have a chance to "shake their sillys out" with the boy – try to shake and laugh out the stress, while all connecting on a level that says 'hey, this isn't so bad or weird after all'.

This seems to me to be a perfect opportunity to empower the boy, and even his classmates. "We are bizarre and cool people, hear us roar!"

I can't wait to hear what others have to say.
Maddy
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Sometimes the tics are exacerbated by the medication that they are on, so perhaps suggest that they be reevaluated.

It would help to explain to the school mates what exactly it is, and what they can expect, or watch out for. If you enlist the youth to help, you may get a better reaction. They will make jokes because they fear, or don't understand that it is a disease, like any other and will require their patience to help the youth.

Linda Windjack
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Hello Rosa

On a day when the child/youth with Toilette's Syndrome is absent, lets call him Thomas. Explain to the class room about Thomas and that there is nothing to be afraid of. Try empowering the other students to be like amateur mini therapists by supporting Thomas and helping Thomas to feel welcome. If necessary, maybe you can approach the principal and come up with some kind of incentive for the students as a reward for doing so.

Good luck and God bless
Joseph
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Hi Folks,

In regard to the grade six student with Tourette's syndrome, I would like to suggest an approach that a friend,who has a child with a serious seizure disorder, uses. She comes to her son's class at the beginning of the school year and shares his Life Book. This is a scrap book with pictures and stories from his life. She invites kids to ask her questions and she responds honestly. She emphasizes similarities rather than differences. This process normalizes her son in the eyes of his peers. In her case, her son has serious language delays and is unable to speak for himself. Your client may want to be part of the process.

Doug Estergaard
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Hello Rosa,

I was a mentor for a child fitting the description you gave. We spent 15 hours together every week for 18 months. I know that having a friend to talk to and to develop social skills with helped give him the self confidence he needed to deal with the embarassment and jokes he received in school. He also had frequent meetings with his teachers and parents and also had a team of clinicians working to achieve the best medication mixture and dosage for him. One suggestion would be to help his peers understand his condition, perhaps by making it a topic of discussion with some information presented. If he was able, having him speak to the class about it could be very positive.

His early adolescence was very difficult, but in his case his condition subsided by later high school. Hope this helps – good luck!

Quinn Wilder
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Rosa,

After reading your query I feel uniquely qualified to answer this question, not only have I been a Child and Youth Worker for years but I also attended grade 6 with a boy who had Tourette's Syndrome. I feel that the way my grade six teacher handled it not only worked at the time but as a professional has merits today.

Basically he prepped the student to get ready for questions, he then in terms that we could understand explained about what Tourette's was and then invited all of the class to ask the child questions. Once we understood we found it easier to ignore, also there will always be times that something your client does may strike one or more classmate funny but this will also decrease in time and is a part of growing up. Also has anyone spoken to this young person to ask how he is feeling about this, is he in fact staying away from school due to this? I mean he is in grade 6, has he never been insulted or made fun of before? What are some of his past coping strategies? Have you met with the family, parents to ask what they have felt worked best in the past?

Best of Luck,
Sara
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Hello,

I am a Child and Youth Care worker as well, and strangely enough I also have Tourette's syndrome and dealt with the same things growing up.

The best things that happened for me growing up, was informing the other students about tourette's syndrome so that they know why this child is doing what he does, when he tics. Another very important thing to know about Tourette's syndrome children is they need to be treated the same as any other student, but with some minor lee-way.

A great thing that worked for me was that the teacher allowed me, at my pyschologists request, to be able to leave the room and have a safe place at any time. It was very helpful for me to "ask to go for a drink or bathroom break" when i felt uneasy or just to go and release some of the tics. When it comes to exams and quiet projects it is very helpful for Tourette syndrome children or adults to have their own place to do these things, whether it be a resource room or an office where they can be monitored closely but still have space.

Time is a crucial aspect in Tourette's patients. They are constantly looking at the time and thinking that they are running out of time to do assignments and such, so time limits for tests are not a good idea at all. Let the student know they can have as much time as they need to complete something. Chances are they will not need extra time but they will also do a better job by not feeling the automatic need to rush.

The best way to teach the other children so that they understand it to some extent is by saying, " Jimmy's body sometimes has trouble telling him what to do, You all have a message center in your brain. If for example you want to bend your pinky finger your brain sends a message down your arm and into your finger telling it to move, but in Jimmy's case, sometimes his brain gets confused and accidently tells him to jolt his head or neck instead of bend his finger." It is also very important to tell the other children about "Jimmy" when he is not there, he should be doing something else.

Encourage the other children to ask you lots of questions and make sure that you can answer them or have someone there that can. No question is a stupid question. I really hope that some of this works. I have a lot of informative strategies etc., so please feel free to email me at my personal account for any other questions. I also have lots of resources and pamphlets and people I can talk to for you to help you. It is really important to me as well, for this child to feel that he belongs, this is one of the main reasons I decided to pursue Child and Youth Care counselling.

Thank you and Good Luck
Calla Telford
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Hi Rosa,

The Tourette Syndrome Foundation of Canada has a reference handbook Understanding Tourette Syndrome – A Handbook for Educators ISBN 1-896813-04-6.

Their email is tsfc.org@sympatico.ca website www.tourette.ca or you can call them toll free at 1-800-361-3120.

Mark Smith
Nova Scotia
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Hello:
I would like to bring to your attention a wonderful web page from a psychologist who works at CPRI (Child and Parent Resource Institute) in London Ontario. Ducan McKinley is a psychologist who has Tourettes Syndrome and has a lot of information you are requesting. Once you get searching through his site you will find valuable information to help both you and the school setting http://www.lifesatwitch.com/globe_mail.html

Good Luck
Kathy Westelaken
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Hi Rosa

I feel that the work you are doing thus far is beneficial, however, I feel that the reason that other children might not want to associate with this young person is probably that they are unaware of the "illness" that this young person has, maybe you could try and educate the other young people on what this young person goes through and experiences, hopefully by gaining this knowledge they will be able to support this young person and help him gain a sense of belonging, that way he will want to attend school.

Goodluck, regards
Uvika Bodasing
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Hi Rosa,

I had a similar situation in a school that I worked in and the thing that made the biggest difference was educating all the students in his class about Tourette's syndrome (explain this plan to the student with tourettes first, of course)

If the student is willing to share his story and experience with his fellow students as part of their education of this disorder he feels empowered, can answer their questions and in the process, can connect in a meaningful way with his peers (my student would wink and tell his peers that he had a license to swear!) For the other students in the class, the "weirdness" of what he does goes away as they come to understand it and this openness means they are more likely to behave in a supportive way with this student. Tourette's becomes just one more thing that makes people "unique" in the classroom. My student is now in gr. 12 and has great support from staff and students and is doing well in all aspects. It can be done – just draw back the veil of mystery and secrecy because we only fear what we don't understand (for the most part).

Good Luck
Dynell Forman
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Dear Rosa,

In response to your query on children with tourettes. Tourette’s is a disorder that takes a strong working group to deal with because there is no cure for the syndrome and dealing with the disorder is a working progress. For the twelve year old you are working with, at this point it may be beneficial to see things from his side. He is an early adolescent so in this time his development is critical. He may be feeling embarrassed and frustrated in school because of his distinctive identity. If he is not being accepted by his peers that he has to be surrounded by everyday then he may lack the ability to develop his sense of self worth. People with disabilities often isolate themselves from the discomfort they are subjected to in public environments.

Although he may be wishing to stay home from school there are things that can be done to help control his tics and boost his self esteem. As a youth care worker you can help him get involved in extra curricular activities such as sports with the school or other activities that may be of interest to him. Let him know that you will be there for him or explore the opportunities he has in getting a youth worker to spend one on one time with him so he can develop relationships with others. Explore other talents he may have and develop those talents by exercising them. Discover what other resources are in your community to help this boy deal with his ailment so he can develop his self esteem and be a part of his community. Help him understand that although he may be different than other people his age, he still has the potential to fulfill his dreams and become successful in his life.

As a youth worker, you should keep appropriate expectations in mind when dealing with this youth. Help him gain positive attention from others who may also be in difficult situations. It is also important for the teacher of the classroom to discuss with the children about the kind of situation and disorder that the 12 year old boy has and is dealing with. It should be emphasized that it is important to respect everyone, even those children with differences.

Morgan Wouters
CYCC Mount Royal College
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Dear Rosa

I am a Child and Youth Care worker and my own 13 year old son (grade 7) lives with Tourette's Syndrome. Some points from this experience –

From the responses you received I noted some really smart things to do. I would just like to add that one needs to remember that the child has to live with this for the rest of his life. Unless someone assists this child to develop skills to manage these situations, life will become and most likely already is really difficult. It also feels a bit late in the day for someone to only be noticing this now.

My son needed to learn what to say in certain situations. Some kids would ask him "What's wrong with you?" and he would say, "Not much, my brain is just telling my arm to move, when I actually don't want it moved." Or "My brain is giving my body messages to do things, which I don't want to do, and I can't really stop it." We tried to help him from quite a young age to talk about it openly and factually and not attach a label to it. He also learnt how to turn a blind eye to some sniggering comments – a good self-esteem can go a long way here and is essential to be able to ignore such comments.

My son has a healthy self-esteem because he excels in sport – find the things this child excels in and make it visible to others. Ask teachers to highlight this to the class as and when appropriate. He needs his self-esteem built as much as possible. Remember that he will not have you or someone else speaking up for him – he needs to learn to take control of situations. If the self-esteem is poor, this will be really hard. It is a long journey for him, and someone who understands Tourette's to some extent as well as his development needs to really get real close to him and help him develop the skills and understanding to manage these situations.

Something that helped my son was the understanding that he cannot change how others behave – one can try to influence it by changing one's own response in any given situation. This is a very difficult concept to grasp and integrate – but once my son got it, it helped him a lot. He now understands and can do this quite well considering his age. Adults are often the more difficult people for a child to manage – and teachers also can be very insensitive.

I had endless meetings with teachers every year. I would meet the new teachers in the beginning of a school year and explain in detail the situation and the expectation. I offered all the support I could give then and throughout the year. I would then brief my son as to their expectations and ours and talk about how he feels and what he thinks. This communication with him is essential – it gives him some sense of control over something. Some teachers managed it better than others – and generally the children in that class would manager it better. Children also copy adults – so if the teachers could model good responses to this child – it's very helpful. At one point he needed a permanent facilitator in the classroom to assist with writing, as the tics got so bad, he could not write anymore. We thought this would make it worse for him in class and that he would look a bit odd, but the teachers and facilitator managed it with great sensitivity (not preciousness).

I ask my child every day in detail about his school day – not only "so, how was school?", but rather, "how was maths today with ms smith?" or "what did you play during break?" "who did you play with during break?" "How did your oral go?" "Did you manage all the writing?" These questions allow the opportunity to deal with any possible stress caused by any situation.

I also massage him (back, neck, arms and face as it is where most of his tics are) about 4 times a week as his muscles often go into spasm from all the tension. Sport helps with this as well.

The upside of living with something like this, I have noticed with my son, is his advanced level of self-awareness at 13. It is quite extraordinary. He amazes me at how he can articulate his feelings, his understanding of his own behaviour and that of other people. He also has great compassion for people who suffer and are different from others – in whatever way. These are all strengths that I often make him aware of to show him that there sometimes are little gifts hidden in something which doesn't come gift-wrapped.

Sandra Oosthuizen
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Sandra:

Your story was amazing! You and your Son are very lucky to have each other. I have a 14-year-old daughter diagnosed with type 1 diabetes at age 5. I have a personal understanding for a health concern. I, too, was the parent meeting with the new teacher every September. Your story also had some very good parenting and communication tips ... nice work!

Thanks for the insight,
Sue Der Stepanian
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Sandra – I just want to act on impluse and say how much I enjoyed your contribution to this discussion. It's lovely and full of love.

Thank you.

Johnnie In Ireland
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Hi,

I am a student at Mount Royal College taking Child and Youth Care. I just wanted to commend those who contributed ideas to help others understand more about Tourette Syndrome.

So many people look at someone who has the involuntary ticks and think that there is something wrong with them. People in this country still have no knowledge of what Tourette's Syndrome even is. They see movies such as Deuce Bigaloo that portray people with TS as outspoken, swearing and almost violent tempered people. The wrong information is being sent out about the disorder.

You have gone in the other direction and thought of positive ways of relaying the message and information. Again, I am inspired to find out all about TS and what I can do in the future to be more proactive rather than listen to the stereotypes that the media and others are saying.

Lisa Matsuda
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Further to Rosa's query ...

As a second year student in the Child and Youth Care Counsellor Program at Mt. Royal, I to have learned a lot about different delays. I am currently completing my practicum hours at an elementary school with special needs children, and it has opened my eyes to a whole new view of understanding these children. I must admit that I too was once guilty of labeling disabled people with a stereotype, based on a lack on knowledge. I did not understand many disabilities, or what information I did have was often false. This was a result of general banter of peers before entering post-secondary, and what the media had portrayed to me. I am so glad that I have been given the opportunity to work with special needs children, and to be formally educated on different delays. These children and youth are utterly amazing, and suprise me with such wonderful talents every day. The world needs children that are this special.

Daniala Boschee

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