Coping with TS

You are a leader in a youth movement and one of your children has Tourette syndrome. Or maybe one of your co-leaders has this syndrome?

‘How do you deal with that?’, you may be wondering. Here are some concrete tips:              

A child with Tourette in your group

Open communication with your group and member: First of all, ask your member what they prefer: will the group be told about the tics or not? If so, in what way?

It can be nice to let your group know that everyone is different and some children's brains work a little differently, making sounds and movements they can't help.

Check regularly if other children understand and how the child with Tourette's feels in the youth movement.

Ask how the child prefers you to respond to their tics: most people find it best if you just ignore the tics and pretend the tics are not there. Then you just see the child. Some prefer you to be light-hearted and joke about it together from time to time. However, this is only possible in a safe atmosphere and if the person with Tourette's is really okay with it.

Inclusive activities: think about how to make your games inclusive for everyone. You are surely creative enough for that! A classic 1-2-3 piano might not be ideal for a child with tics, but maybe your version requires them to move as much as possible? Also think about how you will handle practical matters, such as sleeping at camp with a child who has loud noise tics. Be sure to discuss with the child and parents/carers what works at home. Perhaps the child has something to bite on that makes the tics less, for example.

More than just tics: Tourette's is often more than just tics. It can also be hyperactive, compulsive, anxious behaviour or sleep problems, for example. Don't punish a child for things they have no control over and ask parents/carers what the exact needs of this child are. Many children with Tourette syndrome, for example, benefit from predictability, a place to unwind or 'tic out', etc.

A co-leader with Tourette syndrome

Show that you are open to everyone by actively learning about Tourette's (you are reading this, so good job!) and working together to find what works best.

Dealing with tics: the same things as with children apply, mainly ask the person themselves how they prefer you to respond to them. Always ignore the tics, with an occasional dash of humour, etc. Also know that seeing and hearing tics can be weird at first, but in a lot of people it gets used very quickly.

Suggest helping to frame it to the group: it is often nice for the person with Tourette's if the whole group knows it from the first time and they don't have to explain the same thing a hundred times. You can offer to tell it together to make it less exciting. It may also be that they rather not tell your group members , that's fine too, everyone can make their own choices.

And above all: someone with Tourette syndrome is just another person you can have lots of fun with in the youth movement!

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^{Image: Kevin Erdvig}

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