In Their Own Words

Next Thursday at 9pm ITV will air a programme following the lives of three children with Tourettes. The children are all being treated at Great Ormond Street Hospital’s specialist Tic Clinic. The programme’s called Kids with Tourette’s: In Their Own Words and I’m looking forward to hearing their perspectives on Tourettes. But I’ve also seen a number of brilliant videos this week all of which show that children with Tourettes don’t have to be on TV to get their message across.

I’d like to introduce you to Spencer, Leo and Jack, each of whom has created an amazing video explaining their tics and experiences. It took me years to develop the language and confidence to talk about Tourettes, and when I eventually did it made my life a lot easier. I found hearing these boys speak so thoughtfully and eloquently, very moving and heartening.

All parents worry about their children’s futures. But I know that for a parent whose child has been recently diagnosed with Tourettes the fear for their future and what they might face can be overwhelming. I hope that seeing other children speaking confidently and articulately about their lives will help ease this fear.

I’ve written before about the advice that I’d give to a parent raising a child with Tourettes, but I’ll share it again here:

• Try not to worry about the future too much – making sure your child feels comfortable is much more important.
• Swearing tics aren’t the end of the world.
• Laugh if tics are funny and allow other people celebrate the humour too
• Being open with your child and with other people may sometimes feel tough, but it’s much better than risking your child feeling their tics should be kept secret, or that they embarrass you
• Look for ways to support your child to feel confident about explaining their tics
• Many aspects of Tourettes are a mystery, so expect to be confused
• Have high expectations of other people and if they don’t meet these, challenge them
• Talk to other people with Tourettes and to other parents of children with Tourettes. You can do this on Facebook groups, forums and at group meetings
• The most important thing in managing the challenges presented by tics is the love, support and understanding of family and friends
• Pop the SafeMode on and show this site to your child

If you’re a parent whose child has only recently been diagnosed with Tourettes, I’d add the following:

• Read up on Tourettes and learn as much as you can, but remember that it affects individuals very differently and there’s no way of predicting how your child’s tics will evolve.
• There are many ‘miracle cures’ on the Internet – but please do be wary about paying for expensive products or services that promise to stop your child’s tics.
• There are many support organisations that may be able to help you – do get in touch with them if you need to. Here’s a bit more about a few which may be particularly useful:
Tourettes Action who have a great helpline
The SEN National Advice Service run by Contact A Family who offer advice on school issues
The Disability Law Service who provide legal advice to disabled people and their families
Kidscape who offer advice and support around issues of bullying
Cerebra, a charity for children with neurological conditions – they have a brilliant grant scheme and Sleep Service
• Don’t be afraid to ask questions – there are no stupid questions when it comes to Tourettes
• You’ll sometimes feel alone but you don’t need to be. You and your child are part of a dynamic community made up of people with Tourettes and their families. If you need support, just ask

More and more people are speaking up to increase understanding of Tourettes, dispel myths and make a better future for everyone living with tics.

One response to In Their Own Words

  1. bobcorrick says:

    Thank you Jack for explaining what it feels like to hold in a tic, I understand a bit more now.

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