Parenting a child with Tourette Syndrome

Learning that your child has Tourette Syndrome can be tough.

Growing up with Tourette means that I have a very good understanding of what it is like for a child. I was nine when I was diagnosed, and tics were present throughout my teens, twenties and now thirties.

Please note: I cannot give professional advice, but instead first hand experience of TS as a sufferer. I do hope that you find value in this post and that your parenting benefits as a result.

It is hard to know what is ‘normal’ for a child

I was diagnosed at the age of nine.

Did I have tics before this? Possibly. But because everything is new to a nine year old, it is hard to know when something is abnormal.

I was aware that I did some strange things my friends did not, however I didn’t have the ability to consider anything like a neurological disorder.

Sally used to pick her nose. Mike used to pretend he was a train.

I would touch the floor and shout ‘cool!’ and random times.

kids playing in a field

Every kid had a ‘thing’. How would I know my thing was Tourette’s and not simply children being children?

This is why I was lucky to have parents see something that was not quite right. They had me looked at by a specialist.

Parents, have your child assessed if something seems abnormal!

I really, really want to shout this from the rooftops.

A hard truth in life is that although you may be closer to your child than anyone else, this doesn’t mean you understand their behaviors better than anyone else.

I have read too many heartbreaking stories. Stories of children not being treated for tics, instead being punished for them and being told they are ‘putting them on’.

Stories of rejection and isolation.

I posted one of these stories onto my blog, you can read this post by K here.

Sculpture of kids outside of Liverpool St Station, London

Seeking advice is so important because the parent/child bond at this stage of life is vital. If a child feels neglected or does not get the relevant help they need, they will realize this at some stage.

Mental health needs to be an absolute priority if we want our child to grow up feeling loved and supported as well as healthy.

It could be as simple as speaking to a teacher

My parents noticed my tics and had me seen by the schools psychologist. Being a nurse, my mum was aware of TS and the psychologist agreed this is what he believed it was.

Between 1999 and 2001 I visited various specialists, organised through my family GP.

After a couple of visits, a neurologist diagnosed it as ‘Tourette’s syndrome in association with obsessive compulsive tendencies’.

a snippet of my diagnosis from 1999
From a letter sent from my neurologist to the family GP- 16th April 1999

Speaking to the Head of the school opened the doors for advice and further support.

And this was 1999! Many improvements have been made since then, both in person and online.

a mother and child embrace

There is no harm in seeking advice.

However, there can be A LOT of harm as a result in not seeking advice, or taking a ‘parent knows best’ approach.

Unless you are a specialist on tics and tic disorders, please, seek professional advice.

There are many different ways to treat tics

Don’t worry about your child being forced to take medication.

There are many different factors that can improve tics, and different things work for different sufferers.

I did take medication for TS and ADHD, however this was after various family visits to specialists, and I had a say. This did help improve my condition and I came off them when I wanted to.

Changes in diet have helped me greatly, such as cutting out sugar and caffeine. Not eating too late at night either.

donuts in a container ready to be eaten

Again, specialists will provide more advice, but it is down to the family to see what works and what doesn’t. You can always adapt and change things as time goes on!

Find something they love doing, and watch the tics fade!

Concentration has helped my tics to reduce significantly.

The thing is, I find it VERY hard to concentrate unless the task is stimulating or fun.

So although it may be difficult to find something your child will sit still for, when they do it can be amazing.

a child plays piano

Help your child to find what they love to do.

They will do a lot of running around, however something will catch their eye. And for so many kids, that short attention span is replaced by hyper-focus and creativity.

If they are open about things they enjoy, make the most of this and support them in that thing.

Many TS sufferers are very intelligent, creative people.

Make the most of this wonderful opportunity and they can very much excel in something great.

Prepare for the highs and the lows

Having tics can be draining, both emotionally and physically.

Some kids with tic disorders are more prone to anger. This is alongside, or because of, co-existing conditions.

Common co-existing conditions are OCD, ADHD, and anxiety/mood disorders.

a sad child sits alone on top of a hill

Alongside TS I was diagnosed with attention deficit hyperactivity, as well as obsessive compulsive tendencies. I have also suffered from anxiety and bouts of depression.

Another reason why it is so important for a child to get assessed is because another co-existing condition may make tics worse, or could be more of a problem.

Even in adulthood I am trying to unravel these conditions and find what works best for me. It is a long road, but progress can certainly be made.

Listen to your child and validate their feelings

For the best possible start in life, children need to have their feelings acknowledged and addressed.

I was very fortunate to have loving, concerned parents that addressed my tics at an early age.

For that reason, I had a much better understanding of myself going into my teens and twenties.

I had moments of anger and rage, I also had periods of anxiety. But as a family we knew where this was coming from.

Understanding that these feelings are normal, especially for someone with a neurological disorder, is key.

Parenting a child with Tourette Syndrome isn’t always trying to understand what it is like to be a child with TS. It can be to simply listen and let them tell you what it’s like.

After all, your child knows better than anyone.

Many countries provide support for Tourette Syndrome.

Tourette Association of America provides a list of these countries, and help in the USA can be found on the website itself.

To see the international list, please click here.

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