Swearing in restaurants, ‘acting up’ – why I wouldn’t change my beloved teenager with Tourette’s

As a mother, I find myself icing bruises on the back of her head and tending to wounds caused by her stabbing herself with a pencil – yet other parents still tut and eye-roll, writes Katy Daly

My teenager is just like your teenager. She is clever and creative, hormonal and hilarious, adorable and kind. She also has Tourette’s (Getty Images/iStockphoto)

Picture this: a family is seated at the table next to you at a busy restaurant, celebrating a birthday, when you suddenly notice that one of the teenage children is pouring ladles full of ramen on to the table, while her parents seemingly allow her poor behaviour.

Next, she starts banging on the table, calling the other diners goers the “c-word”, shouting that she hopes they “all die”.

Perhaps you have seen something like this. Perhaps you have wondered why any child would behave that way. Why the parents seem too meek in trying to stop it. Perhaps you’ve wondered what on earth could be going through their heads.

As a parent of a child with Tourette’s, I can tell you – because this happened to me, on my birthday, when out with my family.

I felt enormous sympathy for my 14-year-old daughter, Willow, who had all eyes on her for reasons she couldn’t control. I watched her cheeks burn after each expletive, spat out with both embarrassment and shame. I felt terrible for my fellow diners, who were perfectly entitled to enjoy a meal without being disturbed.

I felt awful for her 16-year-old sister, who would once again have to take a patient back seat. I felt the judgmental eyes of other parents who shared tuts and eye-rolls with each other, clearly assuming this was the result of poor parenting and a lack of discipline.

I also felt sorry for myself, knowing this would be yet another meal I would eat from the takeaway containers at home, because we would have to leave.

The thing is, my teenager is just like your teenager. She is clever and creative, hormonal and hilarious, adorable and kind. And she can be a real pain in the behind.

But she also has Tourette’s.

So, what is it like parenting a teen with Tourette’s? For our family, it continues to be a bittersweet whirlwind of research, worry and advocacy – supported by the amazing work of Tourettes Action. It isn’t easy, to say the least – and it’s tempting to imagine that life would be easier if we could just remove this for her, and give her a simpler time.

But Tourette’s isn’t a passenger to ditch on the side of the road – this is who she is, and I wouldn’t change her even if I could.

Tourette’s is a neurological condition that remains greatly misunderstood. It is often seen as the “funny, swearing condition” that is still the punchline to many a joke. The truth is that coprolalia (involuntary swearing or saying inappropriate things) only affects about 10 per cent of people who have Tourette’s – and a diagnosis of TS can only be made after a year of presenting both motor and vocal tics.

This is what it is to parent a teen with Tourette’s: it’s icing bruises on the back of her head after she’s repeatedly launched herself at a wall. It’s tending to the scratches on her arm, caused by constant stabbing with a pencil. It’s countless calls, appointments, multi-agency meetings and specialist dental appointments (where she is treated under gas and air, because she can’t sit through it otherwise).

It’s rubbing her back as she sobs into a pillow because she’s so tired and her neck aches from hours of painful jerking tics. It’s fending off accusations of lying, or faking for attention, from other children and even teachers. It’s not knowing what to say when she asks why this is happening to her.

It’s collecting her from school early every day, due to hours of sustained tic attacks that cause her physical pain and mental distress – including a time when she destroyed a room full of exercise books and an incident in which she accidentally cut a teacher’s head after launching a book in her direction.

One time, Willow was in a shop to spend her birthday money on art supplies (art being an effective tool to help her focus and to soothe her anxiety) when she had another tic attack.

She beat her chest, over and over, and yelled out words you would only hear after the watershed. As she did, a smaller child became frightened and her mother – understandably confused and eager to protect her kid – scooped her up in her arms to retreat, shooting Willow looks laced with judgment and admonishment. She didn’t know that Willow was just as distressed as they were. Moments later, she collapsed in my arms in floods of tears.

On another occasion, at a local shopping centre, she spotted an armed police officer and dropped to her knees and exclaimed how she “needed drugs”. What may have seemed amusing induced a moment of sheer panic in me – would police officers carrying firearms recognise the difference between a child suffering a tic attack and someone acting as a threat? Would they take action – not for her, but against her?

The issue with Tourette’s is that it is a moveable feast: no two days are the same and overcoming tics can become like a game of Whac-a-Mole – just when you think one has disappeared, a new one pops up in its place.

There have been some damaging recent claims about Tourette’s being a trend, a TikTok phenomenon and teenagers “catching” the condition off each other. As parents, this hurts. You can’t help but wonder if you’ve kept your child safe enough, online. You can’t help but blame yourself.

But the reality is right in front of me: my daughter cannot “control” her behaviour, even though her tics can be harmful, disruptive – even embarrassing. In our family, we have learned to disarm their power and curb the inevitable disruption by laughing with her. Willow calls her tics “Gerald”, and it’s OK to joke that Gerald is a bit of a knob, sometimes. Tics can be funny – but Tourette’s is not a joke.

Tourette’s Awareness Month ended this week. But I wish we could all carry the same awareness and compassion forward, all year round, to families like mine.

What I want to say to those who see fit to “shame” me or my child is this: all of us carry pain and worry and trauma. The only difference is that Willow has a harder time hiding it than the rest of us. It bursts from her like fireworks. She doesn’t mean to startle you or upset you.

My teenager is just like your teenager. She needs patience. Kindness. Compassion. Love.

And so do I.