Kiwi father and son reveal what having Tourette’s is really like – New Zealand Herald

Think of Tourettes and you might think of involuntary swearing, gestures or noises, often portrayed in pop culture as something to be made fun of. In reality, only 10 per cent of people with Tourettes have the swearing tic, coprolalia. In New Zealand, one in 100 young people live with the neurological disorder and the stigma that comes with it. Here an Auckland-based father and son both living with Tourettes explain what its really like, and what needs to change about the way its perceived in New Zealand.

When Chris Henderson was 9 years old, a GP prescribed him harsh antipsychotic medication and told him to stare into a mirror to see how crazy he looked.

It was 1987 and Henderson had just been diagnosed with Tourettes syndrome. Hed been experiencing some of the signs since he was as young as 3 or 4 years old, such as eye rolling and motor tics.

When youre 9 and youve got a doctor telling you that, and youve got a mum and a dad and a sister that care and you dont know what to do except stare in a mirror, you kind of have to figure it out yourself, he tells the NZ Herald.

Now 46, hes the founder and CEO of Pita Pit New Zealand and a father of three. But ever since his diagnosis, Henderson says, its still always felt like I couldnt talk about it, because of those early years.

Growing up, his friends knew he wasnt weird or odd for having Tourettes, but during his intermediate and high school years, the bullying became really hard.

His tics havent gone away or changed over time. Im probably able to manage them slightly better as an adult, Henderson says.

The same triggers are nervousness and anxiety, pressure, tiredness. And so when I feel any of those symptoms, my tics flare up a little bit. When Im relaxed and in a really pure place of happiness and contentment, they tend to subside.

After his own horrific experience being medicated with haloperidol - which is also used to treat symptoms of schizophrenia and bipolar disorder - he says, Theres not a direct medical fix, in my opinion, for Tourettes.

What does help is general wellbeing; a balanced diet, exercise, and support from family and friends.

Two of Hendersons three children, including son Ryder, 11, also have Tourettes. Asked whether his own experience has helped him parent his sons living with the condition, he says its actually the other way around.

To tell the truth, my kids talk about it better than I do. They really do, he shares. But for me, I still feel uncomfortable about raising it with them, because of the traumas I had when I was Ryders age.

So the beautiful thing about it is we just chat about it. We just chat. Oh, Dad, this is my tic today. My other son will come home and go, Dad, I had this tic today that was so weird or funny.

Its just a part of the brain thats wired a bit differently. Ryders just a normal kid, Im a normal father, business owner, husband, sportsman.

Henderson says its important that theres more research into the disorder, which isnt widely understood, as well as better awareness from the public and Government around just how many young people live with the symptoms today.

What needs to change for people living with Tourettes is just the normalcy of it all, just to debunk the myth that its wrong or weird.

I want people to know its okay. When you see someone with it, try and understand what it is and just dont raise it with them, just talk to them as a person.

Like his dad, 11-year-old Ryder remembers having Tourettes since before his preschool days. But for the intermediate school student, its completely normal.

When I get excited, nervous or anxious about something coming up or happening like a cross-country race or going on a trip somewhere new, my tics get bigger and some of them can give me pain, like in my neck, he explains.

Ryder takes medication for ADHD, which can make his tics worse and in turn, this can make it difficult for him to focus at school.

Going to this new school, Ive had some people being mean about my Tourettes and stuff, he says.

Dad Chris came to his school to do a presentation about Tourettes for his classmates, and Ryder says the kids are a lot nicer to him now they understand it better.

Most people just ask me why I make funny movements and once I tell them I have Tourettes, they are cool about it.

Having a family that understands Tourettes makes all the difference. It makes me feel way better not being alone. It makes me feel like I can tic in a safe space without trying to hide it.

He wants Kiwi kids his age to know that Tourettes is completely normal, and that if they ever see anyone with Tourettes getting bullied, they have to stop it.

I cant help it. You cant tell someone to stop because it is just the way our brains are.

Its Tourettes Awareness Month in New Zealand until June 15, and the Tourettes Association of New Zealand (TANZ) is looking to raise awareness and funds through its Swear to Make a Difference campaign.

The associations general manager Emma Henderson explains that the campaign is not designed to make light of peoples tics, but rather to draw attention to the fact that 90 per cent of those with Tourettes do not have coprolalia.

She is also Chris Hendersons sister, and knows all too well that the disorder is misunderstood by many.

We just want people to accept those that have Tourettes in their community and talk to people with Tourettes, find out what its like to live with and know that it is difficult, but were not your punchline, she tells the NZ Herald.

It is a spectrum and while some tics are manageable for those living with it, it can range through to a debilitating syndrome that really has a direct impact on peoples lives.

TANZ is the only charity in the country that supports those living with the disorder, providing resources and advocacy and running Camp Twitch for young Kiwis with Tourettes and their families, all without government funding.

The cause of Tourettes is uncertain, though research suggests genetics and environmental factors have a part to play, according to TANZ.

To find out more about Tourettes and the Swear to Make a Difference campaign, you can visit the TANZ website here. You can donate to TANZ here.

If you think you or someone you know may have Tourettes syndrome, the first step is to visit your GP, who can refer you to a specialist for diagnosis.

Bethany Reitsma is an Auckland-based journalist covering lifestyle and entertainment stories who joined the Herald in 2019. She specialises in telling Kiwis real-life stories, money-saving hacks and anything even remotely related to coffee.

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Kiwi father and son reveal what having Tourette's is really like - New Zealand Herald