As a mum of five, when my youngest started pulling funny faces, stretching his mouth out and running on the spot, I thought nothing of it. Sam was only five years old, and all children do silly things.
Plus, he'd been unwell on and off with bronchiolitis and croup since he was six months old, which had affected his breathing. I assumed these behavioural quirks were tactics to help him breathe more easily.
Other than that, he was a happy, smiley boy.
But just before he turned six, a bad chest episode turned into pneumonia.
The only treatment doctors said would work was a medication called Montelukast, a drug designed to calm symptoms of chronic asthma. Over a few days in hospital he was given a high dose, which we were warned would have some negative side effects, such as a change in mood and possible tics.
In Sam's case, these side effects were some very obvious - and very aggressive - tics.
The main one, which we noticed instantly, saw him put his hands to his mouth and go into a spasm. His whole body tensed and his mouth dropped open in a very uncomfortable position. The tic remains to this day.
Thankfully the medication worked and Sam's breathing difficulties were cured. But the tics stayed.
Because, we realised, they had always been there. Medication had just made them worse - and within a few months of being discharged from hospital, he received a diagnosis of Tourette syndrome.
I felt so uneducated and ill-equipped to deal with his diagnosis. The first thing I thought was 'Is he going to start swearing all the time?'
One of the many misconceptions about Tourette's is that all sufferers shout out swear words and cause embarrassment.
Controversy was sparked last week when Tourette's sufferer and activist John Davidson involuntarily shouted out a racial slur during the Baftas.
This involuntary use of socially inappropriate words, actions or written content is known as coprolalia. Yet it's estimated that only 10 to 20 per cent of individuals with Tourette's experience this.
Until the age of nine, Sam’s tics had all been ‘motor tics’, affecting his movement and facial expressions.
He was having four-hour tic attacks that left us with no choice but to take him to hospital, where gas and air was administered, though doctors could do little to help. It was awful for all of us.
But then his Tourette’s started to affect his speech, too, with Sam experiencing this so-called ‘coprophenomenon’, which means saying the most socially inappropriate thing at any given moment - be it swearing or calling a bald person bald.
His motor tics would also make him jump into traffic, or prevent him from eating, drinking and walking. This is the side of Tourette’s people rarely see.
We spent years battling through endless doctor's appointments and therapy sessions to get Sam the support he needed. As well as Tourette’s, he has been diagnosed with obsessive compulsive disorder (OCD), anxiety and sensory problems. For more than 90 per cent of Tourette’s sufferers, their diagnosis will be concurrent with other conditions.
Sam had initially been prescribed clonidine, a vasodilator (a drug that is used to widen blood vessels which is the go-to for Tourette’s), but it had only made his tics worse.
Doctors aren't keen on giving children anti-anxiety medication, but after three years of us advocating for Sam he was prescribed fluoxetine, commonly known as Prozac. While it doesn't cure the tics, it proved a life-changer for Sam.
Tourette's is a vicious cycle because his symptoms gave him anxiety - and anxiety made his Tourette's worse.
Sam, who is now 17, found secondary school was a big battle. Helping others to understand his condition was one of the main struggles.
I've spent so long trying to explain to people that verbal tics are not a reflection of the individual's feelings. Much of Tourette's is about anxiety, and the coprolalia comes from a fear of saying the wrong thing in a social situation.
People also assume that if you don't have complex tics such as coprolalia then your condition is mild. But any tic, big or small, can cause extreme anxiety and even chronic pain, which can be just as challenging as having to deal with the social fallout of verbal tics.
The Tourette's community - including John Davidson himself - provided our family with invaluable support, giving us advice and tips on how to cope. To this day John still messages Sam to check in and see how he is doing.
It's what led me to set up my charity, TIC Yorkshire (Tourettes Syndrome Inclusion in the Community), as I didn't want other families to struggle alone.
As in Sam's case, Tourette's symptoms usually begin to show between the ages of five and ten, with six the average age for formal diagnosis.
Often tics will start off mild, and can be easily confused for other conditions - or just childish fidgeting.
So what should you look out for?
Common early tics include excessive blinking, sniffing and head and neck movements. Signs can also include biting nails or skin, cracking knuckles, tearing things up and pulling at clothes.
Some early signals cross over with OCD tendencies, such as repeatedly organising toys or obsessing over specific games or TV programmes. Some can overlap with autism spectrum symptoms, including getting upset over changing routines and struggling with loud noises.
One thing I always remember about my boy when he was growing up is his total refusal to use cutlery. He was always spilling his drinks, too.
There might also be anxiety about going to school or struggling to make friends.
If you suspect your child has Tourette's, my advice is to reach out to a charity like ours. It's often the best way to get accurate information as well as support for your family past the point of diagnosis because it's a postcode lottery for how quickly a GP will be able to get you help.
But my main piece of advice for any parent worried about their child and Tourette's is to not focus too heavily on it. Tics can occur in any child at any time, even those who don't have Tourette's, and are more often than not a result of external factors such as anxiety. The more attention you give the tics, the more they will occur.
Discreetly monitor signs and keep a diary of what you have noticed. Our charity offers tic diary sheets to help you understand what you're seeing. Tourette’s can only be formally diagnosed after 12 months of continuous tics, so this will help you work towards diagnosis.
However, you should always contact your GP if you see tics, to rule out any other cause.
And remember: our children are amazing individuals, capable of achieving anything - they just sometimes need a little more support.