MY STORY: Tourette's is not a dirty word
WHEN you hear the words "Tourette Syndrome" or "Tourette's", like a lot of people you probably think of a person who has an uncontrollable urge to swear, which is seen as funny.
Or perhaps you think of videos you've seen on the internet of the woman who repeatedly says "biscuit".
But what you may not know is that these characteristics, while certainly symptoms of Tourette Syndrome (TS), are merely the tip of the iceberg.
They are a very minor part of what is a much bigger and more complex neurological condition that is estimated to effect one-in-100 children.
And while not a degenerative condition, it is one that affects quality of life and has no known cure.
I first suspected that our son Connor might have TS around five years ago when he was seven years old.
Until then I'd dismissed his repetitive hand movements, constant sniffing, hair flicking and other constant motion as just a typical kid who couldn't stop fidgeting.
However, when he began making odd noises such as squeaks and grunts, I began to suspect there was more at play than just a fidgeting, active child.
Also around this time, Connor began experiencing some problems at school, both in and out of the classroom.
In class he was regularly reprimanded for distracting other students with his inability to be quiet, while in the playground he was gaining unwanted attention from his peers for the peculiar habits and sounds he was making.
By now I was fairly certain that Connor was suffering from some kind of medical condition.
To test my theory, I asked Connor if he could stop making the noises and movements but he said he could not, that they came on suddenly and he had no control over them.
Like any anxious mother does (and probably shouldn't), I began Googling Connor's symptoms and saw a pattern emerging - all of the signs and symptoms were pointing towards Connor having TS.
I began researching TS because, like most, I had very little understanding of what the condition involved.
I also began to pay close attention to what I now knew were called the vocal and motor tics that Connor was making.
I joined the Tourette Syndrome Association Australia (TSAA) Facebook community page, where I learnt that Connor's symptoms were classic indicators of TS and very common among kids his age who have the condition.
From my research and through talking to other parents of TS kids, I knew that there was no cure for TS or TS specific medication to lessen the symptoms, so I saw little point in visiting a paediatrician to have Connor officially diagnosed.
However, at the urging of other parents of TS kids, I made the appointment and, as expected, Connor was diagnosed with TS.
In some ways this was a relief because we had a legitimate medical reason for his behaviour which enabled us to explain to his school principal and teacher why he was disrupting the class with his noises, impulsiveness and fidgeting.
Unfortunately, despite the confirmation of his diagnosis, school life for Connor did not improve and we watched our bright and outgoing child who had once loved school, become a child who at eight years of age no longer wanted to get up in the mornings and spoke of "no longer wanting to be here".
This was a very scary and unsettling time.
I've always taught my children not to run away from their problems but to face them head-on. However, in this situation we saw no other choice but for Connor to change schools.
He began at his new school at the start of Year Four and I can honestly say it was the best decision we ever made for him as the new school accepted his condition.
Each new school year I provide his classroom teacher with information on what TS is, and what it isn't. This has been instrumental in having his condition understood.
He has also made some wonderful friends who not only don't care that he has TS, but who "have his back" should anyone give him a hard time because of his tics.
While we've had success with Connor's schooling, home life with a child with TS is not always easy.
Connor's condition began with him displaying simple motor and vocal tics which classified his condition as mild and caused little or no disruption to our home life.
However, as Connor has matured, so too have his tics, which have increased not only in their regularity but also in their severity. This is characteristic for many but not always the case.
Typically, symptoms first appear mildly in early childhood (around ages five to seven) and increase as the child matures, often peaking around adolescence or puberty, which is where we are now at with Connor.
It is very difficult for an adult living with TS, let alone a child, to be able to control or repress their tics.
A specialist at a TS conference I once attended described it perfectly when they likened the condition to the brain having a faulty brake system. The sufferer receives urges to carry out the tics but the brain is unable to stop them - the brake system just isn't working.
In Connor's case he does a pretty good job of repressing his tics during the school day, particularly the coprolalia (the medical term for the swearing and inappropriate words or phrases which affects around 10% of TS sufferers).
However, this repression does come at a cost because the moment Connor gets home to his "safe" place, his body and brain relax and therefore he releases all the tension he has held on to all day.
This results in a high degree of tics including swearing, vocal noises, involuntary body movements and, most recently, a very unsettling experience known as a R.A.G.E (Random Anger Generated Episodes) and tics that cause self-harm.
In Connor's case he does this by repeatedly hitting himself in the head.
From observing Connor closely over time we can now usually tell when a R.A.G.E. is building and although we can't prevent it, we do try to lessen the severity of any self-harm by trying to calm Connor with deep breathing throughout the duration of the attack.
These episodes can be very scary and Connor has broken or destroyed many things that have been precious to him, including photographs, books and gaming devices. It upsets him that this happens and he is often very emotional after an attacks.
In addition to the motor and vocal tics, TS is almost always not a stand-alone condition. It is often accompanied by what are known as co-morbid and associated conditions which can include ADD, OCD, sleeping and learning difficulties, Autistic Spectrum Disorders, anxiety, depression and more.
For Connor, his TS is accompanied by sleeping difficulties, OCD and bouts of depression and anxiety.
It is heart-breaking to see my beautiful, talented and smart son live with this condition that has no cure.
I try very hard to be strong for him and to not let him see how it affects me, but sometimes the emotional toll it takes on myself and our family is overwhelming.
Having said that, there are lighter moments resulting from his condition.
Don't get me wrong, I would never wish this condition on any child or parent, however sometimes, when his coprolalia is in full swing and we are in the privacy of our home, my husband and I will share a secret smile at some of the words and phrases that come out of Connor's mouth.
If you can't see the humour in it, what's the alternative?
Going out in public can be a challenge when you have a child with TS as you never quite know what is going to come out of their mouth!
Usually Connor will try to repress his tics in public but we certainly don't expect him to have to, so to avoid any unpleasant situations, we've produced some cards that explain his condition and what behaviours you might expect to see or hear.
We've found this card also comes in handy when he's invited to birthday parties or sleepovers with friends whose parents may not know of Connor's condition. We simply hand them a card and it avoids any awkwardness for Connor to feel he has to explain his condition or behaviour.
One thing we have learnt through Connor's journey is that we are not alone. Through joining the TSAA we have met other families of children with TS.
There are support groups all over Australia, including Queensland and we've been fortunate to connect with a great group of TS families who regularly meet for informal get-togethers where the children can play with other TS kids with no judgment and the parents can share their experiences and feel supported by others who understand.
Our family recently attended a Queensland TS camp in Brisbane, where more than 20 families came together for three days to take part in activities and basically just have some fun.
A highlight of the weekend was the opportunity to meet and spend time with Adam Ladell, a TS sufferer and runner-up in The Voice 2016.
Adam is now 18 and an ambassador for the TSAA. He has had such a positive influence on many of the TS kids, particularly Connor, as he has shown that TS does not need to hold you back from chasing your dreams.
And Connor has big dreams. He is a talented musician, singer, soccer player and very intelligent.
Next year when he begins high school he will do so in an academic excellence program for gifted and talented children.
Nothing holds Connor back, not even his TS, which he likes to refer to as his "super power".
I have recently become a TSAA support group coordinator for the region and I encourage other parents with children with TS to contact them.
The TSAA can provide information on TS, including access to valuable resources such as educational materials for schools, group camps, conferences and support groups.
Finally, if you think your child is displaying signs of TS, see your GP to have it looked into.
I'm forever grateful that I took that step.