Tourette jokes 'not funny'
ABC Gold Coast, Australia
25 October, 2011
Chloe and Angela at their family home in Labrador on the Gold Coast (Candice Marshall - ABC Gold Coast )
Download an interview with Chloe and her mother Angela as they discuss their mission to quash the stigma associated with Tourette Syndrome: Tourette_Jokes_Not_Funny.mp3 (11.2 MB bytes) = Click Here To Download MP3
A mother-daughter team want to quash the stigma attached to Tourette Syndrome.
Eleven-year-old Labrador * girl Chloe Maguire-Boulle has Tourette Syndrome.
*Labrador, Gold Coast, Australia
The condition affects her mostly through facial and vocal 'tics'.
If someone notices Chloe making these involuntary sounds or movements she doesn't hesitate to explain, telling them "I have Tourette Syndrome, that's what I have, that's me."
Recently Chloe also made the brave decision to tell her school friends.
"They just treated me exactly the same as they treated me before they knew," Chloe says.
"One of my best friends said 'I have a funny finger' and another one said 'something's wrong with my ear' and that we were all different and no one's perfect."
She says her friend's reactions were a huge relief, as she had struggled to decide whether or not to tell them.
"I was worried that they would treat me differently but then when I heard that everyone else had something different I felt relieved. I was on the edge of not telling anyone but I decided if I told my best friends then they would know me for who I am."
Chloe also suffers from Obsessive Compulsive Disorder (OCD).
Stigma:
Luckily Chloe herself has not yet encountered too much of the negativity and misconceptions surrounding her conditions.
"The people I've told don't know about it so I can just tell them the good stuff about it and that nothing's wrong with it."
She is getting to her peers early, nipping common misconceptions and stigmas in the bud.
"Yeah I think it's important to tell people the right way and that it's not all bad stuff and Tourette Syndrome has a whole lot of different things to it."
Angela Maguire is Chloe's Mum. But while Chloe has so far managed to escape the jokes and taunts, harmful social attitudes are very obvious to Angela.
"Prior to this I guess I really never took notice of how people dropped these jokes, that are really not very funny, but when Chloe was diagnosed I became so acutely aware of how many people find it amusing," Angela says.
"It's just ridiculous and it's not funny, there's been some people pretty close that have said some things, just because they're uneducated, unaware."
Angela adds that there are also far too many wisecracks made about OCD.
"It's not a joke, it can really rule people lives, and poor Chloe, she's had a terrible time with OCD."
Diagnosis:
When Chloe was diagnosed 18 months ago Angela says "it was almost, I wouldn't say a relief, but it was nice to know that all the symptoms that we'd been seeing, it had a name to it."
Chloe's symptoms started to surface from a young age but got worse when triggered by outside stresses.
"Maybe three or four years ago when we first moved to the Gold Coast, that was a big stress for Chloe, and her tics, or what she called 'the jiggles' - where she'd just have this big body movement... and she was blinking, and doing these yawning movements," says Angela.
"I was actually saying 'Chloe, stop, you look silly, you'll get teased.'
But it soon became obvious that this was more than just a young child pulling faces, these actions were involuntary.
"It was my father who said 'you need to just leave her and not draw attention to that' and so we did but then without me giving her that attention we could see it was just getting worse and worse."
Angela's father (and Chloe's Grandfather) then encouraged her to investigate further.
"My father was dying (from misothylioma, a cancer caused by exposure to asbestos cancer) and Chloe was incredibly close to my Dad and he said 'you must find out exactly what this is' and so I went on that way and I found out it was Tourette Syndrome exactly a week after my father died, which was pretty emotional, so that was the journey of finding out."
When she first found out Angela says she knew nothing about the syndrome, except for the negative portrayals of it she had seen in movies and on television. But this changed when she was invited to a seminar in Brisbane, where a paediatric neurosurgeon was speaking.
"I'll never forget the first three hours of that seminar. I sat and I cried, there were tears falling out of my eyes the whole time. It was like he was up there just talking to me about Chloe, and it was the first time I felt someone understood.
"And then the second half of the seminar I just needed to get enough information as possible and from then on I've learnt a lot about Tourette and Chloe is old enough and switched on enough to be pretty interested in that as well."
When Chloe found out it was initially very hard for her.
"When I was diagnosed it was really difficult for me, I found my life really difficult. Some afternoons I would be crying on mum's lap, wishing I was normal. But now some things are challenging, mostly the vocal tics, but it's easier now. Like Mum says - I'm an expert at holding them in and knowing what I'm doing."
Although Angela says it's not as easy as Chloe makes it out to be.
"I have a very different slant on things than Chloe does. The mornings are especially horrendous for Chloe, she needs to have everything perfect and it's quite difficult ... getting everything absolutely perfect.
"And that takes a toll not only on Chloe, not only on me, but on her sisters as well, it's a tough ride for those who love someone who has Tourette Syndrome."
Though she adds that she couldn't be more proud of the way all her daughters manage.
"Amy and Grace, Chloe's sisters, they would just defend her and protect her to the end, as Chloe would for them... but it can be tough."
Chloe says her sisters understand her and accept her for who she is.
"Sometimes, like when we're watching tv or something, I might do some vocal tics and they wouldn't get annoyed at me because they know that that's me and they know it's ok - that's Chloe, she has to do them, she can do them."
Support:
After Chloe's diagnosis Angela soon discovered there was no support available here on the coast, something that would have gone a long way in helping her, Chloe, and the whole family.
So Angela has decided to fill the void by creating the Gold Coast's first Tourette Syndrome support group. She also hopes this group will help dispel the myths about the condition.
"I feel like I'm at that place where I could support other people that may be experiencing symptoms similar to Chloe, or even 'Coprolalia' which is the cursing and swearing. I feel like I'm in a spot where I can probably give a bit of support to those people."
The group will be run through the guidelines of the Tourette Syndrome Association of Australia, with Angela working as a volunteer, giving the association a presence on the coast.
"But I think it will have a life of its own and I just want to provide an opportunity for it to grow," she says.
"It would have been so good for me to have been able to go and sit and have a coffee with a bunch of people and say 'is this normal?'
"And now I know it is and I would like to sit and have that coffee with someone and say 'yes, it's okay, it's okay, and we don't need to hide."
Chloe adds 'I think it's great that Mum wants to help people, I think it's a good idea."
ABC Gold Coast, Australia
25 October, 2011
Chloe and Angela at their family home in Labrador on the Gold Coast (Candice Marshall - ABC Gold Coast )
Download an interview with Chloe and her mother Angela as they discuss their mission to quash the stigma associated with Tourette Syndrome: Tourette_Jokes_Not_Funny.mp3 (11.2 MB bytes) = Click Here To Download MP3
A mother-daughter team want to quash the stigma attached to Tourette Syndrome.
Eleven-year-old Labrador * girl Chloe Maguire-Boulle has Tourette Syndrome.
*Labrador, Gold Coast, Australia
The condition affects her mostly through facial and vocal 'tics'.
If someone notices Chloe making these involuntary sounds or movements she doesn't hesitate to explain, telling them "I have Tourette Syndrome, that's what I have, that's me."
Recently Chloe also made the brave decision to tell her school friends.
"They just treated me exactly the same as they treated me before they knew," Chloe says.
"One of my best friends said 'I have a funny finger' and another one said 'something's wrong with my ear' and that we were all different and no one's perfect."
She says her friend's reactions were a huge relief, as she had struggled to decide whether or not to tell them.
"I was worried that they would treat me differently but then when I heard that everyone else had something different I felt relieved. I was on the edge of not telling anyone but I decided if I told my best friends then they would know me for who I am."
Chloe also suffers from Obsessive Compulsive Disorder (OCD).
Stigma:
Luckily Chloe herself has not yet encountered too much of the negativity and misconceptions surrounding her conditions.
"The people I've told don't know about it so I can just tell them the good stuff about it and that nothing's wrong with it."
She is getting to her peers early, nipping common misconceptions and stigmas in the bud.
"Yeah I think it's important to tell people the right way and that it's not all bad stuff and Tourette Syndrome has a whole lot of different things to it."
Angela Maguire is Chloe's Mum. But while Chloe has so far managed to escape the jokes and taunts, harmful social attitudes are very obvious to Angela.
"Prior to this I guess I really never took notice of how people dropped these jokes, that are really not very funny, but when Chloe was diagnosed I became so acutely aware of how many people find it amusing," Angela says.
"It's just ridiculous and it's not funny, there's been some people pretty close that have said some things, just because they're uneducated, unaware."
Angela adds that there are also far too many wisecracks made about OCD.
"It's not a joke, it can really rule people lives, and poor Chloe, she's had a terrible time with OCD."
Diagnosis:
When Chloe was diagnosed 18 months ago Angela says "it was almost, I wouldn't say a relief, but it was nice to know that all the symptoms that we'd been seeing, it had a name to it."
Chloe's symptoms started to surface from a young age but got worse when triggered by outside stresses.
"Maybe three or four years ago when we first moved to the Gold Coast, that was a big stress for Chloe, and her tics, or what she called 'the jiggles' - where she'd just have this big body movement... and she was blinking, and doing these yawning movements," says Angela.
"I was actually saying 'Chloe, stop, you look silly, you'll get teased.'
But it soon became obvious that this was more than just a young child pulling faces, these actions were involuntary.
"It was my father who said 'you need to just leave her and not draw attention to that' and so we did but then without me giving her that attention we could see it was just getting worse and worse."
Angela's father (and Chloe's Grandfather) then encouraged her to investigate further.
"My father was dying (from misothylioma, a cancer caused by exposure to asbestos cancer) and Chloe was incredibly close to my Dad and he said 'you must find out exactly what this is' and so I went on that way and I found out it was Tourette Syndrome exactly a week after my father died, which was pretty emotional, so that was the journey of finding out."
When she first found out Angela says she knew nothing about the syndrome, except for the negative portrayals of it she had seen in movies and on television. But this changed when she was invited to a seminar in Brisbane, where a paediatric neurosurgeon was speaking.
"I'll never forget the first three hours of that seminar. I sat and I cried, there were tears falling out of my eyes the whole time. It was like he was up there just talking to me about Chloe, and it was the first time I felt someone understood.
"And then the second half of the seminar I just needed to get enough information as possible and from then on I've learnt a lot about Tourette and Chloe is old enough and switched on enough to be pretty interested in that as well."
When Chloe found out it was initially very hard for her.
"When I was diagnosed it was really difficult for me, I found my life really difficult. Some afternoons I would be crying on mum's lap, wishing I was normal. But now some things are challenging, mostly the vocal tics, but it's easier now. Like Mum says - I'm an expert at holding them in and knowing what I'm doing."
Although Angela says it's not as easy as Chloe makes it out to be.
"I have a very different slant on things than Chloe does. The mornings are especially horrendous for Chloe, she needs to have everything perfect and it's quite difficult ... getting everything absolutely perfect.
"And that takes a toll not only on Chloe, not only on me, but on her sisters as well, it's a tough ride for those who love someone who has Tourette Syndrome."
Though she adds that she couldn't be more proud of the way all her daughters manage.
"Amy and Grace, Chloe's sisters, they would just defend her and protect her to the end, as Chloe would for them... but it can be tough."
Chloe says her sisters understand her and accept her for who she is.
"Sometimes, like when we're watching tv or something, I might do some vocal tics and they wouldn't get annoyed at me because they know that that's me and they know it's ok - that's Chloe, she has to do them, she can do them."
Support:
After Chloe's diagnosis Angela soon discovered there was no support available here on the coast, something that would have gone a long way in helping her, Chloe, and the whole family.
So Angela has decided to fill the void by creating the Gold Coast's first Tourette Syndrome support group. She also hopes this group will help dispel the myths about the condition.
"I feel like I'm at that place where I could support other people that may be experiencing symptoms similar to Chloe, or even 'Coprolalia' which is the cursing and swearing. I feel like I'm in a spot where I can probably give a bit of support to those people."
The group will be run through the guidelines of the Tourette Syndrome Association of Australia, with Angela working as a volunteer, giving the association a presence on the coast.
"But I think it will have a life of its own and I just want to provide an opportunity for it to grow," she says.
"It would have been so good for me to have been able to go and sit and have a coffee with a bunch of people and say 'is this normal?'
"And now I know it is and I would like to sit and have that coffee with someone and say 'yes, it's okay, it's okay, and we don't need to hide."
Chloe adds 'I think it's great that Mum wants to help people, I think it's a good idea."
