Dispelling the Myths
Tourette Syndrome is a Neurological Condition not a mental health condition.
Only around 10% of children and adults with Tourette Syndrome have the obscenities (swearing) part of TS.
TS is a mixture of both involuntary movements and noises that have been present for over 12 months.
Tics are just the tip of the iceberg, the condition runs far deeper than most people understand.
People that suffer with this condition are just the same as everybody else in the world they just have a few extra movements and noises.
We are a family of 4. There is me – Mum, My husband – Dad then our beautiful children Spencer 10 years old and Lewis 6 years old. Both our children have Tourette syndrome.
Spencer developed tics at age 7 but looking back we can now recognise he had tics from as young as 18 months old. Lewis started ticing at 5 years old and was diagnosed with Tourette’s just a few months back.
Spencer has “Coprolalia” which is the obscenities part of ts, Lewis has shown no signs of coprolalia at the moment.
This condition is one that is very misunderstood in the general public and it seems to be one where people think it is still OK to judge and mock and have no thought to the pain they cause by judging and mocking.
TS will typically have co-morbities that run alongside the condition for example Spencer also has traits of asd, adhd & ocd. On top of this he is diagnosed with enuresis, dyspraxia, dysgraphia, anxiety and migraines all making up part of a wider neurodevelopmental disorder.
His motor (movement) tics can vary from a simple eye blink to falling to the floor in a full body tic (this looks similar to epilepsy but it’s not as he remains fully conscious and aware). His Vocal tics can vary from a tiny squeak noise to long complex sentences. A frequent tic at this present time is “Mother F/*– eat your soup with a fork”. There are no rhymes or reasons for the tics contents they can be anything that you have seen or heard consciously or unconsciously throughout your whole life. Spencer used to tic “I’m a prima ballerina” and believe me a young boy shouting that is not something he was particularly pleased with. He will also tic sexually inappropriate things which leaves him mortified (He was taught sex ed’ in school last year).
My children both attend main stream school and are both very lovely natured, they would do anything for anyone. I think Spencer’s kind nature is what made it so easy for us to distinguish between what was Spencer and what was Tourette’s in the beginning.
We have had nights where his tics would not let him sleep and he would have rage attacks. One period of time saw this carry on for 4 months, every evening into the night for hours and hours leaving us all drained and exhausted. It came to a head with us rushing him to hospital where he was prescribed diazepam to try and relax his body. Following this we researched and developed a technique of stimulating the 5 senses over a set period of time in the evening in an attempt to disrupt the chemical reactions happening in his brain. In time this worked for us and still does.
Lewis at the present time has mild tics in comparison to his brother, these involve eye blinking, throat clearing, shoulder shrugging, sniffing and biting as well as other facial movements. This is where chewigem came in for us. The chewy thingy’s (as we call them in our house) serve a practical purpose on many levels. They are used as a fidget toy to hold in your hand when your hand tics are bad or you feel anxious, they serve as a chew to ease anxiety and to stop biting. They serve as an object to bite if you have a bite tic so you don’t harm yourself or others.
Lewis would come home from school with his clothes soaking wet and would constantly have sores on his face, sniffles and colds. He was unable to move forward in martial arts because his sleeves were permanently in his mouth and he couldn’t release his bite to carry out a move.
We see the beginnings of huge anger and rage issues within Lewis as well as general hitting. We cannot tell if his hitting is part of a tic or heightened emotion confusion in his brain, or indeed part of another condition that has not been diagnosed yet.
Going out can be hard for us and we all have to put our “Game Face” on before we leave the house. It’s not my children’s conditions that make going out hard for us it is everyone else’s reaction to our family.
For the first 3 years we had very little in the way of support and we struggled as we were constantly being fobbed off and passed from one place to another.
We are a strong unit and Tourette’s just made us stronger. We decided that no family should have to go through what we have been through so, with the backing and support of Tourette’s Action (the UK’s Tourette’s Charity) we set up an Oxfordshire Tourette’s Action Support Group. This has been running for a year now and has proved a huge success within Oxfordshire, Buckinghamshire and Wiltshire.
Our families’ mission is to educate and broaden people’s minds on Tourette’s. To dispel common misconceptions and Myths surrounding the condition and to open eyes and understanding to the condition allowing our fellow Tourette Sufferers both now and in the future to live a life they deserve to live, without discrimination, judgement and desperately low self-esteem. We want to put ourselves out there to share our experiences and show other sufferers the options available to them.
For further information please look at the website
Tourettes Action Helpline number
0300 777 8427
Huge Thanks to Hayley for this guest blog.
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