Sunday, 22 January 2017

A brief introduction to Tourette’s Syndrome

My Disclaimer!

Everything written here is my opinion and understanding from talking, watching, reading and listening to those with TS - mainly my daughter Charlotte - it’s not a medical opinion so please seek medical advice if needed!

TS is a genetic neurological condition named after Dr. George Gilles de la Tourette who first described the condition in 1885. Considering it was first documented so long ago there is still very little known about the condition. It is possible that as many as 1 in 100 children have Tourettes but many go undiagnosed as symptoms don’t have an impact on day to day life.

To be diagnosed with TS a person needs to have a vocal tic (such as coughing, sniffing, gulping, whistling) and a motor tic (such as blinking, twitching of face, jerking of limb) for a year. It seems many people start with mild tics in early childhood and these peak around the teenage years and have often almost disappeared by late teens, in other cases tics can increase very rapidly at any age and remain severe or just vary randomly over the years and months but there is no known reason for this. There is also no cure for Tourette’s Syndrome- medication may help though it is not specifically for TS but often for  mental health conditions. Sometimes medication can cause awful side effects which are often worse than the tics themselves and need other drugs to counteract them. It is also hit and miss as to whether the medications will work in each case so many choose to learn to live and manage their Tourettes  in different ways, this feels more ‘normal’ than being on mind altering drugs.

TS causes tics which are involuntary often repetitive movements, action, sounds, phrases, or words. In fact almost anything can be done as a tic from climbing, pulling hair, hitting, spitting, licking, inappropriate gestures, words and phrases. Often tics can be reactive to conversation and environment, stress and emotions and also there are impulsive tics causing the person to do dangerous or harmful things.

Tics can escalate into tic fits or tic attacks which resemble epileptic seizures and also rage attacks may occur where the person gets a build-up of emotions and is unable to control their anger or stop it- this is not aimed at anyone or anything and once passed the person does not often understand why it happened.

Tics may be so severe that people can become wheelchair bound, temporarily unable to speak or  unable to carry out normal day- to -day tasks. The condition waxes and wanes so you never know what will happen from one day, week, month or year to the next.

Why I’m writing a blog 

Tourette’s Syndrome is the one condition that is generally the most misunderstood – ridiculed, doubted and stigmatized.  As Charlotte was 16 years when she started with severe TS we understand exactly what behaviours are caused by her Tourettes and tics and know it is not her being a “naughty” child or disrespectful  teenager.  I read so many posts on Facebook groups about adults punishing children for bad “behaviours” and swearing when to me it is likely the child has no control - life is hard enough for kids with TS without the fear of being punished for something that is as natural as blinking or scratching an itch to us. Alongside Tourettes - Autistic Spectrum, Attention Deficit, sensory processing  and obsessive compulsive conditions are often  thrown in the mix - many children have a huge amount to deal with so unusual and difficult behaviours aren’t really surprising.  I’m not saying that all these children should never be disciplined but they need to be shown some tolerance and understanding - maybe this will help educate just a few. Particularly:

  • Those who think tics are bad behaviours that can be controlled if the child is correctly disciplined/punished
  • The people who believe a person with Tourettes says and does “rude” things as they think they can “get away with it”
  • Those that mock and laugh and bully
  • Adults that judge with sharp indrawn breath, eye-rolling and accusatory looks
  • Those that think a bit more discipline is needed and they wouldn’t allow that kind of behaviour/language  – obviously they would make a better job of  parenting a child with a neurological condition!
  • Those that get annoyed or irritated by the noisy or disruptive tics even though they don’t have to live with it or the pain that goes alongside it!

Everyone’s life is hard with day to day pressures and stress - with Tourette’s Syndrome (or any other difference) thrown into the equation it makes everything that bit more challenging for the individual and those that care for them - I just ask people to be kind and try to be more understanding. Most people come to accept their conditions as being a part of them and what makes them unique - it’s the actions and judgements of others that make it more disabling for many.

Why Tourettes and why me?

I am a mum who was thrown into an unusual situation just over 2 years ago - when overnight I became the mother of a daughter with Tourette’s Syndrome (TS). I’d seen documentaries about the condition and heard the mocking “Oh he swears so much he must have Tourettes!” but I could never have dreamed of the implications it would have on the lives of the whole family. As a single mum with 3 daughters it has had a huge impact on every part of our lives and I hope to write about some of the trials and tribulations as well as our achievements in overcoming the challenges that we face daily.

I am hoping through writing this blog I can help others living with TS come to understand the condition and the difficulties faced as a parent or carer. One of the most helpful things for me was to know I’m not alone trying to cope with having a child with Tourettes. There is little support from professionals and a considerable amount of misunderstanding from parents, families, teachers, medics and other professionals and it breaks my heart to see parents at the end of their tether for numerous reasons beyond their control while children often suffer and are sometimes punished for things they can’t help doing.
I also find it cathartic writing about it - it took about 18 months to get my head around my daughter's condition and our family’s change in circumstance, and is still difficult at times, so this is ongoing therapy for me, it’s something I have been wanting to do for a while and hopefully I can help others as I have been helped.