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.