May 15th through June 15th is Tourette Syndrome Awareness Month.
My family has been greatly affected by Tourette Syndrome. My son has tourette syndrome and every day that he has tics is a struggle. Dealing with the disorder is one thing that is hard. Even more complicated is explaining his behaviour to those who may have seen him have a bout of tics. The stress all of this while he is going to school and trying to have a “normal” life is exhausting.
On a daily basis I scour the internet for research news or new treatment methods for Tourette Syndrome. I do this for a number of illnesses, and it has become apparent to me, based on the insignificant amount of research activity, that more people need to become familiar with the disorder. Once their awareness is raised, hopefully they will join the cause and push for more research to find a cure. May 15th – June 15th is Tourette Syndrome Awareness Month. Watch for updates on this blog during the awareness month. Take a moment and join the cause.
Take a look at the facts about Tourette Syndrome:
- Boys and men show the symptoms of TS more frequently than girls and women. The ratio is about 4:1.
- There can be other conditions associated with TS, in particular OCD, ADHD, and Sensory Processing Disorder
- TS is a tic disorder. It is a neurological condition. It is not emotional in origin but it may have psychological consequences and effects.
- A tic is an involuntary movement (motor tic) or sound (vocal tic). Tics can be ‘invisible’ – intrusive thoughts or compulsive behaviours.
- Movements may vary from minor (eye blinking) to severe (complex movements of the whole body).
- Sounds may vary, from throat clearing to whole phrases.
- Phrases can be repeated, from whole words to parts of sentences (Echolalia)
- Although the movements are involuntary, the person may be able to control them at times, although this takes a lot of concentration.
- People can ‘suppress’ the tics for a period of time, but they will always need to tic when they feel safe to do so.
- A child may control or suppress tics at school; however they may then tic constantly for a while as soon as they get home.
- A teacher wont realise a child has tics if they ‘suppress’, but it also means that the child will not be concentrating on school work.
- A child may only release the tics in the privacy of their own room, so that others, even parents, aren’t aware of their existence.
- Early multi-diagnosis, positive intervention, medication/alternative therapies may help someone living with TS.
- Someone living with TS – what may help – understanding from family, friends and public.
- Someone living with TS – what may help – understanding from Health, Education, Social Work, Employer.
- Someone living with TS – what may help – regular breaks/support for parents/care providers/siblings.
- Someone living with TS – what may help – contact with others through Tourette Sydrome Association
- TS, which was once thought to be extremely rare, is in fact one of the most common genetic diseases affecting man and many people have it.
- Tics range from mild to severe and can change over time, ‘wax and wane’ so they don’t stay the same for life.
- People with TS are often of high intelligence, and are often creative or artistic.
- TS is genetic and can run in families, which may also include someone with Asperger’s or OCD, ADHD or similar conditions.
- Teachers can assist to make a positive learning experience for a student with TS, by creating a supportive environment in the classroom
- Awareness raising should include the personal experience of those with TS, which is helpful in explaining the varied aspects of the condition to others and in gaining empathy.
- Use of methods such as ‘Time Out’ and working with the student on their individual learning plans.
- The use of management tools, can assist the teacher and the student in smoothing the way for productive learning relationships.
More understanding, in that the condition has many facets, should be sought and teachers be made aware of the particular traits and challenges facing the individuals in their care.
Information from the Tourette Syndrome Association.