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Tourette Syndrome - Q&A


Hello families and fellow Sennies! My name is Liam. I am an experienced male nanny with SEN experience and I am currently looking for my next role as a Sennie! I'm a little different to most nannies/Sennies as I have mild, non-verbal Tourette Syndrome. I have been asked many questions about Tourette Syndrome personally and professionally and the CEO of SENNIES Georgia kindly asked me to write a blog to help educate our community in regards to Tourettes Syndrome. I have decided to select and answer a few questions that I am commonly asked and hope you enjoy learning about Tourette Syndrome.


P.S. If you are looking for SEN Childcare please reach out to SENNIES to see if I am still available for work as I would be happy to discuss my experience in more detail with you :D


Q1: Do all people with Tourette Syndrome have swearing vocal tics?

No, not all. I haven't and the same goes for others I know with Tourette Syndrome. This is probably the most common misconception.


Q2: Did Tourettes syndrome affect your access to education?

Over the years the laws and requirements to support children with additional needs in education have massively improved but this isn't to say there isn't still work to do. Everyone's experience of education will be different but I highly recommend you push to get a good EHCP (Educational Healthcare Plan) or IEP (Individual Education Plan). Having these two things will undoubtedly be of huge benefit to your child's education and school experience.


Q3: Because my child has Tourette Syndrome, will they have another condition such as ADHD etc.?

Not necessarily. In my experience, it is quite common for children who have Tourettes to also have other conditions such as ADHD and/or Autism, however, I have also met lots of people who have Tourette Syndrome without any other conditions. If you have any concerns about other conditions, please go to your GP who will act accordingly to get you referred for an assessment.


Q4: Will my child need to take medication because of Tourette Syndrome?

Whilst there is medication available to support the management of tics, medications do not eliminate tics completely. However, they can help some people with Tourettes Syndrome in their everyday life. There is no one medication that is best for all people and as with any medication, there are a number of side effects. Therefore it is best to seek advice and guidance from a specialist who will advise on all forms of treatment and help you decide what is best for you and your family. Please remember that tics often change over time and medication should not be used simply because you do not like your child's tics. With age people with Tourettes syndrome often find a more subtle tic that they feel can be managed independently so where possible please give your child time to grow and learn more about themselves and their condition in a way where they can take some ownership and feel empowered to be themselves.


Q5: Will, my child, be bullied due to their Tourette Syndrome?

This is one of those questions I can't give a yes or no to as it's one of those how long is a piece of string type question. I mean, of course, I wouldn't wish anyone to be bullied, but if it does happen, then of course deal with it in a sensitive and understanding manner whilst working with the relevant parties to stop the bullying. I would suggest ensuring your child's class from peers to teachers to parents are educated on your child's condition to ensure there is a consistent approach to inclusivity in education. Where possible do not do this in a way that singles out your child but instead empower them to be a part of the conversation/education. If you would like some support in this area please feel free to reach out to SENNIES as they can offer additional advice.


Q6: What shall I do if a stranger doesn't like a tic my child does.

So I have personally been in these situations. I usually say, "sorry, I have a neurological condition"; nevertheless, everyone deals with such cases differently. A good recommendation for children is, if possible, to print out mini business styled cards that say 'I have Tourette Syndrome. For more information on this please go to touretteaction.org.uk.


Q7: Can my child's tics change?

Yes, as mentioned above briefly, Tics can change over time and sometimes disappear altogether. They may come back later in life or not, it really varies from person to person. When I was younger I had tics that would affect my hand movement, leg movement, tongue movement which would make a sound and facial movements. Now at 23, they range from a facial movement tic and a rare sniffling tic.


I feel this decline in the number of tics along with the decline of the frequency I do them was achieved through identifying what made me both anxious and stressed and putting the relevant solutions in place to be able to bring down both the number of tics I have and how often I do them.



Q8: Will my child's tics cause themselves or other physical harm?

It is unlikely. However, this can't be ruled out due to accidents and that everyone's tics are different!


Q9: Does having Tourette Syndrome impact or improve your work as a Sennie?

I feel it improves my work as a Sennie. I feel this due to the experiences I experienced during my childhood leading me to have more of an understanding of how children feel growing up with Tourette Syndrome, SEN and SEMH and how this can affect the child's mental well-being. Leading me to be able to support both the child and their family in a more effective manner!



Q10: What inspired you to work within the SEN childcare sector?

I decided to work in the SEN and SEMH childcare sectors due to experiences from my childhood. I wanted to support children and their loved ones to get the best care and support possible and to prevent both child and family from falling through the cracks of the system.




We would like to thank Liam for this blog entry as we appreciate writing about your own condition can sometimes be tricky but we think he did a fantastic job and hope you would agree!


We would like to add a few additional pieces of information from the www.tourettes-action.org.uk which we feel would complement Liam's entry to continue the education around Tourette Syndrome.

Tics

Tics usually start in childhood around the age of six to seven years and tic symptoms often fluctuate in severity and frequency. Although the nature of tics is that they come and go, such patterns are also influenced by environmental factors including stress, excitement and relaxation.

Tics can occur in nearly any part of the body and in any muscle; some individuals report of ‘internal tics’ such as deep abdominal muscle tension and ‘stomach tics’

The biggest misconception around TS is that everybody with the condition swears. Coprolalia is the clinical term for tics that produce socially unacceptable words, and only approximately 15-20% of people with TS have this symptom.


Tics can be divided into Simple and Complex categories. Below is an example of common motor and vocal tics:


Premonitory urge

Many individuals experience a physical sensation – a premonitory feeling/urge – that precedes a tic. It has been compared to other physical sensations such as the need to itch or sneeze, or a burning, electrical feeling inside. Suppressing a tic can increase the premonitory urge, and once a tic has been performed the premonitory urge often reduces. For some people multiple attempts of a tic are necessary until it ‘feels right’ and the premonitory urge diminishes.

Can tics be controlled?

Although tics are involuntary, many people are able to suppress their tics for a short time. A helpful way of understanding this is to compare it to blinking. For a short period of time it is possible to keep your eyes wide open and avoid blinking – and with practice you will get better at doing it for longer – but eventually you will have to blink as the urge is too strong to control. Suppressing tics works in the same way. It can take a great measure of concentration – especially to begin with – to resist the urge to tic, but with practice a certain level of control can be applied. Some people will be able to suppress their tics more easily than others.

It is quite common for children with TS to suppress their tics at school, yet families will notice a marked increase in their child’s tics once they get home. This is likely to be a result in the change of environment. School is very structured and has reinforcers that may make a child want to control their tics. In comparison home life is more relaxed and therefore helps children to feel at ease with expressing their tics.

Tic Attacks

The term ‘tic attack’ is often used to describe bouts of severe, continuous, non-suppressible and disabling tics which can last from a few minutes to several hours. They often include whole body writhing movements, muscle tensing and shaking. Tic attacks can create a lot of anxiety for the individual experiencing them and their families.


Co-occurring features and conditions

Up to 85 percent of people with TS have more than just tics. Co-occurring symptoms may include obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), anger/rages and anxiety. When a person presents with tics and co-occurring symptoms this is clinically referred to as ‘mixed neurodevelopment symptoms’. Such additional symptoms may cause more problems than tics as they can be less visible.

You can read in more detail about co-occurring conditions here


Causes of Tourette Syndrome

The cause of Tourette Syndrome has not been fully established but a lot has been learnt over the last 20 years. It is known as a neuro-developmental condition, as a vulnerability to having tics seems to develop as the brain is developing, although tics usually first appear at around the age of 5 (can be younger or much older than this). TS is often associated with comorbid (also present) conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD). These conditions often overlap and run in families.


Getting diagnosed

A diagnosis of Tourette Syndrome (TS) can lead to a greater understanding of the condition, access to healthcare, support networks and services.

For TS to be diagnosed, multiple motor tics and at least one vocal tic must be present for at least 12 months.

TS can only be diagnosed by observing and evaluating symptoms and there are rating scales to help with the assessment of tic severity. Some doctors may use an EEG, MRI, CT scan, or certain blood tests to rule out other conditions that might be confused with TS such as epilepsy, autism, dystonia and Sydenham’s chorea.

What will a diagnosis give me?

A diagnosis provides a framework for understanding TS related actions and behaviours, not only for the individual but also the people around them (e.g. family, friends, teachers, employers). This level of understanding is the foundation to living with TS. A diagnosis can also provide access to support and health services and help avoid discrimination and misunderstanding.

Who can diagnose TS?

Health professionals who can diagnose TS are: Neurologists, Psychiatrists and Paediatricians.



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