One of our researchers talks about life with her younger sister who lives with TS

This blog is written by Diana Beljaars a PhD researcher from Cardiff University in Wales. Diana is originally from Holland and speaks Dutch and English. In this blog article she writes poignantly about her relationship with her sister who has Tourettes Syndrome.

My Touretty sister and me

Tourette´s has been part of my life for many, many years, but came into it since early puberty. Before that time memories stretch back to winter afternoons playing in our play corner under the stairs and summer afternoons playing under the pine tree in the back yard of our parents´ house. Youth pictures in my album mimic the light-heartedness of my memories remarkably well. She was just my sister, annoying as little sisters are, but equally as cute…

Then, things changed. She started doing ‘funny things’ with her eyes and nose, and I remember her being taken to an unending list of doctors. As an unknowing sibling in early puberty herself, I felt her withdrawing from my life, being taken up by her condition.

I, as everyone else, couldn’t quite relate to her as I used to. The condition, that finally could be named Tourette syndrome, both mystified and coloured the image I had of my sister. Sometimes she seemed too far away to connect at all, consumed by her body that made her do things she didn’t want.

Sometimes she did things that intrigued me but could never be understood by me. For instance, not being able to carry the plates with cutlery on them to the kitchen after dinner “because she just couldn’t”. Nonetheless, we fought as fiercely as we found each other in shared obsessions, such as the holiday without our parents in Italy. Despite me not being able to predict her, she was still my little sister and I felt deeply responsible for her. It might be the type felt by each older sister, but maybe also because of her unique vulnerability. Our years in early twenties we grew more apart, as I went off to university. Dealing with my own problems, she left my mind bit by bit.

It was only at the end of my studies in human geography (a social science concerned with the spatial relationship between people and places) that suddenly it hit me: my sister’s condition had highly spatial pronunciation. With her touch tics she used the objects that made up her everyday environments in a such a specific and unique way that I decided to combine my understanding of the disorder and knowledge and skill human geography. With the research proposal she came flaming back into my life.

We went to a conference on Tourette’s in Greece where she, as subject of their study, spoke to a big room filled with people. Twice. I couldn’t be more proud of her. It was in that moment that I recognised the little girl I used to play with in her. I realised that she couldn’t have been more herself in the moment, and that the Tourette’s had never mystified and coloured her: it was me the whole time. I, as product of a society that values the normal and logical in people drastically failed in understanding the beauty in her tics and twitches. Now, my sister and I get along better than ever. She is just my sister, annoying as little sisters are, but equally as cute.

If my research is good for anything, it is in the fact that an inability to relate to a different form of humanity should invoke an openness to its capacities. Or put simply, if you can’t understand why somebody else is different, you should be open to understand what makes him/her beautiful and capable of extraordinary achievement.

Diana’s sister has been blogging for Teens4TS for more than 2 years now. Read all about her adventures here!

Me, my studies and TS

We caught up with A Level student Ellen to have a chat about all things TS.

How old were you when you got diagnosed with TS and how did you feel about this?

I have had Tourette’s for as long as I can remember, but I was never properly diagnosed until I was about 14. My parents tell me that I used to blink excessively when I was little, which, at the time, they just thought was down to me watching too much television, but I now know to be a tic.

Since I am quite good at suppressing my tics in public I was less sure that what I was doing had an actual name. I was always worried about what people might think if they found out the full extent of my tics and, what with the wide array of problems you find yourself faced with in your teenage years, having people discover that I had Tourettes Syndrome was not top of my priorities list.

Getting properly diagnosed was like a weight off my shoulders. To be able to give it a name and to know that I wasn’t the only one was a relief and it made me feel so much better about myself. I could now think, “Right, OK, this is what I have, and this is how I am going to deal with it”, instead of always worrying about why I was doing what I was doing and how other people might react.

How has school been supportive and in what ways have they helped you?

I first approached my school with the fact that I have Tourettes in the winter of year 11; the year of the dreaded GCSE’s. My parents and I explained how my Tourettes manifest and how high levels of stress affect my ability to suppress my tics in public.

Since the exam period was approaching my teachers and I discussed ways in which my exams could be made as stress-free as possible. Obviously, that time of year can be stressful for anyone, but, with Tourettes thrown in for good measure, I was worried I would struggle to cope.

My school offered me with the ability to do my exams in a separate room, and I could take time out if my tics became really bad. It gave me that extra bit of reassurance to know that I would be able to release my tics as I pleased, free from the inquisitive gazes of anyone else.

What inspired you to want to talk about TS to your sixth form?

I really wanted to raise awareness of what TS actually is and how it manifests in different people. The media often twists the reality so as to make it seem more interesting and attention-grabbing for people who don’t know much about it. I wanted to talk about what having Tourettes really means for people, especially teenagers, and how difficult it can be to deal with it, but also how it changes you as a person and the way you see the world. I was also tired of hiding and, in telling other people about my Tourettes, I felt better about accepting it in myself.

Were you nervous before giving your presentation?

I think nerves are unavoidable in any situation that involves speaking to lots of people. I am a theatre lover, and do love being on the stage, but I did feel a few butterflies. A small number of my close friends have known for a long time that I have Tourettes Syndrome, so it gave me comfort to know that they would be supportive no matter what happened.

What feedback did you get from your friends, do you feel you raised awareness of TS?

One of my main worries was that people would judge me for something that doesn’t define me as a human being. I felt that I was able to show that even though there are people who have Tourettes, it doesn’t make them incapable of being and doing other things. I wanted to be remembered as more than just “that girl with Tourettes” and everyone at school proved that that would not be impossible, which I am so grateful for.

What advice or knowledge would you give to other students who have got TS?

Don’t let it rule you! There is always someone that you can talk to, whether it is a doctor, a teacher, or a family member. If you have any worries about Tourettes or how it is making you live your life, don’t bottle them up inside you. Finding a way to deal with TS is different for everyone, but once you find what suits you, it can make all the difference.

New Canadian rock band features members with TS

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Say hello to Pariah.

They’re a young, ambitious Canadian rock band, and two of their members happen to have TS.

A five-piece ensemble, Pariah hails from Mississauga and Oakville, and they all love to write music, record and perform.

The band already has their own Facebook pageTwitter account and YouTube channel. On the latter you can hear a demo and watch a video of them performing live, and if you live in the Greater Toronto Area you’ll have a chance to see them play live on Sunday, April 27, at the Rockpile West in Etobicoke, ON.

Pariah is:

Chanel Martins – Lead Vocals

Jiverny Marshall – Rhythm Guitar/Vocals

Dylan Murray – Lead Guitar

Justin Speers – Bass

Ian Coll – Drums

Here’s a video of them performing a song called “Adrift.”

Changing lives with “The Space Between You And Me”

The Space Between You And Me is a powerful art installation that moves people who experience it. It’s a captivating exhibit, managing to express what it’s like to have Tourette Syndrome through footage of interviews with youth with TS and interpretive dance inspired by the disorder, all projected onto a series of transparent and semi transparent screens and mirrored in various reflective materials.

At a recent exhibition attended by hundreds of students, one teenager said that The Space Between You And Me had “changed her.” Evidence of the profound effect this project has on teenagers can be found in a blog on the official project website, where teens share their own inspired thoughts and feelings on a range of issues.

Why does The Space Between You And Me strike such a chord with teenagers? No doubt it has something to do with the installation’s theme, and the special young person who sparked its creators. From the official website:

Paige Tomashewsky, the teen who inspired the creation of the project, suggested the title for The Space Between You And Me. Paige’s TS has forced her at times to keep a space between herself and others for their protection. Students always left a space around her at assemblies and in line-ups. Although she always understood the need for this, it was still very painful.

Even given theses boundaries she has a lot of friends who know the price of being in her space but they willingly accept it. The space is the physical and emotional gap that TS creates for Paige. Sometimes it is to protect her from people’s judgments or to protect others from the dangers her tics can cause. Continue reading

Support for young people

NOTE: Please welcome Tourettes Action, an advocacy group based in the United Kingdom, to Teens4TS. Below is some information they have to help teenagers, college students and other young adults who struggle with TS.

Most people with Tourette Syndrome (TS) are diagnosed as children or teenagers. Children generally start to tic between ages five and seven, but they can start as young as three years old.

There is a lot of information about TS out there, but Tourettes Action knows that because it is a complicated condition a lot of the material can be quite difficult to read, so we have put together information specifically for young people.

Tourette Syndrome – the simple truth

Tourettes Action asked young people what questions they wanted answered about TS, and we’ve attempted to answer them here, including:

  • What is TS?
  • Will I swear?
  • What might help my tics
  • Should I tell people in school that I have TS?
  • Can I do the same things as my friends, like going to the cinema?
  • Will anybody want to go out with me?
  • Will I be able to get a job?
  • Is there anybody famous with TS?

You can read our answers to all your questions in our guide for young people, Tourette Syndrome – the simple truth.

Other TA information for young people

  • Facebook follow Tourettes Action to find out all the latest news about TS and upcoming events
  • Twitter follow us for the latest news on TS
  • TA forum share your experiences with other people your age with TS
  • YouTube visit our YouTube page to watch videos from fellow ticcers talking about what it is like to have TS
  • Support in school information for you and your parents to get the best support in school, university and further education

Other information for young people with TS

Books about TS for young people

You’ll find more books and information in our Resources Library.

Conquering back-to-school anxiety, part 3: Strategies and interventions

EDITOR’S NOTE: This is the finale of a three-part series on back-to-school anxiety by the Tourette Syndrome Foundation of Canada.  Part 1 was published on Wednesday, and part 2 was published on Thursday.

There are a number of intervention strategies for combating school avoidance, many more than can be discussed here. The following provides a brief overview. If you suspect that your child or a child you work with is struggling with school avoidance, speak to a professional counsellor, doctor or psychologist to obtain more information.

For students whose avoidance behaviour is driven by depression, effective interventions might include cognitive behavioural therapy, prescription medication, gradual re-entry to school and rewards for school attendance.

A different approach might be take for separation anxiety-driven school avoidance behaviour. Teachers can encourage students to bring a “transitional object” from home (e.g. a favourite stuffed animal) and to take a special object home from school, such a drawing or a book, during the first couple of weeks of school to help the student feel more comfortable. Continue reading

Conquering back-to-school anxiety, part 2: Causes

EDITOR’S NOTE: This is part 2 of a three-part series on back-to-school anxiety by the Tourette Syndrome Foundation of Canada.  Part 1 was published on Wednesday, and part 3 will be published on Friday.

As always, in order to understand how to combat the problem, we first need to understand its causes. “Understanding the reasons that students avoid school is the first step in getting them to return,” writes school psychologist Mary Wimmer. In her 2008 article entitled “Why Kids Refuse to Go to School,” Wimmer stresses that school refusal or school avoidance can’t be attributed to a single cause, it results from a complex mix of factors including mental health problems, family issues and the school environment.

Mental health challenges, whether anxiety, depression, Oppositional Defiance Disorder (ODD), Obsessive Compulsive Disorder, Panic Disorder or some combination of these, account for 90 percent of the cases of school refusal. According to authors Packer & Pruitt (2010), anxiety, more specifically Separation Anxiety, Generalized Anxiety Disorder, and Social/Performance Anxiety, is the leading cause of school avoidance behaviour, affecting 22 percent of school refusers.

Children with Separation Anxiety are usually very young, tend to be preoccupied with the possibility of harm befalling loved ones, and are overly dependent on their parents or caregivers. Social or Performance Anxiety, which accounts for 3.5 percent of school avoidances cases, is slightly different. Continue reading

Conquering back-to-school anxiety, part 1

EDITOR’S NOTE: This is part 1 of a three-part series on back-to-school anxiety by the Tourette Syndrome Foundation of Canada. Parts 2 and 3 will be published Thursday and Friday, respectively.

Fall is fast approaching, and in a few short days, it will be that time again—time to pick up the books, pack the school bag and head back to school!

For many school-aged children, it’s an exciting time—a chance to catch up with friends, swap stories about the summer, sport new outfits and show off new school supplies. It is important to remember, however, that not every child feels this way. For some kids, the prospect of returning to school is unsettling, even dreadful. Rather than feeling excitement, they feel intense fear and anxiety leading them to declare, “I hate school” or “I really, really don’t want to go to school.”

The layperson’s term for this phenomenon is “back-to-school anxiety.” Scholars of the subject call it school phobia, school avoidance or school refusal. Simply defined, these terms refer to any anxiety and fear associated with going to school that can result in a pattern of avoidance of, or refusal to attend, school. This is not to be confused with a dislike of or desire to avoid schoolwork. Quite the opposite; according to one scholar, “Those with true school refusal…are usually willing to complete school work as long as it’s done at home.”

School phobia/avoidance is no small problem. Studies suggest that it affects 2 percent to 5 percent of all school-age children, with the highest incidence occurring among children between the ages of 5 and 6 (age 6 also happens to be the average age when someone with TS first starts experiencing symptoms).

Left unaddressed, school phobia can have serious consequences. In the short-term, it can lead to poor academic performance, parental conflict and diminishing peer relationships. In the long-term, it can result in academic failure, school dropout and employment difficulties.

So, what can be done about it? Can it be curbed? Eliminated? Prevented? If so, how?