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We talk Tourettes with Annie

Tourette Syndrome (TS) is an inherited neurological condition that affects one school child in every hundred and is more common amongst boys. Over 300,000 children and adults are living with TS in the UK. To celebrate Tourette Syndrome Awareness month, we chat to year 1 student, and Tourette sufferer Annie as she tells us about her recent diagnosis, and coping with everyday life.

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So, what the **** is it all about?

When I first meet Annie, she is absolutely buzzing from just having passed her driving test – understandable for any young person, especially when you already have a beloved Mini Cooper waiting to be driven solo. But what I was intrigued to know, was to what extent having TS impacted a driving test – I mean they are hard enough at the best of times: “I was an absolute mess this morning. I was so stressed and anxious which makes things worse so I tried to stay really calm and in control. When I’m driving it’s actually fine and when I’m out on the water sailing or kayaking then that’s OK too, but it’s just when I’m sat still and not really focusing on anything.”

With limited knowledge of the disability, (Annie refers to her condition as this) I really did not know what to expect, however what is abundantly clear from the offset, is that Annie is a very warm and vibrant individual with a very positive outlook on life - characteristics which I am sure are fundamental in helping her to cope with her condition.

So, what is Tourette Syndrome? Annie describes it as “a chemical imbalance in the brain” which causes her body to have reactions, making her do things that she doesn’t necessarily want to do. “I have had small less noticeable tics for many years. It started off with things like blinking, then I started throwing my head back quite hard, and then my arms started shaking quite a lot. While I wasn’t always aware of what I was doing, Mum would also notice me pulling faces at the dinner table.”

 

Sometimes you just have to explode

Annie admits to being quite fidgety and hyper as a child, acronyms like ADHD were often thrown around by teachers and doctors. The tics came later and were really bad during the summer of 2020 but she was only formally diagnosed with TS in January 2021. 

I was intrigued to discover how Annie handled her first few days and weeks at college – she didn’t want to announce to her fellow students that she most likely had TS - not wanting it to be the thing that defined her. “I was getting nervous about people noticing and worried about what they might think.” Annie explains that anxiety, nervousness and excitement are all triggers to her tics and while she can control them to an extent, sometimes she has no choice - “I have to just explode.”

“The first week was great, nobody had any idea as I was trying really hard to play it down, but then a week later I just started swearing – I couldn’t hold it in anymore.”

Annie is refreshingly open about her Tourettes and rather than people speculating about her behaviour, she’d rather they asked her about it: “I remember Finn, one of my classmates came up to me at the train station in the second week and said: ‘Look I don’t mean to be rude, but do you have Tourette’s?’ When I said yeah, he was like Okay, cool.”

Yes, I definitely want to do this

Annie was first introduced to Rockley as a child on a year 9 school residential trip, to La Rive. “I mean I’m always excitable, but I absolutely loved it! I was buzzing and remember thinking how do I get involved in this? I spoke to Maddie who was on her BTEC work experience and just carried on following Rockley on social media. Mum and Dad suggested we go to the Open Day and I was like yes, I definitely want to do this. A lot of my teachers were encouraging me to do A-levels but I knew I wouldn’t cope with being in a classroom all the time. When I told my PE teacher that I was thinking of going to Rockley, his face lit up – he said it would be perfect for me. I actually phoned him a few weeks ago to let him know how I’m getting on!”

Annie admits that her inability to sit down for long periods largely influenced her choice of college course. She was always predicted high grades at school however the added pressure really affected her and she realised she needed to change the environment she was studying in. “I felt a lot of pressure at school but being at Rockley is so much more chilled out. I saw coming to Rockley College as being a fresh start and so far it’s worked out really well. If I need to take 10 minutes out or I’m not feeling great then everyone understands. During lockdown when things weren’t too good and I had fallen behind, Mark was always there to reassure me and told me to cut myself some slack. He would ring me on a Tuesday and a Friday and we’d just have a chat about anything and everything from Christmas presents to what I’d been up to. It was so nice because it was like, yeah, someone actually cares.”

Help & Support

Having the support of both her peers and teachers has been invaluable to Annie. It’s always been so important to the Rockley teachers that while acknowledging Annie’s condition and adapting to her requirements, they never want her to feel singled out. “I didn't get any professional help until December, therefore the effort the teachers put into researching and finding coping mechanisms was where I first got any help. The staff were doing everything they could even when they had little knowledge on what would help. A lot about Tourette's is that everyone is different, and that what works for some doesn’t always work for others, so it was very much a long trial and error process. 

“Sometimes when I hit the tables and stuff, the teachers never look at me funny or react negatively, they just give me the nod and I’ll go outside for a break. Or if it looks like I’m getting distracted, Liz will come over and challenge me with something else which really focuses me.

“I sit next to Georgia and I really need to get her a medal or something! And I’ve always said that If I do or say something funny then not to tell any of my classmates off for laughing! There’s certainly a lot more understanding here.”

Don’t tell me I can’t do something 

Studying at Rockley College, in such a natural environment, close to the sea is a real plus for Annie. “Just being able to go outside, be out on the water and clear my head is a real positive thing. There is always so much excitement around being on the water. Even when you’ve been battered by the wind and it’s absolutely freezing, you feel like you’ve achieved something. For me, It’s about proving I can do anything - I don’t like it when people say I can’t do something

“And I feel so much more confident now. I mean I’ve had to be confident anyway with having Tourette's, otherwise it could really take over, but I am definitely learning a lot more about myself. I used to worry all the time about getting things wrong and disappointing people but I’m learning that it’s fine to get things wrong sometimes. It’s OK.”

Future Plans

When I ask Annie what her plans are for the summer, she tells me that she has applied for a few jobs and ideally wants to work outdoors. I ask if she puts on her application form that she has Tourette's: “I don’t because it’s easier for me to explain to them in person and they can get a better understanding of it. I don’t want them to make assumptions.” I have a feeling that when potential future employers meet Annie, they will be as charmed by her as I am.

So, what’s the dream? “I’d like to work with Rockley, maybe do a few seasons in France teaching kids. I don’t really know what my long -term plans are but I know I don’t want to miss out on anything!”

I get the impression that nothing is going to hold Annie back from achieving what she wants to. And while admittedly she encounters more challenges than the average teenager which can be exacerbated further by external circumstances, she has the resilience, positivity and kindness in abundance to succeed.

To find out more about TS, click below:

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