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TICfest - What a Weekend!

Posted Mon 22nd May 2023 at 10:51
by Anne-Marie Corderoy

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Our family's amazing first experience at TICfest

When I saw Tourettes Action advertising TICfest I don't think I’ve signed up for anything so fast before! An adventure weekend that brings young people and their families with Tourettes together, sounded perfect. After receiving the confirmation of our places, my husband, Theo, his sister Lily 13 who doesn’t have Tourette’s, and I, all looked forward to participating and meeting others who were in the same boat as we were.

Of course, there were nerves, would it be too overwhelming, would it make his tics worse? With my two teenagers, one of the worries was whether it was going to be for older kids as well as younger ones. I needn’t have worried and I’m so glad I set aside the niggles and persevered. 

Theo, who is 15, experienced the onset of Tourettes in November 2021, confused, and unsure what to do we contacted the GP. Staring at me blankly she stated, “I’ve never seen anything like this before”. It was our first glimpse at the lack of knowledge and help available. She referred us to CAMHS and we asked about local support. I was staggered to find there were no local support services, absolutely nothing. We were directed to Tourettes Action instead, and although not localised, Tourettes Action turned out to be a godsend, providing a wealth of information, and much-needed support to families across the UK, who otherwise don’t have anywhere else to turn.

We pulled up the drive at Kilve court in Somerset on the Friday evening, somewhat weary but glad to finally have arrived. Greeted by two smiling faces from Tourettes Action, they armed us with directions to our room and reassurances that dinner was still available. Having been made to feel welcome straight away, we set about an unforgettable weekend.

Our first experience meeting everyone was a chorus of camp songs sailing through the air. We approached everyone sitting around a big fire pit singing their hearts out. Theo at first was worried about his tics as he also has coprolalia; an occurrence that involves non-intentional obscene and socially inappropriate vocalisations. Noticing the small children, he became stressed and agitated expressing to us that he didn’t think this was going to work. He was worried about offending and being inappropriate around people of a young age.

Emma, the organiser, came over and greeted us, putting Theo's mind at ease, she explained that these weekends were all about being able to relax and not worry.  She then took them over to get marshmallows and from this point on, Theo's confidence grew and he relaxed, letting go of tics that he battles to suppress in his everyday life.

Saturday was action-packed, paddleboarding along with the high ropes was a huge hit giving them the chance away from parents to interact with other children. It also allowed us parents to chat openly with each other about some of the struggles we face. It was incredibly useful to learn from others about any strategies or coping mechanisms they found worked and comforting to discover that many families are going through the same things. The evening didn’t disappoint either, circus skills, a Coronation party followed by a raffle was a fantastic way to end a jam-packed day.

The final day, Sunday, was one of mixed emotions, a sadness that the weekend was drawing to a close but also an elation of not feeling so alone. Whilst the kids were off participating in team-building exercises the parents got to sit down together and have an open discussion. This was invaluable and opened the floor further to enable us to share our stories. The start of a blossoming community of parents united in the same fight for our children, to gain more support and better access to care.

Throughout the entire weekend, the atmosphere was electric, and the staff were all fantastic making everyone at ease. It was well balanced to allow the kids to have structured activities and free time, which I thought was really important for them to form strong bonds with others of their age.

Tourettes Action, their employees and the volunteers that make this happen are a true beacon of hope for a very misunderstood condition. They really give families like us invaluable support in a system that at present is failing us.

The whole weekend was a massive hit and the kid's feedback; ”We wish it was longer, when can we go again,” said it all!

Arriving home, we were all exhausted but was it worth it? HELL YEAH!!!


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Events

Wednesday 29 May 19:00

Adults with TS Support group, Online 7pm - 8pm

Thursday 30 May 10:00

Parent/Caregiver Online Coffee Morning, Online 10am - 11am

Friday 31 May 10:00

Q&A Drop-in session, Online 10am - 11am

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