I hope that you are all having a good summer so far and enjoying the sunny weather when you can.
As some of you may already know, I have previously been to something called Ticfest which is run by the charity Tourette’s Action. It is where families that have children with Tourette’s Syndrome have the opportunity to spend a weekend together doing fun activities and sharing knowledge about their experience dealing with Tourette’s Syndrome. It allows the children to meet other kids with TS (Tourette’s syndrome) who are going through and dealing with the same issues as them, which is amazing as having TS can often be quite isolating and confusing for young children and teenagers. It is also hugely beneficial for the parents to meet each other as sometimes when parenting a child with TS, you have to battle pretty much everything to get your child the support that they deserve. For example, battling with medical systems to get your child diagnosed with TS in the first place, or struggling with the education system to allow your child to flourish within a school environment despite their TS, or even sometimes just general social discrimination against your child in everyday situations. TicFest gives parents a safe place to discuss the ups and downs of having a child with TS and also allows them to receive support and advice from others who are in similar situations.
Over the course of the weekend, we did a range of activities such as high ropes, assault course, zip wire, climbing, abseiling and kayaking. Lots of these activities can feel very intimidating when you have TS as you often don’t have full control over the actions that your body makes. This can make the idea of climbing a huge climbing wall rather scary for some people even if you are safely strapped into a harness. Sometimes when you have Tourettes you have to adapt the way that you do things and find different ways to work around your tics in new situations. When it was my turn to climb, I was having some really annoying hand and arm tics which I thought were going to prevent me from being able to climb, but actually I managed to climb all the way to the top because each time one of my hands was holding onto the wall I took the other one off to finish ticcing until I could then swap them over and keep climbing. It may have taken me slightly longer to achieve the end goal of climbing to the top, but I still managed to do it despite some rather challenging tics. When you have TS, this is the kind of approach that you have to apply to lots of other situations in life, whether that’s doing exams with extra time in a separate room to allow for time to tic or simply using a closed cup or bottle at home to avoid unnecessary stress about spilling your drink at meal times. TicFest gives families a chance to share with each other the tips and tricks that they have picked up along the way when adapting to life with TS.
On the first evening that we were at TicFest after we had finished running around playing the ice breaker games that the camp leaders had organised, they got all of the kids to gather and sit around the campfire. The camp leaders then made sure that we all new the basic health and safety rules when being near a fire. The list of warnings included things like “don’t get too close to the fire” and “don’t throw anything into the fire”. This however triggered many people’s vocal tics, so from around the campfire came various varieties of “let’s jump in the fire” or “let’s throw our wristbands in the fire” which did confuse the camp leader staff at first as, although they had been told about Tourettes, sometimes it can take a while to fully understand it. By the time we started toasting the marshmallows we did have a few flying around or hitting the floor due to various arm and flicking tics!
This year was my third TicFest and I am so grateful to Tourette’s Action for organising this as it has benefited me and my family so much. If you want to know in more detail what we generally get up to at TicFest and what big of an impact it makes in families, then check out the video about TicFest that I made 2 years ago https://m.youtube.com/watch?v=7nmRacpLie4&t=13s . Sadly I didn’t manage to make a video at TicFest this year as I really wanted to personally get as much out of the weekend as I could, but the last video about it is still very relevant and worth watching if you are interested.
I just want to thank Tourette’s Action once again for organising and running TicFest this year. I had such an amazing time and I have made so many new friends along the way that I wouldn’t have met otherwise. It honestly gives me such a huge confidence boost every time I attend TicFest and it always inspires me to keep educating the world as best I can about what living with Tourette’s Syndrome is actually like.
Wilamena 🙂 xx