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Spotlight on Support Groups - Croydon
Posted Thu 3rd Aug 2023 at 11:43
by Carol Holah
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Read more about our fabulous Croydon Support Group from group leader Carol Holah.
Our group is a monthly meet-up for families. It has been running since March 2022 when, after his TS diagnosis, my son said he thought he was the only one to have TS.
The families who attend have at least one child with TS or undiagnosed TS, some of which also have other neurodivergent conditions. Many of the families come along with their siblings and it’s a really laid-back feel. There are no strict expectations for attending. Some families come along every month but some just come every now and then and either is absolutely fine! We also have a few parents who attend without their child or teen. The parents have built an effective support network. They chat and advise each other, comparing their journeys, successes, stresses and give each other tips.
The main feedback I get is that it’s just so helpful and comforting to be able to talk amongst people all going through the same thing. Some are further along their journey than others. We have families that range from those who are at a very early stage, perhaps just researching and trying to understand their child’s needs, to those who have been diagnosed for a while but are facing issues with school or wider family. It really is a mixed bag! Having a local support group is helpful as the families advise each other and can make links around professionals they may see in common. Although I am a trained teacher, SENCO and teacher trainer and can advise families around managing the education system, I am mainly there to develop the network, introduce people and look for who can support who. I really am just the facilitator!
The young ones who attend range from 4-18 years of age. They have built friendships and look forward to seeing each other each month. The most positive feedback I have ever received is from parents who comment that they are blown away by how comfortable and accepted their young ones are, who often have experienced great difficulty at school, at parties and social events. It is as if they quickly work out that they are in a safe place and if they tic, no one will comment or react. Some are so relaxed that their tics are reduced, but it doesn’t matter either way - no one is judging.
We always have options such as sports activities and a craft type activity. We are so lucky that the local church gives us their whole community space which includes a kitchen, sports hall, garden and conservatory. There are lots of break out spaces where the young ones can go. In the future we would like to continue to develop the group by raising money for the charity and give the young ones experiences that they may have been too anxious or overwhelmed to join in with. We would like more visitors to attend such as specialists in supportive therapies or adults with TS who can talk to the group about their own experiences. So many are at the very early stages and welcome any advice. The parents take turns in bringing cakes, activity ideas and clearing up duties. It really does feel like their group, that they have developed and built together.
It is exciting to see what the next year will bring.
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