The Secret life of a Group Co-ordinator

Posted Sat 1st Jan 2022 at 09:00
by Catherine Mosey

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Running a support group for Tourettes Action does not begin and end at the meeting room door.

For me, every day is an opportunity to network, meet people who would benefit from meetings and encouraging those who are “flat-lining” like myself, and are currently in ‘The Good Place’ that they should come along and give new members that are struggling some positive vibes and encouragement.

This is something I can’t do on my own. I’m not a man so my experience of TS would be different to any man that walked through the meeting room doors. Sadly, I’m not a parent, so I don’t have the experience of seeing my child experience TS or a tic disorder, nor do I have the lived experience of fighting for treatment and support for my child. My lived experience of TS is of a woman who has had TS since childhood.

Back to what I had planned to talk about - the fact that every day is an opportunity to help the group and fellow ticcers I meet. Yesterday, I was doing a small craft fair, “doing” as having a stall and trying to sell some items to help pay the rent and bills with a good friend who is mum to 3 boys, two of which are neuro divergent.

Here I met a lovely lady who had previously been in touch with me. She lives a few miles away with her eight-year-old son whose school are struggling to support him, so she is looking for some help.

So, if the “Key Facts of Teachers” leaflet doesn’t help, I may need to take a trip to Bedworth (it’s not far, a couple of bus rides away but still daunting for me who tends to just stick to this part of town and a few other places I regularly go to) and meet with his teacher. I may also need to visit another school to help another mum and her daughter, (this lady I met in Aldi whilst shopping), she had been at the council meeting talking about her daughter’s ASD assessment.

Amongst the cakes she asked, “Are you the Tourettes lady?” (??!! Me puzzled) “You were at that council meeting”, “Yes, that was me, I run the local Tourettes support group”. We chatted and went our separate ways. Shopping again in Aldi, this time in the baking area amongst the flour and sugar, I meet her again. She tells me her daughter has been off for a week due to her tics and being over-loaded sensory wise. I may need to visit her school also, luckily for me it’s just around the corner. Hopefully these two mums and their children will be able to make it to the next meeting in Nuneaton.

Apart from helping parents with their children, I need to raise essential funds for the group. It’s rare that our little group raffle that we hold each meeting, (known as the “c**ppy raffle” due to the prize being something cheap and cheerful), raises the funds to pay for the room hire. I’ve fundraised by running a marathon (not the prestigious and famous London Marathon but Leicester Marathon, it’s still the same distance). I’ve run a few half-marathons; I’ve done Christmas fairs and similar events, but the money is soon used up by room hire costs. I use tried and tested venues that are easy to reach on public transport, meet the needs of group members, the ability to store items such as games, craft materials and our new chill-out sensory tee-pee.

Both Stockingford Community Centre and Birmingham Friends of the Earth tick most of those boxes, I can store group items, there’s a bus stop outside, a car park and if you want to get some fresh air it’s at the edge of Whittleford Park. We’ve been meeting for as long as Tourettes Action have had regional support groups at Birmingham Friends of The Earth, although I can’t store any items here it’s in a good position, a short walk from New Street station and very close to the city centre. We have recently had meeting in their garden which is a little oasis in the middle of a bustling city, it’s a very reasonably priced venue, not suitable for younger children but it’s good for us adults and teens to get together and talk about the issues that affect us. It’s also close to a pub!

None of these places are free to hire. We need money constantly, so yesterday’s craft fair gave me the opportunity of setting up a stall to raise some funds and awareness. So, if any Midlander’s out there want to help us by fundraising, please get in touch. You can do cake sales, races, concerts or even book swaps, (I have set up one of these at the Stockingford Allotment and Sports Association Club. Children’s books have been very popular, so if you have any you would like to donate, it’s in the foyer, just add them, the money box is behind the bar).

Please request that any donations you raise from your fundraising go to the West Midlands Tourettes Action Support Group.
Anyway, that’s all for now, if there’s anything you’d like me write about please let me know.

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