Family Weekend 2009

2009 was a special year for The Arthrogyrposis Group as we had reached our twenty-fifth anniversary.  Once again thanks to a grant from BBC Children in Need we were able to hold our Family Weekend at the Crowne Plaza Hotel Marlow, Marlow on Thames, Buckinghamshire between 25th-27th September.  Over 200 TAG members from across the UK came. 

This years Family Weekend had a slight different focus to previous years and was titled Securing the Future.  It was felt that given the landmark anniversary, that for this year alone, it would be right to look at the organisation as a whole, and begin to finally put in place the groundwork for the young people to have a direct voice in the running of the Group – they are after all the future custodians of the charity!

The Weekend began with a ‘Group Supper’ on the Friday evening that allowed everyone to catch up with friends and to begin making new ones. 

Saturday began bright and early with Matt Storey giving a detailed briefing to volunteers who would be looking after the children on the trips out and with the activities held in the hotel.  Thanks to the efforts of two local member families we had a great clutch of volunteers with an excellent cross-section of skills needed to look after the children. We are very grateful to Chris and Laraine Brown as well as Andreas an& Janet Pitsiaeli organising this invaluable support.

Despite the concerns caused by the previous week’s press around possible risk of children picking up e-coli from visiting petting farms the 4-7 year olds visited Odds Farm Park. The children had a wonderful day with the animals which included a Birthday Party to celebrate TAG’s 25 years and some were completely unrecognisable upon their return because of the animal masks they were all wearing! 

The 8-12s were sent off to the Roald Dahl Museum in Great Missenden.  Despite this being a large group, the Museum Staff ensured everyone was able to enjoy all that the museum has to offer including sitting in the BFG’s Chair!  A Birthday Picnic was arranged and amongst the feedback we heard that “it was a jolly affair but the atmosphere was so perfect”  – just the way it should be when visiting the great man’s home.

Those between 13-17 years were left in the capable hands of Tim Hall from BeGo Coaching & Training. Initial reluctance (and dismay that they weren’t going bowling again) soon evaporated and as the morning went on the ‘competition’ hotted-up with the tee-pee building.  The four groups were assisted - and in some cases hindered - by adult volunteers who seemed to relish the challenge and much noise was heard along the corridors as people obviously had put the wrong bit, in the wrong place at the wrong time!
Many of the children in this age group have been on TAG Camp and in keeping with the party spirit we arranged for this group to have lunch with Camp Organisers Kevin Whittaker & Matt Storey. They all received a personal invitation from Kevin and Matt to join them for lunch in the hotel’s Agua Bar where they enjoyed a bar meal and cocktails - non-alcoholic of course!

Saturday afternoon brought the 8-12’s and 13-17’s together in the hotel conservatory. Unbeknown to them, they were about to take part in a non-bake cookery workshop, led by Rachelle and Pauline of Stirring Stuff  (the Hendon Cookery School), and were supposed to be making some nibbles for that evening’s dinner. Dress code was strictly aprons, rubber gloves and hairnets and with great gusto they began to put together The Canape and Chocolates Selection – Carrot Hummus, Cream Cheese with Gherkin & Caraway Seeds, Chocolate Muesli Truffles and, always a favourite, Chocolate Dipped Strawberries. (Recipes available.)  Their efforts should have produced enough to give all 200 guests a taste, but in the end, mainly because the chocolate and blinis disappeared, there was a much smaller selection to be served that evening. In all, this activity resulted in 3½ hours of intense discussion of the values of good chocolate interspersed with much fun and frolicking.  And if anyone has a copy of ‘that picture’ of Matt Storey – please do send it to us!

Family Weekend Sunday is only a half-day session and finding a suitable site for a short visit can be a little troublesome.  Bekonskot Model Village fulfilled all our requirements and gave the younger children a few hours of fun being amongst the ‘little people’s houses and towns’.  A lovely surprise was to find that the owners do not charge for parties of disabled children (nor their carers) and all at Bekonskot were very welcoming and accommodating to make sure that everyone was able to see the exhibits.  

The 8 to 12 years spent the morning with Tim Hall who got the group to discussing the things they would like to see TAG do specifically for them. Tim employed a technique he has used many times, getting the children to set up their own ‘organisation’ which helps to elicit what they want to achieve. Interestingly, the item that came to the fore was how, through school, they had picked up that nothing could go ahead without the money to do it and set about how best they could raise funds for TAG. 

Whilst this was happening, the 13 years and upwards were taking part in the Your TAG – Your Say. The aim of this workshop was to enable young people to give their views about how they think TAG should develop, what support they want as they move into adulthood, and also give them the opportunity to consider what their contribution to this can be. A number of issues came out of this session, interesting proposals and suggestions that have now been carefully assessed by the trustees who are looking into how best these could be implemented.

And while all this was happening, everyone else was kept busy with a programme that covered topics ranging from the Reflections on 25 years of TAG; Alliance Arthrogrypose (where they learnt of how far the French group has developed since attending the TAG International Medical Symposium in 2007) as well as hearing about the most recent activity of the Group.  Conference chair, Emmeline McChleery, explained to members how TAG needed to develop a cohesive approach if it was to continue and this initial talk widened into a much larger discussion. The afternoon session split the adults into two large groups – Grassroots for Adults led by Reshma Patel and TAG, the next 25 years for you and your child.  This second workshop was specifically for parents whose children have arthrogryposis and also considered how the provision and support for disabled children, their parents, has changed in the past quarter century.  It asked parents to consider and focus on the issues involved and share with TAG how these could help provide a firm vision of the future of the charity in line with their expectations.

We are very grateful to all the speakers, presenters and volunteers who helped us to make this a landmark event and one that we hope will begin the evolution of TAG in the 21st Century.

Our next Family Weekend has just been booked
Sheffield 8th to 10th October 2010

Come and join us – more detail to follow shortly