It is the day after the conference and I thought I would get some thoughts down on paper before it disappears into a blur (which it is a bit anyway!) There have been 9 intensive months of planning (bit like having a baby!!) I am exhausted and I guess for the families who attended they feel much the same. Overall most people felt that the conference was a success and were extremely appreciative.
Looking back over the weekend – it was great to see so many families enjoying themselves – we had 76 families in all and apparently close to the sizes of conferences held in the US and Canada! The venues for the trips went down well and I at least have a photo of my son on the log flume enjoying himself, as I was unable to go for some reason or another! Thanks to the trustees who went along – it was a really difficult job as there were so many families and it was so hot.
The conference itself was jam packed as usual. It was the sixth conference I had attended and our third – the biggest yet and almost International – we had a parent from New Zealand (just for the weekend!!), parents from Greece, Denmark, Ireland, Italy – and there were British residents from South Africa and the US. Both the Italian and Danish support groups were represented and we received a message from the President of the IASO Melanie Barton who was unable to attend. I learnt so much from it and undoubtedly the star of the show was Professor Bernard Dan who portrayed the complex, serious topic of neurology and epilepsy in a comedic – but informative parent friendly way, which we could all relate to and understand. What was particularly interesting to us as a family was finding out about how the way the brain works in AS. To hear an explanation of why our children/ adults make ataxic haphazard movements and how hard it is for them to perform simple tasks and how they compensate – there is so much more we can learn about this I am sure and this helps us to understand them a lot better and have some sympathy for what it’s like to be them. If only we had had knowledge about seizures etc like this when our son was younger.
Dr Dave Hewett was also a hit with most families, he had a relaxed comfortable style which parents liked – also the information and suggestions he gave were very pertinent – Professor Stephen Calculator flew in for the weekend and was able to share his expertise in Communication as he works with so many AS children in the United States - both speakers were praised by many families for their practical insights into issues relevant to all of us.
We heard from Maurice Collins about our legal rights and what to do about them, Robina Mallet gave us an insight into the Government White Paper on Valuing People which affects adult services, later she took a workshop in outlining the Transition Process for 14 – 25 year olds as they move from children to adult services. Finn Emmerson and Nadine Farris ran workshops on communication and basic equipment such as switches. Mike O’Connell came from Dynavox to show what families could potentially be looking at if communication aids for their children in future were appropriate. We had a trike demonstration from Bob Griffin and also a buggy and chair demo, Paul Chick was also on hand with leaflets about his designer bed www.chickies.co.uk
Dr Jill Clayton Smith joined us on Sunday and as usual was a hit with everyone – Genetics this time – an extremely complicated area even for Geneticists I think! As usual this was presented in a parent friendly way and I learnt again from her even though I have seen many genetic presentations in the past. It was a great way for parents to ask burning questions, particularly for those without or waiting for diagnosis and also those who may have a more complicated genetic diagnosis of AS. Jill I know also likes to talk to as many families as she can as they teach her too. Professor Chris Oliver was there with his research team who have been working on Smiling and Laughter in AS – they produced their results so far – unfortunately the results tell us what we already know BUT in order to research you have to prove everything before you can make the next step. We had a workshop to explore the kind of behavioural research we the parents would like in the future – this also involves application for funding and probably with some other charities – this will be a new and exciting development for ASSERT.
We began on Friday afternoon with a First Timers Talk – if anyone wants a handout please contact me…this was really an emotional guide to the conference and how we expect people who have come for the first time, to feel. It is a very emotional experience and even myself after all these years is moved to tears at times – there was one particular moment when Professor Calculator showed a video at the end of the session – it was the usual schmaltzy music but as it went on the words portrayed were so powerful – I really had to try hard not to break down – I looked around, as I couldn’t bear to look at the screen as I was finding it harder and harder to control myself – many of you were having the same problem as I was but you didn’t have to compose yourselves to introduce the next speaker like I did!!! Those of you who were there will know what I was like! It was like that the whole weekend – moments when you are fine and in control and then something small triggers a whole set of feelings. We often suppress our feelings and get on with it – the conference is a time when we don’t have to do this. I have heard that there were quite a few of you who had quite a hard time when you first arrived on Friday – I hope we helped you over the weekend and that there was more laughter than tears.
It was a hectic non stop rush for me – but it meant there was no time for boredom – one person commented what they least liked about the conference was having to get up in the mornings – yes we were up ready for the day eating breakfast from 7.30 onwards – there’s no time for slacking at a conference! We had a Welcome Reception in the bar that evening – and a chance to sing Happy Birthday to my husband Ken who celebrated his Birthday (although we as a family didn’t get time for cards and presents until Saturday evening). Some went off to bed early as you were tired from the journeying – however, the people that you would have expected to be most tired as they had travelled the furthest (apart from the Irish and Italians) were the people who came from a little known part of the UK in the north – somewhere called Scotland, the Land of the Scots. They kept up their usual first in, last out of the bar regime as they have at other conferences – although I was a bit worried at one point that they may have been beaten by the Irish (all these Celts are the same!) I think the free wine helped a bit and they obviously don’t see each other very often!!
We were so fortunate with the weather which was warm and humid (good gnat biting weather) which meant we were able to sit outside as there was no way we would have fitted in the bar otherwise – the coolest place was the foyer and Peter Hammond was there taking his Cranial Morphology images – he will be preparing something for the newsletter in due course, unfortunately the response from families was not as good as last time which was a shame – the images he is compiling will be very useful in helping diagnose Angelman Syndrome from facial features, which will be helpful in the third world where blood tests etc are too expensive and lengthy. Also in clinical conditions this would be a useful tool.
Saturday dawned cloudy but warm – great for the trip to the American Adventure Theme Park – I believe a good time was had by all and the children came back exhausted and sun burned. We had entertainment laid on in the bar – a magician with balloons and a real rabbit! The raffle and DVD draw raised over £420 for ASSERT so many thanks to all who gave prizes and bought tickets and gave money for the DVD. We had a late licence till 12.00 midnight and I guess the usual people were in the bar until the end. Again it was a warm balmy evening with the biting insects out in force!
Sunday was an early start for us – Matthew was awake at 5.30 – but he did go to bed at about 10.00 p.m. so that wasn’t bad. The children and carers headed off for Twycross Zoo and apart from an incident at the end, the venue was a hit. We learnt more from Bernard Dan, and Stephen Calculator, Jill was as ever very clear on the Genetics. We heard about using drugs to control behaviour and also from Dr Mark Hunter who is a Paediatrician with an interest in AS who hosted a workshop with some of the families. Professor Chris Oliver wanted to hear from us what kind of research we would like in the future and Jill took a parent workshop and no doubt was happy to speak to the newly and undiagnosed families. In between we had a lovely lunch (food was great all weekend although I did notice a couple of you weren’t over keen) – the majority gave it 5 out of 5 – one family gave it 10 out of 10! Finally it was time to come together and say goodbye – I found that very emotional as those of you there would have known – I had put my heart and soul into organising the conference and many things in my life were put on hold over the summer – I thanked my family which started me off as they had all supported me, Ken put up with all my moans and groans and me spending less time at work. My daughter Rachel and her boyfriend Ben were carers for Matthew, who allowed us to bring him for once – without them it would not have been possible. My other daughter Laura also deserved thanks, as she often was the brunt of my bad temper when things weren’t going right – she was home alone and I am pleased to report there were no parties whilst we were away! I think the emotion was all part of the relief I felt with a job well done and it had all gone according to plan. Finn Emmerson was my rock in it all – although I did all the admin work she supported me with all the ideas and contacted speakers in the beginning – she kept me on track and spent 9 hours with me making up the Conference Packs and name labels, we met at least once a week throughout the summer holidays and made list after list (she is a Virgo and that’s what they do well!) – without her I could not have achieved what I did on my own. My fellow trustees had put their faith in me and let me go ahead with what we had planned and of course were a support all weekend in making sure everything went smoothly. There were some minor technical problems but all in all everything ran well.
Now it is all over and I don’t have the feelings of anti climax that I thought I would. I feel satisfied that everyone had a great time and got so much out of the experience – I won’t personally be doing another one, but if we get a good team together, hopefully there’ll be one in 2006. Thanks for all the appreciative comments you gave to me at the conference and since. I hope we’ll meet again next time!
Sally Walburn
If anyone would like copies of handouts etc., we do have a small supply – we also hope to bring you some PowerPoint presentations on the website.