Stick with us; we will not give you a blow-by-blow account, just the interesting bits!
1 Our first session was on Behaviour in Children with Angelman Syndrome (AS), presented by Chris Oliver from the Cerebra Unit at The University of Birmingham. Their psychology students and staff conduct research on what causes children with particular genetic disorders to behave in a characteristic manner. To put it simply, damage to the genetic code on a specific chromosome (15 in Angelman Syndrome) lead to abnormal development of a specific part (or parts) of the brain. We can get you a DVD on this if you are really interested.
Chris used complicated charts but kept our attention with humour and short videos to explain that children with AS display excessive sociability. All of us are born programmed to turn on our 'magic beams' so we can bond with our Mum and get fed. The inhibitor that gradually turns down this behaviour in childhood is inherited from the maternal gene of chromosome 15 Kids with AS either lack this gene altogether or it is switched off by the paternal gene. Anyway, rather like a drunk at a wedding, they indiscriminately turn on their charm all the time with a big smile and a wave. Mostly they get a smile and a wave back and they are happy.
However, if you refuse to interact with a child who has AS, they will try almost anything to get the positive attention they crave. A classic example might be when two adults are talking to each other while supposedly supervising a child with AS. The child turns on a big smile and no one responds, so he pulls hair. The adult turns to the child and says "That hurt!" and the child laughs. It is quite natural for the hurt person to think that the child with AS takes a delight in hurting other people, but the truth is, he takes a delight in getting you to look at him.
We talked about ways to manage this "excessive sociability." The key point is that you cannot turn off the need for a high level of social interaction in the child with AS, you can only train him to be more appropriate in the ways he seeks attention. One of our regular carers said "So, it's like Autism in Reverse". Children with AS have a very strong need for social interaction, but very limited skills to obtain what they need. Their lack of speech is a double disability in this respect.
2 Funding is always a good topic. Our second session was led by a campaigner called Steve Broach from Every Disabled Child Matters http://www.edcm.org.uk/ We should all be familiar with the Every Child Matters campaign, but it left disabled children out in the cold. EDCM fights to get the needs and human rights of our children met through legislation and funding. From 2007 to 2011 there will be more money that is ring-fenced for local authorities to spend as follows.
£5 million for parent forums
£35 million for childcare
£19 million for transition to adulthood
£370 million for short breaks.
Hunts Parent Carer Forum will try very hard to find out what is happening to this money in Cambridgeshire and tell you how to access it. Watch this space!
3 We attended two afternoon sessions on Transitions, both led by parents who had been through the process. These sessions were absolutely wonderful and moving for us, showing the light at the end of the tunnel. The bad news, much repeated, is "You have to fight for everything and not take No for an answer." Our children will all end up in some sort of assisted residence without us. We need to prepare for this very early. For the move to college we should start looking at the options before the age of 14 and get our child's name on the waiting list. You have to look at the local provision first but, if you can show it is not suitable for your child, it is possible to send them elsewhere. The discussion on this topic was led by Ruth Brennan who lives in Cambs but whose son Patrick attends a college in Kent. When asked what Patrick was studying at college Ruth replied "He is studying the Abolition of Slavery, he has to do things for himself!"
After College, at 22 or 23 years old, Patrick will have to find himself a home. Ruth, of course is working on this now, but Ben Robertson from Herts has already moved into his house in Northamptonshire. He actually helped his Mum give the presentation about his new home where he lives with his friend Luke and a small team of carers. Ben is a total star. He attended the whole day of lectures. His package is managed for him by Mencap but he still doesn't have his full team of carers organised. It's hard to get the right people so parents still step in to fill the gaps. The most important aspect of the presentation was that it is really Ben and Luke's house. They chose the furniture, they make a lot of decisions and they signed the contract with their local housing association. A special contract was prepared using symbols. Ben keeps a photo/video diary so we saw a lot of the things he was talking about with the aid of AV equipment, his talk-box and his Mum. Of course, it was hard work to get all this organised and to get the funding in place.
In the breaks there were the usual trade stands to examine, including Fledgelings (see our Hunts PCF links page). 'Always something new there. We find it impossible not to buy something. There was one man who made giant cots for big kids and one who made excellent tricycles. William Macgregor at Sam. Pepys' School has one of them. We looked at Sensory Room equipment and communication devices but a couple of new stands caught our attention.
Safespaces http://www.safespaces.co.uk/ are based in Lancashire. They make a rectangular tent-like room which you can easily assemble indoors. They can be used as sensory rooms, or for sleeping, or just for privacy. They are designed to keep your child (or an adult) safe and comfortable. I tried to turn one over and could not. I could see a use for these in schools and respite centres, as well as at home. Check them out.
Jim and Hanna Stevenson
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