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Another organisation that has helped both Karen and the family is the Westminster Society for Mentally Handicapped children and Adults, aka Westminster Mencap, aka The Westminster Society for People with a learning disability.When Karen was very young we were visited by their "welfare visitor". She was an energetic young mother who had lots of helpful information and visited me as a friend. She introduced me to some other parents and was also able to be in an independent advocate. Later on various people were welfare visitors and each one told me about different services that the social services and other statutory organisations never told me about. These included music therapy, the Little House-a respite home, Dial a Ride, free bus passes and many other things that helped make life easier and more enjoyable. T
Once Karen started school, she wanted to be with her friends and do interesting things in the school holidays as well as what I was able to do with her and there were two playschemes. One run at and by the school and another run by Westminster Mencap. When education was totally reorganised in London, few schools ran playschemes any more and about this time Westminster Mencap acquired a building in Croxley Road used for clubs and playschemes and then eventually was able to build a leisure centre nearby called the Croxley project . This was physically accesible and has a sensory room and plenty of opportunities for play leisure and education. One year they recieved a generous donation and were able to take a group of children for a long weekend to centerparcs. The picture on the lft shows Karen and her friend Robbie enjoying a disco at centerparcs. The picture at the top of this page shows a visit to a fire station by Karen with the playscheme in 1988 Another wonderful organisation was KIDS, which described itself as working with families of children with special needs.We enjoyed their annual outings by bus to the seaside or Woburn Safari Park or Chessington World of Adventures and their very good Christmas parties.We were able to attend them right up to Karen's 19th year and would probably still be welcome. They are the only childrens parties I know where they serve fish fingers, sausages, chicken nuggets chips and baked beans!They have very good pre school learning schemes which Karen didnt use as she was out of borough and anyway had the home liaison teacher. They also ran a siblings group, had parent meetings on a variety of topics, and even fathers groups and grandparents meetings. I did an interesting training course with them on being a befriender to newly born or newly diagnosed disabled children's parents.More recently they ran a series of workshops and adolescence and sexuality. It was from a meeting at Kids in 1987 that I learned about Invalid Care allowance and the recent judgment in the European Court that it was unlawful to deny it to married women. With the back payment of ICA we were able to put some of it towards our first proper computer-a BBC Model B, which Karen enjoyed learning from.Kids Camden and Kids Kensington have now merged as Kids central London on a brand new site just behind Corams Fields, one of the best playgrounds in London. Then theres the Red Cross in East Sussex which does Activenture Holidays that Karen has been on, usually around December-January where she does everything from abseiling to swimming and has a terrific time. Shes now too old as its for up to 18's but they also have reunion weekends once a year for the oldies. Then theres the Caxton Club, an inclusive club for 12-25 year olds near Buckingham Palace, where Karen likes chatting to her friends, playing snooker, disco dancing and she has even been to their own Island. 
Of course, I must mention the Downs Syndrome Association, once the Downs Babies Association and later the Downs Childrens Association. When Karen was born, some doctors were suspicious of the DCA especially as its chief spokesman was a psychologist and I was discouraged from joining.But Our social worker, the one who ran the parents evenings and who had a disabled duaghter herself used to give me copies of their newsletter , full of useful tips and information and I eventually joined. It was at one of their meetings that I first heard about Statements of Special Educational Need and went about getting one for Karen.They also had a local group with meetings for paremts, an annual picnic and Christmas Party and other events. The National DSA has held very good conferences. I attended one in Nottingham and still remember professor Ben Sachs saying "although people may think that children with Downs Syndrome are not academic, they could all achieve Ph Ds in manipulation."They also had a very useful conference recently on Growing Up . I have enjoyed their newsletter for many years and have seen great changes in attitudes to and support for people with Downs Syndrome in the last twenty years. Other excellent organisations include Parents for Inclusion, the Inclusion Alliance and SCOPE. |