Simeon Brody
Once again I've had an interesting gig as 'Professor Fiddlesticks', entertaining children this weekend at a conference organised by Sibs. My role was to provide a fun two hours with a circus show followed by a workshop where the children could try out different skills, finishing with an opportunity for some of them to show off these newly acquired tricks to the adults who had attended the meeting.
I'd never really considered the situation that brothers and sisters of disabled children might face. They may have to cope with getting less attention than their 'special' sibling, or face bullying at school, or not understand their sibling's condition. Some of them may be carers for their sister or brother, and families of disabled children may be more likely to be experiencing poverty and exclusion. So Sibs offers a range of help and services to those connected to these families, including social workers.
I brought home an excellent 32 page booklet about developing specific services for siblings of disabled children, which outlines the size of the problem and provides answers to some of them. There are many local groups which give siblings a chance to meet each other ("It's good to be able to talk to people in the same position as you") and receive support, information and help. Oh, and fun too! Sibs has developed a group work model labelled FRAME; Fun, Relieve isolation, Acknowledge feelings, Model coping strategies and Enhance knowledge. One of the aims of this is to try to reduce the negative feelings that siblings may feel towards their brother or sister. The organisation also caters for adult siblings who may have had mixed feelings for years, and parents of disabled children and their siblings to help them support their non-disabled child/ren better, even including telephone support.
I am very impressed by the concept of this organisation and hope that Community Care will do an article in the magazine about their services.
I am hoping to spend some of the next week in my garden tidying up after the summer's crops... things like beans, courgettes and sweetcorn have just about finished so it's time to pile all this material on the compost heap to make some rich compost for next year's crops. Also it's time to prepare an area to take the autumn leaves which will inevitably be falling in the next month or two, so they can rot down and make leafmould, which is an excellent replacement for peat, which we should leave in the peatbogs. Autumn leaves shouldn't be composted with food waste and other garden materials as they break down very slowly over two years, and leafmould is different in character and use to compost.... but they may be mixed together to make a potting mix for containers. So make a chicken wire surround and add as many autumn leaves as you can to this pile, leaving it open to the winter wet. Alternatively, fill bin bags, slosh on some rainwater and make a few holes to let air in... pile these up somewhere out of sight and check them in a year's time.
The work that Sibs does sounds very important and crucial in supporting families with a brother/sister who are disabled.
I found their web page refreshing as unlike some Young Carers groups, they work with sibs of a sister or brother who's disabled. The Young Carers groups I've come across have also included children of drug addicts, alcoholics, etc etc.
At first thought there dosen't seem anything wrong with that. Indeed perhaps it's a sensible way to allocate resources from those who fund groups and of course many children in those situations will need or want the service and respite Young Carers is so good at giving.
However, as a disabled woman, who is also a mother of a child with Cerebral Palsy and a able bodied child, I believe the differences in support needed between the three groups (children/siblings of disabled parents/sib, children of drug addicts and children of alcoholics) is totally different. In fact so much so, that it is unlikely in such a set up any of the groups are getting the level of quality support they need and in my opinion, richly deserve.
However Sibs concentrate on one issue and from their web site seem to shown a deep understanding of how disability affects the dynamics of a family - leading to support for all those involved.
I will be contacting Sibs to find out more about their work and understand they are a national group, with local emphasis.
It's good to see grass root groups growing and becoming effective organisations that make a difference.