By Yvonne Milne.
Families gathered together in Thornbury, outside Bristol for a south west Regional Day. These events, which are free to families, normally take place in a special school and New Siblands Secondary School was an excellent venue. It was a modern building with lots of space and facilities.
After registration, settling in and some coffee, families were able to listen to four speakers who were experts in Rett syndrome. Cindy-Jo Morrison, Music Therapist, showed us how a girl with Rett syndrome developed communication skills through music therapy. Sally-Ann Garrett, Speech Therapist, talked to us about the eyegaze technology and Dr Ana Abdala, a researcher into breathing difficulties, updated us on her research into sleep apnoea and Mr Alex Gibson, an orthopaedic surgeon, talked about spinal surgery on people with a scoliosis.
Besides the lectures, each of the professionals was available for one to one sessions with parents and carers. During the day, siblings were involved in art workshops. We were very fortunate to have with us a representative of Technology Guru, who enabled people with Rett syndrome to have a 15 minute trial on the Tobii eyegaze equipment. This proved to be very popular.
Lunchtime was the perfect opportunity for families to get together and chat in the fabulous dining area in the school. We were very honoured to welcome a lady of 72 who had Rett syndrome to the lunch.
The day was rounded off with a Multisensory story session by Kim who, besides singing songs to the accompaniment of her guitar, used a variety of drums, rain sticks, ocean drums, ribbons, feathers and all sorts of multi sensory equipment.
Our next regional days will be held in Yorkshire (North West) in June and in Surrey (South East) in September.