I accepted an invitation and attended the Erasmus+ project Education information day hosted by the BDFA and held at Linden Lodge School.

The day was very informative, I learnt alot and I was very pleased to have Annabelles new SENCO attend from her new school of which she starts in September.

One question the project asked was when is it the right time to make the transition from Text to braille when a child has the start of dementia?. In most cases of Batten Disease the diagnosis comes well after the child has started to loose their sight and in some cases dementia has already started so learning braille would be difficult. It was made very clear that braille needs to be learnt early, with this information we are hoping for Robbie to learn Braille alongside him learning his letters when he start school in September. Annabelle started to learn braille last January and is now a natural at it.

There was also a talk on communication, and that it is a very good idea to have Speech and language therapy from the moment of diagnosis. Every child has the right to communicate, once a child has lost their speech they still can understand everything and they still need ways to communicate. Different parts of the brain work for different things, the child may struggle to find words but they can sign them. So teaching the children a sign language, tactile signing will help their communication skills.

The afternoon finished with a Professor Adam Ockleford talking about his music therapy project. Like I mentioned before, different parts of the brain work at different times and communicating via music proves this theory. Children are taught rhythms for speech and they are taught to sing sentences instead of saying them. Music plays a vital key role in anybody’s life, we can all relate to that moment when a certain song comes on the radio for example. Music can trigger memories which helps deal with dementia. Music can be used to influence the mood of a child, such as calming music to allow the child to fall asleep etc.

I also got to meet other parents, of which feels so good. The relief to talk to someone that knows exactly how you feel and share experiences with is just a therapy in itself.

A massive thank you to Harriet Lunnemann and Barbara Cole from the BDFA, Angie Thompson from Linden Lodge and Bengt Elmerskog & Anne-Grethe Tossebro from the Erasmus+ project for a succcessful informative day.