Place your bets!

Posted on: 26/04/2016

Ava is enjoying being back at school after the long Easter break, during which she really missed her friends, most of whom were away. After much deliberation, her teaching assistant Miss Charlotte decided to trial the school wheelchair in the playground, to see if this helps Ava to socialise more at break times, when she usually sits on the bench and watches the others play. I was a little worried that it would make her feel more different or even embarrassed. Ava wasn't happy after the first day - although surprisingly not for the reasons I had supposed. She admitted that she felt scared without the close presence of Charlotte, who physically supports her during all movement and transitions. However Charlotte reported that the other girls were like bees around a honey pot, so she has persevered. Day 2 was a success and Ava is now thoroughly enjoying the way it allows her to feel at the centre of activity and also gives her a sense of independence. The school is however, finding it increasingly difficult to manage Ava's mobility issues, specifically the stairs, which she finds very tricky to come down. Unfortunately there are no ground floor classrooms and the possibility of a stairlift is not looking likely, apparently due to fire regulations. So we are being forced to think about whether Francis Holland can continue to meet Ava's needs in the longer term. In the meantime, I have been busy attending conferences, including one about newborn screening, as I am determined to ensure that one day all babies will be tested for MLD. Another was about the NHS funding crisis in palliative care, which I attended on behalf of the MLD Support Association UK. Bizarrely, this was held in a casino! Hilariously, I was told off for taking a photo. In case I used it to study the tables and worked out how to cheat!! Ocean's Eleven eat your heart out. If only the NHS problem could be solved that easily...