So, I met a fab lady today. She works for an organisation call Jubilee House which offers support, one to one care, respite, day trips out, etc. for children with disabilities. They have an adult section too which was borne out of many of the children in their care not wanting to leave! Jude has been allocated 40 hours a year (yes, I did say a year) by the council to use on social clubs, one to one care, holidays and the like and we’ve decided to use half of them with Jubilee House. His “Buddy” Jade is just so lovely and I’m so excited to have found this wonderful resource for him; it’s going to help him socialise, learn and become more independent as he moves into his teen years and beyond.
But…40 hours doesn’t go far. Twenty of these are being used for an adventure club over the summer/autumn so really it’s 20 hours with Jade doing fun stuff or just hanging out at Jubilee House playing games and learning basic skills such as cooking. THIS is why I am fighting the council for more support. It’s not because I want to get rid of Jude (as has been mentioned to me before!), it’s because I want him to grow up, be independent and free of having to rely on his mum all the time.
It has taken me 10 years to work out how to play the game and to get Jude what he needs so I feel sad for people incapable of fighting in such a way. The fact that it’s a fight is pretty tragic; why do we not offer these services on tap for children like Jude who can learn and feel at ease in their environment with just a few additional skills and adequate guidance.