Today was a fabulous day. To start with Jude decided he wanted to make his own toast for breakfast. Any sign of self-help in Jude is startling as he is possibly the least motivated child I’ve ever met; he hates to try to do things for himself as (I think) he is massively afraid of failing. This show of ‘giving it a go’ is a huge step for him and one I will definitely be encouraging.
By Alice Soule
I don’t say that very often but we’ve had, overall, a very positive weekend and it has given me a great boost of enthusiasm. Yesterday Jude went out for a few hours with Jade and again, late this morning she came and took him out for another few hours; they went to a garden centre with a large animal section with reptiles, fish, etc and Jude had a wonderful time.
I’m amazed at how he comes out of himself when he’s with Jade and his other friends. It inspires me and shows that my decision to encourage him to have a support worker and to expose him to more social settings was the right thing to do. This will give him a solid basis for meeting new people and to grow up as independently as possible when he hits his teen years and even secondary school next year.
So today was a special day. Following Jude’s few hours with Jade, we went to meet him at Jubilee House as they were holding a family picnic event. I was so looking forward to being there with Jude to meet all his friends, the carers involved and to just see the garden he talks about so much. It was such a wonderful experience. Jude was so proud and loved showing us the sensory room, the garden, and the sensory garden. Later on when he needed the toilet, he told me he could go on his own and that I could wait in the hallway for him. To see Jude so proud of something like this is truly wonderful. He behaved beautifully, smiled and chatted constantly and even Elsa had a great time, running off to play with Jude or some of the others.
I had the chance to chat to some of the staff which was lovely. I’ve heard a bit about them before but to meet them gave me the chance to express my wonder in the things they achieve and discuss things about Jubilee House that I can’t with Jude. It’s sad that places like this are not considered a priority by councils and the Government and actually, they do not receive funding for as much as they really need. Centres like this are a lifeline to families of disabled children. The children have a wonderful time, receive one-to-one support from trained people (who very much become their friends), they go on fun day trips and learn to socialise.
At the same time, the parents get a break, siblings are able to do things they cannot readily do and thus everyone is happy. As a parent of a disabled child, you sometimes just need breathing space so you have the chance to recuperate and recharge your batteries. I cannot explain the feeling of constant activity that occurs when you have a disabled child, both within your mind and physically from endlessly following them around the house and garden. You cannot rest, there is no chilling together on the couch and watching a film or playing games together. It’s more of a caring role than a typical parent/child relationship. I love Jude dearly but he is draining and thus, without Jubilee House and the magnificent things they do for him, I think I would have gone even more insane than I have already.
Why should organisations like this constantly have to fundraise just so they have adequate provisions for some of the most vulnerable people in our society? Funding is being cut for organisations all over and it is the smaller ones such as Jubilee House that will see the biggest impact as people often choose to give money to those that are more publicly recognised.
If you feel you can help organisations like this in some way, or perhaps your work could do something to help them then please, please do so. I don’t even just mean donate money, I mean get involved. Call up and ask what you can do as I’m sure there would be something. The children are so happy here and I’m actually proud of myself for finding such a setting for Jude to gain further skills and to make some friends. I can’t wait for their next event and I will be sure to ask how I can help them as I’m sure I can be of use somewhere.
Alice Soule is a mother of three children. Her eldest is Jude, (10) and he was born with Microcephaly, Global Development Delay and (undiagnosed but very obvious) Autism. Her other two children are Elsa, 7 and Emmeline 12 months. Jude provides Alice with plenty of challenges as well as much joy and it is using her day-to-day experiences that she writes about life with Jude.