Written by Sarah Thomas, parent carer
As a parent carer of a son who will need lifelong support, I find the future a scary place. There are lots of good things about being Owen’s Mum, but it is difficult to shake the cloud that lingers on our horizon; what will his life be like as an adult and who will care for him and about him when I am no longer able to?
I sometimes think that if I could live forever all my troubles would go away but actually that is not true either, because no matter how much I love Owen, I know that alone, I am not enough to ensure that he leads a fulfilling and productive life. He needs other people to care.
That is why I wanted to find out about Community Circles.
I live in a small rural village in Shropshire and up until recently Owen attended our local primary school for 3 days a week. Opposite Owen’s school there is a large house that is home to 4 young people with learning disabilities. It is in the heart of the community. Or is it?
That house often reminded me of a house from the Harry Potter Stories. It is in plain view but invisible to everyone. I have lived in this village for 6 years and not once have I ever heard anyone mention this house or the people who live there, worse still I have never seen those young people who live in it, participating in our local community.
These young people are living in the community but they are not part of it. That is not what I want for Owen.
I know that I won’t always be there to look after Owen and that I need others to be able to do that for me, but my experience to date is that it is easier said than done. Recently we moved to having some of our social care delivered via direct payments. Things started well but after a relatively short period of time things were thrown into chaos by his PA resigning, since then we have struggled to get the right support in place. The idea of having a group of people to help me with this challenge is very positive, because sometimes it is hard to keep going. I know what I need to do but sometimes as Owen’s Mum, it is overwhelming and it is at times like this that I think I need a ‘Circle’.
Parents of children and young people with a disability or additional need are used to having to work hard to get the right support for their children, but it is often a lonely journey. The more people who care about Owen the better it is for Owen and the better it is for me!