Hi, I’m Claire Swan and I’m a SWAN UK Parent Rep for Caerphilly, South Wales. I have two little girls Holly and Lucy, my youngest daughter Lucy is my SWAN.
I work within the local health service with children and adults who have varying disabilities and health conditions, but it wasn’t until having Lucy that I began to appreciate how hard it can be bringing up a child with additional needs.
I am qualified to level one in British Sign Language which is something I’d always wanted to study, but having Lucy really gave me the push I needed to go back to college and learn.
Lucy was always a very quiet baby who didn’t really cry, but we didn’t worry too much until she started missing milestones and wasn’t really responding as we would expect. We sought advice from our health visitor at the time who reviewed Lucy and referred us into an assessment nursery at 11 months old. We suddenly had appointments coming at us from all directions and our family was thrown into a brand-new world of unknowns.
Lucy was diagnosed with hypertonia, hypermobility, global developmental delay and eventually sensory processing issues. She is currently non-verbal. Lots of professionals were involved with Lucy but no one could tell us why she had these conditions or what to expect for her future, so she was referred to the genetics team for more tests.
This new world felt very lonely and after searching I came across SWAN UK. I filled in an application form but wasn’t sure whether or not to send it off. I ended up doing so and I’m so glad I did. I became a member in February 2019 and have made lots of friends through the SWAN UK online forums who were experiencing the same feelings and issues as my family. I began to feel less lonely and isolated.
I could see all the wonderful SWAN UK events happening around the UK and I really wanted to bring some of these events into my area, so six months after joining I applied to be a Parent Rep. I’m hoping that in my role as Parent Rep I can help create a larger support network in Wales for families living without a diagnosis for their children.