In July 2003, my son William (pictured in the middle below) was born with a unilateral cleft lip palate which was diagnosed in utero at my 20 week scan. We were very quickly made aware of CLAPA, but for 9 years, the only contact I had with them was as supplier of feeding bottles. I decided that I didn’t want Will to be labelled as a child with a cleft lip and palate and therefore chose not to get involved in any way. All that changed in September 2012 when I received the latest CLAPA magazine. Inside was an interesting feature on the Young People’s Council which CLAPA runs. With growing curiosity from Will about his lip, I read the article with interest and noticed they were looking for new members. At age 9, Will was just eligible to join so I showed him the feature and his excitement at the possibility of being a council member was fantastic! Just over one year on, our involvement with CLAPA now knows no bounds!
On the train down to London for Will’s first meeting as a Council member, I asked him what he was looking forward to most. His reply “I just want to meet other people who are like me” made me feel incredibly guilty about shying away from any previous involvement with anything cleft related. All I can say now is thank goodness we eventually found CLAPA as being a Council member has done Will’s confidence and enthusiasm the world of good. In turn, I thought well if Will can do this, so can I!
I’d also read a feature on CLAPA Parent Contacts and after a fantastic 2 day training course in York, I also become a parent contact, on hand to offer advice and support to other parents or even just a friendly ear to listen. Often the most contact I have with other parents is on an informal basis through the CLAPA facebook page which has also been a fantastic resource for me, as Will progresses through the different stages of his cleft journey.
I have also recently represented CLAPA at the nursing conference in York, manning the exhibition stall and speaking to delegates, who were largely heath visitors, about cleft lip and palate and CLAPA. Out of that, I am hoping to be involved in meeting with student health visitors to raise awareness of cleft lip and palate. In addition I have recently spoken to Will’s cleft nurse about the possibility of becoming a clinic volunteer which means I would be on hand in the waiting room during a cleft clinic should a parent wish to have a chat with me or find out more about CLAPA.
Finally, I have also very recently been invited to be a member of CLAPA’s new Regional Coordinator Project Advisory Group which I am very excited about. The group will provide strategic level advice and guidance on the Regional Coordinator Project which aims to engage and support people affected by cleft lip and/or cleft palate at a local and regional level. By 2017, CLAPA aim to have 9 Regional Coordinators in place across the UK to coordinate and deliver these services.
If after reading this, you (hopefully) feel inspired to get involved, then do please get in touch, CLAPA would love to hear from you!