Episode 04 - School
When a baby is diagnosed with Cystic Fibrosis, it’s inevitable that over the years, routines will develop which the parents will eventually know inside out. It’s not long though till they have to go off to school, where for part of the day, the parents aren’t the ones caring for them. That journey can be a difficult one for a CF parent, but they most likely will be in very safe hands.
A huge part of school is making friends. Is it necessary to tell new people that you have CF? If so, how on earth do you tell them?
Charles didn't have too much difficulty dealing with Cystic Fibrosis at school because there was always people on hand to help. Like many people, he was also taught about CF in science class at secondary school and was happy to help the teacher by sharing his own experiences. In this episode, you'll also hear a brief extract from Charles' hilarious video explaining how to tell someone you have CF.
Liam's daughter has Cystic Fibrosis and her school have made arrangements to help with her physiotherapy routine and handling her Creon tablets at lunchtime.
Siobhan also had people at school that would help her manage her treatments everyday in a way that worked for her. As she went on to secondary school, she became more independent with everything. She also speaks about how people at school didn't understand Cystic Fibrosis and how useful she's found it to make friends with CF online that she can relate to.
Helen was my form tutor at secondary school and was very closely involved with making sure my Cystic Fibrosis could be accommodated. This included small things like organising for me to have a toilet pass, to much more serious situations like organising my work whilst I was in hospital. You can hear more from Helen about how she uses me to teach Cystic Fibrosis at school in this episode's Extra Breaths.
Cara was diagnosed with Cystic Fibrosis whilst she was at school, so unlike most people, she couldn't explain to her teachers and fellow students what was wrong with her. When she finally did find out about CF, she was able to get some support, but even then some people didn't fully believe her.
Beth is someone who never allows Cystic Fibrosis to dominate her life. She was in hospital during some of her exams, but was easily able to find ways to fit her hospital needs around her school needs.
Julie is a hospital school teacher on the Cystic Fibrosis ward at Nottingham Children's Hospital and she ensures that all the children on the ward are able to continue their learning whilst in hospital.
Ru talks about how people assume she's 'inspirational' for dealing with her Cystic Fibrosis, whereas like most people with CF, she just feels normal. She also says how meeting people with CF online isn't always going to work out.
Morgan was homeschooled but was still able to make friends with people in the neighbourhood. His bad anxiety made it difficult to be confident around new people but most of his friends were totally fine about his Cystic Fibrosis. Not everyone was though.
Presented and produced by William Marler.
Recorded at Birmingham City University.
Featuring the voices of Charles, Liam, Siobhan, Helen, Cara, Beth S, Julie, Ru, Morgan, Aidan, Nathalie, Benedict, Sammy, Jack, Steve, Sam, and Beth V.
Music by Ben Weatherill.
Illustration by Vicky Neville.
Thanks to Sam Lewis for his keen ear and ever-helpful advice.