Jessica has had her stoma (apple) since being in nursery school. She is starting to understand how to manage her conditions and is growing into a very independent little girl. Currently, she is looking forward to transitioning into high school with her friends. They all know about her stoma and are supportive. They all love Jessica’s Buttony Bear, which regularly goes to school and does the rounds with the other children.
School
Her school has also been fantastic with stoma awareness. The staff wear purple and have been trained to change her bag. The school itself celebrates stoma awareness week and has a medical/changing room with a bed in it, which is very helpful for a child with a stoma bag during the changing process. In her own words:
‘I love school. I have lots of friends. They all know about my stoma and they don’t judge me. I go to after school clubs like choir and football—there is always a member of staff who stays behind in case I need my bag doing’.
Jessica benefits from having a care plan in place at school. Care plans can help others understand the needs of the individual living with a stoma. As every child’s needs are different, schools should have multiple unique care plans in place, so that the needs of every child living with a stoma can be correctly and appropriately addressed. In Jessica’s case, her care plan includes a cushion on her chair, which helps address some of the pain associated with diversion colitis, and she also has permission to drink juice, which helps with her fluid intake. These little changes have a massive impact and can help children get the most out of their schooling experience. If your child would benefit from having a suitable care plan in place, we would highly recommend meeting with members of the school faculty to ensure that the ball starts rolling.
Transition to high school
As Jessica’s parents, we have been active throughout the process of finding the best high school that can match her needs. In one visit, I asked the special education team a lot of questions. They answered them all and introduced us to the nurse and medical room. Having this kind of feedback and input from professional staff can take a massive weight off your shoulders, as it can assure you that the school in question has your child’s best interests at heart. We don’t pick Jessica’s high school until October 2025, so we will revisit the schools to see if they can still meet her needs. The transition to high school is a big change, especially for a child living with chronic health conditions, so we want to try and make it as easy as possible for Jessica.
Family
Jessica’s little sister, Penny, is 18 months younger than her. Penny has always been involved in helping manage Jessica’s conditions, which can be a difficult process for a sibling to understand, especially during hospital admissions and times when Jessica has to have time off school. However, Penny has always been a little superstar and just gets on with it. We always make sure Penny doesn’t feel left out, and makes sure she gets to do lots of fun things and has trips to the toy shop!