When my son was diagnosed with Crohn’s disease at the age of six I was overwhelmed with a mix of emotions.
On the one hand, I was relieved that after months of tests, questions, and watching the intense pain he was experiencing on a daily basis, we were finally able to put a name to the disease that was destroying Robbie’s body in front of my eyes. On the other hand, I felt a sense of defeat and helplessness because there was no cure, no known cause, and little understanding of the pain and chronic suffering Robbie had to deal with every day.
Crohn’s disease is one form of inflammatory bowel disease (IBD) which is an umbrella term for Crohn’s disease and ulcerative colitis. People with IBD experience abdominal pain, cramping, fatigue and diarrhea.
As a bystander to my son’s disease, I felt limited in what I could offer to help him cope so I became his caregiver, advocate and biggest supporter. Together, Robbie and I created the charity Robbie’s Rainbows, in an effort to help other children with the disease find access to treatment and support.
We were ready to move forward with the hand we were dealt and were finding peace in the opportunity to help others in similar situations to ours. Little did we know that receiving a diagnosis was just the beginning of a long journey to finding relief for Robbie’s daily struggle with Crohn’s.
In addition to pain, skin afflictions, fatigue and malnutrition, those living with the disease frequently experience the urgent, unexpected need to have a bowel movement which requires immediate access to a washroom. All of these factors, along with many side effects of various treatments lead to day-to-day fluctuations in energy, concentration, participation, and achievement.
This can be tough on kids in school, especially if there is a lack of understanding by teachers and students. Robbie faced many hurdles at school. He was exhausted all of the time, was always fearful of having an accident at school, and had to deal with kids who would tease him because his face was puffy from medications. It was heart-wrenching to watch him struggle physically and emotionally in a place where he spent the majority of his day.
We were constantly working with Robbie’s medical team to come up with a treatment plan that worked for him and would support him better during the school week, but there seemed to be a missing piece. What he needed was his teacher to fully understand the challenges he was facing so that we could work together to make school a better experience for Robbie.
For young kids like Robbie, it’s difficult for them to speak up to their teachers when they are experiencing a flare-up. It’s also extremely embarrassing for them to have to request to use the bathroom multiple times throughout a lesson. Keeping all of this inside leads them to feeling stressed because they feel they may have an accident. All of this takes them away from what they should be doing in school – learning.
Having Robbie face this situation in school made me think that I had to find a better way to educate his teachers about his condition and become an advocate for him and his rights in the classroom.
Through many conversations with the school, we found that by applying a couple of accommodations Robbie’s teachers were able to make a world of difference in his educational experience. Often times, it’s a lack of understanding of the needs special kids like Robbie have, such as taking into account bathroom access when planning field trips. We discovered that little things that are not top-of-mind to many teachers can have a severe impact on a student who struggles with IBD, and all it takes is educating teachers about what these things are.
Through our own struggles and experiences with this, I found a plan that worked for both Robbie and the teachers. I wasn’t asking for any special treatment, but simply use of the resources that the schools already had in place to help other children with disabilities.
We were finally on a good path towards understanding and empathy, and I now knew what it took to prepare the teachers and Robbie for the upcoming school year.
Through Robbie’s Rainbows, parents would often ask for advice on educating their schools about their children’s diagnoses. It made me realize that this wasn’t just something my own child was dealing with – there seemed to be a lack of understanding about the needs of IBD students throughout the entire school system.
In a joint collaboration, Robbie’s Rainbow and the Canadian Digestive Health Foundation (CDHF) created Blackboards and Bathrooms, a resource aimed at helping teachers understand what IBD is and bring to light how symptoms and treatment can impact health, behaviour and academic performance. The program talks about pain, the impact of various therapy options, adapting expectations for participation in field trips and physical education, and social issues like bullying. It highlights the importance of immediate bathroom access and even includes a personal “All Access Bathroom Pass” allowing students immediate, frequent and unrestricted access to the bathroom.
Blackboards and Bathrooms is a free communication, education and strategy piece for teachers, supported by valuable insights from doctors ensuring that this essential aspect of disease management is not left to the child to manage on their own.
We encourage parents to print the materials and bring them to the attention of their child’s principal and teachers to ensure that their child can reach their academic potential and thrive, despite living with this chronic, lifelong disease.
Looking back, I wish Robbie’s teachers and school had Blackboards and Bathrooms. It would have made a huge difference in his academic experience and would most likely have provided him with the support and empathy he needed. Today, it makes us happy to know that our experience will give other parents and teachers the tools and information they need to give students with IBD a chance to thrive in school.