5 Things I Told My Son's Teachers About His IBD Diagnosis Before School Started

My 3-year-old son was diagnosed with IBD (inflammatory bowel disease) earlier this year. Since his diagnosis, our focus as a family has been on enabling him to stay positive and get on with his usual activities. For us, it’s important that he is not defined by his diagnosis or made to feel different from his peers. In our home life, we have a number of strategies we use to achieve this goal, but his forthcoming transition to preschool presented us with a new challenge. How can this support be maintained when it is out of our control?

Time will tell, but we hope our proactive approach and open communication with his school will ensure he is empowered in a school environment.

Every child and family walks their own path with IBD and has a unique experience. We are fortunate that our son is currently in remission. The following guide is based on our experience in the hope that it will be of use to others. 

As soon as our son was awarded his place at school, I contacted them to organize a meeting with his new class teachers and head teacher. I wanted to make sure the school was aware of his diagnosis and our approach to it as soon as possible to give them the time they needed to access appropriate information and consider their questions and concerns. Here are the key things I wanted the school to know.

1. IBD is more than a tummy ache.

Awareness about IBD is increasing, but many people still haven’t heard about it or have misconceptions about it. Often people assume it means people get a “funny tummy” or that it’s a condition that can be successfully managed through diet alone.

Crohn’s & Colitis UK has created an excellent guide, “Children & Young People With IBD: A Guide for Schools,” which can be accessed free of charge from their website. I took a copy of this to the meeting and used it as my starting point to help guide the discussion and educate my son’s teachers about Crohn’s and how it affects him. I wanted them to be aware that it is more than an upset tummy — it can make him feel tired; he might have aching joints, increased or decreased appetite and tummy pain; and he needs easy and discrete access to the toilet at all times.

I also wanted them to know about the treatment he has received in the past to get him in remission and the implications of the immunosuppressant he takes to prevent and minimize further flares. For me, it was important for the teachers to know the serious nature of IBD but also hear about how we are managing it though a combination of medicine, diet and carefully managing potentially stressful and upsetting life events (such as starting school).

2. Uphold my son’s dignity and treat him with respect at all times.

I wanted to make sure strategies were in place to create an inclusive classroom in which my son is never made to feel different, despite his extra needs. The physical symptoms of IBD can have a psychological impact as well. With a focus on enabling rather than discriminating, I requested that seating plans should always be considered so that my son can easily leave the classroom when he needs to use the bathroom. If my son is feeling tired, an alternative activity to playing outside or taking part in PE should be casually offered as though it’s not a required adjustment. I requested that the teachers treat my son with a level of understanding, consider how he may be feeling and deal with situations in a way that minimizes feelings of exclusion, not being able to do something or feeling different. 

3. Be prepared for absences. 

My son may need “rest days” at home if he is feeling his symptoms more acutely. He also needs to attend hospital appointments and have regular blood tests. At home we frame these as positive experiences and explain that the doctors always like to see him because he is so amazing and doing such a great job. I wanted to make sure this positive attitude was further supported at school and requested that teachers do not make reference to his diagnosis and instead frame time away from school as necessary to help keep him strong rather than focus on the things he has missed out on.

4. My son may have IBD, but IBD does not have him. 

My son has a chronic illness, but this does not define him. I wanted the teachers to know about his physical and psychological strength, and his immense resilience. In the meeting I emphasized the importance of seeing him for the person he is and focusing on his unbounded curiosity, his love for learning, his creativity and his imagination rather then the potential limitations IBD presents.

If at times he needs differential treatment, this should be presented in a sensitive way so he is not aware of this. If at times he needs extra emotional support, it should be offered with genuine care and compassion. My son may have to work harder and stronger than some other children, but he is incredibly capable when given the correct support.

5. Communicate with us. 

The teachers needed to know we are in this together — open and honest communication is an essential part of caring for my son. We welcome questions and do our best to answer them. We also need to know about any concerns teachers may have so we can work together to address them and develop positive interventions and strategies. Similarly, teachers need to know of any significant changes or specific challenges my son is facing.

To help with this, we brought a small exercise book that serves as a “home link.” This book goes to and from school in my son’s school bag, and we use it to write messages to each other. Sometimes questions and concerns can be dealt with in the book with a written response, or the book can be used to organize face-to-face meetings or telephone conversations when needed.

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