A new school year presents a lot of new opportunities like new teachers, subjects and the possibility of new friends. But that newness also comes with a good degree of uncertainty, which can be frightening for a student with a chronic illness, such as Crohn’s disease or ulcerative colitis, collectively known as inflammatory bowel disease (IBD). That anxiety can be especially strong if the diagnosis is new, and the upcoming school year will be the child’s first with IBD.
“The first day of school after an IBD diagnosis can be hard, but with some planning it’s quite manageable,” says Michael Docktor, MD, of Boston Children’s Inflammatory Bowel Disease Center. “Most children with the condition are able to quickly return to their normal school routines, all it takes is a few extra steps to make the return as seamless as possible.”
To ensure school is a positive experience for your child with newly diagnosed IBD, Docktor suggests speaking with your child’s teachers, school administrator and nurse as soon as possible to discuss any concerns or questions you may have. Topics may include:
- Inform. The teaching staff should know that IBD is episodic in nature and the child may need to make frequent or urgent trips to the restroom. Depending on classroom rules, he or she may need special permission to do so.
- Adapt. Depending on the severity of the condition, the child may miss several days of school over the course of the year and will need to have work sent home and/or adapted based on classroom availability. Teaching staff should be aware that the scope of these absences may not happen at regular intervals and could lead to difficulties with some curriculum.
- Prepare. If the child has specific dietary restrictions, the school should know about them and have access to safe snacks and treats for birthdays and/or classroom celebrations. This may include permission to carry water bottles or discrete snacks into a classroom.
- Accommodate. For some children, adhering to a medication routine is very important. Finding ways to accommodate that routine, without disrupting classes, may take some planning.
- Educate. If the child is missing a lot of school, his or her peers may have questions about the absence. Some families opt to address it with the child’s friends and classmates to dispel any myths, concerns or address misinformation about the condition. If your family wishes to discuss the issue, speak with the classroom teacher about the best way to do so.
- Explain. A child may occasionally have cosmetic changes either from the illness itself, or as side effects from treatment, like puffy cheeks from steroids. These changes may be difficult for the child to understand and/or explain to others. Speaking with the child’s teacher, physician, counselor or social worker may be helpful in explaining this to the child and identifying ways to anticipate questions from peers and rehearse responses.
For additional information on helping a child live well with IBD, download this free, child-friendly digital guide from Boston Children’s Inflammatory Bowel Disease Center.
Keep the momentum going
By addressing these potential concerns early—and planning appropriately—the family and teaching staff can help make the first day of school with IBD less overwhelming for everyone. It’s important to remember that these early meetings are just the beginning of what should become a year-long discussion.
“An ongoing collaborative partnership between home and school is an important part of managing IBD, because the child will be spending most of their days in the classroom,” Docktor says. “But as with with any chronic condition, management may change with time, so keeping those lines of communication open and adjusting plans as needed is very important.”
“Depending on the extent of your child’s condition, he or she may need a individualized health or 504 plan,” adds Janis Arnold, MA, LICSW, a social worker with Boston Children’s Inflammatory Bowel Disease Center. “If you are unsure about how to obtain such a plan, speak with your child’s school, healthcare provider or a social worker for help.”
For more information on how Boston Children’s treats children with IBD, or to speak with one of our IBD specialists, please call us at 617-355-6058 or visit the Inflammatory Bowel Disease Center website.