The Crohn’s & Colitis Foundation of America recently featured this question from a parent on its Facebook page:
“My son was just diagnosed with Crohn’s at the end of last school year. We did a lot of resting over summer break and he was feeling almost normal again. School is now back in session and he is starting a flare up. I know he feels bad and I am letting him take his time in the morning but I want him to attempt to go to school. I don’t want to push him too hard but I think it is important that he try to start the day and then if it’s too much come home. How do you other families handle this?”
This post received nearly 200 comments and advice from parents, a nod to the fact that while going back to school is a time of excitement, it can also be very stressful if your child has a recent diagnosis of inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis. In children with IBD, the digestive tract becomes swollen and inflamed. The Centers for Disease Control and Prevention estimates that IBD affects about one million Americans, occurring most frequently in people ages 15 to 30.
To help with the transition back to school, I’d like to share eight tips for parents. These tips and more are also in a video produced by Seattle Children’s.
1: Know what your child’s concerns are as he or she heads back to school
One of the first things that you’ll need to do is talk with your child about what he or she is concerned about in going to school. Armed with that information, you can then help advocate for your youngster and address specific concerns.
2: Advocate for your child at school: Talk with a teacher, nurse or counselor
Talk to the person you’re most engaged with at school, whether that’s a nurse, teacher or counselor, and let them know what’s going on with your child. Also, encourage teachers, the school nurse, counselors and coaches to review information on Crohn’s and colitis.
3: Bring an extra set of clothes to school
Be prepared: Bring an extra set of clothes to school. Keep them in the nurse’s office or in an extra gym bag in the child’s locker. Having a small, discrete air freshener that doesn’t have a floral fragrance that they can use when they’re in the bathroom can eliminate embarrassing situations. Also consider keeping wet wipes on hand.
4: Develop a 504 plan
School officials can help you navigate the road to get your child on a 504 plan. The “504” refers to a section of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990. The plan provides for accommodations that a child should have in place to help ensure their success in school. Your child’s gastroenterologist can provide some recommendations about what should be in the plan. This includes ensuring access to the bathroom, so that bathrooms are not locked, and your child can quietly slip out of class, without raising their hand or having a teacher call on them. It’s important that the teacher understands that their urgency is different than our urgency to go to the bathroom, due to their medical condition.
5: Stop the clock for testing
Your child should also have in place a process called “stop the clock” testing. Stop the clock can be used at any age, including during college exams for the SAT and ACT. If a child has to leave an exam to go to the bathroom, the time that they’re gone will be added to the time allotted. Stop the clock provides an equal opportunity for your child to be as successful on a test as any other child in the room.
6: Make sure your child has healthy snacks to eat, and a water bottle to stay hydrated
Many children with IBD can’t eat a full meal at one sitting. In order to get appropriate calories, they need to have snacks throughout the day. School officials should understand that it’s not only appropriate but encouraged for children to have healthy snacks and beverages available throughout the day. Ongoing diarrhea can lead to dehydration, so children need to have water and water bottles, too.
7: Discuss a late-arrival plan with school officials
Morning time is challenging for people with IBD. When your body wakes up in the morning, so does your gastrointestinal tract. Your child can experience severe cramps and extended visits to the bathroom. This can cause even the most well-intended child to be late for school. They shouldn’t be penalized for that. If there’s an opportunity to arrange their class schedule so that they can have a late arrival, that’s the best solution. But if not, the teacher needs to work with you and your child on how to make up or accommodate for those late arrivals.
8: Make sure your child has an “out” on days when PE classes may not be a good fit
Physical education for kids can be especially challenging for kids with IBD. Remind teachers that they can’t always tell from looking at your child on the outside how they feel on the inside. Your child should determine their level of participation in PE class each day. There should be alternative activities available to them, and these should be without penalty and it should be done discreetly, without calling attention to your child. Overall, partnering with your child’s teachers and other school personnel is important for all of these topics. They may not know anything about IBD, or you may find out that there are five other children with IBD in the school.
Teresa Wachs is an RN with Seattle Children's.