Living with ulcerative colitis (UC) can be hard on both kids and their families. If your child has been diagnosed with this condition, putting together a support plan can make a huge difference in everyday life for them and for you.
Listen to their concerns. Living with a chronic condition such as UC can be an emotional roller coaster for children at any age. Speak honestly with your child and let them know that you are always there to listen. That will help them feel more grounded through the ups and downs. The kind of information you share with them about their condition will depend on their age. Groups like the Crohn’s and Colitis Foundation offer age-appropriate resources on UC for younger kids and teens.
Communicate with your child’s school. Students with medical conditions are legally entitled to accommodations to ensure that they can have academic success. Talk with school professionals like the principal, teachers, and the school nurse about creating a 504 plan for your child. It can help your child get what they need, like access to a private bathroom, the option to do take-home exams and makeup work, and to work with a tutor. The school counselor can also be a source of emotional support for your child on an ongoing basis or if something comes up during the school day. Your child may not want everyone at their school to know about their condition, but having a few key staff members up to speed and able to support your child can really help.
Connect your child to kids who understand. One of the hardest things about having UC is feeling like you are different from everyone else. When your child can talk with other kids who have the condition, they’ll understand they are not alone. They may be able to get tips on how to handle everyday situations, too. There are also summer camps specifically for kids with inflammatory bowel disease where they can be with peers who understand exactly what they are going through. You can ask your child’s doctor or care team for peer-support resources.
Create a community of support around your child and family. With your child’s permission, invite friends and family to be a part of their support and care team. You can educate them about the condition and how it affects your child’s everyday life. You could even consider bringing another adult along to doctor’s visits so that they can be an informed resource for your child.
Take care of yourself. Just as children living with UC benefit from support, so do their caregivers. You will be better able to help your child manage their condition if your emotional well-being is strong. One of the best ways to feel supported and less isolated is to reach out to parents who know what you are going through. Your child’s care team can connect you to local resources.