Planning with Your Child

Guiding your child through diagnosis and management of their Crohn’s disease and ulcerative colitis is a delicate and often overwhelming task.

The best way to help your child manage his or her illness is for you and your child to be prepared and informed. We can help you start and continue the conversation with your child, the school system and your employer. Your child’s success is achievable!

Talking to Your Child About IBD

Helping your child or teenager understand what it means to be diagnosed with a chronic illness is never easy, especially when you are processing your own feelings and concerns. If your child is a teenager, you will need to help guide them on learning to manage certain aspects of their disease on their own.

The best approach is honesty so that your child will grow to manage their Crohn’s disease or ulcerative colitis with independence and confidence.

Younger children will need more day-to-day assistance managing their Crohn’s disease or ulcerative colitis, but teenagers and young adults can start taking responsibility from the start, with your guidance. We have a few tips for beginning this transition:

Taking Medication

Swallowing pills, getting injections, or sitting for intravenous transfusions are probably not your child’s idea of fun.

  • Talk to your child about the importance of taking their medication on time. Talk about their favorite sports or hobbies and how their medication makes it possible for them to continue to enjoy those things.

  • Consider making a family calendar with medications and times marked on each day so that everyone is working together.

  • Work with your child on being aware of how the medication makes them feel. Does the medication help them feel better or about the same? Are they experiencing side effects? You can use this information to communicate more effectively with your child’s healthcare providers.

Emotional Support

Your child will likely have a lot of feelings and emotions regarding not just their diagnosis and the impact on their life, but the medications, doctor appointments, even surgeries it takes to manage their illness. There are several ways you can support your child emotionally.

  • Keep the conversation about IBD going. Be available to listen to their fears, their hopes, and their dreams. Remember that patients with IBD often experience a rollercoaster of emotions, especially teenagers.

  • Remember to check in with your child or teen about their friendships, schoolwork, sports, and hobbies.

  • Give your child the space he or she may need. That could mean letting your teen talk to their doctor alone from time to time.

  • Enlist the help of mental health professionals if you feel your child would benefit from therapy, medication, or other ways of coping emotionally with IBD.

Obtaining a 504 Accommodations Plan at School

A flare can happen at any time and without warning. Your child is entitled to accommodations to continue and complete their education with a chronic illness such as IBD, but you need to have a 504 accommodations plan (also known as the 504 plan) in place before you need it.

A 504 plan is a legally binding document that allows your child to have specialized accommodations due to their disability. This can include everything from unrestricted bathroom access to being allowed take-home exams when they are hospitalized or in a disease flare.

  • Our sample 504 template for children with IBD can help you get started with understanding your child’s rights and options for accommodations.

  • We have additional resources about taking IBD to school, including sample accommodations that other children with IBD have been granted.

  • Our specialists in the IBD Help Center can help answer any additional questions about 504 plans.

Juggling Work and Your Child’s Medical Care

It can be difficult to balance your career and your child’s medical needs. As a caregiver, it is likely that you will need at least some absences during the year to care for your child.

Common reasons for absences from work include:

  • Hospitalizations

  • Surgery

  • Medication infusion

  • Flares

To avoid facing consequences at work, or even losing your job, you can take leave under the Family and Medical Leave Act (FMLA).

FMLA Basics

  • The FMLA provides up to 12 weeks of unpaid leave in a 12-month period for employers with 50 or more employees.

  • Certain states have less restrictive laws, providing FMLA leave for smaller employers and/or for longer periods of time.

  • You must request FMLA leave in writing and in advance. You do not have to wait for a crisis before requesting FMLA leave. We recommend you request FMLA leave at the beginning of each year on the basis that you are the caregiver for a child with a chronic, often debilitating illness and some absences are to be expected during the year.

  • FMLA is generally unpaid leave. Your employer can require that you apply your paid vacation and sick time to your FMLA leave.

  • Once you have FMLA leave, you cannot be fired for using it, as long as you do not use more than 12 weeks of leave each year.

  • The specialists in our IBD Help Center can answer questions and provide guidance on FMLA.