Tracy Jackson is a mother of two - Sarah, age 16, and Danielle, age 14. Danielle was diagnosed with Crohn’s at the age of 11, and recently had a colostomy surgery. Sarah is an IBD advocate and GEM project participant. Find more stories from Tracy on her blog and on Twitter @IBDSupportivmom
Every time I see my kid's school number on my phone I cringe. It isn't because she is a trouble maker. It is because my kid misses school regularly because of her Crohn’s. Calling into school when your kid is sick is a part of being a parent, but how do you explain a diagnosis of Crohn’s disease or ulcerative colitis – and how it impacts a child’s life – to your child’s school?
My daughter Danielle was diagnosed at the beginning of her grade 7 year. She had been sick for the last four months of grade 6, and was hospitalized to start the new school year. When she was ready to return to school, I had a number of concerns:
- Will she have easy access to the bathroom? (Would her school’s bathroom buddy system single her out every time she had to go?)
- How will she manage missed assignments and lessons?
- What about her exposure to sick kids? Will she pick up every germ in school?
- What happens when she takes a timed test and she HAS TO GO?!
- How are other children going to treat her?
We were lucky that Danielle’s elementary school was very understanding. As many people know, Crohn’s and colitis (the two main forms of inflammatory bowel disease (IBD)) aren’t well understood by the general public. With a list in hand, I met with her teachers & principal to discuss her condition and our concerns. Working to create a positive relationship with my child's principal, school staff & teachers – providing literature and other educational materials – was a great way to help them understand what Danielle was facing. Allies are important to ensure the smoothest possible transition into school.
We did face challenges – misunderstandings, bureaucracy and red tape. In the end, patience and persistence helped to find a solution. If you encounter challenges, remember to be kind and calm (be a partner in the process), document everything, and – if you don't like the answers you are getting – ask to speak to someone above them. Most administrators want to help keep your child comfortable in the classroom and participating as much as possible.
6 tips for back-to-school:
Bring literature to explain what your child is facing.
Crohn's and Colitis Canada offers great resources on their website, such as educational brochures
and a video that explains IBD with illustrations
Focus on your common goal: creating normalcy for your child.
You know what your child needs best – explaining the needs of your child in specific situations will help the administration to accommodate them.
You may face challenges, and this will come in handy. If necessary, you could enlist trustees, school boards or your local constituency office to support you.
Bathroom access without having to ask and additional time for tests are especially helpful accommodations.
Help teachers to understand that avoiding ‘singling out’ your child in these situations helps to boost their confidence, self-esteem and independence.
Leave a change of clothes in the school office or in your child’s backpack/locker.
Accidents happen. Having access to clean clothes will help them to quickly return to being a kid.
Discuss medications with school staff.
Most schools do not allow your child to carry medications on them, so arrangements will need to be made if your child needs to take medications during school time.
High school is supposed to come with independence, where staff and teachers put more responsibility on the kids and less on the parents. This can be difficult when your kid has additional needs related to Crohn’s or colitis.
High school teachers and administrators look to your child to be a more active advocate at this stage. Your child becomes responsible for speaking up for what they need and want. Students are often responsible for gathering missed homework. If this isn't something your teen can do, ask one of their friends to help wherever possible.
5 tips for heading to high school:
Start the school year off with a letter to each of your child’s teachers.
Crohn’s and Colitis Canada offers a letter
that you can customize – it will help to explain your child’s disease and the accommodations that may be required. I also talked about the importance of not singling my child out – this was her greatest fear starting school.
Help your child to map out the bathrooms
in relation to the school schedule.
Connect with your child's friends, siblings, or teachers
to help gather notes or homework.
Look into online lessons or tutors
in case of prolonged absences.
Create a relationship with staff at the school.
This is normally the LAST thing your teen wants, but it will be helpful if your child misses classes or has trouble passing a class because of missed lessons.
Don't be afraid to speak up for what your child needs, and don't assume you will get all the information from your child. I tried to make school as normal as possible for Danielle – so she can spend as much time as possible just being a normal kid. For her, just being around friends kept her spirits up when her pain was hard to manage. Every kid is different, sometimes it is just a matter of finding what works to help them succeed.