How I Manage My Daughter’s CF During the School Year

Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.

| 7 min read
Jamie Roney
Jamie's husband, Ross, and their daughter, Desi, standing in front of the school bus

Preparing for back-to-school season can be an Olympic sport in the cystic fibrosis community. We plan, order, fill out, email, inquire, research, and advocate.

My daughter, Desi, is 8 years old and is entering second grade — with gusto. She also lives with CF. 

In the last couple of years, we have — all — learned a lot. I'd say I have had the largest growth curve, personally. How do I best prepare Desi, her teacher, and the school to support our cystic fibrosis goals, in addition to Desi’s educational goals, this school year?

Last year, Desi moved to a new school, and I've had a couple opportunities to “train for the Back-to-School Olympics.”

Here are a couple items I found useful before school starts and a handful of things we do every day to keep Desi’s routine predictable, empower her independence, and work to keep her healthy.

Before the School Year Begins

Talk to your care team. 

They have educational information you can give to your child’s teacher, counselor, or nurse to explain cystic fibrosis and how it fits into the school setting. For a while, when I explained cystic fibrosis to someone new, I would easily get emotional because it would remind me of the reality that Desi faces. Having the information helped bridge the gap of knowledge without me having to be the first to “introduce CF” to school staff.

We told the CF clinic staff what school Desi was going to. They keep track of where patients are attending school so that if there is an overlap of families, they can suggest coordination — without sharing the other children’s names. Ask clinic staff to complete the medication paperwork your school requires. Do this as early as possible so you won’t be scrambling the week before school starts (see below).

Ask for a 504 plan and meeting. 

Consider inviting the school nurse, counselor, principal, and teacher to the meeting. Items to consider including in a 504 plan:

  • Have a water bottle readily accessible
  • Allow for extra bathroom breaks
  • Permit parents or caregivers to attend field trips

Schedule a meeting with your school nurse.

Ensure that the nurse(s) received CF information from the CF clinic. 

Be familiar with the medication policy and confidently ask questions.

This is a topic I am very passionate about so there is more of a story here — stay with me. When Desi was in kindergarten, the school system policy stated that no student was allowed to have medication on their person. For my husband, Ross, and me, our priority was that Desi had the freedom to carry her own enzymes and dose as needed. This may not be everyone's priority, I get it, but we had intentionally worked with her for years to be independent in dosing and swallowing whole pills.

I reached out to the nurse first to start. In our conversation, I learned two key, and different meaning terms: "self carry" and "self administer." Knowing these terms and meanings helped me make an educated case down the road. I told the nurse our priority and asked, "What must happen to allow Desi to 'self carry' and 'self administer' her enzymes at school?"

We met before school started. Desi talked to the nurse and explained what her enzymes were for, when she took them, and the dose. What really made her case strong was bringing a snack and showing the nurse how Desi could open the bottle, choose the correct dose, and swallow the enzymes. I want to point out that this kept the conversation very light-hearted; Desi didn't feel pressure to "perform."

At the end of the meeting, the nurse told us Desi could “self carry” and “self administer!” A BIG WIN! 

The lesson I learned is that the printed policy is not necessarily the end-all-be-all. Ask questions and advocate, advocate, advocate!

Keep extra enzymes in the nurse’s office.

Choose an unopened manufacturer bottle that expires as FAR out as possible so that you don't have to be concerned with out-of-date enzymes.

Meet with the teacher.

Consider scheduling this one-on-one after any 504 accommodation meeting you have planned, so you can answer any questions the teacher may have.

We explained that our preference is to have Desi wash her hands (with soap and water) before lunch, and when coming in from recess or PE. Hand sanitizer is OK, but we think soap is better. We asked that if or when some bug or illness starts circulating in the class or school, that the school let us know. If we felt it necessary, we would keep Desi out of school, but that has yet to happen.

We give the teacher Desi's daily schedule, including medications, chest physiotherapy length, and bedtime. I think this is especially important to give the teacher insight into what Desi does every morning prior to school. Desi wakes up at 5:40 a.m. for school — that is always a memorable surprise to her teachers. It lets them know that her morning starts early so she may be more tired from time to time, particularly at the beginning when school starts or when returning from holidays.

Educate others.

Some folks choose to send a letter to all parents alerting them that their child has cystic fibrosis. We chose not to. As a way to educate other parents, I was involved at the school when and where I could. This gave me the opportunity to chat informally with other parents and fill them in on CF. I found this ideal because it seemed less “scary” when I talked with them in person about it. 

Guard against germs at home after school.

  • Shoeless household: Every day when returning home Desi removes her shoes at the door. We ALL leave our “outside shoes” at the door. (Think about what you stand in when pumping gas, bird droppings in the street, or chemicals from lawn care. Woowee!) This is a simple way to keep germs and bacteria at bay.
  • Change clothes: Once home Desi changes out of her school clothes. This provides another barrier to school germs. Truthfully, we do this for all outings — playground, birthday parties, or sports activities. 
  • Wash hands: After clothes are changed Desi washes her hands and moves on to whatever fun activity she wants.
  • Backpack and lunchbox: Desi hangs her backpack up as soon as she returns home.

These intentional steps have made a measurable difference in arming and empowering Desi from the start! If you have any questions about something I mentioned, I’m happy to help! Reach out to me on Instagram.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Jamie lives in Atlanta with her husband, Ross, Great Dane, Coley, and daughter, Desi. She completed her undergraduate degree in human development and family studies with a focus in child life and preschool development at Auburn University, and received a master's degree in early childhood education (specifically Montessori education) at Belmont University. She enjoys spending time in the mountains of North Carolina, appreciates the art of handwritten letters, and is currently working to implement the “Konmari method of tidying” at home. When not at home, Jamie can be found taking an exercise class at Pure Barre, tailgating and cheering on the Auburn University football team, or spending time with local moms of children with cystic fibrosis sharing ideas.

To follow more of Jamie and Desi's story, you can find her on Instagram @DrivingMissDesi or visit her online store.

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