Do you think individuals with cystic fibrosis can thrive in school, even if they miss more than 36 days out of a 180-day school year? The answer is yes, but it requires dedication and teamwork from the child, their family, and the school community. For a young child with CF, it can be hard for them to keep up with their treatments and hospitalizations while in school. Being diagnosed at age 4, I had trouble comprehending what CF was (as all young kids do), but my family always encouraged me not to let this terminal illness hold me back.

I attended public school and was actively involved in dance from age 5 to 18. To be honest, I hid my disease throughout my entire school career because I wanted to be treated like every other typical kid in school. In general, the only people that knew about my CF were those who were necessary, like my teachers and dance instructors. It was hard trying to explain to my peers what CF was, and they never truly understood how exhausting it can be. 

In first grade, I had to get a feeding tube placed. I was not able to attend school for at least four weeks. Even though I was absent from the classroom for so many days, I still had to make up the schoolwork I missed. In second grade, I had a Nissen surgery to treat my acid reflux and a port-a-cath placement. As I was healing, I completed my breathing treatments with minimal effort due to the pain I was in. This allowed excess mucus to build up in my lung and resulted in a longer hospital stay, forcing me to miss school for six weeks that school year.

I can remember returning to school toward the end of the school year, and when I walked in, my classmates just stared at me like I was an extinct animal returning from the dead. When my second-grade teacher taught math, I had no idea what was going on, and so I fell behind. Trying to comprehend the unfamiliar classroom learning standards was extremely overwhelming, and I felt stupid. 

In third grade, I was extremely underweight and had to do continuous feeds throughout the day — even at school. I had a portable feeding pump and a backpack that connected to the Mic-Key button in my stomach. At school, I tried to hide the connecting tube, but it was still visible. My classmates would ask me about that tube under my shirt, and I refused to tell them. When my feeding bag was empty, it would beep. Imagine being in the middle of class while everyone is silently reading a book, and you hear “beep, beep, beep” nonstop. People who are unfamiliar with things like that become curious. After that, my parents and doctors figured out a new feeding tube plan.

Around fourth grade, my parents decided to meet with the principal, guidance counselor, and teachers to create a 504 plan. This 504 plan outlined what strategies were needed for maintaining my health at school and being academically successful. I was also held back at the end of my fourth-grade year, which was embarrassing to me. Although at the moment I struggled to cope with this, I am now thankful that my parents did that.

Middle school was hard, especially when I went into the hospital. Some of my teachers had no idea what CF was, and I can recall this one teacher calling me out in front of all my classmates when I turned in my makeup work. This teacher stated, “I don’t care what disease you have; you got all these questions wrong so you will have to redo them.” I was upset, but it did make me stronger as a person. My parents had a meeting with the school and tried their hardest to improve my school experiences. This goes to show how crucial it is for parents with CF kids to advocate for them throughout school settings.

I pushed through middle school, but when I got to high school, things changed. Going into high school, my mom was adamant that I should stand up for myself and advocate about what CF is like. Around this time, I was featured on a CBS news segment, and I participated in motivational speaking. I was terrified, but it made me realize how much I enjoyed inspiring others. Because of this, I told myself I was going to share my story with my classmates and teachers without assistance from my mom. I was hesitant at first, but I’m thankful I did it because it improved my high school experience and prepared me for college.

How can parents advocate for their kids with CF in school settings? Here’s what my parents and I learned through my past experiences:

1. Talk to the head administrators and teachers at the school about what CF is, including every relevant detail, no matter how scary it may seem to them. Go over in depth your daily CF routine and hospital life. Make sure they know that hospital visits are often unexpected and collaborate with the teacher to find strategies for your kid to still learn the required content without physically being in the class. Let them know that you want your kid to be treated like every other kid as much as possible.
2. If your kid’s teacher is not accommodating or assisting your child, don’t be afraid to share your concerns with administrators who are higher up, as this will help your student in the long run.
3. Set up a 504 plan. This will protect you, as a parent, and your child when they miss school. Be sure to communicate with teachers when your child goes into the hospital. 
4. Consider looking into a homebound teacher.
5. Allow your child to be in control of their health and school as best as they can at their age. Teach them that when they get older, they must advocate for themselves. This way, you can guide them toward becoming independent. Most importantly, do not baby them or hold them back from things just because they have CF.

And here are some ways I would encourage teachers to accommodate their CF students:

1. When a parent tells you that your student has CF, don’t dismiss it. Be respectful and take into consideration what your student has to go through on a daily basis. Do your research and don’t be afraid to ask questions.
2. Keep an eye out for signs your student with CF may be unwell. For example, if they are coughing more than normal, falling asleep in class, or suddenly getting bad grades, reach out to their guardians.
3. Treat them like every other student, especially in front of their peers. When they are hospitalized or not feeling well at school, show them that you are there to help. They are more likely to succeed, open up to you, and become motivated in the classroom when you validate their experiences. 

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