How I Teach My Son Accountability For His CF at School

Along with experiencing the typical emotions every parent has when their kids start school, I've also had to teach my son, Maddox, to take responsibility for his cystic fibrosis. 

| 6 min read
Elaine Ruh, MBA, PHR, SHRM-CP

As our son, Maddox, turned 4, it was a big day in our household because he would start 4-year-old kindergarten a couple of weeks afterward. It meant that it was a new school, new teachers, new schedule, new routines, new friends, new friends' germs, and everything else that goes along with this milestone.

Watching your child head off to school for the first time is a huge transition for a mom, but as a mom of a child with cystic fibrosis, the “mommy anxiety” goes up another notch.

Will he make friends? Will he find his bus? Will the teachers give him the enzymes? Will the other kids look at him differently for taking them? The questions can go on forever.

As soon as we made the decision that Maddox needed to go to school, it seemed like school supplies were sold out and summer was coming to an end. The first day of school was marked on the calendar and so started the many meetings and prep work for his first day.

Upon learning that Maddox has CF, the nurse of the school district scheduled a meeting between us and Maddox's teachers, the school secretary, and the school nurse so we could discuss CF. During the meeting with the school nurse, I quickly found out that Maddox's teachers never had a student with CF, so it was a chance for me to tell his story, explain what CF is, how we found out Maddox has CF, and describe our daily routine.

I talked about the importance of the enzymes and why Maddox needs to take them. Because Maddox takes bigger pills that he is unable to swallow, we went through the applesauce protocol. I was proud to tell them that if they did not do it correctly, Maddox would clearly let them know. We also talked about his cough and they assured me that if they notice he is starting to cough more or that he is struggling, they will let me know. The teachers asked for my cell phone number so that they could text me if they had concerns. They were very receptive to what I had to say and were asking a ton of great questions, which means they were engaged — which is a good thing. I had a chance to tour the classroom ahead of time and looked at different things they had, and it was a mom moment, 'my little guy is going to school here.' The classroom is right across the hall from the bathroom and we discussed why he might need to go more often and that if he needs to go, to let him go.

I left the school feeling comfortable that we had a plan in place and that the teachers and staff were on board. There are 23 other students in his class, one teacher, and one aide. That's a lot of 4-year-olds to keep track of, so Maddox and I had a chat about what he is responsible for when he's at school.

Maddox takes a snack to school every day. Because it has to be consumed in less than 10 minutes, it is truly a snack and not a full meal. Every morning, Maddox and I decide what his snack will be for the day. The amount of enzymes he needs to take depends on what foods we choose as his snack. There is a copy of Maddox's enzyme prescription at school. If his snack requires an amount of enzymes that differs from the prescription, I send a note in his lunch box for his teachers. I then remind him to take his enzymes and tell him how many he needs. Maddox has something different for snack every day, so we always chat about it.

The Wednesday before school started, Maddox and I dropped off his school supplies and we met his teacher. At first, Maddox was not excited for the drop off. We walked around until he found his name on the backpack hook and then we entered the classroom. He had a chance to see all the cool stuff the teacher had set up and to find his chair. His teacher saw him and said with the biggest smile, "Hi Maddox!" He was so excited that she knew his name.

The first day of school came. Maddox was excited and I was a ball of nerves. As we entered the school, all the students in his class lined up and we said goodbye. He didn't look back. I hid in the back, watching him. He just hung out and watched the kids around him. When it was his class's turn, he walked with such confidence. I went back to the car, tears in my eyes. Mom was having a harder time with it than he was.

Maddox and I on his first day of school.

After school that day, I asked Maddox how his snack was and he told me that although the teacher struggled to get the enzymes on the spoon, she eventually did it right. I thought to myself, 'Whew, at least they gave him his enzymes.'

After the second day, we worked on our routine and created a checklist to make sure we have a snack (knowing how many enzymes to take), his backpack, change of clothes, and a hug for mom and dad. We go through the checklist to make sure we have everything for the day before we leave each day.

I hope that by having the routine every morning, he will remember to make sure he has everything he needs every day — especially his enzymes — as he continues to get older.

At the school's fall festival, we were able to get a quick status from Maddox's teacher. She told us that Maddox is adjusting great, helps other students who need it, and is very courteous to everyone. I asked how the enzymes were going and she stated that it's part of their daily routine, just like it's ours. It's a comfort to know that Maddox is being taken care of and his medication administration is right on point. Now to enjoy Saturday morning flag football games and talking about his art projects!

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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Parents & Guardians | School | Working with Your Child's School

Elaine is a mother to her son, Maddox, who was born with cystic fibrosis. After earning her Master of Business Administration (MBA) from Concordia University Wisconsin, she now works in the technology business as a Senior Human Resources Generalist and volunteers on the local Fox Valley Society for Human Resource Management Board of Directors. Elaine recently volunteered as an advocate for the Cystic Fibrosis Foundation and just wrapped up her second year leading a Great Strides team. Elaine lives in Appleton, Wisc., with her husband, Nick, son, Maddox, and their pups, Remy and Lexi. You can follow her on her blog

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