If you’re a parent of a child with cystic fibrosis, you understand the challenges of living with CF. Many children with CF attend school and are successful students, but there are times it will be tough. Here are 10 tips to help along the way.
These tips focus on attending elementary school with CF, but many of them will apply to older students.
Plan with your doctor and care team.
1. The people who help care for your child will build a plan with you for introducing your child to school. Together, you will best know the requirements your child needs to stay healthy and get the most out of their education experience. Write down your questions and concerns before the conversation with your doctor so you can be sure to cover everything.
Get your school’s plan in writing.
2. Contact your school district before enrollment begins, preferably the semester before your child will attend. The more time you give the school to prepare, the better they can accommodate your child. You will want to talk to them about creating an Individual Education Plan (IEP), a document that describes the allowances your child will need to go to school. If your school district doesn’t believe your child qualifies for an IEP, you can suggest creating a 504 plan. If your school will not work with you or you have other problems, you can contact your state education agency. Be patient with process, but be forceful if you need to.
Educate your educators.
3. You will want to make appointments to speak with your child’s principal, teachers, and school nurse. It is possible that they haven’t heard of CF, and could use your help to understand the importance of a child with CF coughing, eating, and taking medication. Most school staff will want to help your child succeed, so by partnering together you can work toward that goal. You or your doctor might be able to speak with your child’s class about CF. Make sure school staff knows how to identify problems, and get a copy of the school’s medical emergency procedure.
Help your child understand expectations.
4. Speak with your child about what you expect of them at school. Make sure they know to speak to an adult if they’re having trouble or need help. Remind them the importance of washing their hands, avoiding germs, and taking their medications. You can also discuss what the child is hoping to get out of going to school—like making new friends, learning, and being involved in school activities. By talking about your child’s responsibilities and opportunities, they will feel involved in making them happen.
Be prepared for absences.
5. This topic should be included on your Individual Education Plan (IEP), because the attendance policy will need adjustment. You need to know what the plan will be for when your child is unable to attend school due to doctor’s appointments or illness. Assignments might be sent home, or a tutor could be provided. Perhaps lessons can be recorded on days your child is sick. Teachers will work with you to keep your child engaged even when they can’t make it into the classroom.
Make bathroom accommodations.
6. This topic should be included on your Individual Education Plan (IEP). Because of the digestive issues associated with CF, your child will need unrestricted permission to use the restroom. It is worth asking if your child can have access to a more private bathroom to avoid embarrassment.
Prepare for food needs.
7. This topic should be included on your Individual Education Plan (IEP). Speak with your doctor or nutritionist about what snacks will keep your child healthy, and make sure the school understands the importance of your child’s nutritional needs. Prepare snacks the night before or on the weekend to stay ahead of the game.
Set up a system for medication.
8. This topic should be included on your Individual Education Plan (IEP). Plan a way for your child to get the medication they need without disrupting their day. Speak with your school about your child carrying their own medication, and explain the purpose and nature of the medicine. For instance, a child with CF will know how to take their own enzyme capsules and should be allowed to do so. School is an excellent place for a child to develop good habits about their medication.
P.E. and sports
9. This topic should be included on your Individual Education Plan (IEP). Physical activity is a great way for a child with CF to stay healthy. Make sure that your child’s P.E. teacher understands the importance of including your child, but also that your child may not be able to participate as long as other students. The same holds true for coaches.
Ask about their day, not just their health.
10. After school, your first instinct might be to ask about your child’s health. But that is only one part of their school experience. First ask what they learned and about their friends. “What did you work on today? What did you do at recess?” If that doesn’t tell you all that you need to know about how they’re doing physically, you can always fill in those blanks. And remember, the more you ask them about their days, the more likely they are to tell you about something important.
Going to school is an important part of growing up, and that’s just as true for children with CF. By working with your child, their doctors, and their teachers, you can set your child up for a rewarding experience.
If you would like more tips for caring for your children with CF, check out our article on getting children to take their medication.
Cystic Fibrosis at School. Children’s Hospital of Illinois. Accessed March 24, 2015.
Sufian B, Pattee S, Hazle L. Day-to-Day: School and CF. Cystic Fibrosis Foundation. 2004. Accessed March 24, 2015.
Fulton J, Casey S, Luder E, Maguiness K, McKenna A, Hazle L. Nutrition: School, Enzymes, and Sports for the Child with Cystic Fibrosis. Cystic Fibrosis Foundation. 2006. Accessed March 24, 2015.
CF at School. Cystic Fibrosis Foundation. August 20, 2014. Accessed March 24, 2015.
Cystic Fibrosis in the Classroom. Teachnology. Accessed March 24, 2015.
Supporting Kids with CF. CF Living. Accessed March 24, 2015.