It is important that the people responsible for your child in school—the principal, school nurse and teachers—be well informed about CF. Good communication with educators may prevent potential problems and unnecessary stress. Request a meeting before school starts in the fall to ensure that everyone is on the same page. CF Foundation handouts like Cystic Fibrosis in the Classroom and A Teacher’s Guide to CF are good resources to distribute at your child’s school.
I’m worried that my child may be treated differently if the school knows he has CF.
This is a concern parents of newly diagnosed children often express. However, this is not a common complaint of parents of CF kids. For the most part, children with CF attend school just like every other child. Students with CF are entitled to modifications in school as any other child with a chronic illness would be.
Can my child carry his enzymes with him at school?
It depends. Each state has its own rules about medications in public schools. If your child goes to a private school, there’s a good chance school administrators make decisions on a case-by-case basis. In public schools, enzymes are considered medications and need to be kept in the nurse’s office. However, if your child has a 504 plan or a medical IEP*, you can request that your child be able to carry his own enzymes as a modification. The 504 plan and medical IEP fall under federal law and supersede state laws.
* IEP stands for Individualized Education Plan
My child doesn’t have enough time to eat lunch.
Request that your child be permitted to leave a couple minutes early from his last period before lunch so he can pick up his enzymes from the nurse’s office and still have enough time to eat. This request can also be made for children on a 504 plan or medical IEP.
What do I do if another student provides misinformation about CF to my child?
Use this as an opportunity to educate the class about CF. You as a parent can do the presentation yourself, or with your child. Perhaps your child would rather do it alone. But you may not want your child to be present because children can ask questions that may be harsh for your child to hear.
My CF child is older now and entering college. What should he be aware of?
Just like elementary and high school students, college students with CF are also entitled to certain rights. If they have a 504 plan and are attending a public college or university, then the 504 plan still applies. All students with CF should identify themselves with the disabilities office on campus. While your 504 plan entitles you to certain rights, the professor usually has the last word. This is when the disabilities office can be of great assistance. Children need not attend a college close to home. If they go to school in another city or state they should contact the local CF Center and schedule an appointment early in their freshman year so the care team can aid with any medical issues that may arise.
Read more information on, Day-to-Day, School and CF,