Parents often ask me if they should tell the school about their child’s cystic fibrosis because they are concerned that if they do, their child will be treated differently than other students. My answer is always yes. The truth is your child does need to be treated differently than other students in some things. If your child with cystic fibrosis is going to be heading off to school, you’ll want to make sure that his teachers are aware of his needs. So what does your child’s school need to know?
They need to know about anything that your child will need during the school day, or things that may affect his performance. For instance, your child’s teachers should know that:
- Cystic fibrosis is not contagious, but your child is susceptible to lung infections and should be isolated from other students with respiratory symptoms
- Your child has special dietary requirements, and must be allowed unlimited access to snacks and water
- Your child must take enzymes before each meal or snack
- Your child must be allowed time to take medications and do airway clearance treatments during the school day if necessary
- Your child should have unlimited access to the bathroom
- Your child should participate in exercise but must drink water or sports drinks to replace fluids and salt lost through sweat
- Your child will have unpredictable periods of illness requiring him to stay home from school, so he may not be able to comply with attendance rules
- Your child may be in the hospital at some point during the school year and must be given the opportunity to make up work
Putting it in Writing
Telling your child’s teachers about his needs is important, but casual conversation is not enough. You need to have a plan in writing that describes how his needs will be accommodated. If your child attends public school, you’ll want to meet with school representatives to develop an Individualized Education Plan (IEP). If you are not familiar with IEPs,you really need to be. Terri Mauro, the About.com Guide to Special Needs, has an excellent IEP section with lots of information which I would encourage you to explore.
If your child goes to private school, you should meet with the school administration to develop a similar written plan of how your child’s needs will be met.