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Kindergarten Transition

Advice and encouragement based on our lived experiences from this exciting and scary time!

Sending our kids off to school is an exciting time, but how do you manage it when CF is added to this new stage of life? We’ve been there and felt that exact same way. We created this resource to share answers and encouragement from our experiences.

 

Kindergarten (or Pre-School) - A Caregiver’s Perspective


Wow! How is your baby old enough to go to school? There are so many things that come with sending your child to school without cystic fibrosis in the mix, so when you add that in, it’s okay to be anxious! Questions might arise as to how the school will handle medications, sanitizing, attendance, and more. We’ve been there and felt that exact same way. The nerves seem amplified when CF is added to a new and exciting stage of life.


What You Need to Know


Just as you had to learn how to build CF into your daily routine after diagnosis, you can help your child’s teacher and school nurse learn this year’s new school-day normal as well. The school will now be your ally, so it is important to work with the teachers and staff and support them as they learn about cystic fibrosis and the steps they’ll need to implement for your child’s health. We hope to answer some of your questions and encourage you as you expand your child’s CF team.


Q & A - Questions You May Have


Q: How do I explain CF to the teachers/staff?

A: Seeing that a student has a health condition can be initially stressful for the school. Most of the time, cystic fibrosis is new to the teachers, and they worry about how they will remember everything along with teaching and monitoring 25 other kindergarteners. When meeting with a teacher, remind them that after a week or so it will become part of their daily routine. Remember how at diagnosis you were overwhelmed? Teachers have that same feeling, so reassuring them that you’re a team and that it does get easier will help you build a good rapport with the school.


Asking for a meeting prior to school to explain and share cystic fibrosis with them will be a critical piece of helping your child be ready for the first day of school. There are lots of resources and pamphlets that you can get from your clinic or on the CFF website to share with them. Some of the resources are included as links below.


Q: How do I explain CF to my child’s classmates?

A: It is totally up to you and your child if you disclose this to classmates.


If you choose to share with the class, there are books you can have the teacher read aloud to the class. These books can help classmates understand CF and why your student will need to take medications, have extra snacks, and be careful to avoid germs. Your student can also share about CF if they are comfortable with it.


Another idea is to provide a letter that can be sent home to other parents explaining what cystic fibrosis is and asking them to be mindful of keeping their own student home if sick. An example of a letter is included as a link below.


Parents may choose not to discuss CF with their kid’s classmates or find that kids’ attention spans at this age are so short that it does not warrant a full explanation of CF. Instead, parents might choose to simply instruct the teacher on how to explain enzymes when questions from classmates arise. When kids ask why your student needs pills, the answer can be as simple as stating that his/her body needs help digesting food.



Q: What types of things should I discuss with my child’s teacher?

A: Many of the topics you may want to discuss are included in the resources and pamphlets that are available to share with your school. (See links below!) You can use these as guides for your discussion. You can also look below at the suggestions for accommodations to include 504 Plans and IEPs. Additionally, you may want to share information specific to your child – how he likes to take his enzymes (with water, applesauce, etc.), if she is embarrassed by coughing or passing gas, or anything else that will help your child’s teacher get to know your child better.


Q: How do I go about getting my child a 504 or IEP Health Plan if they need one? (And how do I know if they even need one?)

A: We highly recommend having either a 504 Plan or an IEP for all students with CF. In general, a 504 Plan puts in place the accommodations needed to ensure your child’s access to the learning environment. An IEP is used to put in place specialized instruction needed by your student. Either one can work for CF. Having a 504 or an IEP is important because it is a legal document that the school and teacher must follow to ensure your student has the accommodations needed to support their education. (See next section for what these accommodations might include.) Even if the school doesn’t think a plan is necessary, push for getting one. You want to have one in place before you run into a situation in which you need it. Additionally, if you move and transfer to another school, that plan goes with your child, and you don’t have to start from scratch.


If your child is attending a private school, the school might not be required to have or follow a 504 or IEP. However, you still will want to meet with the school before the school year starts and go over what CF is and how the school will need to help with your child’s CF.


To set up a 504 or IEP (or an informal plan at a private school), reach out to the school and ask to meet prior to school starting. Many schools have a designated staff member as their 504 Coordinator, etc. If possible, you will want to meet with this person, your child’s teacher, and the school nurse. Often schools want to wait to meet until after the school year has started to set up these plans. However, one of the main parts of these plans involves your child taking enzymes. Since this will need to be happening on the very first day (and every day) of school, it is important to have this in place BEFORE school starts.


Throughout the process, remember that the school is your partner. You’re working together to create a great learning environment for your child!


Q: What topics should be addressed in the 504 or IEP?

A: Example 504 Plans and IEPs can be found on the NE CF Family Advisory Board website (see link below) so you can become familiar with them and consider what you might want to include. There are a wide variety of plans from very detailed to more minimal. Here are some of the most frequent topics included in these plans.

  1. Administering Enzymes and Other Medications – The 504 Plan or IEP should include the process for your child to receive his/her enzymes and any other medications needed while at school. Ideally your child will not have to go to the school nurse each time he/she needs enzymes. First, going to the school nurse could increase their exposure to illnesses by being in contact with other students who are sick. Second, it can take time away from lunch and snacks to have to go to and from the nurse’s office which then reduces the amount of time your child has to get in extra calories. If possible, try to arrange it so that your child’s teacher can administer the enzymes. A letter from the clinic can be helpful to explain the situation.

  2. Infection Control – This can range from discussing cleaning procedures with staff to offering to provide sanitizer for the classroom to how you want to be informed of illnesses within the school or the classroom. Respiratory illnesses would be a specific concern to address and make sure the school will inform you of confirmed cases or a lot of kids with symptoms. For example, our kids may be given Tamiflu if there is a known flu exposure in the classroom, so discussing a plan with the teacher or school nurse to be informed of any illnesses or concerns is helpful.

  3. Extra Bathroom Privileges – Sometimes our children need extra time in the bathroom or extra trips to the bathroom, especially depending on how their digestive system is functioning. Ask for flexibility on bathroom trips, but also ask the teacher to keep you informed. You want to know if your child is having to use the bathroom more than before in case it is a sign that a change in enzyme dose is needed.

  4. Extra Snacks – If your child needs the extra calories, request that your child have extra snacks throughout the day.

  5. Absences & Tardiness – Our kids may miss more school than most other students because of doctor visits, hospitalizations, or frequent illness. In these cases, a 504 or IEP can address ahead of time how the school will work with you to keep your child from falling behind. Additionally, while we try never to make our kids late to school, some parents may choose to note that their kids should not be penalized for tardiness because they need to have treatments done before coming to school.

  6. Other – Plans can include accommodations allowing your child to carry a water bottle with them, requesting that they be moved if seated next to another student who appears to be ill, requesting separate instead of shared supplies, and allowing treatments to be done over lunch (if needed).

In general, talk with your CF Care Team. They often have examples of 504 and IEP plans that other patients have used with their schools.


Q: What if there is another child with CF in the school?

A: One thing that is unique about CF is that those with CF need to “social distance” or stay six feet apart. If there are other students or employees in the school who have CF, talk to the administrators so they can coordinate the schedules and keep the students with CF in different classes. This would also be something to talk about with your clinic.


Pro Tips


  • Communicate kindly with your child’s teacher first. Assume positive intent because this will be new to them as well!

  • Help your child learn to advocate for themselves - remembering to take enzymes, asking for a snack when they are hungry, washing their hands more often, etc. Additionally, self-advocacy can be a goal for an IEP plan if that is the plan you choose.


Links to More Valuable Online Resources!


As always, for CF and life transition advice specific to your child, never hesitate to reach out to your CF Care Team via Children's Connect or call 402-955-5570


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