Cure4CF Update 

Navigating the start of school as a CF Parent

Last month I had a great time speaking with our Ambassador Jennifer Kozlowski who shared with me her top tips for navigating Aveline’s start to school this year.

  1. Enrol as early as possible.

Jen acknowledges that every family is different, and every child is different, and she wanted to share what has worked so far for Aveline’s family. As a teacher herself, Jen understood the demands on each school and what they may be managing with their students and families. In many cases, schools may not have had experience in supporting children with CF and their families.  Jen started talking to the school the year prior to Aveline’s start date, which she found helped both the school and the family prepare. By enrolling as early as possible, even in term 2, allows the school 6 months’ notice that you are coming.  If it’s your first child at that school then it can be a good idea to take some time to learn about the School and the extra curricula activities they provide. For example, gardening programs, cooking programs and other specialised activities may need special consideration in how to be navigated for your child.

This will be a learning experience for the school as well as the family.  Navigating any transition with a medical condition adds to the already stressful time and the more time you have for preparation the better.

2. Include your CF Care Team early.

Having your CF team to support you through progression to school is helpful.  Talk to them the year before and let them know your child will be starting school the following year. They can provide resources and ideas on how to manage treatment at school. On the enrolment forms add in the CF team details – the main nurse is often helpful.  In Jen’s case the school was very proactive and contacted Aveline’s CF nurse before school started.  The nurse was able to support the school in how to support Aveline’s medication schedule so that she didn’t have to navigate to go to the office every day for her Creon and salt. This was a game changer for Aveline as she can take her medication herself.

3. Have a meeting with your school in term 3 the year before commencement.

In term 3, the year prior to commencement, set up a meeting with your child’s school. In Jen’s case a telehealth meeting was attended by the CF nurse, three school staff members (including the principal) and Jen.  The group discussed the best way to support Aveline with her medication and health care needs.  By notifying the school early, it allowed the school time to generate a plan and arrange the telehealth meeting.  This happened around August, before the school itself was busy with term 4 activities.

Jen found it helpful to ascertain if there are other CF children or adults at the school as this was something that helped her prepare for Aveline. Jen reminded me that you cannot assume the school will have the detailed knowledge of your child’s condition or the impact of being around other people with CF may have.  Ask to be notified if another person with CF enrols at the school or becomes a member of staff so that you can consider how to manage contact with your child. While it would be unusual, at some larger schools this can occur. It can be disclosed without identifying the person directly. Once you have this knowledge, you can then discuss with your CF care team and consider if anything needs to be adjusted.

Jen explained that despite doing all we can to keep our children well, we need to be realistic with our expectations and understand that there are going to be times when our children will get sick and navigate this as best we can. Help the school to understand, that for your child, getting sick is different and can last longer and be more severe. Just like your CF team gave you the tools to care for your child in the early days, you now can share these tools with your school to support you child the best way they can.

It’s important to remember that each year you may need to work through this process with each new teacher and when staff changes.

4. Cystic Fibrosis Care Plan for School

Jen suggested working with the school to develop the plan that is personalised for your child.  To allow ample time for editing, try and work with the school before the first day. The school presented Jen with an outline of inclusions for an individual health care plan. Within this document, Jen listed clear details of support required for her child. To assist you and your child’s school with forming a health care plan, Jen has willing shared hers.  If you are interested in receiving this, please contact us info@cure4cf.org.

A great example of some of the challenges that can arise included events such as Clean Up Australia day. This was something Jen hadn’t considered and needed to navigate this with the school. Every family will face different school activities that they need to navigate. Jen highlighted that the health care plan is an active document and will need to be updated many times throughout your child’s schooling. Those updates will be more likely to occur in the first year and then smaller refinements as your child grows may be necessary.

5. Food

The most challenging part of preparing for school. l have been organising Aveline’s lunch and recess.  Jen negotiated with Aveline how she wanted to have her medication and lunch.  It was also important to consider salt and hydration options in the summer and look at practical ways you might incorporate salt. You might consider taking an ice block to school pick up on a hot day. Of course, it will be important to keep communication open with the school about the needs and changes to your child’s diet and access to food.

Jen found “Crunch and sip” didn’t need any Creon and that separating Recess and Lunch in different containers with Creon portioned out accordingly. There may be other ways to navigate this, but this has worked so far.  Jen uses little containers with Aveline’s name printed on them with her Creon capsules.  Aveline has been on capsules for two years.  Transitioning to capsules before school has been helpful.

Jen provided a bottle of Creon capsules in the original packaging to the teacher in the case of kids’ birthdays. If there is cake, she will need extra Creon and the teacher can support Aveline with this.

6. Navigating the first day

Jen ensured she had extra time on the first day of school to do drop off and pick up to be present at the school to answer any questions from the staff.  She found this was easier for the teachers to have a quick chat and ask questions in person.  This has been something Jen has tried to continue every week in term 1, as emails and calls can take longer to be exchanged between the parents and school.

How is term 1 going for you Jen?

Jen shared that Aveline has had a great start to kindergarten.  The hot summer has been a challenge some days and when she comes home, she has needed more rest. Overall, she has taken all the changes in her stride.  Jen has found the changes have been hard and has found packing lunches the night before has been helpful so she can have extra time to check everything is packed to save the morning rush navigating Creon doses.

In the health plan Jen asked that Aveline does not use the school bubblers, but Jen soon learned that Aveline has a keen interest in trying everything at school including the bubblers!  As a teacher Jen has lots of experience with kids drink bottles and wanted to ensure Aveline has her own clean drink bottle each day with a covered mouthpiece, but she also knows that kids want to be like each other and the design of drink bottle that you think is best may not necessarily be what they want!

The other tip that Jen has found helpful has been having plenty of clean uniforms.  Jen explained that this has been helpful for managing washing while are you also managing parenting and working.  A great way to help with costs of the uniforms has been to look at the school’s second-hand shop.

The school has also provided Aveline with her own pencil pot and scissors and glue etc which helps with controlling exposure to bacteria and viruses.

Jen has shared the following links that she has found helpful.