Cystic Fibrosis in school for early childhood: Parent Resources
When your child with cystic fibrosis (CF) first begins daycare or kindergarten it can be daunting. We have included on this page some useful information and resources to help get you started.
Things to think about when your child with cystic fibrosis starts school or daycare
Disclosing about CF:
- Some people are happy for the whole school community to know about CF, some just want the class teacher and principal/deputy to know.
- There is no right or wrong way to manage the communication. What is important is that key points are provided to the class teacher and a main contact person such as the school nurse, deputy or principal.
- As your child gets older, it is useful for the sports teachers and the specialist teachers such as the art teacher and language teacher to know about CF, so they understand about your child’s specific needs, such as for toilet breaks, extra snacks and medication.
Tips for communicating with other parents and students in your child’s class:
- Speak to the other parents at the Parent Information Night, usually held after the first few weeks of school at start of the year.
- Write a short note or poem or letter for other parents.
- Ask the teacher to send a note home to parents.
- Send an email to parents or teachers explaining about CF.
- As your child gets older, let him/her decide how to handle sharing about CF with others.
- Consider the pros and cons of being private or public.
- Help your child learn about helpful responses to others in regards to CF e.g. “I take these tablets to help my tummy work”
Educating the teacher about cystic fibrosis
- Speak to the contact person towards the end of the school year, to organise a meeting with the following year’s teacher. This is not always possible, depending on the school and staffing.
- It can be difficult to discuss your child’s needs on the first day of school so try to arrange (if possible) a meeting before the students start Term 1. The teachers are usually at school a few days before the first term begins. You may need to do this every year, until your child gets older.
- Ask for an hour long meeting.
- Usually there’s a requirement to fill out a medical care plan where you outline what care and medication your child will need when at school. You usually need to update the medical plan annually.
- A School Health Plan is available, as a guide for teachers and parents: click here
The school/teacher’s responsibilities are to:
- Ensure your child is taking the required medication and food/snacks.
- Ensure quick and easy access to the toilet is provided if needed.
- Provide catch up work if your child is absent.
- Be aware of any changes e.g. symptoms of dehydration, tired, on the toilet more often.
- Promote good hygiene and infection control practices.
Your responsibilities are to:
- Provide the teacher with the medications required by your child to be taken at school.
- Provide the teacher with clear information about medications (how, when, storage, any side effects).
- Inform teacher of any additional medications required during the year.
- Inform the school/teacher if your child has to go to hospital, clinic appointments or other absences.
- Inform the teacher if there are any changes to your child’s health.
Things to Discuss with your child’s teacher:
- Symptoms that might impact while at school e.g. coughing, tired, wind, toilet habits, dehydrated easily, anxiety?
- Enzymes: Where will they be stored e.g. in your child’s lunchbox, with the teacher? What sort of system will you use to communicate with the teacher about how many are needed for snacks and lunch?
The cystic fibrosis diet
- Schools will generally support a high fat CF diet once they understand why it’s required.
- Ask the teacher to make reference to the CF diet if the class is learning about healthy eating (as this can sometimes cause confusion for children with CF on a high calorie diet).
- If you have time: bake items which you can freeze e.g. muffins, mini quiches, meatball, sausage rolls or scones.
- Do a recess/lunch weekly meal planner- get your child/ children involved.
- Use plenty of icepacks in summer to keep lunches cool.
- Pack a couple of water bottles if very hot in summer and freeze them the night before.
- A good thermos or insulated container is great for winter, as you can pack warm hearty meals e.g. meatballs and spaghetti.
Infection control for cystic fibrosis at school
What infection control practices does the school have?:
- Paper towel and liquid soap?
- Access to hand gel?
- Regular and ongoing education for the students about good hand washing practices?
- A school policy on unwell children coming to school?
- Notes home to parents re: sick children coming to school?
- CFSmart has a sample letter that teachers can use to send home to parents about colds, flu etc: click here to view it.
- Some parents are able to say a few words at the parent information night at start of the year, or the teacher may discuss during this night about the importance of keeping unwell children at home.
- Discuss with the teacher if there are any stagnant water areas? Discuss your thoughts on fish ponds, water play, water fountaions and gardening.
What can you do at home?:
- Role play and practice good hand washing practices with your child from an early age. Encourage your child to keep hands away from eyes, ears and nose.
- Teach your child to use anti-bacterial gel at appropriate times while at school e.g. after coughing, toilet, meal times etc.
Exercise and dehydration
- Remind the teacher that your child will need regular water (or cordial/ salty drinks in summer) and may need to take salt tablets or liquid while at school.
- The teacher and teacher assistants need to be aware of the signs of dehydration.
- Does your child get extra tired when running around in the afternoons or during warmer weather?
- Does the sports teacher need to know about CF? (Usually by Pre-primary and Year 1 the students have a sports teacher).
- If possible let the teachers know in advance if it likely your child may be absent from school due to a hospital admission or clinic appointment.
- A hospital school service available at your child’s hospital, can liaise with the teacher to arrange school work.
- It’s a good idea to make the school aware of cross infection issues in case there is another child at the school who has CF or if your child is in the same year group as the other child. (Rare but does happen).
- Not advisable for children with CF to be in the same class as each other, but if one child is in Year 1 and the other in Year 6 – it is ok, if they not likely to cross paths.
Hints and tips from other parents
- Listen out for any new friends your child talks about and consider inviting them round after school for a playdate. This is a good way to meet other parents and help your child bond with new friends.
- Routine is so important and although a drag it can make life easier. Even in school holidays it is good to try and stick to a bit of a routine like physio (maybe not so early) so your child doesn’t get out of the habit by the time school starts again.
- Play ‘schools’ at home with your child before he/she starts kindergarten or pre-primary and practice role playing having lunch from a lunch box with enzymes and talk about what will happen at school during lunch time and recess.
- Talk about washing hands and what sorts of things will happen at school.
- Talk about how your child can explain CF to others.
- Teach your child early on about their CF in basic terms. Be prepared for the tough questions. Be open and honest. Discuss how your child will explain having CF to others if asked any questions while at school.
- Examples of some questions to ask your child (when appropriate).
“What do you know about CF?”
“Is there anything about CF that worries you?” ( Lisa Greene, 2011)
Available resources for parents
- Speak to other parents of children with CF, who have children a little older.
- Your CF state organisation may have a staff member available to assist you in educating the school about CF or can connect you up with another parent for a chat.
- Watch the movie Good Clean Hands to help teach your child about good hand washing practices.