Starting school can be a challenging time for any parent and child.
Starting school can be a challenging time for any parent and child. This is no different for children with CF and their parents, there are however some practical consideration that can assist the transition.
CF Smart is a resource that has been developed specifically for children, parents and teachers starting childcare, primary school or high school check out the link and the downloadable resources.
Collaborating with school community
It is important to plan ahead and collaborate with the school.
Ensure there is a person who can be easily contactable e.g. via email.
Who needs to know and who do you want to know about CF in the school community?
Other specialist teachers
Identify a staff member e.g. principal, or deputy or school nurse as the main, ongoing contact person for CF management issues. Build a relationship with this person as best you can. There’s no right or wrong way, some people are private and others are more public.
It’s most important for the teacher, teacher assistant, deputy or principal to know about and understand CF.
Meet with the teacher:
either towards the end of the year before your child starts
or at start of year on a pupil free day
Be prepared to meet with your child’s new teacher every year to provide information about CF, or more frequently if there is a change of teacher during the year.
Think about how you would like the teacher to explain CF to other children in the class if they ask questions e.g. about enzymes or high fat foods etc. Or if you child has any questions while at school.
Most schools will have a student medical plan for students with medical conditions outlining what care and medication the student will need while at school. You may be able to fill in the plan with the teacher/principal while you meet with them, or else when you enrol your child in the school. The plan should be updated by you each year, or sooner if necessary.
You will need to let the school/teacher know about changes in medication during the year and how they should be administered and stored while at school and if there are any side effects. Provide clear factual information to back up what you discuss.
Be realistic about what a teacher can achieve e.g. in terms of infection control: teachers may not have capacity to spray down all surfaces but can certainly encourage good hand washing practices.
Some things parents have done to educate other parents:
Speak to the parents at the start of the year meeting
Write a short note or poem or letter for other parents
Ask teacher to send a note home to parents
Sent an email to parents or teachers
Encourage play dates – a good way to meet other parents and very important for your child to socialise.
If you need back up, ask your CF clinic nurse or doctor to write a letter for your child’s needs – some schools actually require a letter from the doctor for confirmation of the CF diagnosis.
Speak to the teacher about the type of system you will use e.g. sticky labels on food, a communication book, zip lock bags
Ideally you want your child to be able to take their enzymes independently (once they can swallow capsules whole), but with teachers keeping an eye out to make sure they are being taken
The CF Diet
Schools will generally support a high fat CF diet once they understand why it’s required
Many schools will support a high fat snack during “Crunch and Sip®” or high calorie drinks e.g. Pediasure.
You have the right to expect that your child can eat the foods at school which will assist their health
Ask the teacher to make reference to the CF diet if the class will be learning about healthy eating (as this can sometimes cause confusion for children with CF on a high calorie diet)
School snack ideas
sandwiches with high energy filling e.g. cheese, salami
dried fruit eg sultanas or apple
plain biscuits with margarine
veggie sticks with high calorie dip
hard boiled eggs
popcorn with butter and salt
crackers with margarine or Vegemite and cheese
pikelets cooked with cream or buttermilk
Discussing your child’s specific symptoms
Tired at certain times
Does teacher need to be aware if your child embarrassed about taking enzymes?
Flatulence, toilet habits, do they need easy access to the toilet?
What infection control practices does the school have?
Paper towel and liquid soap?
Access to hand gel?
Is educating the students about hand washing ongoing?
School’s policy on unwell children coming to school?
Notes home to parents re: sick children coming to school?
Role play and practice with your child about good hand washing practices.
Teach your child to use anti-bacterial gel at appropriate times while at school such as before eating (when old enough).
Discuss with teacher that your child might have hand gel in his/her desk. (Pre primary-Yr 1)
Exercise and dehydration
Remind teacher that your child will need either water or salty cordial, or salty milk (if in child care) or may need to take salt tablets while at school
Does your child get extra tired when running around, in afternoons?
Will the children have contact with a sports teacher?
If you are able to let teachers know in advance that your child may be absent from school due to a hospital admission or clinic appointment, they can prepare work if appropriate and even communicate with the in-hospital school (if there is one available).
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 child is in the same year group (this is rare but does happen).
Make yourself available to visit the class teacher regularly to find out how things are going
Be open with teachers about CF and your expectations from the start
Routine is so important and although a drag, can make life easier. Even in school holidays it is good to try and stick to a bit of a routine e.g. physio (maybe not so early) so your child doesn’t get out of the habit by the time school starts again
The teacher may like to set up a “Germ Station” to teach children about good hygiene practices
Play “school” at home with your child before he/she starts kindergarten. Have lunch from a lunch box with enzymes, talk about washing hands and what sorts of things will happen at school
Listen for any new friends your child talks about and consider inviting them over after school for a play date. This is a good way to meet other families and help your child bond with new friends.
Having a good support network of close friends really can help your child as they get older, as they will often watch over your child e.g. making sure they are taking their medication properly
To help your child learn to swallow enzymes whole, practice with empty enzyme capsules filled with 100’s and 1000’s
Plan lunches in advance (do a weekly menu) and pack them up the night before
Talk to your child about CF from an early age, discuss what they need to do at school and help them learn to recognise when they are starting to feel unwell
It’s perfectly understandable to have concerns about your child starting school.
You’ve probably been working hard to reassure your child that school will be exciting and fun. But you may not feel so confident yourself.
Don’t ignore these thoughts. Starting school is just as important a change for you as it is for your child. You are not alone in how you feel.
Do something on this big day to distract yourself like going for a coffee with friends who are supportive and good listeners. Remember that you are definitely not alone in feeling worried. Many parents of children with CF have felt this way when their child starts school for the first time.