Starting primary school is a significant milestone in any child’s life, and can be daunting for families with a child with CF. It is well worth taking the time to speak with your child’s teacher about his or her needs. As your child moves through primary school he or she may become more independent, however it is still useful for teachers to understand about CF and how it affects your child.
Disclosing your child’s CF
Some people are happy for the whole school community to know about CF, but some just want the class teacher and the principal/deputy principal to know. There is no right or wrong way to manage this communication. What is important is that you share relevant information with your class teacher and a main contact person such as the school nurse, deputy principal or principal. If you do not wish for your child’s CF to be made public, make sure you tell people of your desire for confidentiality.
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.
Talking with other parents and students in your child’s class
If you wish to disclose your child’s CF, you may wish to speak to the other parents at a Parent Information Night or ask the teacher to send a note home to parents.
As your child gets older, he or she may decide how to handle sharing about CF with others. As a family, it can be good to discuss and consider the pros and cons of what you tell others about CF. One approach is for your child to have a few helpful responses to others in regards to CF e.g. “I take these tablets to help my tummy work”
What your child’s teacher should know
To organise a meeting with your child’s teacher for the following year, contact the school before the end of the previous school year. Teachers are often very busy at the start of the school year and it can be difficult to discuss your child’s needs on the first day of school, so try to arrange 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 may need to update the medical plan annually. A School Health Plan is available from the CFSmart website, as a guide for teachers and parents.
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).
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.
Ask the school what infection control practices they have, for example:
- 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 about sick children coming to school
- Discussing 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 fountains and gardening.
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. This is rare but it does happen.
It is 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 then the risk can be managed, if they not likely to cross paths.