Talking with school about your child’s food allergy

One of our subscribers shares her story of how she worked with her son’s school over the years, from his first days to his final exams, including the challenges, triumphs and lessons learned.

This is a helpful read for those with school-age children with allergies or school staff who want to improve the care and management of children at risk of anaphylaxis.

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I can’t believe that my son, Harry, is 17 years old and has just started his final year at school. What a journey it has been. There have been the usual highs and lows of school life, but for Harry and me there has also been the stress of managing his food allergy at school.

Harry is at risk of anaphylaxis to egg, dairy, fish, sesame and kiwi fruit. One of his episodes of anaphylaxis happened at school and I am happy to say that the school managed it well and followed his ASCIA Action Plan. He needed more than one dose of adrenaline. This anaphylaxis happened because Harry didn’t read a food label correctly; it was not because the school made a mistake. We have to remember that accidents happen, and it is important to be prepared for them.

For those of you who are starting the journey of school with food allergy, I thought I could offer some tips about how we managed. I have found that some staff are fantastic at understanding and managing allergies, and some are not. I guess this is the same as life in general. One teacher reduced me to tears with her ignorance and lack of concern for Harry’s welfare, but this was many years ago, and I like to think that things have improved since then.

Here are my top tips for dealing with the school:

1. Be proactive and organise a meeting with your child’s classroom teacher at the start of each school year. Complete their Individualised Anaphylaxis Care Plan (which might be called something else in your school) and discuss things like where to keep a treat box (younger years) and where the EpiPen^® is kept. If you are worried about the teacher’s understanding of allergy, set up a meeting with their superior (for example, year coordinator, school nurse or school principal).
2. Remain calm and reasonable. Over the years I have had to remind myself many times that teachers aren’t doctors or nurses, and sometimes the issue is that they really don’t understand the risk. They are not deliberately putting our children at risk. If something about the management of allergy at school upset me, I learnt to take a deep breath, and if possible, wait until the next day when I was calmer before I contacted the school about it.
3. Accept that your child will have to do some things differently to keep them safe. It can’t be helped – if the school is having a pizza day and your child is allergic to milk, your child won’t be able to eat the pizza. This is life with allergies. Make sure the school tells you in advance so you can make a great safe pizza at home and send it with your child on the pizza day.
4. Have realistic expectations. It is not reasonable to expect all students in the school to wash their hands after eating. You can, however, teach your child how to manage their allergies. Teach them to wash their hands before eating and to not share food. In the younger years, you can teach them that they should only eat food from an adult that you have said they are allowed to take food from. In the older years, they need to learn to read food labels and ask about ingredients themselves.
5. Don’t give up. Sometimes I felt like I was moving forward and getting somewhere with the school, only for something to happen that made me feel that the school had learnt nothing about allergy management. Don’t be disheartened. I think all of my polite and reasonable conversations with the school have improved things, not only for Harry, but for all the other students with allergy as well.

Imagine my joy when I received a letter from the person in charge of catering at school last week. She wrote that she had been advised that Harry would be attending a school leaders’ lunch and so she listed her proposed menu, complete with links to the foods she planned to serve. I was so happy! Even better, Harry declared the lunch was delicious.

Don’t give up advocating for your child and reach out to Allergy & Anaphylaxis Australia if you need help and support.