How to prepare a child with multiple severe life threatening allergies for school successfully!
With just a couple of weeks to go before school starts, Foods Matter asked us to write about our experience of getting Callum ready for school.There has been a lot of work behind the scenes to ensure not only Callum, but also the school are ready for the reality of having a child attending school with multiple severe allergies.
Planning for School – What it means when dealing with allergies
Allergies are life changing, whatever time in your life they make their presence known. It’s a challenge that takes some time to adapt to. Callum has had multiple severe life threatening allergies since a very young age (8 weeks old to be precise). This has meant that dealing with allergic reactions, and eating a very restricted diet is all he has ever known.
We (and more importantly, Callum) have had time to find our new ‘normal’ and adapt to it with success, but what happens when you reach a new stage in life, and the goal posts change?
Callum is due to start school in just 2 weeks, and whilst this is an exciting new chapter, it’s not without significant challenges for him, and for us as his parents.
The most important thing to remember, is that empowerment is crucial. Learning how to cope with and also successfully live with allergies is the fundamental lesson to learn.
Empowerment is crucial!
From Callum’s perspective, being aware of his triggers is the key to keeping him safe by:
- Knowing what makes him ill
- Knowing all of his medicines
- Knowing what each medicine does, particularly what to do with an epi-pen and when to use it
But that’s only half the story.
To keep him truly safe, the new school and particularly new classmates needed to be made aware of Callum’s situation and the consequences of any reactions.
How to prepare a school for a child with multiple severe allergies
A calm and sensible approach to educating the school was the solution, which included:
- Meetings with SENCO so they could get to know Callum and understand the situation from both his perspective and ours
- A full description of Callum’s allergies, and the resulting reactions if exposed to them
- What really happens during a reaction, and what to be aware of if it becomes an anaphylactic response
- Ensuring staff members are epi-pen trained, and that the training is kept up to date
- Finding out current allergy management policies and adapting/tweaking if necessary
It can seem quite a daunting prospect when dealing with this situation, not least because you are having to put your complete trust into someone else.
Whilst your instinct as a parent is to try to remove all allergens, the reality is, this simply isn’t practical. It might keep Callum safer during primary school, but he would still need to learn to cope with them around him outside of school. And what would happen when he reaches secondary school? Requesting 600 pupils not to bring certain things into school is one thing, but more than 1000? And what about university? Or while out and about on a day out in London for example? The tube alone will house many of Callum’s allergens. It’s far better to educate Callum about how to deal with his allergies!
Removing ALL allergens simply isn't practical!
We know and can read the signs of a reaction better than anyone, including:
- The anger/ change in mood when feeling rubbish because he doesn’t know how to handle the emotional aspect that comes with reactions
- Knowing he needs to lie down and sleep it off for half an hour to give him the strength he needs to carry on with the rest of the day
- Knowing he likes to be left to do things himself as he starts to come out the other side, almost like he’s proving to himself that he ‘can’ still do things
- Running with a high temperature as his body attempts to regulate itself during and after a reaction
It was crucial that we communicated this to the new school, so that they can work with Callum, and understand him better.
Aside from this, the biggest concern to us still, even with the education of the new teachers, is cross contamination. We as adults know to be mindful of what we touch, and to wash our hands as soon as we’ve eaten anything that could put Callum at risk. But what of his new peers?
Educating classmates - the Callum way!
We’ve combated this, by dealing with it head on. On the first day of term, all pupils in reception class receive a pack for their parents as standard. As part of this pack, we’ve created a letter from Callum, worded very carefully to get the parents on side:
Dear Mums, Dads and Carers,
Hello my name is Callum! I am 4 years old and I have just started in reception class with your son/daughter. I like playing in the sand pit and with my friends (your son/daughter). I’m just a normal kid really, but my mummy worries about when I’m at school because she can’t be with me and keep me safe all the time, so this is why we are asking for your help!
It’s because I have quite a few severe allergies that make me very poorly! This means that eating even a tiny amount of the things I’m allergic to takes a long time for me to heal, and often results in me ending up in hospital. It also makes me feel poorly and gives me tummy ache. This can make me very grumpy or upset.
When I was a little baby, I had a taste of dairy and a fair few other things (nuts, wheat, gluten, egg, strawberry, tomato, peppers and citrus to name a few) and my body decided each time to cover me in hives. My mouth would tingle like I had pins and needles in my tongue, my cry would go all funny because my throat was swelling up and closing, my lips became very big and then I was sick. Very sick! The doctors told my mum this was anaphylaxis and this will happen every time I eat anything I’m allergic to. I don’t like feeling sick like this, as it makes me feel a quite scared.
We have spoken to the headteacher, and he’s going to help us to stop my mummy from worrying and we’re asking for your help too!
Please help keep me safe by:
- Ensuring I only eat my own food, no touching of my food or swapping!
- Clearing up the crumbs from the food table and floor so I don't get them on my hands when playing!
- Encouraging everyone to wash their hands every time after eating so they don't get juice/crumbs on anything in the classroom – strawberry juice and tomato juice in particular make me really poorly!
My mummy told me she’s always worrying about me when she’s at work, she’ll check her phone all day in case I’ve got sick at school. We hope this letter helps us out a bit.
I carry 2 epi pens with me all the time, but I hope I don’t ever have to use them. They hurt a bit, but they make me better in an emergency. I’m not allowed any dairy, nuts, tree nuts, peanuts, seeds, grapes, strawberry, tomato, egg, wheat, gluten, peppers, kiwi, citrus and plums.
We have to check everything I eat, and if it says ‘may contain’ my mum says they have to be checked as they may not be safe for me. If you need any more help on keeping me safe so I can be in the classroom with your children, then please speak to my mummy who will gladly answer any questions you may have.
Thank you for reading my letter and please tell all my friends about why I’m asking for my classroom to be safe, that way if I’m ever poorly at school, everyone will know why and will be able to tell my teachers quickly because the sooner I have my medicines, the quicker I’ll get better and be able to come back to school and play with my friends. Mummy says thank you too, she knows I’ll be safe now with all your help!
Love Callum xx
Communication is key!
If we were to dictate to the parents what they can and can’t do, it would get their backs up, and it wouldn’t be the right thing to do. Instead, we’ve explained about Callum’s situation, from his perspective, and tried to debunk the myths that surround allergies. We don’t expect anyone to change what they do, nor should they. It’s about educating them about Callum, and empowering his peers to look out for him, to know when to get help should he need it and to understand about cross contamination and good hand hygiene to keep him as safe as possible. Young children instinctively protect each other, and it’s this that we’re banking on, the want and need to keep one of their own safe.
We have to put the trust in the school to listen to the seriousness of his situation, to actually act on the training and information we’ve provided, and to pray that Callum remains acutely aware of his surroundings and shouts quickly if he doesn’t ‘feel right’.
From our experience so far, we believe we’ve found the best possible school for him. They’ve been receptive to everything we’ve discussed thus far, and they are protective of him, and want him to stay as safe as possible.
Of course there’s still the questions going through our minds:
What if it’s not enough?
What if everything we’ve done, and everything we’ve set up, and everything we’ve taught still isn’t enough to keep him safe!?
For now, it’s time to trust!
Trust that we’ve educated Callum enough to understand his situation, and be an advocate for himself.
Trust that he can recognise his allergens and stay away from them.
Trust that his new school will remember everything we’ve taught them and act accordingly if a reaction does occur.
Trust that his new peers want to help protect him and keep him safe.
And finally, have faith that we know we’ve done everything we possibly can to keep our boy safe!
We'd love to hear how you've got your little ones ready! What have you done with them to prepare them? How have the new school been in terms of getting things in place? What about school dinners?
Any advice is greatfully received as we enter one of the most difficult chapters of Callum's journey to date!