One of the things I love about food allergies is the opportunity they provide for learning and growth.
I can’t say I’ve appreciated every moment. I have been brought to my knees on more than one occasion by the sadness of watching our family struggle.
But then I have moments where I see how far we’ve come. I see how brave Caleb is, how he is starting to advocate for his own safety, how he’s growing into very much his own person, without a sense of limitation or restriction.
I see the kindness, empathy, and selflessness of my non-allergic kids who time and time again get told ‘No, we can’t do that/go there/eat that- it’s not safe for Caleb’, but who still happily advocate for and accommodate their little brother,
I see the profound shift in my own thought patterns, my daily practices. This may not be directly related to food allergies, but it has definitely come about because of a push/need to ‘do this food allergy life better’.
And I see the community of food allergy parents that we are growing- both ‘in real life’ and online, and I’m starting to see that as much as food allergies suck- ‘cos lets face it they do- good can still come of the situation you find yourself in.
Resilience is such a buzz-word these days. Everyone wants it for their kids, but funnily enough, it’s actually pretty difficult to get a clear consensus on what resilience actually is. Different researchers use different definitions, some see it as an individual thing, others as a combination of individual and environment, some define it as an outcome, others a process.
My understanding of what most of us mean by resilience is for our children to be able to adapt well in the face of difficulty- to thrive where it may be expected they’d falter.
That’s actually the tagline of Kid Proof Food come to think of it- ‘Helping families thrive in the face of food allergies’.
What everyone does seem to agree on, is that without challenge, resilience doesn’t develop.
It is why they tell us to stop being helicopter parents (perpetually hovering ready to perform an extraction rescue) or bulldozer parents (clearing the path of all obstacles for our children). We know that unless people ‘push up’ against some form of resistance/challenge, the resilience ‘muscle’ can’t strengthen.
I like the idea of adaptation- it means resilience is something we can learn, rather than something you are either born with or not. It is also, therefore, something that we can develop and strengthen as we travel along.
I also think it’s important to understand that it’s not just the challenge itself that creates resilience- it’s how things play out, what happens as a result of the challenge.
Constantly being challenged, trying and failing doesn’t create resilience- it creates demoralisation, disenfranchisement, disempowerment (that’s a lot of ‘dis’!).
But challenge with some success, some guidance- that’s where the growth happens.
So that is our job as parents.
I think it’s very easy to focus wholly and solely on our own struggles or our ‘allergy child’ when thinking about challenges of food allergy, but it is also important to consciously consider how siblings may be faring.
Family Theory was first developed by a psychiatrist called Murray Bowen. It generally explains events/stressors that impact one family member’s wellbeing influences the psychosocial outcomes of others within the family unit.
Essentially, what happens to one person impacts everyone else with that family unit.
Traditionally it was thought that siblings of children with a chronic illness were vulnerable to poor psychosocial outcomes.
A meta-analysis by Sharpe and Rossiter in 2002 showed that siblings of children with a chronic illness are at a modest risk for negative outcomes- mood issues, learning issues, peer/social issues. The impact was most significant for those children whose sibling had a condition that carried daily management needs (which food allergy does). It called for physicians to be aware of potential impact on siblings and to be aware of the need to consider the family unit as a whole.
Later studies highlight that there are some positives that run alongside the challenges- including increased maturity, empathy and an increase in resilience.
And I have to say that is what I see played out in our daily life.
We all know the challenges of food allergy:
- Social isolation
- The stress of a reaction and the aftermath
- The need for multiple appointments, especially at initial diagnosis with doctors and allied health providers
- Financial strain- medical and allergy-safe food bills can get expensive.
- Parental stress related to their caregiver role/responsibility
- The unpredictable nature of food allergies- especially if our child is outside our direct care.
I’m sure you can think of other things that have impacted your family.
But when I think of Caleb’s siblings, I think of the day to day limitations and impacts:
- Us no longer having peanut butter in the house, despite it being Annabelle and Ethan’s favourite food.
- Difficulties with eating in restaurants, restrictions around how and where we travel as a family.
These things can and do niggle- or outright challenge siblings of children with food allergies.
So once it has come to our consciousness, how might we better support our allergy siblings?
Well, I can tell you what it looks like in our house.
First and foremost we do have firm rules and boundaries around food. We have to. We have very young children, with under-developed frontal lobes- leaving good decisions to chance is not an option!!
So yes, there are certain foods that are not kept in the cupboard or readily accessible.
But where I can, I do soften and utilise that superpower of flexibility to help me connect to Caleb’s big brother and sister.
I want them to understand that I see what they do for Caleb- how they keep him safe, how they chose not to eat certain things in front of him because he might get sad. I want them to know how proud I am of them that they consistently include him, that they quietly swallow little disappointments.
I also want them to know that I understand those disappointments. That they are not selfish, or naughty or wrong for wanting to go to Japan to see their cousin- in the same way, we aren’t ‘wrong’ for thinking that trip might be too hard when Caleb is anaphylactic to sesame, nuts and allergic to soy ( as well as his other allergens).
We need to show them empathy and give them validation for their own experience. Where we can, we create opportunities for them to enjoy foods we might not have at home- we have one-on-one time at cafes for pancakes or eggs. We organise ‘peanut butter playdates’ at a friend’s house for them. The smallest actions can ease resentment, especially if the validation and empathy run alongside.
And then I try and help them see how their existing strengths help them grow and develop resilience.
My daughter is incredible. She is 7 years old. She is so kind, caring, empathetic, sensitive and has an oldest child’s well-developed sense of justice and rule following.
Last year her teacher saw that she was often ‘wounded’ by things others may not find so difficult and so told Annabelle she was going to help her learn resilience. I’m not exactly sure what it entailed, but Annabelle came home that day and told me ‘I hate resilience mum, I’m not doing it’.
To be honest she is actually one of the most resilient kids I know. She is also incredibly sensitive, so to an outsider looking in, it may not look like this quiet, possibly teary child is resilient at all, but the thing is, she keeps getting up, ‘shifting’ her feeling, reframing it for herself, finding a way to make it work. That is resilience.
So for her, we talk about how her kindness, her ability to understand how Caleb might be feeling about something, her creativity (to generate ideas as much as to draw him a picture to distract/cheer him up), her ability to be patient- these are all strengths that help her be resilient.
For Ethan, it might be his ability to really reach outwards to others, to use humour, his confidence and willingness to ask for help- those strengths help him grow more resilient.
Finally, we do give them little bits of ownership- in a safe and age-appropriate way.
Given our pantry has been colour-coded for almost 4 years now (green is safe, red is not), they can both get breakfast or a snack for Caleb if I’m upstairs. But I would never give them responsibility beyond their capabilities- for their sakes as much as Caleb’s.
Once again, I know that we have had it relatively ‘easy’ with our food allergies. We have only had one ambulance ride to Emergency. We have found amazing help from the very beginning. By focusing on the ‘positives’ food allergies bring, I am in no way trying to diminish your experience or suggest it’s not valid to hate the challenges that food allergies have brought into your life.
I have found, for me (and therefore for my family), that being able to change the story about what food allergies mean for us has allowed so much more light in. So I am holding space for the pain, but shining light in and acknowledging those gifts that we have found in amongst the struggle.