This has got to be one of the more emotive topics in food allergy.  How our extended families accommodate (or don’t) our child’s food allergies has massive implications for safety, inclusion, and relationships.

As allergy parents, it’s really common to view the world through a food allergy lens.  We are constantly reading, researching, and learning. We are thinking about allergies whether we realise it or not- every time we automatically pack a lunchbox to take to a party, every time we call ahead to a restaurant, every time we check we have the EpiPen before we leave the house- it all reinforces our constant hypervigilance around food and food allergies.

We have seen our children have reactions.  We may have administered EpiPens, we have gone to doctors appointments and oral food challenges and have seen over and over again our ‘why’.

So it can seem incomprehensible if family members don’t jump on board the allergy train.

It can become a major issue if our feelings of hurt, disappointment, and disbelief impact our ability to successfully advocate for our child.

It’s worth having a look at why family may not ‘fall into line’ and what we can do about it- because as we all know, we cannot control anyone else, all we can do is control our own reaction.

 

Food Allergies can seem abstract

Food allergies are tricky- when your child avoids their allergen, they look exactly like their non-allergic sibling or cousin.  Unless you have seen an allergic reaction- whether that be a child with generalised hives and swelling or profound vomiting or anaphylaxis- it can be very difficult to understand how such a small amount of allergen can be life-threatening.

 

Food Allergy rates are much higher now

Food Allergies weren’t nearly as prevalent when grandparents were raising their own families-  prior to the 1980s, food allergies were virtually unheard of in the general population.

 

Australia now has the dubious distinction of being the ‘Allergy Capital of the world’- a study published in 2011 showed 10% of Australian infants had a challenge-proven IgE food allergy.  Admissions to hospital with anaphylaxis have increased three-fold over the last decade.

 

Our children are being brought up in a society of ‘nut-free zones’ and non-food treats- even before a diagnosis of food allergy, we were conscious of allergies on some level, even if it wasn’t personally relevant.  

 

This is all new to most of our parents.  

 

Cultural differences

Different cultures have different rates of food allergies.  They also have different expectations around food.

I was recently in a cab with a taxi driver who had recently emigrated from North India.  He asked me what I did for a job and I started telling him I worked in Food Allergy Education and Support.  

He had never heard of food allergies prior to coming to Australia.  He couldn’t fathom that a nut could make a child sick- in his region, children are exposed to nuts very early as a nutritious, energy dense food.  He’d never come across ‘gluten-free’ products until our Aussie supermarkets, and once again was amazed that the flour his family uses on a daily basis to make roti could be a problem.

The other really important thing to remember is that food is relational.  It is how we show love, care, and how we communicate many family traditions.  Any restrictions around that, even 100% necessary restrictions, can cause problems.  If you have always shown love through food, if you have to stop and think- it can feel unnatural.  

I am in no way suggesting that changing those thought-behaviour loops isn’t necessary and achievable, I’m just highlighting some points of tension.

 

Family dynamics

No matter our age, we all come imprinted with our ‘place’ in the family and all the expectations that go along with that.  You might be the rational older sibling, the youngest sister with ‘drama queen’ tendencies, or perhaps the middle child who has always just gone with the flow.  All of those preconceived ideas impact on how we interact with our family members.

 

Often ‘in-laws’ are implicated as the ‘difficult’ ones.  Mother-in-law/daughter-in-law tensions can have major impacts on how family gatherings go.  

 

I personally am incredibly lucky to have open supportive relationships on both sides of our family, but I have heard so many stories of relationship breakdowns because of a mum’s difficulty getting ‘the in-laws’ to take a child’s food allergy ‘seriously’.

 

Our expectations of our families are so much higher than those we hold for our friends- and those expectations can be so loaded.

 

Communication styles

Have you ever wondered why you can bring infinite patience to a discussion with your child’s teacher or waitstaff in a restaurant when explaining your child’s requirements, but within a minute of talking with a family member you’re frustrated, short, throwing your hands up and ready to take your child and run?

 

It’s all about emotions and backstories.  We are so emotionally invested in our family understanding and supporting us in this, and when it is anything other than 100%, we get hurt, we slip into our pre-defined ‘role’ and inevitably our communication style deteriorates.

 

The louder we shout, the less people hear- our communication style has a massive impact on how our message is received.

 

Lack of knowledge

As I mentioned earlier, allergy parents are up-there with Private Investigators, researchers, PhD candidates- we are thirsty for knowledge (I think it comes back to needing to feel in control), we are immersed.  It might be that we’ve searched online, attended webinars or in-person workshops. We have definitely communicated with immunologists and Allergy Nurse Educators to get the information we need to care for our child.

 

What we then do is promptly forget the hours upon hours it took to accumulate this knowledge and feel like it should almost be ‘common knowledge’.  

 

We need to take on the role of educator- to give those family members time to take on board the information they need to keep our child safe.  They are not going to understand cross-contamination if we don’t explain and demonstrate. They are likely to have never have heard of FPIES- or understand the difference between CMSPI and lactose intolerance.

 

This is a whole new language we have learnt.  We need to translate it, make it accessible and relevant and help them understand the importance.

 

Education is not a one-off 10 minute deal.  It’s ongoing.

 

It all feels too hard.

Sometimes despite presenting relevant, easily accessible information using exceptional communication skills, people just won’t get it.  

 

They may not want to hear it, they may feel it isn’t important or relevant, they may feel like you’re over-reacting, that you’re trying to control them unnecessarily, or they simply may not grasp how important it is to you.

 

And sometimes we just have to accept that.  People have limitations, and as hard as it can feel, we can’t change them.  

 

We can only control how we respond.  

 

So sometimes it will mean acknowledging that it hurts, that it impacts on your relationship with that person.  Feeling let down by family is painful.

But when we operate from a place of our primary job is to keep our child safe, it helps guide our decisions.  It may mean limiting the responsibility that person is given.  It may mean limiting access if safety is a big concern.  Know you aren’t the only one dealing with this.

So what can we do?

As hard as it might feel, the first thing we need to come to terms with is it is our job to keep our child safe until they are old enough to do it ourselves.  Our job. Not our families’.

 

Yes it would be lovely to have unconditional support.  To have a sister who took on cooking allergy-free so your child could stay overnight for a sleep-over.  

 

It would be great if you could leave the snack shopping to your mum, with all that label reading handed over to someone else.  

 

But the thing is, this is a full-time job.  

 

Label reading isn’t easy.  Learning about cross contamination, safe storage, managing reactions, giving the epipen– it’s daunting.  And usually, our family members already have their own lives, their own stresses and aren’t necessarily up to taking anything of that magnitude on.

 

BUT

 

Our children deserve to be included. They deserve to be safe.  Their food allergy should not change their relationships with grandparents, cousins, aunts and uncles.

 

So how do we manage this conundrum?

 

It’s all about advocacy- and while it may feel like this is yet another ‘thing’ to learn, it is ultimately what will allow our kids to live safe, happy and connected lives.

 

Put simply, advocacy is speaking up on behalf of another.  It is in many ways uncompromising- you are speaking up for your child’s right to safety and their right to a relationship with their extended family or friend network.  

Food allergy doesn’t allow compromise in many respects- another thing that has the potential to rub people up the wrong way if needs aren’t communicated carefully.

 

I like to think about two questions:

 

What are my child’s needs?

What am I asking this other person to do?

 

It helps me work out where to start and stop with all the information- a catch up with the cousins might just mean a chat about not bringing along peanut butter sandwiches and meeting at the park instead of a cafe.  

Leaving my child with a grandparent will mean I need to make sure they know how to feed him safely, how to spot a reaction and how and when to use the EpiPen, or call for help in the case of non-IgE allergies.

 

And of course, in any setting, safety is the number one priority.

 

So that means educating your family and friends about what allergy your child has, what a reaction looks like for them- both in the acute setting, and the hours afterward.   

 

A grandparent might give a child with FPIES a small amount of chicken or rice, and think they are ‘fine’ because they didn’t react immediately.  What they don’t see is that same child vomiting to the point of dehydration and shock 2 or 3 hours later.

 

You need to show them how to label-read if you are going to let your child eat food prepared by someone other than you.  You need to ask them to keep those labels so you can check until you’re comfortable you no longer need to.

 

You need to show them what cross contamination looks like and how to avoid it.

 

You need to decide if food prep is actually something they are capable of taking on.

 

Anyone looking after your child in your absence needs to understand what an action plan is and how to administer EpiPens and how to get help if they need it.

 

Don’t assume people will remember your child’s allergies, especially if there are multiple allergens.   Show them your action plan, write it down somewhere else as well if you think that will help- I’ll sometimes text it to my SIL before a catch-up, especially if it’s a share-plate gathering.

 

If we are organising family gatherings- birthdays, Christmas or Easter, I will always offer to host.  It gives me ultimate control over the menu. If we aren’t hosting, I will coordinate with the host to make sure there are safe food for Caleb- that might mean bringing the sausage rolls or bringing a packet of his safe pasta to be topped with a bolognese sauce at the party- we always make sure that there is something on the table for him that means he doesn’t have to eat out of lunchbox.

 

Your communication style has a big impact on how information is received.  Having conversations when you’re hurt or upset is not a great idea. Aim for cool, calm, collected.  Write things down, practice if you think it will help.

 

Also present a united front if possible- if your MIL is sceptical, get your husband to lead the conversation.  

 

I’ve learnt to use simple phrases

Safe and unsafe’

I can show you what I do/how I manage xyz if that will help’ (eg draining GF pasta before wheat pasta)

‘Can I leave some safe food here?  Where shall I put it so it doesn’t get mixed up?’

Practice those phrases.  

Teach your child to ask ‘Is this safe, can I eat it?’

We teach Caleb’s cousins that we share toys, not food.  That people need to wash their hands after eating. That it is ok to sit alongside Caleb while we are eating, but please don’t touch him, and let’s all try to be ‘tidy’ eaters.  

And maybe one of the most important things to ask family members:  Do you think that will work, or do you think we need to come up with something else?’

Advocacy isn’t just about educating and demanding something- it’s about listening and reflecting and trying hard to make things work.

I wish I had a magic wand.  I wish I could make everyone ‘behave’ and take the pain and stress out of family interactions around food allergy.  But humans are nothing if not predictable, and when stressors exist, conflict will often arise.  It can be really hard (close to impossible) to tame our inner Mamma-Bear if we feel people aren’t doing the right thing by our child.

What I do know though is that holding onto that resentment and wishing for someone else to change is exhausting and it ultimately doesn’t help us.  I’m not asking you to say they’re right, I’m just suggesting maybe you accept they are ‘them’ and remove those expectations that just keep leading to disappointment.

Know you aren’t alone, lean into your supports- your partner, your best mate who DOES get it, your online support crew.  We do get it, wholeheartedly and we love you for how hard you try and how much you do.  xx