An Open (Heartfelt) Letter From One Food Allergy Parent to Another
Dear New Allergy Parent,
Has your child just been diagnosed with a peanut allergy? Or another severe allergy to dairy, eggs, soy, nuts or another food?
I bet you’re feeling overwhelmed right now, and probably a little scared too. Or a lot.
Do you feel desperate for resources on what to do as a food allergy parent? Most likely, you’ve already Googled “What do I do if my child has a food allergy?”.
Because, anaphylaxis takes anxiety to a whole new level.
It’s a terrifying prospect for an adult, let alone being faced with the threat of it happening to your child!
I know exactly how you’re feeling because I have felt the full weight of that
I distinctly remember my son’s first diagnosis.
Afterwards, I sat in the carpark as the full weight of what being allergic to dairy and eggs meant for my gorgeous 8 month old. And then, 6 months later, the diagnosis became heavier when nuts and sesame joined our list.
It all hit me at once:
- How can I EVER leave him?
- Can he go to childcare?
- How will parties work?
- Shared lunches?
- Will flying and holidays be possible?
- School camps?
- How am I going to give up all dairy and eggs while I breastfeed (selfish I know).
But as I sit here preparing for him to go on his Year 5 school camp, what I now know is that allergy parents have the ability to transform into super-organised, advocating superheroes for the sake of their children.
And believe me when I say that you will also be amazed at the resilience, maturity, confidence and understanding your child quickly develops.
This school camp has made me realise how far our family has come since those initial, distressing diagnoses. (Yes he still has all of his allergies. He hasn’t been one who has outgrown them.)
So, what I also want you to know is that you will come a long way in a short time as well.
Yes, at each stage of life (be it childcare, school, camps, parties, travel or leaving home) the feelings of overwhelm may come back, but by then you will know what works for your child and family, and you will turn on your superpowers and make it work.
Here are my 11 Top Insights on Coping as a Food Allergy Parent
I was thinking about what pearls of wisdom I can share with you because there are so many! But instead, I decided to create ‘A Survival Guide for Allergy Parents’.
Here is a list of things that you will get to know and experience, as a parent of a child with food allergies.
My hope is that knowing in advance can help you realise what stage you’re in and the array of emotions you are experiencing is completely normal.
And, that you are part of an extended and super-supportive family of allergy parents. Find your tribe – there are some amazing childhood food allergy support groups on Facebook.
A Survival Guide for Allergy Parents
1. Childcare & Early School years ARE stressful
I used to describe sending my son to childcare or school as the feeling of sending him off to cross a major 4-lane highway by himself…
Yes, he’ll probably be ok, but there is a chance that something will happen.
Educators are AMAZING, but it’s still hard to trust fully. You will often have some background anxiety when your child is there, especially if your phone rings.
When choosing Childcare and a School, you’ll have such a different focus from other parents. You will spend A LOT of time talking to them about:
How to keep your child safe. Will they recognise the early signs of a reaction? Will they follow the Action Plan? Are they confident using an EpiPen?
The food your child is exposed to. What meals are being served? What will other kids have or bring? Will other kids be educated about not sharing? What risk of cross contamination is there? How will they reduce these risks?
2. You choose your handbag if it fits an EpiPen pouch!
Your partner does too – yes husbands will rock a man bag!
They might get teased by their mates, but they quickly quieten down (and be respectful and compassionate) once they know it’s for an EpiPen that can save your child’s life.
And you never leave the house without it! Your mantra on departure will quickly become:
- Wallet – check
- Keys – check
- Phone – check
- EpiPen – check, check and triple checked!
3. You are ALWAYS thinking about food
You take safe snacks everywhere, more than can possibly be eaten. You can even develop a slight phobia about getting stuck somewhere with no food.
And to begin with, it feels like you live in the kitchen – preparing, cooking, baking, packing for the next outing.
If you get invited to a family dinner, you immediately have to ask: What’s for dinner? What else will be on the table? What can I bring for my child to eat?
You go on a roadtrip and thoroughly research the food options en route, so you know exactly where is safe on the way to stop for food.
Although, it’s ok, because you have probably packed 2 weeks’ worth of food to get you through the 4 hours – ha ha!
4. You are the Parent that stays at playdates and parties
Other parents leave, but you don’t. You stay and offer to help.
Often, the other parent may ask you to stay too. It’s also hard to hand over the EpiPen until you know the other parents well.
Some parents may wonder why, but I’ve found that the majority will understand. It doesn’t make it any less awkward though as you worry that the host feels they have to entertain you as well. If you ‘leave’, it may only be to sit in the car outside.
5. You take safe food to playdates and parties (see #3)
You might even feel awkward about it at the first few playdates or birthday parties, in particular if the wonderful host has asked what they can prepare for your child.
But, you might also find that your child doesn’t feel safe eating the host’s food because of cross contamination or other reasons.
And, while it may initially feel a bit impolite, you know it is NOT ok to force your child to eat food they don’t feel safe with because it goes against everything that you are teaching them.
At the end of the day, you just want your child invited to friend’s houses and so all you can do is to make it easy and stress-free for the host.
6. Shopping takes FOREVER, especially in the early days
You have to always read labels in detail, even on products you know, because what if the recipe has changed?
You can only do online shopping if ingredients are listed, and NO WAY can you get items substituted.
7. Restaurants can be stressful
You ring in advance and check that their Chefs can cater for your child. Then, you mention it again when you are seated. When you do, you hope the server doesn’t look stressed or worried – that might worry your child, especially if they say those worrying words:
“We can’t guarantee…”.
You may have one child that can eat anything on the menu and then your gorgeous allergy child can have one choice if they are lucky, and no dessert.
If you find a restaurant with several choices, there is a family celebration and you go back often!
When the food arrives, you double-check everything and yes, you occasionally have to send things back (people are only human).
But…”No! It’s not ok to take the cheese out, we need a whole new burger please, he isn’t intolerant, he is ANAPHYLACTIC!”
8. Special school lunches are nerve-wracking
Other parents love a shared lunch, it’s fun for the children. You receive the note with dread.
The first one is your worst nightmare, because you want your child to feel included, but safe.
You talk to the teacher at length:
- Can he choose first and ONLY the dish that you bring?
- Otherwise there is a risk of cross contamination.
- Or can we create a ‘Red Table – Don’t Eat’, and a ‘Green Table – Ok to Eat’?
You end up having to prepare something for the table (so they are included) and extra treat food for the lunchbox (so they feel special too).
Then you sit by your phone anxiously all day waiting for a call.
If you’re like me, you’ll cry when the gorgeous teacher sends you a photo of your child happily eating their safe food surrounded by friends!
9. Sleepovers are a potential nightmare
You are a little heartbroken when your child doesn’t initially get invited on sleepovers (understandable as he comes with an EpiPen).
But then they get invited and that’s intense too.
What’s for dinner and breakfast? What food can I send? How can I make this fun, normal and stress-free for everyone?
Then you sit at home, happy for them, but worried.
10. You worry about the unlikely
What if you are involved in an accident and the people caring for your unharmed child don’t know about their allergies?
What if they get lost and to calm them down a caring stranger gives them a food treat?
What if there is an emergency and you and your Partner can’t be with your child? Who will be safe to leave them with?
Should you give them some emergency food rations?
And on and on it goes. It’s definitely a good idea to think laterally in terms of the likely situations your child could become confronted with, but you also don’t want to become paralysed with fear and anxiety.
11. You are forever grateful to your wonderful friends
Last but definitely not least. And yes, I agree. 11 is an odd number for a list but I couldn’t leave this one out…
There will always be a few that REALLY get it.
They let you cry on their shoulder when it all gets too much.
They put up with your paranoia and happily let you question them about food even though they have cooked for your child countless times.
They don’t take offense when you come to their house armed with 2 weeks of food even though they have safe food at their house. And you’re only popping over for a quick cuppa!
My hope is you now know that all you have felt, and will feel, is normal.
Each experience and stage that you get through, will help you prepare for the next stage.
It gets easier as your child becomes older and more resilient.
But there will still be times when you sit down and feel a little heartbroken and overwhelmed.
I urge you to simply deal with the stage you are in and the rest will follow as you turn on your Allergy Parent Superpowers.
You’ve got this.
Karyn
Do you need help living with food allergies?
In addition to my First Aid Courses for parents and kids, I also offer individualised Private Allergy Education Sessions for families.
To reduce the overwhelm, create your Action Plan and feel confident in how to manage your child’s food allergies. At home and out in the world.
Contact me now to arrange. I would love to hear from you.
Click on the link below to book now! More details can be found here on my website or Facebook page.