Parenting a chronic illness
Parenting is hard enough already, right?
Throw and autoimmune condition or two into the mix and this shit just got reeeeal in a hurry, amiright?
Maybe you are new here, maybe you’ve been around these parts for a while, either way, full disclosure: I’m that Mom teaching the neighbourhood kids to swear.
Now that’s outta the way, let’s get to the good stuff.
It was about ten years ago now that the first AI diagnosis rolled in around this place, and it was in the form of celiac disease in my husband. At the time, the third kid wasn’t even here and I was a young mom of a little babe and an almost 2 year old. There is never a good time for a AI diagnosis, but I’ll wager this was probably the worst time for us.
My oldest was in the beginning stages of testing for autism and spectrum disorders, my surprise baby was born 15 months after his big brother, my husband had just lost his Dad and was the only one working.
Stressful was how I define that time in our lives.
After about 6 months of gastro-testing and feeling like an incurable patient, my husband had a (kind of) diagnosis that at least directed us towards a lifestyle that could support healing and recovery, albeit a long haul.
We floundered; we triumphed; and then flopped around floundering some more.
It was easier for us to all switch to Dad’s new food (strictly gluten and dairy-free) then for me to try and make a bunch of different meals. Plus, buying both kinds of food (fresh and preservative/sugar-laden wheat stuffs) was going to bankrupt us.
After three days on the new AIP my toddler changed. His behaviour was calmer, he no longer would crash his little body into things, he could tolerate stimulus for longer, and looking new people in the eyes became less stressful.
I didn’t attribute this to our diet change, at first.
Toddlers change so much from day to night, I was just like ‘cool, maybe some of the therapies I’m trying are working’ …and then I gave him a quick snack that had wheat in it while with friends and just like that…
I BECAME THAT PARENT.
Not obsessed, but really, OBSESSED with what was going into or onto my babies because it was undeniable that food was making the ultimate difference in my kids success. Wheat was not the cause of my oldest sons sensory issues, but by removing it from his diet, it helped him tolerate the world much easier. Our Paediatrician explained it like this: his little body isn’t working so hard to digest such a refined product anymore.
Fast forward to today, where all our kids react in different ways to wheat consumption, with the youngest the most severe. I’ve been parenting this brood for the last decade now, ensuring their food is completely free from their kryptonite and can tell you many things. But the #1 thing I can recommend is to build a support system, because babe you’ll need it.
Food is such a social thing, that with restrictions it can be really limiting. I’m here to tell you, you don’t have to be a hobbit that never goes to a BBQ again and that life can be just as rich, if not richer.
How to flourish in your new normal
Find a support group (online, or in-real-life)
Avoid being a helicopter parent
Don’t change the way you live.
Include your child
Self-Educate and share with family & friends
Sure these all look pretty simple, but when executed to your fullest potential you will not only survive but thrive in your new lifestyle changes.
1. Support Groups
I’ll be the first to admit that I didn’t think I needed this resource. I’d like to point out it is NUMBER ONE on this list here for a reason. It is invaluable the resources you can pull from like-individuals such as recipes, tips, local eateries, dr. advice, online resources, etc. This is my favourite for recipes, humour and local info.
PODCAST EPISODE ON THIS VERY TOPIC!
2. Avoid being a Helicopter Parent
Do you prepare your child for the road, or the road for your child? This old adage rings true for us mama’s of littles with chronic conditions. Sure, we so desperately want to remove obstacles for their life, to make it easier, but adversity is a part of life. By facing this condition head on, they will learn essential life-coping skills that will serve them in the future. So don’t reward the routine tasks the condition may require, and instead embrace this a part of their new normal that will help to grow them into the people they aspire to be.
Sometimes, kids need you to paint the picture entirely for them, one phrase I use a lot with my youngest is “I know this is a bummer right now, taking time out from play to take our medicine, but it’s important for your body to stay healthy and grow. You want to be the fastest swimmer in the races, right? We’ve gotta make sure we keep your body in great condition so you can reach those goals!’
It’s really easy to fall into helicopter-mode as a parent of a child with a chronic condition. Remember, kids are resilient and take the lead from their parents. So if you act stressed and negative towards your new normal, what do you think they will do?
3. Don’t change the way you live
It can be really easy to catch a ride on the pitty party bus and think “how will I ever do x, y z again!?” and I’m here to tell you, you will. It’s just going to be a little different now. Think of it like you commute to work. One day, construction pops up along your regular route and it made you 30 minutes late. By the end of the week, you probably would adjust your route to avoid the congestion, and arrive at your work only a little delayed. You also are probably going to check the traffic reports to see when it would clear and also give yourself more time to get there. Adjusting to your new normal is the same, while it’s not going to look like your old life did, after some minor adjustments life goes on as it always had.
4. Include your child
If your new list requires extra hours in the kitchen, grocery store etc make sure you are using this an ample opportunity to teach you child about how to keep themselves healthy. Teaching your child to cook and get interested in food will lead them to trying new foods, take ownership over their contributions and understand food doesn’t just appear from a box when they want it.
I have had my youngest in the kitchen with me from day one. He was diagnosed celiac just after his first birthday, so I knew he would need to gain this life skill to be self-sustainable as an adult. He loves helping as all my kiddos do but he genuinely loves it and i’m pretty happy about that. I’m sure his future spouse will be too.
To empower yourself with as much knowledge about the situation at hand is your first step. Then, you gotta share what you know to your people. The family and friends that will be there to support you and your child(ren) want to help and support you as best they can. Share a hot-sheet like this one that has the run-down on what you can and can’t have. Make a few copies for your Childs school, daycare, babysitters, grandparents etc.
Getting the hang of some of the new foods, medication or lifestyle requirements can take a bit of adjusting, and this is why support groups can be essential to your success. Plus, you’ll probably find your new BFF hiding within one of the many supports out there…so what are you waiting for? Tally ho!