Managing T1D for yourself can be difficult. But what if you're managing T1D for your child? Here is some practical advice from Jewels Doskicz to help you as you manage your growing child's type 1 diabetes.
Just when you thought life was hard enough - type 1 diabetes (T1D) rears its ugly head and you’re managing a chronic disease 24/7 with a toddler that can’t tie their own shoes, or a teenager that has no interest in any of it. It’s time to gain some footing.
We’ve all learned more than a few practical things along the way. I certainly have as a parent, and also as a person living with T1D, myself. Perspective matters - here are some realistic things for you to consider.
Get Yourself Some Sleep
Diabetes burnout is a real thing, and it doesn’t just affect the person living with the disease - it impacts caregivers too. No one wants stress-driven cortisol levels to blow through the roof and predispose themselves to all sorts of health conditions (including type 2 diabetes).
So get some sleep, for goodness sakes. All the worry, technology beeping, blood-sugar-fluctuation madness creates mayhem. Find a way to shut it off, even if it’s occasionally. Take care of you (the guest bedroom is calling).
Person First, T1D Second
Ponder this: What’s the first thing you typically say when you text or greet your child? I’m serious about this - and by the way, my husband wins in this department. His approach has always been, “How was your day?” rather than, “What’s your blood sugar?”
Some of us are more gifted in the communication department, but that doesn’t excuse us from making improvements. I’ve gotten the ugly, “Mom - all you talk to me about is my diabetes,” reminders. Although I know this isn’t a true statement, it’s her interpretation, and it matters.
Create Realistic Goals
Remove “Perfect” from your vocabulary.
There is no perfect with type 1 diabetes. Really, there isn’t. The importance of creating realistic goals and expectations with your growing child cannot be emphasized enough. T1D is such a hard disease to shoulder, even for adults.
Sure, technology makes things “easier,” but it also comes with its own set of frustrations. Kids want to do what’s needed for their T1D - and they also want to be like their peers, disease-free and trouble-free. It’s a constant balancing act. Stay in tune with where your child is at.
For True Understanding, Meet Another Family Living With T1D
Yup, community matters. If you haven’t already figured this out on your own, please entertain it now. And consider a diabetes camp for your child - they need a tribe of their people too.
Your Child Might Lie To You
Shocking, I know. You think your child is perfect - heck, they may not even be a teenager yet. But, kids living with T1D are damn smart. Our first mind-warping discovery: Our child was using control solution, instead of her blood, to give us the numbers we wanted to see on her glucometer (I know, ?).
The second was that she wasn’t really checking when I asked. She was pulling a great range of numbers out of thin air, “I’m 120; I’m 150, I’m 90,” and on it went. I won’t bore you with the rest.
Our take away has always been to address the underlying issue, such as how important honesty is. Punishing a child for their T1D isn’t a useful or well-accepted practice. Try to understand the “why” behind the behaviors instead. And remember, this too shall pass (like a bad kidney stone).
Listen to Your Child
You’ll be handing the management baton over to your child at some point, as unimaginable as that may sound. Thirteen years have passed since my daughter’s diagnosis. She’s driving, applying to colleges, and is a senior in high school - and guess what? She doesn’t want me using Dexcom Share - and I can’t blame her. I’m annoying, at best.
She wants our help, but she doesn’t need us texting her, “Hey, you’re low.” Her Dexcom is already doing that. As kids with T1D grow, relationship maintenance gains even more traction. This is their disease, and if they want the baton, it’s our job to help them take it.
Don’t Be a Helicopter Parent
Let your child have some space. As parents of kids living with a chronic, ever-changing disease, it is our duty to keep them safe. It’s a scary disease, I hear you. But, you can find a place of moderation too. Don’t risk their life, but give them room to make some mistakes with their diabetes and learn how to take some level of control.
The diabetes kit of my childhood years held a glucometer, insulin syringes, and Regular/NPH insulin. My mom had no real-time data and 36-years-later, I’m a healthy human being. Times have changed, but T1D still remains - and it can be a crazy ride. Please share your parenting experiences with others; we are an amazing community and we’re here to learn from one other.
About Jewels Doskicz, RN:
Jewels Doskicz is an Arizona-based RN with 22 years of clinical experience caring for the entire age spectrum. She is a passionate patient advocate, health consultant and long-distance cyclist. As a health writer, she covers a range of topics, including diabetes, health tech and treatments that are changing the face of health care.