OurSweet.TypeOne

Most people think managing type 1 diabetes is as simple as giving insulin. They have no idea what it really entails.

This is by no means an exhaustive list, but it captures some of the “invisible” workload carried by people living with type 1 diabetes and the carers managing it on behalf of loved ones. And this is just 10 things over the course of one week.

Most of these tasks aren’t particularly difficult on their own, but together they take up a huge amount of mental space and sit alongside our already busy lives.

Beyond the daily management itself, there’s the constant advocacy, explaining and behind-the-scenes work required to ensure children can safely access childcare, school, sports and activities, or for adults, to ensure they’re treated fairly and appropriately in the workplace.

Type 1 diabetes is so much more than it appears at face value.

Clinic day!

Once a year Violet’s quarterly clinic is with her DE, social worker and dietician. I find these clinics to be particularly useful as they consider Violet and her current needs more holistically.

We had lots to chat about with the first term of preschool drawing to a close. One of the biggest issues we’ve been dealing with is the lows at preschool. This is so different to our daycare experience and while I’ve been underbolusing significantly it hasn’t been enough. We chatted through some strategies to help with that so fingers crossed we can nail it for term 2!

She’s also going through a growth spurt (when aren’t they growing?) so we made a couple of tweaks to ISF and basal overnight. Hopefully that helps manage those nighttime highs.

And to top it all off she did her own finger pick for her hba1c today 🥹 she’s growing up so quickly and doing things that would petrify other 4 year olds.

Her bravery never ceases to amaze me 🥰💜 proud is an understatement.

You might see a parent on their phone, hovering at activities or leaving work early and assume they’re distracted, overprotective or not as dedicated to their job.

But when your child lives with type 1 diabetes, there’s often a lot outsiders don’t see.

Checking blood glucose levels.
Trying to prevent lows before they happen.
Calculating carbs for a toddler who may or may not eat.
Packing supplies for every possible scenario.
Making constant decisions to keep them safe.

Most of this work is invisible.

But it never really stops.

If this is your reality, you’re not alone 🤍

One of the hardest parts of diagnosis is the feeling that your world has just changed forever and in many ways it has.

But so many parents have sat in that same hospital room and slowly found their footing again. I can’t promise it’ll be easy but there will be light in your world again.

If you’ve been through diagnosis, what’s something you wish someone had told you in those early days?

I’m a huge believer in children never being too young to learn about how they can support their friends and classmates.

Last week I went into Violet’s preschool to talk to the children about T1D and read them a couple of our favourite books ( ). Violet also took along Brave the penguin and Toby the turtle to spend the day at preschool with her.

Do you do anything special at the start of a school year to share about T1D?

Another One Walk done and dusted in Canberra! Such a great morning catching up with our local T1 community and having a bit of fun with the kids all in the name of raising awareness for T1D! 💙💜

.dawson .smith.mp

Whenever I talk about our experience with type 1 diabetes and childcare I inevitably hear from people who say they’ve had an excellent experience so they can’t relate. Their educators care. Their centre tries so hard. They’re SO lucky.

I feel the same way. Violet had numerous educators over three years who took on the immense role of caring for someone who is medically vulnerable. They learned new skills and took the time to educate themselves, all while pushing their fears of making a mistake aside. They loved and cared for her and helped develop her into the spectacular little girl she is today.

Equally, the centres we attended allowed this to occur by taking her on without hesitation (not always a given when additional needs are concerned) and putting measures in place to cater to her unique needs.

While our experience wasn’t always perfect and mistakes were made, I too am grateful that our educators cared and our centres tried.

But that’s doesn’t mean we don’t need reform in this space. The two are not mutually exclusive.

Children attending ECEC deserve to be safe and supported regardless of their needs and their families should feel confident that the services charged with caring for their precious children are equipped to care for their needs. To enable this we need:

- Mandated and accredited education and training for T1D in ECEC settings.
- Expansion of the Inclusion Support Program (or implementation of an alternative program) to include T1D (and other medical conditions!).
- Clear legal and regulatory frameworks to support tasks such as insulin administration and manual blood glucose monitoring.

Without these changes, children living with T1D cannot be guaranteed safety in ECEC environments.

We can be grateful and still ask for better.

Families with needs like Lia's are exactly why it's so important we have this conversation about more choice around childcare options.

There's no point throwing more money at a system that's already bursting at the seams and leaving people behind.

More choice means more flexibility and better outcomes for parents and kids.

https://www.canberratimes.com.au/story/9181232/canberra-mums-plea-for-flexible-childcare-subsidy-solutions/

Piece by piece. We will get there! We need inclusion support, mandated and accredited training and education for type 1 diabetes and more choice when it comes to caring for our kids, particularly when medical conditions are involved.