Arlene & Rafael’s Transition Story: Letting Go

Through our PEP Talks program, we often encounter caregivers who want to learn how to ‘let go’ of their child’s T1D management when they are getting ready to start post-secondary school. The term ‘letting go’ means different things to different people, and the actual process of ‘letting go’ looks different for every family. We asked Arlene and Rafael to share their own story of navigating their son’s transition to university.

What does the term ‘letting go’ mean to you?

First, it meant letting go of having worry that our child’s sugars or a1c will worsen or that because he’s on his own, his health will decline. It meant slowly getting used to the idea that this is not going to be perfect. It’s not going to necessarily play out the way “we would do it” if we had control like we did when packing his lunches for middle school. It also meant letting go of expectations of how and what his diabetes care should look like as a young adult away at school. Finally, letting go included preparing our son more and more with knowledge, resources and agency to advocate and care for his diabetic needs.

If ‘letting go’ is a journey rather than a destination, at which point in the journey are you and your family?

Now, in 2024, we are ‘go to’ in case of emergencies or needs for refills of pods/pumps. We are parens that check in and follow his sugars on an app but do not ask daily questions about his sugars or what food he is eating? Our son goes to his own endocrinologist appointments, books follow ups, gets his blood work done and meets online with the dietitian. We discuss any new research or development on the management of diabetes and of course, once in a while, we do a more thorough check in to get him to self check if he is prioritizing his health care most of the time!

How did you transfer T1D management responsibilities?

In the first year of university, we went through how to get more insulin if needed and gave him copies of his health plan. We also made sure he knew how to use the university’s health plan as well as our individual one so that we could maximize coverage.

Arrangement for roommate and a friend to follow the app as well for any alerts. And discuss with roommate if we could text him in an urgent situation.

Organized the first meeting with his adult endocrinologist and had our son, share what was discussed and what the follow up would be. Encouragement to make sure to schedule in when next follow up bloodwork would be done.

We agreed I would still order refill pods for the pump but that he would save the Omnipod information on his phone and know how to report a lost of malfunctioning pump.

Let him know when it was time for next eye appointment and that he was to book the next one on his own and let us know the date so we could just check in and see that it was being done.

How did you and your child build and maintain communication through the ‘letting go’ process?

We’d have check-ins and follow up texts to make sure our son was following through on the responsibilities.

Then we further transitioned him to letting us know anything relevant without us asking.

Giving him agency was important and provided good overall life lessons. We agreed there would be no reprimanding or shaming for a bad day or week of sugars. We would just inquire if we noticed a pattern if he was aware and posed the question, “what will you do about it?”

What do you wish you’d known/been told ahead of your family’s transition?

I wish I’d know about DHF from our clinic at Sick Kids. I only found out about it as I happened to meet the director at a social function completely unrelated to diabetes.

What impact did DHF have on the transition experience (transition guide, scholarship, additional programming/resources, etc.)?

Daniel really felt part of a community after speaking with his mentor a few times and having the support of the DHF. The scholarship meant the world to him and because it came from Onmipod, he also felt the rep whom he spoke with was a good liaison for him going forward.

Now Daniel takes on mentees and feels very passionate about paying it forward.