Hi friends! Amelia here. I was diagnosed with t1d when I was four, and so my parents handled my diabetes care for quite a few years. As I’ve started to learn more and take better care of my diabetes over the past few years, I’ve been reflecting back on some things I wish my parents knew while raising a child with t1d and I wanted to share them with you!
Pump breaks are ok.
Diabetes is hard! Sometimes it helps to switch up the routine, and that’s ok. I never took pump breaks as a kid (I honestly didn’t know that was something people did!). I always thought that once I had an insulin pump, I would never stop using it—it was just something that I never questioned, and I don’t think my parents did either. I’ve realized more recently that it’s so great to not have something on me 24/7, even if it’s just for a few days, and can really help refresh my diabetes management.
Blood sugar absolutely affects mood.
I always thought of diabetes as a physical disease only because that’s always how it was presented to me. I never realized it could impact how I was feeling or my mood, and because of this I got really discouraged from a young age. I would often get upset more easily than my siblings, and I didn’t make the connection until more recently that my blood sugar was in the 200s and 300s more often than not at that time, so of course I was getting frustrated more easily! I think it’s so important to talk about diabetes in terms of physical health and mental health starting at a young age.
It’s ok to let diabetes stop you.
I grew up hearing “you can do anything with diabetes”. From my parents, from my endo, from books, etc. And I totally get this! I think it’s great to encourage kids that even with diabetes, they can do anything they set their mind to. However, I think it’s also important to let them know it is ok to rest, it is ok to let type one slow them down or stop them from doing something. They don’t have to push through and be “strong” to show that they can do anything. Slowing down and acknowledging that t1d is a part of their life that may make things a little bit harder, but not impossible, is just as important as “you can do anything with diabetes”.
Insulin needs change as kids grow. Don’t be afraid of insulin!
My parents were always terrified of my blood sugar going too low. It’s completely understandable, especially because I had some really bad lows as a kid. The problem is, because of this, they were afraid to increase my basal rates and give me more insulin as I got older, which led to high blood sugars. My blood sugar stayed in the 200s/300s for YEARS because I didn’t know that I could adjust my basal rates or give myself more insulin than I usually did. I have since learned that my insulin needs change and I need to give my body as much insulin as it needs to stay in a good range! I can always treat lows or learn for next time.
The diabetes community is incredible.
There was no diabetes online community when I was diagnosed (or none that my parents or I knew about!), but now there is an amazing online community of t1ds and parents of children with t1d. It has helped me so much, and I recommend connecting with others who know what you’re going through, whether in person or online, to anyone with t1d or caring for a child with t1d. It’s amazing to have other people who get it! Since I was diagnosed, talking to others who have t1d has helped my management and mindset around type one, especially when I’m feeling burnt out or frustrated.
Don’t blame your t1d for high a1cs or bad blood sugars.
I dreaded every endo appointment when I was a kid because I knew it meant getting back a high a1c. But it wasn’t only the high a1c, it was the way my parents and endo reacted to it. I knew I didn’t like having high blood sugars or high a1cs, but I didn’t know what to do to fix it. My parents each had their own idea of what I should be doing to better manage my diabetes, but I wish they had helped me figure out what worked for ME and helped me better manage my diabetes instead of making me feel bad about my a1cs.
Don’t be overprotective of your kids t1d (set boundaries)!
Of course you want to keep your child safe - that is the most important thing! But as I got older, I felt like my parents and I were always talking about numbers—what’s your blood sugar, how much insulin is active, what’s your a1c, etc. I think it is so important to set boundaries, even if it’s just not asking your child about their diabetes every time they walk into a room. Not setting boundaries with diabetes caused a lot of unnecessary worry for my parents and extra conversation about diabetes for me, which just made things with diabetes harder, not easier!
You know your child’s diabetes better than a doctor.
My parents always waited to make adjustments to pump settings until we went to my endo appointment. That’s what they knew to do and it was completely ok! But that meant waiting 3 months in between reviewing insulin needs. I encourage you to change your child’s pump settings/insulin ratios as needed (if you feel comfortable!), or consult your endo if you feel they need to be changed. Don’t feel like you need to wait until your next appointment if something isn’t working!
Make diabetes fun!
Even now, I love getting new tapes and stickers for my pump and cgm sites. New low snacks are my favorite! Diabetes can be hard day to day, but there are so many amazing things out there to help make t1d more manageable, relatable, and fun.
Parents of kids with t1d—you are all amazing. I hope this helped you, and we would love to connect with you more over at @typeonetogether on instagram and facebook!