Growing up with type 1 diabetes is no picnic. Kids need to learn how to balance the management of a chronic illness with their daily fun, something that even adults struggle with. Puberty brings rapid insulin sensitivity changes. Classmates can be cruel. Navigating diabetes and childhood and adolescence isn’t easy — kids need all the love and support they can get!
Being a parent or caretaker of a child with type 1 is tricky, to say the least. You want to give them independence but you also worry. It’s a tough balancing act.
One of the best things about the diabetes online community is that it easily brings parents of kids with type 1 diabetes together with the people that know these issues best — the people that have lived through them.
We decided to ask our community of people with type 1 who have lived with it since childhood: “What do you appreciate most about how your parents dealt with your disease, and what do you wish they did differently?”
Let’s be clear. This isn’t to find fault with parents, who have such a challenging role, acting not only as parents but as pancreases, too. This information is solely to serve our community with insights and observations that can help them play a positive and supportive role in their child’s journey.
Here is what people who have lived with diabetes since childhood had to say:
“I cannot tell you how vital my parents were. They made this normal. They changed everything they were doing in an instant. If they questioned anything they never did it in front of me. They supported me and they encouraged me. They taught me to look at this as an opportunity to educate others because I was diagnosed in 1980 and we knew no one at the time. They taught me resilience and self-esteem in handling this disease. They let me know I could do anything. When I wanted to go to college far away, they didn’t discourage me. They never held me back. And this goes for every aspect of my life, not just this. I miss them both every day because they were my biggest fans and I knew it and still do.” – Sarah G.
“My parents didn’t hover. They basically let me control it with support and help. They guided me, we talked about it frequently, but they didn’t control it … I was diagnosed at eight. They never told me I couldn’t stay at a friend’s house and never treated me differently. I was able to do everything a normal kid would do.” – Andrea H.
“Encourage self-reliance. This is normal, we are normal. I am always in awe of you parents. You are amazing.” – Sarah G.
“I was diagnosed at 15 and felt capable of managing it. They didn’t bother me, yet encouraged and helped in any way I needed. I wish I knew about low-carb and not just follow mainstream medicine. But hey, I’m not sure how open to that I would have been as a teenager,` so who knows”. – Shaina R.
“They bought me a pony, which I took full care of and showed them. I was up at 5 am and didn’t stop to the sun went down. Oh yes, I had diabetes. OK, I will handle that too.” – Laura W.
“I like the idea of making it into a science experiment. Obviously, it all depends on the child and parent and other considerations but an approach of ‘thinking out loud’ is a good thing.” – Halvdan W.
“Back in 1971, when I was 16, I imagine that a doctor told my parents I was old enough to handle it by myself. They never told me that but they didn’t even learn how to give shots or test my urine! But back then, one shot a day and testing urine weren’t that big of a deal. I’m glad they did it that way. I just figured it out on my own and I’m better for it. Now I’m healthy at 66 and happy!” – Aimee P.
“I’m glad they made me take responsibility right away.”- Kelly L.
“Unwavering support. Crazy over the top, unwavering support and agreeing with me anytime I screamed, cried, cursed about how messed up it was that I had diabetes. She was also on the front foot regarding low-carb and would fight any doctor or anyone who spoke to me in a way that was condescending, rude, dismissive, etc. Just knowing she was there and that I could ask for help means so much to me and it’s helped me feel empowered to run my own race and do what is in my best interest.” – Gemma B.
“I wish they were involved. I was 9 when I was diagnosed and I felt really alone. Ask my mother about insulin and she will say she doesn’t know a thing about it. Plus she always told me I couldn’t have kids cause I had diabetes. Another lie, I met many type 1 ladies with kids. Just focus on the positivity! As parents, get involved and show you care! Communicate with your kids on their food choices, what activities they plan, double check they have everything. It’s great to get involved as a team.” – G.C.
“I wish they would have tightened up my diet a bit by feeding me fewer carbs, but the dieticians and endos in the 90s told them I needed x amount per meal or I would die, so they did what they thought they had to do. Eventually, they stopped listening though. All in all, they did a great job.” – C.S.
“All I can say is I wish they had found Dr. Bernstein and his methods. There is a lot I wish, but that is the biggest one!” – R.M.
“I liked that they sent me to a diabetes camp. That’s where I learned how to take of myself.” – Sally C.
“I’m grateful they let me be in charge and stay independent instead of micro-managing. I wish they had been more willing to learn about better control and nutrition. Although few doctors I’ve ever had were much help there, so my parents were just going along with what they were told. I learned how to get better control in my late 20s through my own research and worry about the long-term damage that’s already been done. I’m now trying to help my parents take better care of their own health problems through nutrition and a healthier lifestyle.” – Melissa S.
“Even though I couldn’t see it then, my mom gave me the space I needed as a teenager to make mistakes and learn. She must have been so anxious by my behavior and I feel bad for that. But she supported me and set me up with everything I needed to become successful as an adult. She cheers me on now and I hope she knows I’m only doing so well because of her.” – Kelsey S.
“I was 12 when I was diagnosed and my parents did what they were told — just dose for the high-carb meals. Well, here I am at 30 years old with diabetic retinopathy that caused swelling when I was pregnant and I had to get injections and lasers in my eye, which were super painful. I also have peripheral neuropathy, so that is fun too. I eat low-carb/keto now to avoid spikes the best I can.” – A.R.
“They did a great job at encouraging me to embrace being diabetic, without it being something I needed to hide or feel quiet/embarrassed about. My mom brought a lot of enthusiasm into my diabetes management. Diabetes just became to me this interesting fun tidbit I could share with others and never saw it as something that reduced my value as a person. However, they did not make mental health support a priority, not giving me viable options which I needed, as I had a severe needle phobia. It took me about 6 years after diagnosis to do my first injection, with upwards of 10 hours each week since diagnosis working on forcing myself to give a shot before I succeeded. And it wasn’t until 4-5 years after that it became ‘no big deal’ to me. It scares me to think I could have become one of those young diabetics that rarely takes insulin because they wouldn’t acknowledge how serious my phobia was.” – A.A.
“I always felt empowered to manage this disease on my own from an early age. They never pushed but followed my cues and let me take over when I was ready. They did a great balancing act, and I look at all the parents now in our community and my hats go off to you. You are all doing an incredible job.” – Matt. F.
“I felt like my disease wasn’t spoken about in front of others. It bothered me since it still always existed even in those moments. It gave me a huge complex about my disease and led me to many social issues down the road since I felt ashamed. I recommend talking freely about your child’s condition and never make them feel like they should hide it! They will have a much healthier outlook on their disease and that will translate to many other aspects of their life.” – V.V.
“Stay positive! Be there to listen! Educate yourselves and never settle for a doctor that you aren’t absolutely thrilled with. Find a doctor that both you and your child feel comfortable with. It may take time but it will be worth the wait for a much better experience for you both.” – Nicole M.
I hope the advice from members of our community helps you navigate your role as a parent of a child with type 1. Remember, every child is different and every situation is unique. Communicate with your child and do what works best for you, your child, and your family.