#1597 Advice for T1 Parents from T1 Adults - Part 2
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Adults living with type 1 diabetes (from the podcast's private Facebook group) share their thoughts with type 1 parents.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox podcast.
If you're looking to meet other people living with type one diabetes, head over to Juicebox podcast.com/juice. Cruise. Because next June, that's right, 2026 June, 21 the second juice Cruise is happening on the celebrity beyond cruise ship. It's a seven night trip going to the Caribbean. We're gonna be visiting Miami Coke, okay? St, Thomas and st, Kitts, the Virgin Islands, you're gonna love the Virgin Islands. Sail with Scott and the Juicebox community on a week long voyage built for people and families living with type one diabetes. Enjoy tropical luxury, practical education and judgment, free atmosphere. Perfect day at Coco Bay. St, Kitts, st, Thomas five interactive workshops with me and surprise guests on type one, hacks and tech, mental health, mindfulness, nutrition, exercise, personal growth and professional development, support groups and wellness discussions tailored for life with type one and celebrities, world class amenities, dining and entertainment. This is open from every age you know, newborn to 99 I don't care how old you are. Come out. Check us out. You can view state rooms and prices at Juicebox podcast.com/juice. Cruise. The last juice cruise just happened a couple weeks ago. 100 of you came. It was awesome. We're looking to make it even bigger this year. Hope you can check it out. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Every once in a while, I see a post on the private Facebook group for the Juicebox podcast that makes me feel like I wish everyone could see this, and today that happened, so I'm going to give you a ton of highlights from that post. Don't worry, I'll get through it quickly. I know Scott reads you the internet might not be your favorite thing, but trust me, this is valuable. The original poster asks for adults who were diagnosed as children to answer a couple of questions, is there something you appreciated that your parents did to help you as a child? Is there something your parents didn't do that you wish they had done? And so far, I'm seeing in under two hours, 86 replies. I don't know if I'm gonna read you all 86 of them, but maybe, who knows? Let's see, my parents involved me in my own care very early. They let me be a kid, but they also understood that this disease was lifelong, and in order for me to understand it as best as I can, it was best for me to get involved. I'm glad they did that for me. They never pressured me or anything, but they did a good job being honest with me about the disease and the care and letting me take part in it. They also taught me it's okay to say no to food. Sometimes, I think a lot of people, especially in the US, have horrendous relationships with food, and they feel like they need what they want, and they want all the damn time, and then sometimes wonder why their diabetes is hard to control. Sometimes they told me no, and I'm glad they did, because now I can say no to certain foods in certain situations easily, and it doesn't phase me at all. It's just food and it will still be there later or tomorrow. And I'm grateful for all of this. Thank you. Next one. I was diagnosed at 13 in 1995 the only thing my parents did immediately after diagnosis, like while we were in the hospital, was learn to do my injections, because I refused. I was so thankful to them for taking that off my plate. My mom sent me to diabetes camp my first summer with diabetes. At the time, I was terrified and I did not want to go, but I'm glad I did. I learned so much the first day, including having reverse peer pressure to do my own injections. I saw a six year old doing their own shots, and I felt like I should know how to do it as well, so I just did it. I attended the same camp Clara Barton and I'm still friends with a handful of girls I met the very first summer. This person goes on to say my parents were hands off other than the shots, and I didn't know I had a choice about it. In their heads, diabetes was my thing. I'd have to live with so it was better for me to figure it out while under their roof instead of after I had moved out. Did it make me take a lot of responsibility at a younger age, it did, but it also made me incredibly confident in myself and my ability to take care of myself. It taught me advocacy and adaptability and that I can lean on others when and if I need to. Isn't that awesome? She goes on to say, My parents always allowed me to be the final say. And my decisions in my care. Did I want to go on a pump, stay on shots, try new insulin? I did a lot of my own research and discussed it with them, but at the end of the day, my decision to this day, 30 years later, my mom still celebrates my diagnosis day with a card and a little note about how proud she is of me. Some years have been more difficult than others, so her little notes of encouragement and showing me that she sees me and how hard I work. That was lovely. Made me emotional. Thank you for sharing that. Let's see. Wow, this is a great post. You have some awesome insight on a bigger picture. I'm 37 and have lived with type one diabetes for 32 years. My parents did a great job, even before Dexcom and pumps of never letting me use my diabetes as an excuse to not to do something through adulthood. I've always had that mindset. It may take more prep, but I've been able to do things that I've wanted to do. I hated that they restricted food. Learned to Bolus for tough foods together, so they'll have the knowledge to do so without you and talk about alcohol and drinking effects on your glucose. So I'm an ICU nurse, and I can't tell you how many patients I've treated that could have avoided a hospital stay with that knowledge. Another great insight. I was diagnosed at 13. I'm now 39 so this might be different for those of you who have younger kids, but my mom had me get involved right away, gave myself my first shot, checked my blood sugar all the time. She was right there. Knew how to do everything, knew what questions to ask, but she wanted me to be as independent, responsible for my care as possible. Person goes on to say, I felt ownership over myself and what was happening to me. I didn't feel like the doctors or my mom were telling me what to do, and without her stepping back and letting me handle it at 13, I would have felt like I was just another thing I had to do, or that my parents were telling me to do. And I have talked to her about this since becoming an adult, and she said it was really hard, especially in the beginning, to not just do everything for me, because that is an instinct of a parent, to protect your kid at all costs, to make things easier for them, but she knew it was going to be the right thing for me, having something medically wrong with you, you can feel so out of control, and it's very easy to not feel autonomy over your body. So having the tools to feel as in control as I could was so important if I needed her. My mom was there. She was at every appointment. She knew how to do everything. She goes on to say that back in the day, we used to have to eat at certain times of the day because of how the insulin worked. So I had to eat my breakfast at 8am I used to babysit late nights, and my mom would make me breakfast and bring my glucometer insulin to my room, wake me up to do everything. I would eat and go back to sleep.
She was my support, even though she wasn't the one doing it all. That's another one. I'm gonna cry making this damn episode 45 years type one, diagnosed at six, also the parent of a type one, teaching me to be independent and able to advocate for myself is the best thing my parents did for me and that I'm doing for my daughter, let them live and learn and be there to support them when they make a wrong choice, but don't make them feel bad, because in time, they will figure it out on their own. It was a long time ago for me. There wasn't any technology, but what helped was that my mom included me in decisions, not that I made the decisions, but that she would work through the food counting and the insulin amounts with me. She also kept a journal of food insulin and just as importantly, how I felt, be it cranky, drowsy, sick, or whatever. We didn't have a CGM or even finger sticks when we started out in 75 so connecting how I felt with the BG was important. This person has had diabetes for 50 years and still carries an A 1c of five, seven, and they say knock wood. No complications yet. I was diagnosed at five, and one of the best things my parents did was to let me figure things out with them. It's another one saying the same thing. I was only a child, and I was fairly bad at being a child. Even at five, I was fairly bad at being a child. I don't know what that means. It's funny, even at five. So I wanted to learn and manage and treat my own hypos, inject myself and etc. I had been at school for six months and thought I knew everything. My mom was also not an alarmist, and treated my diagnosis with calmness and a lack of fuss, as did her parents. My father is a little more alarmist, but he did a good job of masking it. However, his side of the family were quite hopeless. They irritated me profoundly with their random fussing. My mom also told me that a lot of adults are a bit stupid and had learned incorrect things about diabetes, and I might have to put up with this for a while. No, it's awesome. She taught me to swear in lieu of lollies and chocolate. This was a bit fabulous, because I had a thing that other kids didn't even if I couldn't eat the same treats they did. It was in the 70s, and the diet was quite restrictive. She says, I now swear and eat chocolate and maintain a very tidy HBA 1c and A time and range. I also have. Good mental and physical health. The absolute best thing that happened in my early type one years was that at my friend's sixth birthday party, my mom and I had worked out some good options for me to eat, but Caro, my mom's friend, quietly told me that all the jell orange quarters were sugar free and that I could go mad if I wanted to. I nearly cried with relief. I had already taken on a lot of responsibility. It was my choice, and I was doing my best to get things right, but Kara had just made my job so much easier. That's awesome. You guys are really sharing. This is lovely. Hold on. I see this person has a slightly different perspective, very interesting. Ready? I've always had the mentality that if I was going to have to do this for the rest of my life on my own, I might as well get as much help as I can while I was living under my parents roof, I will say I didn't get as zoned in on my diabetes care until I was like 23 when I started to see small but reversible complications. My a 1c has always hovered around seven and a half to 8.2 for 20 years, and I'm still trying to get it lower. My suggestion is to ask your kid what they need from you. Show them this group and put the podcast on when they're around. If they are still young enough, send them to camp, if they're old enough to take on some responsibility, let them or make them, but don't ever be mad at them for a mistake they do with diabetes. They are already feeling the mistake and the consequences before you realize it be caring and annoying. She laughs. Remind them to Bolus, remind them to check blood sugar. I grew up with just the basic pump and finger sticks, so there was a lot of nagging, but I really don't mind. They never restricted food. There's a dosage for every food, and we were capable of eating it. Now, healthy food options should be taught to everybody. Just being type ones can eat whatever they want. That doesn't mean that they should eat the things that people think they shouldn't all the time. Moderation and proper nutrition education is key. Protein and fat is a must. Intermittent fasting has helped my insulin uses go down. My blood sugar leveled out, and the average time and range has now gone from 10 to 60% over three months. That's awesome. Good luck to you and your kid. I appreciated that my parents never restricted what I ate. I was always told I can eat whatever. I just need to give insulin for it. As a young girl, I think that helped my entire childhood not revolve around food, counting carbs, sugars may be high sometimes as part of the disease, we don't always need to be perfect. I wasn't diagnosed until I was 14, and now I'm 46 my parents made me do it from the beginning. My mom was a nurse. She knew the basics, but I did my own injections, glucose testing, et cetera. One thing that both my parents did that helped me was they immediately switched to drinking water and diet soda. They let me be a normal teen. I played sports. I went to France in the summer after my senior year, I went out with my friends. I worked all summer long, and I know they worried, but their worry didn't get so bad. They didn't allow me to do stuff. We still ate cake on my birthday and had pizza on Friday nights. Type one here for 20 years when I was diagnosed in my teens. Looking back, I will always be grateful that my parents taught me from diagnosis that my care was my responsibility. They were there every step of the way, every appointment, etc. Because of this, I am so much more involved, invested, versatile, responsible, accountable, proactive, grounded and humble in my care. For example, should my insulin pump break down, I am able to easily get back to being MDI, the internet and all the conveniences of tech go away. I know the fundamentals of bolusing and carb ratios, corrections, etc. My parents did not micromanage me, or at least I don't think they did. This person says that all families are different, but I think my advice might be to let go a bit and let the child learn. I understand that can't be done for a very young child, a toddler or baby, etc. And every person is different. Some are definitely more independent than others, but I guess once a child gets the grasp and the understanding of what to do. You have to let go a little bit. This person was diagnosed in 1983 someone posted episode 392 advice for type one parents from type one adults. So this is an update to that episode. If you want to go listen to that one as well. I am totally for this, because I feel like I'm ruining my kid. This person says, just diagnosed two months ago. Probably just normal parent guilt, but it's on a whole other level. I'm glad to be hearing from other adults with firsthand type one perspective. Look, they get some support here. You're not ruining your child just by caring and posting. This shows you're an amazing parent. I agree. I wish mine would have sought help for their fear and anxiety surrounding me. It took years of therapy as an adult to stop feeling like a problem. Oh, I've been waiting 62 years to be asked this question. Well, then this is going to be hell of an answer. I think my answer is that my parents were great. It's just that I realized that things look different from my perspective, and I wasn't sure my folks knew that i. I hope that makes sense, my parents encouraged my independence so that I was able to take charge of myself at a fairly young age. At the same time, they would quietly pitch in on tasks that I had trouble with until I didn't. They made sure I never felt like an object of pity. I know my diagnosis was much harder on them than it was on me, but they managed to set a positive tone and live by it. It was basically a normal kid like life, but with hard candy in my pocket, and I think they sent me to camp. It must have been easier back then fewer tasks and benchmarks. Okay, this person says diagnosed in 87 at age nine. From the get go, I was taught how to manage, how to draw up insulin, measure, food, etc, what portions looked like for situations when I wasn't at home, how to treat it low. My parents gave me agency over my own body and over my diabetes. They never made a big deal about it. I was never told I couldn't do something. Never denied a sleepover or a party or a hot dog at school. I didn't miss school for lows or highs. I had no accommodations unless I was actively experiencing a Hypo. I am so glad my mom never said she wished it was her instead of me. She actually became a type one at age 50, many years after my diagnosis, and I never thought to myself, Oh, now she'll understand what does that success look like for me. Now I have three adult kids a degree, no complications yet, no diabetes, anxiety, nothing I see as a true impediment to getting the life I want. I don't pray for a cure. I have never once felt sorry for myself or asked why me. I am deeply, deeply grateful that my parents gave me the gift of independence. This person jumped in because I commented about an hour into this, and I said, I'm going to make an episode out of this post. And a person said, Oh, I think that's amazing. I'm the parent of a 10 year old daughter diagnosed in 2024
I'm also a nurse practitioner, and it is amazing what I didn't know and how much I've learned in the last eight months. My biggest struggle is preventing the prevention of resentment. Because of our daily battles, I want my daughter to feel like a normal kid, yet she often resists what that means fixing highs, late pod changes, etc. I read a post by a member months ago that said she resented her parents for all the pressure they put on her and the control and the constant nagging, I don't know how to find that happy medium. I don't either. That's why we just talk about it. I'm struggling, and I feel like I'm drowning at times. I take on complete management myself. My husband doesn't do anything. It's 24/7 as we all know, but I want her to feel as little stress as possible while being as independent as she wants to be with their own management. I love advice on helping to decrease the resentment and how to foster the trust and care and relationship without causing a strain as the age. I'm including that here because that's the middle right. Like you know, you can hear from all the people that you know can look back in the rear view mirror and say, here's what my parents did, and it really worked for me. There are just as many people whose parents did that and it didn't work for them. There are just as many people who were more involved, and, you know, did things longer, like there's no one size fits all answer for this, some kids will respond well to what you've heard. Some won't. My mom would tell you that she tried really hard, and I wouldn't listen to her. It was not until I found a reason to be responsible for my health that I started to care. You can lead a horse to water. I hope I can be a cautionary tale for kids now, but they really need to find their own path and a reason to care. I was diagnosed at 14. So I was very independent. From the beginning, my parents learned about how to give shots, but never gave me any, not that I wanted them to. They were with me at all my classes. Learned the basics, but after that, probably the first year, they didn't keep up. I've always been doing this myself. It is definitely not their fault, because the doctors always told them that I was doing great. I really wasn't doing that well, I had an A, 1c in the eights, and I never asked for help. I wish they would have taken more time to learn about how to help me, not lecturing me, because I definitely wouldn't have listened, or just time to keep up with the technology so that I had someone to lean on if I needed it. That being said, they have been my biggest supporters since my diagnosis and after the initial fear of low blood sugars, they never bug me about numbers. If I would have asked for help, they would have tried their best and still would. So basically, even if your kid is easy in quotes and does everything themselves, you should still learn about management and how to live with diabetes. They might not appreciate it in the moment, but they will later. I love this post as a type one adult. I appreciate your curiosity and willingness to listen to those living with the disease. I'm so glad this is going to be an episode Me, too. I was diagnosed at 50. Mean and loved being independent. I would have absolutely despised having my parents on my back about my diabetes, even when they would make comments I would get frustrated. But the key problem was they weren't educated about it. They didn't really try to learn the disease and the nuances of it. They just knew sugar equals insulin, low sugar equaled eat. That's what they know. Maybe they had been more educated and approached from the viewpoint, I might have been more open to it say that the other downside to them not being educated was that I wasn't given opportunities to become educated. I struggled with my sugars until I became an adult and took charge of my own. All this to say, I think there's a bit of resentment when you have an older child who craves independence and already feels pulled down by their diagnosis in their life, and they have a parent who is breathing down their shirt. But there's also a blessing in having a parent who cares enough to learn with you. I think there are so many gray areas, and you really need to know your child best. Take their cues when they're ready to be more independent, let them let them make small mistakes, let them become educated. Let them learn their body cues and when they're ready, let them go on and do the things on their own. They won't live with you forever. And a well educated diabetic is more important than a well educated parent. I was diagnosed in 1994 at age 16, but because my mother and grandmother both had type one, I grew up surrounded by it, and my parents worked with diabetes educators to help me get dialed in. I took over most of the management fairly early, because I knew it would be necessary if I wanted to go to college. I have a weird experience with this. I wasn't type one as a child. I was diagnosed in my late 20s, but I was raised by a parent with type one. It wasn't intentional, but it taught me a lot about how I wanted to manage and how intentional I am about handling burnout and stress related to diabetes. He faced a lot of different challenges than I did due to available technology, so his options were limited, but his relationship with diabetes and the complications and outcomes he's experiencing really impacted how I handle diabetes for myself, we have a pretty open relationship, but he's always been fairly closed lipped about his diabetes, and sometimes I wonder how different his relationship with diabetes would have been if he had a social support structure like we have now, with social media and outreach programs. I was three, and I can actually remember my first time my mom and dad held me down to give me my first needle. It was horrific, but if they hadn't, I've kept going, I wouldn't be here. My mom gave up her life to give me mine, and I am ever so grateful. Once I started doing it myself, I really understood all the anxiety and worry over something you can't always control, and respected her more for it. It is a hard and tiring job, and when you've got a healthy support system, it makes it a little easier and a little more fun. Type one for 33 years, diagnosed at 12. It was hard, and I felt alone and hated so much. My mom helped me, but still, to this day, doesn't understand the things I felt, but I'll say that I wish my mom helped me longer. It was learning for all of us at first, but after a year, I was left to do it on my own. I'll also say I've been married for 23 years, and my husband may not feel what I feel, but he has helped me since the first day we were together, and he helps me not give up and not feel alone. This person says I am sending lots and lots of love to everybody. I'm 57 and a type one since my teens. I think it's wonderful to have both perspectives. I am 100% complication free. I love telling that to people to confront them, but I can't claim to have been diagnosed as a young child. And the most surprising thing about this group is the level of regret and guilt parents feel. I'm a mother of four, and I understand those feelings would be completely normal. I just never considered how my own parents felt at my diagnosis. Personally, I would say, understanding the physical side of things, being tolerant of lows and out of range, because I don't always feel fantastic, but don't change your goals for your kids because of this disease. They are still strong, beautiful, capable people. I don't ever want anyone's pity, understanding. But understanding is awesome, though. I believe that we all need to find a way to do everything with diabetes that's been my life. How can I do this? I haven't missed out on a thing, and I'm a kinder, more compassionate person because of type one. That's very nice. Type one adult diagnosed at 12. I appreciate that. My parents let me be my very independent self. I gave myself my shots, calculated my carbs, did my math, check my sugar. I was older than a lot of the kids that I see here in the group sometimes, but I didn't have any restrictions on food either. One thing I did not appreciate was being treated differently. I wasn't allowed to go to friends houses for sleepovers or after school events very often because my parents worried about me. It is possible that it's different now, since they have Dexcom and follow apps, but when I was diagnosed, that was not a thing. I also wish my parents would have advocated for newer technology. I feel like they just went with it and so. Pump, and that was it. I had the same one for 10 years before I got my own insurance. I've only had a Dexcom for the last four or five years, and I just feel like the advocacy was not present enough. I was diagnosed at 12 in the 80s. I took the bus to my diabetic clinic myself, dosed myself alone in our bathroom, and never knew what was going to be on the plate for dinner. School. Teachers did not know I had diabetes. I managed all my lows, bought all my low snacks. There was no glucagon. That's what was going on at the time. My mom let me handle it,
but she was there when I asked for help, which was few and far between. I was nine at diagnosis. To be fair, she was a teenage mom with two young kids who lost her husband at a young age, so I was pretty independent from the get go. I don't know if mentally, it was something she could have dealt with at the time if she had to manage it all, she was an emotional mess. When I was discharged from the hospital, I knew how and when to check my blood sugar, give injections which insulin I needed for what I could carb count fairly well, and had a notebook paper cheat sheet I kept with me in my insulin case until I memorized the carbs that I ate most. I knew what to do on sick days and that it was my responsibility and decisions that would make or break my outcomes. No one could do it for me. She let me yell and scream and be mad, but also confided in her about being scared and feeling different. Though no one treated me any different than any other kid, because I wouldn't let them my diabetes was never allowed to be an excuse, to be honest, the only thing my diabetes ever held me back from was a career in the military because I couldn't pass the health check. I wish she didn't worry as much as she did, but it's in her nature. I didn't understand that until I had my own kids. So my advice, they can handle what you let them, but you have to give them a chance. Don't let their life or yours be dictated by this disease. This person says, Thank you so much for sharing your stories. I have tears rolling down my face reading your thoughts and experiences. As a parent of a newly diagnosed type one who's 13 years old, I promise to carry you all with me in support and try to guide him. Thank you through the original poster for this thread, I hope it's just as meaningful to others as it is to me. Diagnosed as a teen, my parents loved me, supported me, and attended diabetes education classes with me, but they let me handle my diabetes on my own. This set me up for success in college and beyond. The other things parents did right? I wanted to go to diabetes camp, but we couldn't afford to, so my mom found a scholarship through Lions Club, going to diabetes camp as a teen, soon after diagnosis, changed the trajectory of my life and helped me in so many ways. Yes, there are some risks associated with sending kids to diabetes camp. For me, the benefits were immense, and now I have lifelong diet buddies. Okay, well, I've gotten to the end of the 96 comments, but I will now refresh it and see what else there is before I stop. That's just been good. You guys are smart. I'm proud of this group. Let's see. Maybe this is the end. Yep, that's it. I made it. So in three hours, 96 people commented. Other conversations broke out. I think I read you pretty much everything. It's been a half an hour, as Scott reads the internet, that's probably enough, right? Going to take all of the information in this post and find a way to turn it into a blog post. So check for that at Juicebox podcast.com We'll call it a companion to the episode. You'll find it. Thank you so much for listening to me read the Internet. I'll be back soon with another episode of The Juicebox podcast. You
and don't forget, if you enjoyed this episode, there is another episode that was made years ago on the same topic. It might be interesting to hear that one as well. It's episode 392, called advice for type one parents from type one adults, I think I'm just going to call this one advice for type one. Parents from type one adults. Part two, not the most imaginative, but not bad either. I might find a way to combine all these into that blog post I was talking about too. If you're looking for community around type one diabetes, check out the Juicebox podcast, private Facebook group Juicebox podcast type one diabetes. But everybody is welcome type one type two gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast type one diabetes. Diabetes on Facebook. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one, you can start your journey informed and empowered with the Juicebox podcast, the bold beginning series and all of the collections in the Juicebox podcast are available in your audio app and@juiceboxpodcast.com in the menu, the episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com,
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