#392 Advice for T1 parents from T1 adults

October 9, 2020Scott Benner

Adults living with type 1 diabetes share their thoughts with type 1 parents.

From the Juicebox Podcast private Facebook group

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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, welcome to Episode 392 of the Juicebox Podcast Today Show will be brief, but full of great information. Let me explain while we play some music.

This is going to come to a surprise to an but an posted on the private Facebook group a simple question. She said to the T one DS in the group. What advice would you give to us parents? Like what things did your parents do? Well, and what do you wish they did differently? And I thought, this has got a chance to be a good post.

Unknown Speaker 0:48
And I'll be damned if it wasn't

Scott Benner 0:49
so good. In fact, I'm gonna read everyone's answers to you. I love that the podcast attracts as many adults living with type one as it does parents of children. It might really honestly be the only place with such a great blend. And I love how they help each other. The private Facebook group, by the way, if you're interested is called Juicebox Podcast type one diabetes, there's a couple of quick questions that you answer to, you know, prove that you're a human being. And then you're right in and talking with well over 6000 people, just like Anne, and the people who answered these questions.

Before we get started, I'd like to remind you about the T one D exchange. You can be heard and support the Type One Diabetes community while you help drive research that really matters for people living with type one. The T one D exchange registry is a research study designed to harness the power of individuals with Type One Diabetes. This is a nonprofit research organization that is dedicated to accelerating therapies improving care for people living with Type One Diabetes. they translate real world experiences into real world solutions that make your life easier. The registry is a research study designed to gather real world evidence firsthand, easily and quickly. The questionnaire that you'll fill out can be done on your mobile device from the comfort of your home. And since Type One Diabetes is a chronic condition that people live with their entire lives, participants can complete the questionnaire annually to help researchers understand surviving and living with type one, this is an amazing thing you can do it is 100% HIPAA compliant, absolutely anonymous. And when you join the registry besides doing all of those things I've just listed, you end up supporting the podcast. So if you've ever wanted to support this podcast without actually spending money, this is a great way to do it and feel good about what you've done. I joined the registry. As the parent of a child with type one by the way, you have to be a US resident either have type one diabetes, or be the parent or guardian of a child. I don't think it took me seven minutes to finish. It was really simple to do. T one d exchange.org. forward slash juicebox. In just a few months, over 400 listeners of this podcast have added their voice to the T one D registry. I believe that what the T one D exchange is doing is valuable and heartfelt. And I'm genuinely proud to be telling you about it. I hope you can add your voice to the others.

Let's get to this post, shall we? Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise please always consult a physician before making changes to your health care plan. We're becoming bold with insulin. Now back to Ann and her question to the T one DS in this group. What advice would you give to us parents? Like what things did your parents do well, and what do you wish

Unknown Speaker 4:11
they did differently?

Scott Benner 4:15
Okay, the first should do these invoices but that would be terrible. Wouldn't it if I was like amber said that wouldn't be good at all. Can you imagine if I thought to do that. Amber made a list she said at times it will seem like you have it all figured out. But other times you will feel like a failure. Don't beat yourself up long battle. She also suggest to take your supplies out of the boxes that they come in and you know find some sort of a kit or a place to put them so you're not digging through you know cardboard all the time. She says to get a little cooler bag for travel. Amber also said that Adam and Eve juicy juice has 4.23 ounces of juice in a box. Amber that's Arden's juice box as well. She uses the ones with Sesame Street characters on them. Those are her she has two favorite flavors in there. And you're right. They are terrific for not causing a rebound. Hi. Rachel said, my parents gave me a lot of independence. It was very helpful for our relationship and my self management. I was diagnosed in the early 2000s when I was five, so texting wasn't a thing back then. And I had to be a bit more independent. Always speaking positively is so important. Like saying, quote, you did so well yesterday. How did you bolos for that? Is it productive and affirming statement, I wanted to please with my blood sugars. I always thought of them as grades. She says to try to find a way to take that pressure from your children. And just think of the blood sugars as numbers, and that they have nothing to do with your child's worth or value. Also let them know that they're total badasses. It wasn't until much later that Rachel realized the incredible stress that her parents were under. While they learn to take care of her and type one diabetes. Nancy said that she's the parent of a 20 year old that was diagnosed at 19. She's found that asking things like why are you low? or Why are you Hi, is something she tries not to do? Instead, she asks, If she's okay. Often then her daughter would tell her what caused what was happening. And then she'd help her to fix it. Her daughter manages very well now she says, but in the beginning, she didn't want to think about it. And so Nancy did most of it. Never tell them they can have something to eat. I completely agree with Nancy. However, she always tried to prepare foods that were easy on her daughter that didn't spike her blood sugar's too much. And she kind of did it without her daughter knowing. And she says don't fuss when things go crazy. Just offer to help. Now even though Nancy's not an adult who's living with Type One Diabetes. I thought her comment was wonderful. And so I put it here. Thank you very much, Nancy. Amy says let them be kids, let them make mistakes so they can learn from them don't make everything about diabetes. When they get home from school, your first question should be how was your day? Not how are your blood sugar's let them choose their level of independence, and what they're comfortable with, don't force them to do everything on their own, because they will have the rest of their life to do it without your help. Amy, again, I am in complete agreeance with what you said there. I used to see art and come in the door. And I was overwhelmed. Wondering what our blood sugar was, like, Is she okay, you know, this is before dexcom share and I couldn't see it. And I just realized one day that I was seeing my daughter as diabetes instead of herself. And I made a conscious effort to change that. Lisa was diagnosed at age 10. And now it's 33 years later, she's married. for 20 years. She has three wonderfully healthy babies. And anyone seen the high fives the low sixes and all Lisa wanted to tell you was to let them dream of the future about college and weddings and kids. Don't just think that diabetes means that none of those things are going to happen. They can absolutely have any of those dreams. Thank you. Lisa Meghna was diagnosed in March of 2000 when she was about 16 years old. Take the emotion out of treating diabetes and put your love and emotion into taking care of the kids. Because diabetes is a disease. blood sugars are data. She says when your car needs gas, the tank you just fill it up. We need new spark plugs. You just put them in, but we don't get angry about it. being mad at diabetes won't help. You have to accept that this is where you're at now as parents for your kids best life. The best thing her parents did. Never let her feel sorry for herself and never let anyone else feel sorry for her either.

She wasn't coddled, no one made excuses for she says to get involved in care from day one. Even her 10 year old son knows how to check her blood sugar she says you see what Megan saying? She She wants your children to know how to take care of themselves. Meghan goes on to say please don't settle for good enough. You're still the parent and you can still empower a team to take care of themselves while pulling back the reins when needed. No different than homework or anything else. Caitlin shares that she thinks her parents were actually scared. But it would come out as anger when her blood sugar was high. They didn't offer a lot of help, but would yell at her when her blood sugar's were high. And she remembers being afraid. She says that she actively hid her blood sugar's to keep these things from happening. So she wants you to remember that while highs are not good. You can help. And being angry is not the way that started a conversation between a lot of different people. My dad was classic for this to someone else says, I think this is very common fear coming across as anger to kids and teens, it definitely doesn't help. But I'm not sure how to prevent this as a parent. Caitlin jumps back in and says, I think by naming it and saying things like, this is scary for me because I care about you. Let's focus on getting it down. And then maybe we can talk about what happened and how to prevent it next time. She said she's not talking about parents just feeling a little anxious, she's referring to being yelled at sworn at and blamed. And then not giving any suggestions for what to do or how to prevent it. Someone says they paid their kids to stay in range. It's funny. Now people are just agreeing, I'm gonna pay my kids this is the guys are adorable in here. Hold on. Someone then says they see a problem with paying their kids to stay in range. Laura comes back and speaks directly to Caitlin saying you should never have had to endure that. With all the other weights you had to bear deserve to be held, maybe cried over protected, valued and affirmed. You did not ask for this disease. after all. I so hope that things are better between you and your parents now. We all blow at his parents sometimes. And they definitely did for this one hugs and prayers. This, by the way, is a great Facebook page. You really should get into it if you're not. Marta says they never made a big deal of diabetes, they were never afraid of insulin. And her endo was the same. She said that was the good part, the bad part. They gave her too much freedom when taking care of her diabetes. She said as a team, she needed a system of checks and balances. And I have to echo this as well. I've now interviewed well over 400 people and many if not all of the type ones that I know who did not have good support from their parents, his children regret it and are sometimes suffering because of it as adults. Jeff says that at some point, you're going to need to hand over responsibility to your kid. But he doesn't know what that age is. But he thinks it's before 18 they should know how to bowls for their meals and adapt bazel settings. Jeff has had type one for 22 years. And he feels that knowledge is invaluable. Steffi comes in and says that she wants to add that she thinks children give hints to when they're ready. She said when she was seven, she decided to take care of herself. She had already learned everything she needs to know from being involved right from the start at her diagnosis. In 1983. At four years old, her parents still stayed involved. And Jeff remarks that you don't just dump it on them, you build them up to it, which is my plan. I'm just slowly filling Arden with knowledge that I don't even think she knows she has. Caroline says I was diagnosed Caroline, you wrote a lot. I was diagnosed at 16 months. And I have an identical twin and three other siblings who are all non diabetic, Lucky kids. I was not treated differently than any of them, which I know had to be extremely hard to balance. My mom had a friend who was type one who gave her some tips. One was to never say no to letting me eat if I was hungry. And she would have said yes to any of my other siblings if they asked. So a lot of times if my blood sugar was a little high, and I wanted to say a cookie, my mom would ask me to run up and down the steps for a while

or go outside and jump on the trampoline so forth. A lot of times she sent the twins with her. So I actually never picked up on the fact that it was a diabetes thing until I was in high school. And then she like offhandedly mentioned it she laughs where if she didn't ask me to exercise she'd allow me to have like one bite if I wasn't really hungry, and I just wanted to eat something because someone else was. She says side note. It really helped me to develop self control because I can literally just have one bite and be fine. It was also a very gradual transition of her handing over my responsibilities. However, I always knew what was going on. So I knew my shot, schedule, my amounts, adjustments and so forth before I did my shots. Likewise, I was always taught how to count carbs, and knew how many I was allowed to eat before I chose what I had. I was super involved in decisions about pumps, versus shots, and things like that. I honestly don't know if I have any bad things to say about my parents. And what they did regarding my type one. There were probably mistakes, but I don't remember any. Samantha was eight years old when she was diagnosed and as soon as she was ready her parents let her take the reins. She says I think I was self managing by 12. Did they help and support me? Yes. But her situation made it so that she had to express to her medical team when she needed help. She says there are going to be failures. Some of them you can foresee others you can't. But how else does one learn? She says I'm not saying hit the brakes completely. I was really mature, but take a step back give them a choice because their life and their type one diabetes, but not a type one diabetes life. I can really see how a lot of you found this podcast This is excellent. Alaina says My mother was a dietician my father a doctor, they did a really good job teaching me because the science behind the disease, so it wasn't just high BGS or bad for you. It was a Scott, it was a discussion about the small vessel damage and the eyes and the kidneys, and the effects of different carbohydrates and glycemic indexes and how insulin actually works. What was going on at a cellular level, during hypoglycemic episodes, etc. She said it made her view her body like a science experiment rather than a piece of broken equipment. And she learned at an early age how to experiment to find what worked for her. And 39 years later, she's still experimenting, studying and learning. Thank you for sharing that. That was excellent. Holly says, Go at your child's pace. She was diagnosed at two years old. She's 25 now and she has a baby on the way. Congratulations Holly. Holly Megan, a baby. Holly got her first pump when she was six. And while it was relatively new, it was up to her if she wanted one. She was completely sure, but they supported her decision. She said she was also a late kind of quote taking charge kinda kid. Her endo kept pushing her to do her own site changes. Holly adds here that she did not like herpes, endo. But the doctor wanted her to try so many different infusion sites to find something that she was comfortable putting on. I still hate doing shots on the random occasion that I have to, and she has to hype herself up to do them. We got the Dexcom. But I didn't want to wear it all the time. So we weren't for a week for so she worked for one week out of the month. Now she sees the Dexcom is such an invaluable tool. And she hates being without it. She wants you to know that burnout is real. And that at times your children will be dealing with this over their entire life possibly. So don't shove all the responsibility onto them too early. Try not to treat your kids differently because of diabetes. Let them do what they want to do sports, food etc. She says yes, there can be limits and you know measuring but don't tell your kid No. When you would tell a non diabetic Yes. If you have other kids get them involved. She says during her childhood, all three of her siblings gave her shots, slight changes, etc. She has a very vivid memory of her brother laying on the floor with her while they were waiting for their parents to get home. Because she had large ketones. Having diabetic friends made a big difference for her. When it came to emotionally handling diabetes in her teen years. It was rough. And she had a lot of unanswered emotional questions. She says I hit it more because I didn't want people to know that she says that's okay. being diagnosed is a physical learning experience, especially at a young age. But she says that the emotional side didn't hit her for a long time. And that that was harder in her opinion than the physical learning.

She had fears about the future rejection, she wondered why it was her who had diabetes. But she can happily say now as a grown mature person, that they will become more confident and be open. Susan's here with a more low carb idea. She says now you have a diabetic in the family. So the whole family changes. You can all eat differently, but those differences don't have to be made to be huge. She's not saying we can't have cake now because Johnny is diabetic. It's just you make where you order a different cake. You don't say we have we can't have spaghetti because Susie can't have pasta. You say zoodles and Pum Meeny noodles with meatballs for dinner. Just exactly as you would do if your child had a nut allergy. You know she says nobody would have peanut butter them. So she's suggesting to just make the changes don't advertise them or make her production over it. She thinks your child will thank you when they are healthy and strong as teens and adjusted adults who know how to eat well. In any restaurant situation, low carb protein packed 37 years ago, Susan says she was taught from her from day one. No more grains, fruits, sugars or starches. She's talking about all kinds of different foods here that you can use. She says if I came and cooked for you for a week, I seriously doubt you would even realize your carbs have been cut and I think This is an excellent time to point out that this Facebook group is completely inclusive, there are people in there that eat every carb you can imagine. And there are Susan, who doesn't. and everywhere in between. There's no judgement in this page. It is unlike any Facebook group I've ever seen in my life, incredibly supportive, tons of different ideas, really worth your time. Rick has lived with diabetes for 57 years, there are more options with the current technology. He says. What his parents did for him back then, back in the day, was to instill in him that he had to take responsibility for his diabetes management, they did not hover over him. They taught him that it was just diabetes, and that he could live with it. Well, it was not something that would limit him. And he couldn't use it as an excuse for failing to reach his full potential in life. They taught Rick that he could do anything he wanted. As long as he put this condition under his control. That's excellent recommend you step back. She says Don't be afraid as a parent to use injections and finger pokes. Even with all the new technology, not to say that they aren't great. But having the ability and confidence to use any management strategy for diabetes is the best way forward. She says she tests often, she listens to people who have had diabetes longer than she has. She likes to see how they've adapted over the years. Go with your child to appointments so that everyone in the house can be on the same page. self advocacy and confidence can be built up instead of dashed, when things aren't going right. Even in spite of you doing your best. continue learning and adapting, breathe and have faith. I want to again echo this statement that you do not want to be the person who looks up one day and says oh gosh, is this not how anybody does that anymore? You want to keep learning. But using basic tools are still very important. I think Arden's Contour. Next One meter is one of the greatest tools we have. But she also has the Dexcom g sex, these things are not mutually exclusive. Thank you stuffy. Nicki says that she believes that there's a fine line between you can do anything. And this disease doesn't make you different. But you can also acknowledge that you are a little different. And you have different needs, and that it's hard. She says more on the emotional side for her. Nikki was diagnosed at four. And it didn't really hit her until she was like 23 or 24. What the emotional burden of the disease would be. I hope as you're listening that you see that different people experienced diabetes in different ways. And that all of these remembrances and advice from people isn't going to fit you. But some of it will, some of its going to fit you perfectly. I'm glad you're listening. And I want to keep going.

Carrie says allow your children to still be children. She says she was diagnosed at six years old, and that the diagnosis made her grow up much faster than her peers. She needed support, but also to take responsibility for her care. Completely restricting certain foods can be detrimental for many reasons. I completely agree carry. diabetics are not allergic to carbs, we just have to figure out how foods affect our blood sugars, and how to utilize insulin. Also, what works for someone might not work great for you. And that's okay. It doesn't mean one thing is right and one thing is wrong. You will figure out It feels like I just said this and then I'm reading and carry saying and I will feel silly for saying it myself. Anyway, if you will figure out what works best for you and your type one. And that all being said, What works one day might not work well the next. Allow yourself and your child some grace, you will figure out what works best for you. And remember, there's no such thing as perfection. Do not fear food or carbs. insulins not the enemy, neither of the carbs, do not compare dosages to others. certain amount of insulin isn't good or bad. Someone taking lessons and then your child or more insulin than your child means zero. Your child will need as much as they need. And that's the right amount. There are a lot of smart people listening to this podcast. I'm excited. Hey, Tara says that it may be hard now you know the sleepless nights you're having and you know being careless towards your own health, but that it's temporary. And these moments will be over before you know it. She's right by the way. Your support right now means everything. She says she can look back at her childhood and think wow, look how much my parents did for me. They sacrificed so much for me. I have a different bond with my mother than I think I ever would have if I didn't have diabetes. And it looks like Tara made Lisa cry, West cry. And Chelsea tell us that she has to say that her bond with her son has grown. He's five. And now we laugh a lot more. And I feel differently towards him. And I think it's the same for him. Cheese, you guys are all sweet. West jumps in to say thanks to the original poster. Yes, thank you very much for this question. And for the great responses. Sitting here on the beach, watching his little type one play as my wife and I try not to ugly cry reading these responses. So good and grateful for this community. I am to us. Tiffany says my mom was a type one. And I think a lot of her mismanagement stems from parenting. I could be wrong, she says, but I just don't want to cause any additional issues. So I try to pick my words carefully. Regarding food eating, I try to be forgiving, and have grace. Because most the time the numbers aren't in his control. She's speaking about her son now. Anyway, my son is eight and I don't want to cause any adverse to food or anything. And she's scared that she will. I am a I'm a big believer in that not restricting food for people with type one. Diabetes is important because of this very idea. I also want to say kind of harkening back to Susan's comment. Susan is eating low carb, but she's doing an amazing job of cooking for it. It's not a restriction. It's a exchange. I think there's a difference there. And it's important to feel that difference. You know, I'm kind of rewarding some of these with people's thoughts. Because, you know, people write differently than they speak. But I'm just gonna read Jacqueline's. My mom never restricted me from anything. And let me be a team. She gave me a lot of freedom. And then she says, I never abused my medical condition or pushed it to its limits. And I really thank her for that today. 13 years later, as an adult, she also never treated me like a baby at home or in public. I feel bad because I was diagnosed in high school. I'm sure I wasn't a peach, she says, between the hormones and the diagnosis and my new way of life. Ross's parents allowed her to independently manage her diabetes. From day one, she was diagnosed at 16 years old. And it's all I ever wanted, I took care of myself, and I never about 24 years strong. She says good job, Ross. Heather wants you to know that therapy and or support groups for the whole family are available. Don't force therapy, but encouraging normalize it by talking about it as a tool for well being in diabetes management. If you do this, find a therapist for your kid, when they are a preteen or earlier. Or a diagnosis if they've already if they're or diagnosis if they're already a teen. If you can't look for one specializes in diabetes, try really hard to get them one who has diabetes, she has the diff for any reason the child wants to switch therapist, you should support that.

Here's the last one. Melanie said that her parents just sort of ignored diabetes. It wasn't until she was 18 and moved out that she started taking care of herself and figuring out our health. It's been a long health journey, she says. But I say that to say the fact you care so much is a huge thing. There is no perfect way to manage type one diabetes. But as a parent, the fact that you care speaks volumes. What I wish my parents would have done is just reassure me that I could still live a normal life, and that food isn't the enemy. I just have to handle it differently. But I still can enjoy all the things that I love. She had major fear wrapped around food, because she was just left to figure it out for herself. She says just being a support is huge.

I genuinely want to thank and for posting her original question. I've been watching this thread grow over days. And I just thought this would be a great episode of the podcast. I hope you agree. The last post in the thread is from Anne and it says thank you all so much for responding to this thread. For all of your wonderful advice. I do want my daughter to have good numbers because it's my job as a mom to keep her healthy. But I think I've been overlooking the mental aspect. Because I don't have type one diabetes. I recognize that I won't truly know what it feels like to be her. So your words are invaluable to me. I hope she grows into a person who has a healthy relationship with food and a desire to take good care of her body. Seek out. Good advice. Just like you all you guys. Anybody else want to cry? I'm a little misty Hold on a second. God dammit. Oh, Jesus Christ. Facebook group is great. I love this podcast. I hope you enjoyed all this. I'm gonna rerun my words about the D one D exchange here in case you skipped over him at the beginning. While we're all in the mood to help each other. This is a way for you to help people you're never going to meet that may actually come back and help you. Geez, I really am crying. This is terrible.

Unknown Speaker 30:37
Guys.

Scott Benner 30:39
I really love all you guys. This is really like, I never expected this when I started this podcast. I'm so grateful. Okay, all right. Hey, don't forget if you're enjoying the show, please share it with others. If you like what you heard here today, you probably really will love the private Facebook group. There's a link in the show notes to that. If you need any of the links there at Juicebox Podcast com Please support the sponsors, the sponsors allow me to keep making the show. I have to be honest with you, it is a Wednesday afternoon. I am a grown person and that I can afford to read the internet to you is is because of the sponsors I'm not gonna lie. I definitely could not put this kind of effort or time into the show if it wasn't ad supported. So you know support the sponsors support the show.

Unknown Speaker 31:29
Speaking of which,

Scott Benner 31:35
before we get started, I'd like to remind you about the T one D exchange. You can be heard and support the Type One Diabetes community while you help drive research that really matters for people living with type one. The T one D exchange registry is a research study designed to harness the power of individuals with Type One Diabetes. This is a nonprofit research organization that is dedicated

to accelerating therapies improving care for people living with Type One Diabetes. they translate real world experiences into real world solutions that make your life easier. The registry is a research study designed to gather real world evidence firsthand, easily and quickly. The questionnaire that you'll fill out can be done on your mobile device from the comfort of your home. And since Type One Diabetes is a chronic condition that people live with their entire lives, participants can complete the questionnaire annually to help researchers understand surviving and living with type one. This is an amazing thing you can do it is 100% HIPAA compliant, absolutely anonymous. And when you join the registry besides doing all of those things I've just listed, you end up supporting the podcast. So if you've ever wanted to support this podcast without actually spending money, this is a great way to do it and feel good about what you've done. I joined the registry. As the parent of a child with type one by the way, you have to be a US residents either have type one diabetes or be the parent or guardian of a child. I don't think it took me seven minutes to finish. It was really simple to do. T one d exchange.org. forward slash juicebox. In just a few months over 400 listeners of this podcast have added their voice to the T one D registry. I believe that what the T one D exchange is doing is valuable and heartfelt. And I'm genuinely proud to be telling you about it. I hope you can add your voice to the others.