#788 Bold Beginnings: Family

November 10, 2022Scott Benner

Bold Beginnings will answer the questions that most people have after a type 1 diabetes diagnosis.

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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 to episode 788 of the Juicebox Podcast.

Well, I know I said in one episode that we were done with the bold beginnings, but turns out I didn't see a page of the document. So we're back. Jenny and I are back today with a bold beginnings episode. Just for you. Today's topic is family. Jenny and I are going to have some kind of big conversations in the first 20 or so minutes. And then we get into the questions and statements from listeners just like you about what they wish they knew when they were first diagnosed with type one diabetes. While you're listening today, please remember 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 health care plan. We're becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please take a moment to fill out the survey AT T one D exchange.org. Forward slash juice box it will take you fewer than 10 minutes. You can do it right from your phone. You know like it doesn't I mean, it would take two SEC you could probably do it through seven traffic lights at a stop sign or one. You know, reasonable bowel movement something like that T one D exchange.org forward slash juice box take the survey. This show is sponsored today by the glucagon that my daughter carries. G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored by Omni pod makers of the Omni pod five and the Omni pod dash to get started today with Omni pod go to Omni pod.com forward slash juice box. It will take you but a few minutes to get everything going. And the next thing you know tubeless insulin pumping Omni pod.com forward slash juice box. Yes. I've never I mean I've only twice. Twice. Yeah, probably twice since I've had the podcast. Have I recorded an episode and then when it was over not had the episode. Like had like, oh,

Jennifer Smith, CDE 2:26
meaning you didn't post it? Or because it never recorded? Oh,

Scott Benner 2:30
yeah. Oh, no. One. So yeah. Once with with was with Donnie,

Jennifer Smith, CDE 2:36
oh, gosh, Danny, Hi, Danny told

Scott Benner 2:39
he told such a personal story. And then I had to contact him and be like, Look, we got to do this or do it again. Or you know, I would understand if you didn't want to and I felt bad. The other time was with Victor Garber. Wow. Yeah. That was something I had my voice and not his recorded. Oh, gosh, yeah. So I had to call him back and say, I'm so sorry. But you know, I messed this up. And at that time, it had never happened before. And he was so nice. He said, Well, I vote day off next week, we can just do it again. And while I'm filming a TV show, he was like, I could just do it again. Very

Jennifer Smith, CDE 3:18
well. I was gonna say gosh, with his schedule, although I don't know how active he is anymore. As an actor. I don't even know what he has done lately.

Scott Benner 3:28
I know what I seen him and I've seen him in recently. Orville on Hulu. Okay, it's like a look, we don't

Jennifer Smith, CDE 3:35
do a lot of, you know, oh, no, I mean, even new commercials, like, you know, friends will comment about this silly commercial for something or another. And I'll be like, I don't know. We don't really watch TV. We watch the amazing race. And if Lego masters we watch Lego masters. That's kind of the real TV that we watch. Because there's nothing real on anymore. That's like, like Seinfeld. Like that was a you have to dig around. Watch it.

Scott Benner 4:08
Yeah, you have to dig around. We I watched on Hulu recently, reboot. Sounds like a Hulu ad. It's not. And I enjoyed that. And Arden told me to watch the bear on Hulu. And I'm okay, two episodes into that. And that's been good so far. So anyway, my point is I'm recording.

Jennifer Smith, CDE 4:28
You can tell that we are being recorded.

Scott Benner 4:31
The only weird thing that's ever happened to you and I is that we once recorded the same episode twice. And I didn't realize it so I put them up together so people could hear the difference. The difference? Yeah, which one? Was that? Do you remember? I have to dig it up. It's like a defining episode. Okay. And but and it's, I don't know, 1520 minutes of defining a topic. And then we just did it again weeks later because I didn't check it off the list. And when I realized that I put them together and I said here, here's both of them so you can see where

Jennifer Smith, CDE 4:59
interesting Wonder what we added to one versus the other? Or what was the same? I'd have, that'd be interesting to figure

Scott Benner 5:05
it out. Oh, anyway, despite the fact that I told you we were done with the bowl beginning series, that was a lie. Because there's always more to add more topics here. So today, I'm gonna go over the feedback that we got from listeners of the podcast. And they said that family was an important part of a new diagnosis. Yes, so I agree. Yeah, I we don't live near our family. My mother doesn't drive. And you know, Arden was diagnosed a long time ago, when she was everyone was younger, my mom didn't drive so she could never get to us. And our extended family, like no one lived near us. But when Arden was diagnosed, my mother in law did say just tell me what I could do to help when you come home. And the only thing I could think of in the moment was like the house, like, go clean the house, go wash every piece of clothing, like try to get me I don't know, a Head Start or something like that, as I write back, I don't, I don't remember having an impact or not.

Jennifer Smith, CDE 6:15
It wasn't so much about helping in terms of actual diabetes, it was more the behind the scenes stuff that you know, was going to sort of fall to the sidelines, because you had something so new to focus on that there was a lot of learning involved, too. It's kind of something I actually tell to all of the women that I work with through pregnancy, is you may not want help with the baby. But you probably want your mom to maybe or dad or somebody else to come in and help you do some cooking, or plan or grocery shop or clean the toilets for you. It's like,

Scott Benner 6:55
well, well, I as I look back on that that story, I realized, I wouldn't have known what to ask for. I didn't know anything about diabetes, I couldn't have asked. I mean, if you brought me the two guys that invented insulin, and said here, ask him whatever you want to do. Like, I don't know what to ask them. I have no idea here, you know, right. So it is an interesting Well, that's a great idea, though. Just have somebody cover whatever you can. Yes, yeah. And to try to get you moving. Let's see what people said, though.

Jennifer Smith, CDE 7:25
I can I add something to that, too. I think what may go into that, especially if you have other kids in your home who don't have diabetes, if diabetes is entirely new to you, right? I think if you have somebody who can come in to help with some of those other things, making sure that the life of your other kids also doesn't get like scheduled differently. Yeah, right. Like, hey, you know, you're gonna be here for the next two weeks. That's awesome. These are the things that could be helpful. But I just want to make sure that Johnny is always still going to school at the same time that his lunch is always still getting packed that he's, you know, it's got game night on Friday night, right? While you're getting used to things that other person could be just contributing to keeping normal normal stuff there.

Scott Benner 8:20
We Arden was diagnosed on a family vacation. And it was the extended family vacation. So there were three or four families in this house at the beach. And I remember that feeling of like, we have to take our son to the hospital. But what do we do with Cole? Are we just abandoning him here, you know, and everybody was great about picking him up and keeping him moving? Right. I have to say to that, as much as I tend to believe that Ardens diabetes hasn't impacted coal that greatly. I don't think that's true. I just think it's probably in ways that he doesn't share that we don't know.

Jennifer Smith, CDE 8:59
Or he may not even realize know how, right he may not acknowledge or even consciously realize, because this is what was he four ish or five when he was diagnosed? When she was diagnosed?

Scott Benner 9:13
She was six and okay. And she was too. So they're four years

Jennifer Smith, CDE 9:17
apart, too. Okay. Yeah. But he was at that stage where he was young enough that his whole life has really been with a sister who has diabetes and this is just the way our family functions. Well, right.

Scott Benner 9:32
I even think now, you know, you know that my whole family Arden's at school, but my whole family got COVID We got it together. We did it as a family. And, and I, a couple days into it, Kelly asked me if I was okay. And I think I must have been acting strangely. And I said, I get very upset when Cole was sick. And I never really looked into it any deeper than that. But here's the rest of it because I think, gotta hope he doesn't get Diabetes. Like, you know what I mean? Like, a virus is here. And yeah, I'm always off kilter When coal is sick. And my point is he, he mean, he must think that too, right? Like, he must get sick of me. You know what I mean? Like, it's just gonna happen to me. Anyway,

Jennifer Smith, CDE 10:20
I wouldn't disagree with that. I mean, I have to say as, as often as it might seem to some people, when my kids are sick with a fever and some kind of virus, I do finger sticks. I mean, I just do, it's just my typical habit now. Because in the back of my head, that's always that's always the potential that's there as well. Yeah. And obviously, catching it sooner than later. And all those things that we know, is a good thing. But yeah, absolutely. When you've got autoimmune stuff in your family that you know about, it's probably something that just, that's where your brain goes, whether you want it to or not,

Scott Benner 11:03
even though most of the extended autoimmune stuff is on Kelly's side of the family, like there's celiac and things like that. I wonder sometimes, if I'm gonna get diabetes, like I interview so many people that get it in their 50s and their 60s, and you know, like, there are I think, is this gonna happen to me? Is this like, is this like, the, this is the end of the story about the guy that started the podcast about you don't I mean, somehow, a guy who doesn't have diabetes started a podcast about diabetes, it became really popular, and at the end, he gets it like, is he gonna be like, like I said, commenting for me, you know, anyway, I just think that that has to be the case. I mean, siblings who understand how it works, and are educated must worry about it. Having said that, the amount of people that I've interviewed who, whose children get type one, and tell me that their sister and their brother had it growing up, and I'm like, You were never worried about that right now. I didn't realize that could happen. So, you know, I don't know what people know. Right? Okay. So here's a little bit of feedback, balancing family life with other kids and making sure they aren't feeling left out or overwhelmed. And I think that's what we've been talking about here. But more contextually, you know what happens, right? You're, you're freaked out about high blood sugars, low blood sugars that somebody's going to pass out, you know, and you start hyper focusing on it. I realized, gosh, Arden must have been in middle school, when I recognize that when she would come in the door. I never once asked her how her day was or how she was. Yeah, I asked what her blood sugar was, because we didn't have monitoring back then. Right, you know, so as soon as CGM came up, I would orient myself with how her blood sugar's where she came home, and then consciously did not ask her about diabetes. But you do wonder how many times do you ask, how many times does another kid hear you asking? And how many times they realize that you haven't asked them about anything.

Jennifer Smith, CDE 13:10
And I think you bring in an important piece here is the technology that we have today. It's wonderful that we have the information that we have. And in a way for you, it kind of did almost what I would think is kind of like the opposite. Right? Now you've got the information C or S asking kind of less. But like when I was growing up, the information asked was only around a finger stick time. Yeah. And unless I complained that I was feeling weird or off or low or whatever. I mean, you never hear it's never right. I mean, that wasn't something who my dad was usually the first one home from from work, we got home, we were latchkey kids, if anybody even knows that term any longer. I don't even know if it's used. But I mean, my dad never asked like, oh, how are your blood sugar's today? It only got one finger stick a day at lunchtime, and that was like four hours ago.

Scott Benner 14:11
Yeah, no wonder. We were I mean, back then we were kind of caught in flux between some information, but not enough information. And I knew enough to be worried. I didn't know how to stop anything from going wrong. You know, right. i If you if this podcast existed 15 years ago, all you would have heard is a guy going I don't know what I'm doing. Excuse me, now I have to go cry in the bathroom. It was terrible. But okay, so how to create an empowered, less burdened cooperative relationship with your kid around diabetes, to not have super issues in the future? God, God, what do you think is I think about this all the time.

Jennifer Smith, CDE 14:57
So I think it differs According to the age of the child, I do you know the term like texting diabetes is very common with the middle school to high school, maybe some elementary school but more the like, older than about fifth grade kind of age. And I think in terms of strategy like that, that's great. As long as you're not becoming the helicoptering like, Do this, do this. I see this Why are you not react? You know what I mean? Make the interactions purposeful, the same thing I recommend if you're going to do a finger stick, make it a purposeful time to do the finger stick. Don't just like check 50 times a day because you think your CGM isn't accurate, right? But then for, for kids who are more the teen age where you want them to start learning more and more, to take on a little bit or understand a little bit more in terms of adjustment, I usually recommend families decide on a day, or like just a 30 minute time frame, just to sit down and that's your diabetes time. And in between that the management should be should be brought down a level that it's not the only thing that you're ever really discussing with them. Right.

Scott Benner 16:23
So I'm learning well artists to college every day. And you know, I've been passing Arden's care off to her slowly for years. And if you would have asked me two years ago, Scott, are you that involved Norton's diabetes? I would say no, not really. She takes care of it. But I overseas like I, meaning I pay attention to it. I come to her when I think there's an issue. What I didn't realize was different between her living here and her not living here is that if I texted her when she was in the house, and I was like, Hey, I think you should Bolus for this. And she disagreed. I could walk into her room, knock on the door and say, Come on, we really have to Bolus here, right. And so I was not controlled. Like I wasn't pulling the strings. But I could always jump in and grab the strings if I wanted to. Sure. Now that she's not here. There are no strings are there? No, no, there's no, there's no strings. And so not only do I not know what she's doing, right, I can only see through Nightscout I can only see, hey, she Bolus for 55 carbs here. So okay, she must be eating. i That's it. I don't know what she's eating. I don't know if she Pre-Bolus. Or if she put push the button and sat down late. I can't tell any of that. So one day, I sent her a text and I said, Hey, I don't I don't remember what I said do something. And she didn't do it. And time passed and time passed. And I texted her again. She completely ignored me. And then her blood sugar started to go down. And I texted her back. And I said in case you didn't get this. Don't do the thing I said now. And then she responded back. She said, I've seen all your texts. I disagreed with what you wanted to do. So I just didn't do it.

Jennifer Smith, CDE 18:12
See, she knew more because you probably didn't know the variables that she knew because she was right there in her own moment. Yes,

Scott Benner 18:19
yes. And so that I was proud of I was pissed. Asbestos, she didn't answer me on purpose. And I was proud. But I was proud of her that she she knew what was going on. And you know, we've been kind of going back and forth and doing that. And I found myself just only really contact here in what I would call either an emergent situation, or with something that she's clearly struggling with. Like I'll say, hey, look, this, whatever you're doing, I see you're trying it's not working. Here are three options that will make your blood sugar move. And then I don't I don't even tell her which one to pick. I'm just like, Here, try this trick. This trick or this trick, right last night. Last night, she she she was like, she got really aggressive about a meal. It was terrific. Actually she's like a 65 blood sugar like an hour and a half after she ate it was super stable. But I could see the loop taking insulin away and it wasn't making a difference. So I said to her look, just take one gummy bear. Just one, it'll turn you into like an ad. I was like, I don't want you to get into a position where you have to take too much. Because you haven't had Basal on so long your blood sugar is gonna fly up, then the algorithms gonna see the big number hit you again and you're gonna, you're gonna get low again, right? And she said, I don't need that. I know what I'm doing. I was like, okay, and then we ended up talking like, half an hour later about something that was about school related. And I said sure about the gummy bear thing. And she was I just took it you were right about that. And that was it. I was like cool. Yeah, good. So it's But all that aside The problem is, you've spent years thinking about stability, and thinking about stopping spikes and stopping lows. And I mean, in my mind, I guess everybody's mind you think it's, it's not going to change, they're just gonna get older. And you'll just keep doing this. And they'll learn more as you go. But it's not what happened. I mean, I don't know if it's what happens for some people, it is not what happened for me. Like she laughed, and she's like, I know how to do this fairly well. Right? I don't need his help. And he doesn't even know what I'm doing. I've gotten so many texts from her that just say, you don't know what's happening on this end.

Jennifer Smith, CDE 20:45
Right? Like, I'm okay. I'm taking care of it. If not, please tell me to do something else in an hour. Right. And I think while you probably feel like, you haven't really planned this point of transition, at least not the way that it's happening, right, you thought that you had done some things along the years. And a lot of that was probably, I'm sure, quite helpful. But I think as I work with people, I usually also say, to parents, even for kids who are at least five and older, as you are navigating an adjustment right now within like the diabetes strategy, if your child is their voice, your plan, even if you're not really just talking to them, in fact, if you're not talking, but they're close enough to hear you, you're verbalizing out loud what you're doing and how you're doing it, especially not in a very emotional way. Just a blood sugar is high. This is what we're gonna do. We're gonna watch it for this time. Eventually, they absorb that.

Scott Benner 21:50
Yes, no, I agree. I've done that. And I agree. And it's actually what I did in that story. I just told you by sending her three options, I was just sending her my thought process, right? Well, I guess we could do this. Or we could try this. Or we could try that. And I thought, well, she knows the variables. One of these options will make more sense to her than the other. The part about not being emotional that I was really cognitive cognizant of right away. Like, there have been plenty of times since she's left that I've wanted to text her and be like, Oh, my God, will you please Bolus? What I realized is that she's trying. And she's, it's not like, Oh, Dad, I'm trying it. She really is trying. And I thought how long it took me to learn how to do this. Like, why would I expect her to do it? So quickly, you know, just because I basically know what to do right now, doesn't mean she does, but she's gonna have to now, me we talked about in the Pro Tip series, so much like she is now has to have experiences over and over again, that teach her what to do. It's my job, not to apply my reality and my understanding of diabetes on top of her while she's trying to learn it. And that took a while to I mean, it took a while for me to be comfortable with I didn't do it like I didn't pressure but I didn't feel comfortable about it in the beginning.

Jennifer Smith, CDE 23:12
And I think as much as a caregiver, you know, yourself, or any of the other parents or, you know, people who are helping to navigate management for a kid or a teen or even a college student, I think there are things that you learn the way you do without having sort of a sense of it, the sense of, which is what it sounds like art is doing. And it's some thing that I also can't explain from my personal why I would do something versus just looking at data, I'm sure somebody else would tell me to do something completely different. It's a, it's a sixth sense, almost of navigating. You will learn it by how you how you feel in the moment, right? I feel this way. It looks like it's going this way. Like your brain spins quickly forward of I have this coming. I did this. I have to apply this strategy right now. And those are things that somebody could have been doing for you. But they were doing it without the internal sense of feeling and feelings. Not really the right word. But you do you develop this like, additional sense.

Scott Benner 24:24
You have a shorthand with your own diabetes. Yeah, yeah. Well, I've been there was a time where she was she treated a low in a class. And it she did it, she grabbed it, but it was not coming up. It was still like in the 70s. And I sent her a text and I said do not walk home from class with your blood sugar like this. And she didn't answer me and I said I texted again and I said, you have to answer me. And she said, Okay. And that was it. Like just little like I've only jumped in where I'm like, I do not need something bad how Talking to her while she's walking through downtown. Where am I supposed to say that she goes to school? Chicago? And and Fargo, how about Fargo? She we were when we recorded together. I said where she was going to college because that don't tell these people where I'm going to college. I'm going to Chicago. Look for me there. So anyway, I've been I've been clear about that. But it's, it's your problem as a parent. Now, in this scenario, I have a kid who's actually trying, I don't know what I would do. Well, I guess I do know what I would do if she just wasn't paying attention to it. Because there were some times the first couple of weeks while she's trying to adapt to school, that she when she, when it was time for her to give something away out of her brain, she gave away diabetes. And she'd let her blood sugar sit like 180 200 for a few hours. And I was like, okay, like, she's got to go through all this, this is not going to kill her for a butcher to be 180 for a few hours. And then I would kind of at the end of the night. If we spoke like she'll show me something she was working on. I would just kind of say, Look, I know you're busy. And I know you're trying. But we can't stare at blood sugars like this for three hours, right? You know, so next time trying to do something about it. If you don't know what to do ask me. And that's it. But that I mean to this person's point about creating an empowered person. It's such a tight rope, right? Because if you push them too hard, they might not take care of themselves. If you don't push them hard enough, then the disease will get them. How the hell are you supposed to decide between bad and bad?

Jennifer Smith, CDE 26:48
And within that you're also navigating, managing just a child. Right? And all the things that you may need to counter just because they're a kid, right? And I know a lot of parents say, Well, I, you know, I feel bad scolding them for goodness, if they like kick the cat, and it was totally unnecessary. That has nothing to do with diabetes, you need to punish that. Clearly don't feel bad just because they have diabetes. I mean, it's a but it is, as you said, it's like a tight line to walk to no kid treatment versus manage the diabetes piece.

Scott Benner 27:33
Right? No, it's, you know, it's that feeling of I mean, I've raised two kids into, I mean, I guess they're adults now. And then there's moments when you're like, What do I have to do here to make sure that we're all together and happy and love each other for as long as we can? Versus versus I don't want them to? Like, what do I also do to make sure that they don't try heroin when they're ninth grade? You don't even like? Yeah, in your mind, I don't listen, this might just be me. But in my mind, there's straight ahead, which I don't think we're going to get to. And there's way off to the left and way off to the right. And, and I'm just trying to keep everybody moving forward as best as I can. Yes. I mean, I don't know what everyone else's goals are. But around diabetes. I don't want my kid dying before me. I can't handle that. That's my goal. Right? And around regular parenting. I don't want my kids to be at goals. That's a simple, I really don't, I don't want Yes. And I want them to be able to take care of themselves, and to have fulfilling lives. And you know, every time you say something, it's hard to imagine, but everything you do everything you say every time you walk through a room, it's cumulative. And with diabetes, it's all sped up. Because you could very easily push somebody away or maybe they want to be pushed away. Who knows. I don't know this is depressing. How to handle big events like birthdays, weddings, having a baby going to a sleepover so this is how do you get your family to help you with these things?

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Jennifer Smith, CDE 31:45
It's not? And I think it's not because there still is. There are so many tunnels to go to here. I think one it's not because many family members still don't truly understand. Type one management. And they have a very naive understanding of diabetes management in general. Yeah, they do. So, you know, I I'm quite sure if I got together with my family more often, somebody would still knowing that I was coming plan some kind of sugar free dessert. Yeah. Thinking that they were being so kind and whatever or you know. And while that can be nice that you were thought of, in a way, it also doesn't make much sense knowing what you know. Right? Right. So I think in terms of family education, who are your four, you're really close people in a family that you would be doing the most with, for big celebrations, holiday events, birthdays, and those types of things. And, you know, just if they're willing to listen to, this is how we navigate again, a simplified kind of form. But don't worry about bringing sugar free cookies, or don't worry about doing this, this or this, if I want you to bring something different or special, or we're following a specific type of you know, eating plan, then great, you could do this. But otherwise, just bring whatever you're going to bring. And don't worry about it. Because we've got it.

Scott Benner 33:35
It's tough too. Because if you tell somebody treat me normally, and you're talking about like, I don't know, your sexual, like, don't treat them differently, treat them normally. That's great. Except then later, if I dropped them off at your house, they're running around in circles in the backyard forever, I would like you to pay attention to their blood sugar, right? So

Jennifer Smith, CDE 33:52
I think there are different, that's a very good like side point to make. Because if you if you were going to rely on family, for some type of babysitting, or watching or whatnot, you'd have a different set of guidelines or information that you would want to go over with them. Yeah. These are the things to pay attention to, obviously, you know, versus like a birthday where there 40 People there, you're there as well. So, you know, I think they're different

Scott Benner 34:25
when when we would leave art in with somebody, we just basically set up. I don't no checkpoints, test your blood sugar here, tested here. You know, if you're going to do a meal, we're going to test first if you're unsure about how much insulin you could go ahead and call us. Like that kind of stuff. I mean, I have to admit diabetes did dig into my my adult life as you know, as we were growing up, we didn't go out as much as we I think we would have afforded didn't have one, stuff like that. We also ran into the point where the problem where there was a A person in our family that for years, I would imagine would right now bring Arden, if Arden was low, they'd bring them her bag, like for insulin, and if she was high, they'd bring them sugar, they always had it backwards. And never, never really never sunk in. So Right. I

Jennifer Smith, CDE 35:21
mean, that's, you know, again, if you're going to choose, don't expect to educate your whole family, you know, all your secondary cousins and who whatnot, about how to navigate, especially if you would never leave your child with them for an overnight, right? Pick the people that you definitely have as your go to, because they have watched your children or your child already. And you would like them to continue to be able to do it from a comfort level on in two places, right? Your comfort in knowing they can do it, and their comfort and feeling like everything's gonna be okay, if I kind of a decision matrix of do this for this, do this for this, cover it this way. But again, don't feel like you have to educate all 200 people in your family. One of the people who are really going to be the go to people,

Scott Benner 36:14
I think you could save yourself a lot of heartache that way too. Because the mean, the truth is, is that everybody can't understand everything about diabetes or everything, but you're just gonna be I mean, you see it online, a lot people get upset. A comedian made a joke. It's not funny, he doesn't understand my life. Like I get that, like, you know, you know, somebody asks me if I can eat this thing over and over again, like, I mean, just kind of get, listen, everybody can do whatever they want. In my mind, I just gave it away. I was like, I don't expect these people to understand. They have, by the way, those people have problems that I don't understand. Correct, you know, and they're not mad at me for not understanding their you know, I don't know their rubella.

Jennifer Smith, CDE 36:59
I would hope not. There are good vaccination out there. That's part of the MMR vaccination. Maybe they've been I don't know, in the I don't know, some country. I don't know,

Scott Benner 37:14
I reached back too far from my joke. I thought to myself, like, did I just go back to the Old West? What happened there? But you know, I just I don't expect them to understand everything about me. They don't expect me to understand everything about them the diabetes, like, omnipresent your life that it gets irritating, and I get it, but at the same time. There's something more because I have another thing, no, go ahead. This person said, Have everyone in your household participate from early on, gave peace of mind that they will be able to take care of the child? If you're ever this is like this is household This is brothers, sisters, husband, anybody lives life house? Yeah, yeah.

Jennifer Smith, CDE 37:55
Yeah, it's, it's, I think it's a very good point to make. Especially considering that I know, a lot of families have one of the parents who really heads up the management, I would say that it's less of the families at least that I've had the opportunity to work with less of the families who have both parents really on with each other, and how they navigate. And some parents have a really good strategy of as long as the glucose numbers stay within this range, we share some strategies that we know will 99% of the time, they will always work regardless of whether they're with, you know, this person or this, this adult or this adult. And some parents have some strategies that they find work when the child is with them. And the other parent has other things that they have figured out. And it works with them. And I think that's okay, that's okay, that there isn't always 100% of this. If this then this. Because when one parent or caregiver is with the child, there may be variables that the one who's looking at the data like you and Arden Yeah, that they don't know is happening. So one is navigating this way. And the other ones like why are you doing that? You gotta have some give and take there while also having some definitive management strategies that you're both enacting.

Scott Benner 39:28
We started off with trying to do it together, like literally and then one day we were like, This doesn't work for us. Like we're, my wife and I both have like, strong personalities. And we'd get into situations where we were like, it's milk and I'd be like, it's juice. And then we were just like, while Arden was plummeting, we'd be we'd be arguing about what was gonna save her life. You know what I mean? And, you know, a sidebar Jenny I, I, I impart as Kelly out because of how Brighton and I'm sure she was of herself. And I'll tell you 25 years later, I don't know if that's a thing I would look for anymore. One time in my life, I'd like someone to look up to me and go, Oh, is that what you think? Okay? It hasn't happened yet. I'm keep waiting. But but the spirit of back and forth just didn't belong in that scenario. So we just said, Look, you're at home, I'm at home with her during the day anyway, just keep it with you. Doesn't mean Kelly doesn't know how to do it. But to your point, when she is doing it when Kellyanne Arden are by themselves, especially when she was younger, I had to learn to stay out of it for the exact reason you said because I don't know what the hell they're doing. And they're clearly not doing what I would do. And then you just you fall right back into the argument again? Yeah,

Jennifer Smith, CDE 40:45
exactly. But I think it also, I mean, for those who are listening, who may have divided families, you know, there might be divorce or something in the picture, I think the really important thing is, as much as you don't want to be together in life, you have to find a management strategy that you're both going to stick with, from one house to the other. Because it makes it really difficult as you're navigating all the teaching that you did with Arden. Kelly was doing some of that as well, when they were together in a different way. But it wasn't, it wasn't a negative to her overall management. Well, fortunately, right? Unfortunately, some parents really have the whole, like, we're aiming for this, like Target Range, and we're doing it this way. And there are all these strategies in the picture and the other parent may just be sort of flippant about

Scott Benner 41:41
it. And I've seen a lot of we have a number of episodes about divorced families because of that, because of just what you said that I've seen people send their kids somewhere for a weekend and the kids blood sugar's 400. all weekend long, right? And then there's no one. It's not even that they're not trying, there's no understanding of it at all. Correct, you know, so yes, that's makes it

Jennifer Smith, CDE 42:01
and that's again, even if you're not thinking about it from think about it from the child's need, right? Even if you don't agree with each other. You have this beautiful little person that's depending on you, or their health, right. So put all of your irritation. And just do it for the kid.

Scott Benner 42:24
Important it is well speaking of marriage, this person said this person said our honest to goodness, healthy marriage was bent every which way as we juggled sleep deprivation, math on MDI, guilt concern while trying to also communicate with different levels of knowledge about diabetes, she says that me with me with loved experience and him with little to no knowledge or lived experience. Experience. Yeah. And so it sounds like it sounds like the the, the wife parent, yeah, understood diabetes, the husband didn't. Some days, we still disagree. But we've come to a point where we have a unified approach. I mean, that's I read that it's basically what we just talked about. But But there it is, it's honestly got feedback from somebody who's gone through it, it is going to happen, I don't care. I mean, I don't care how good your marriage is, like this, having a chronically ill child is it's immediate, and it's frightening. And nobody just drifts through it. Like, hey, this was easy, I get you're not gonna listen to diabetes feels that easy to you might not be paying attention to it. So like, it's, it's not that easy. This person said, we let our kids do everything. And so this is interesting, because they said it's their body and so much is out of their control. We've been careful to let them be involved and put their curiosity to use and helping them feel a sense of autonomy over diabetes, of course, in age appropriate ways, and being careful not to burden them, dad, and I do everything, but we give them choices along the way. And have them learn the names of their devices and the steps that we take. It's helped ease anxiety about site changes, and they honestly feel proud and accomplished when they can show people their stuff and talk about it. It normalize that for them. It's also been a great opportunity for us as parents to teach emotional mental health awareness about the consent an age appropriate way. So that's really terrific. That's

Jennifer Smith, CDE 44:26
fabulous. Absolutely. I think, you know, another one in that when this person says we let the kids do everything. Absolutely. I mean, there are so little, there's such a little, I guess, number of things that you can do, despite having diabetes, that really anything out there as a potential possibility. And one of the big things that's always you know, the question, in terms of everything is is food, right? We just let them make their choices and You know, navigate around them. And I think because there's there's a lack of nutrition education anyway, growing up, I think that kind of ends up turning into when we let them do anything. But along the way, there are teaching moments within that to say, if we do this, this is what could be the picture, we could have much more focus and navigation that we have to do. Versus if we do something this way. It might be a little cleaner, it might be a little easier or whatever. So

Scott Benner 45:32
yeah, I as hard as growing up. The only thing I ever was, I don't want to say insistent about because she didn't. She wasn't resistant to it. But when CGM showed up, I was like, we were doing this. This is, you know, you know, and Kelly's like, what if she doesn't like it? I was like, I don't

Jennifer Smith, CDE 45:48
I don't care.

Scott Benner 45:52
Yeah, that was one of my mom, like parenting moms. I, you know, I used to say it on the podcast more frequently. But I don't get letting four year olds make medical decisions. I'm the I mean, I understand autonomy and everything like that. But you know, like, if your kid got an illness, they had to take three pills for it. And they and they said, I don't want these would you go oh, they didn't want them. So yeah. No, you would not. Yeah, that's not how this works. Like. But that doesn't negate anything that this person said, you, you should be striving for everything that they said.

Jennifer Smith, CDE 46:23
Absolutely. That's a great post. Absolutely. Your

Scott Benner 46:28
last one, my son was diagnosed just before his 50th birthday, and wanted to do everything himself. I thought this was great. And that that and that that showed signs of like super independence. But now I think this was a mistake. It may work for some kids, but not for us. And so it looks like actually there might be two more things. But sticking to that one for a second. There's a difference between Arden saying that I've got it. And she's actually trying. And her saying that I've got it and then she's ignoring it. So, you know, it's, and that's tough, because you want to believe that from your kids, I would, I would point people into the podcasts on this one. You want to really understand this, listen to conversations over and over again with 2526 29 year old people who were diagnosed in their teens. Right? So the parents were involved for a little bit. And then it seemed like they were old enough. So they said, Oh, that's okay, now you take care of it. Every person looking back with hindsight says I told my mom I had it. And I did not have it. I didn't know ya know what I was doing right? And then I went off to college, and then really didn't pay attention to it for four years. Now. I'm standing here five years after my college educated degrees over telling you, I wish my mom and dad would have stayed involved. Because I was foolish, and I wasn't doing so well. You know,

Jennifer Smith, CDE 47:53
I think today is easier. Again, technology here is a huge pro in the fact that as long as the teen. And I think under the age of 18. Still, as a parent, you're you're the decision maker. You just are. And the kid says Well, I don't want you to follow me anymore. Too bad. Yeah, you're gonna be followed.

Scott Benner 48:12
I'm so sorry. Yeah,

Jennifer Smith, CDE 48:13
I pay for this, I pay for that I, you know, so sorry. But I think some of that, again, leads into how you navigate the discussion of, if you're doing these things, I'll be off your back, which is what a teen wants. It's not that they don't want you to care. It's that they don't want the constant hovering, that diabetes can bring into the picture. From a parental standpoint, right? You want to be involved, you want to be able to tell them more about what to do and how to do it and whatever. Because you think you know more. I think it only is when you need to step in only when you can really tell that they're just they're just not doing yet. They're not following the steps that you put down. You must do this, you must do this, you must do this, and I'll be off your back.

Scott Benner 49:02
This is not too bad. So Arden had a situation a couple weeks into college, Arden doesn't drink and her roommates get drunk, and they come home and she feels very parental towards them because they're not in control themselves. So she's like, trying to help them. They're vomiting. She's disgusted by the whole thing anyway, like, I wish you could see oh, yeah, chain back and forth where art is like, I do not understand why people drink like, you know, she's like, I'm really This isn't me, I don't get this. I don't want them to get hurt. And so, you know, again, what happened overnight while this was going on, she let her blood sugar go up. She stopped paying attention to herself. And not in that moment, but later and I let a lot of time pass. I got her on the phone one day I said hey, we have some things we have to talk about. There was some school stuff. There was some stuff about money and how other things and I said and here's the last thing, here's the order. It's you. You You were first and when I They say you, I mean your blood sugar. Okay? That comes first, then everything else comes after that we don't give away our health for somebody else. Never, ever, ever. And, and I said, None of this matters Arden, if you go off to college and learn how to do this thing and become really great at it, but along the way, start accepting that your blood sugar can be 225 in the afternoon or overnight. So it's not going to matter. Because that's it, your your health is going to be destroyed, you're going to know how to do something and then be fighting with poor health your whole life instead, this this is first. And that that is a place where I stepped in and made that point, she also knows. And I want to say you can't just start making these, like pronouncements out of nowhere. You've got a parent like this the whole way they know this is the expectation like she had absolutely, she had a roommate that kind of, I don't want to say alright, there was a person who kind of wasn't handling being away at college well, and Arden said to me, I know if I acted like this, you would drive down here and get me. And I'd be living in my room and going to the college up the street from the house. And I was like, Yeah, but that was sure he knew that because of expectations set up before. I didn't just send her off into the world acting like an idiot. And then one day tell her act, right. You don't I mean, like it's

Jennifer Smith, CDE 51:21
right. Yeah, I mean, it's just as simple as like the setting of a curfew, you're not following through with, I come home at 11 o'clock, because my parents told me that the time I had to be home, I can guarantee that transitions over into your diabetes management. Yeah, you're probably also not following those 123 steps that are must dues in terms of your management that your parents have set out for you. In order for them to not text you 62

Scott Benner 51:47
There's the last one, we'll do it quick. Because there's it's a long thing this person says this is one of the top things that comes out later from families that I meet when they're talking about issues. It generally is that one parent or caregiver does not learn anything to the point where they can alleviate the need to help the main caregiver. And for initial training and pump training. Emphasis really needs to be on all caregivers attending. So it sounds like I hate to say what it sounds like it sounds like boys don't pay as close attention as girls, when they act like oh, you're gonna take care of it. Listen, I don't care if it's 2022 or not. I know men, this is what she's saying. You don't have to say anything to me, there is a higher there is a higher rate of divorce with families with chronic conditions. And this is a huge this is one of the huge ways that leads to complete burnout for one person. So I'm going to tell you that after Arden was diagnosed, however, many years ago, the endocrinologist pulled us aside and said, Listen, rate of divorce goes up when you have a chronically ill child. And then she pointed at me and said he's not going to and started like he she didn't know me.

Jennifer Smith, CDE 52:58
She was and you're like, hey, here's the stay at home dad,

Scott Benner 53:01
wait a minute, my wife laughed, and she said, Listen, if one of us is gonna leave over this, it might be me, not him. You don't know him, you know. But listen, whoever you are, in the scenario, don't care what's your, you know, if you're male or female, or whatever, it doesn't matter, like, but there is going to be some person in your relationship. Who gives that like, I don't know, you do it thing. And that's this person saying, if you get caught in that over and over again, eventually, it's going to be a landslide, you're gonna get knocked over. And you're gonna look up and say, nobody's helping me, especially this person here who I expected to be helping me because we said that there was part rich or poor, you know what I mean? And now something happened. And you're, you're out, you know, so

Jennifer Smith, CDE 53:43
which also makes it harder. As I said earlier, it makes it harder if it does end up in a break in the marriage, and one person has been the Navigator. And the other one, which potentially contributed to at least some of that break. Is doesn't know anything. So then where are you left in terms of now the child having time with both parents, which is necessary from a child standpoint, but not from a health standpoint? That other one still doesn't know enough to manage? Well, yeah. And that's unfortunate.

Scott Benner 54:17
Do you see this? I mean, the idea of there's more divorce? I mean, do you meet with a lot of divorce people?

Jennifer Smith, CDE 54:25
I have never met I have to say I've never met with any family that has separated or divorced while I've been working with them with relevance to not all but some inclusion of the diabetes piece of it. I have met with people who've already been divorced. And I know the definite difference in management. Some families they do have an astounding job. Despite being separated and child one week is one place one week is another place but they The data doesn't change enough to reflect one being more hyper vigilant than the other, like, you know, being out for the counter. But I have a couple of families that certainly that's the case where one parent is definitely on top of everything. And then when the kid goes to the other parent, it's almost the complete opposite. It's almost especially for the teens, where that other parent just feels like well, they're old enough clearly, they can get themselves dressed, they can make themselves food, they can shower, they can get on the bus, they can do their homework. Clearly they've got this. Why would I have to step in?

Scott Benner 55:37
Well, yeah, because diabetes is difficult and their kids is the answer. So Correct. Well, Jenny, I really appreciate you doing this with me. Thank you so much.

You know, if you like Jenny, she works at a place called Integrated diabetes, and you can find her at integrated diabetes.com. She is for hire, if you need help with your type one. I want to thank today's sponsors on the pod and remind you to get yourself in on the pod five or an omni pod dash at Omni pod.com forward slash Juicebox. Podcast huge thank you to one of today's sponsors, DJI voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUCAGO en n.com Ford slash juice box. Thank you so much for listening. If you're enjoying the podcast, please take the time to share it with someone who you think might also enjoy it. Show them how to find a podcast app, how to download it, how to subscribe and follow and where to get the episodes that you think will help them most. Thank you so much for listening. It means it means a lot to me. You have no idea actually. Let's IT support the sponsors. Come back next week. Download old episodes, find the Facebook group Juicebox Podcast type one diabetes. That's all for now. I'll be back very soon with another episode of The Juicebox Podcast.