Scott Benner 12/9/24 Scott Benner 12/9/24

#1377 Heading to College with Type 1 - Caregiving

Part two of a three part series on going to college with type 1 diabetes.

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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.

This is part two of our heading off to college series with Andrea on today's episode, we'll be focusing on what caregivers need to understand about the relationship between the college and the student and how much can be shared with the parent, that and much more in today's episode, 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? Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juicebox, and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juice box. It should not take you more than about 10 minutes. If you're looking for community around type one diabetes, check out the Juicebox Podcast. Private Facebook group Juicebox Podcast, type one diabetes. This episode of The Juicebox Podcast is sponsored by cozy Earth. Use the offer code Juicebox at checkout at cozy earth.com and you will save 40% off of your entire order. This episode of The Juicebox Podcast is sponsored by touched by type one. This is my favorite diabetes organization, and I'm just asking you to check them out at touch by type one.org, on Facebook and Instagram. Today's episode is sponsored by Medtronic diabetes, a company that's bringing together caregivers and parents of children with type one. Later in this episode, I'll be speaking with Sarah, Mom of Jackson, who's an active 10 year old boy with type one. Sarah is married with two children and a recruiter at a law firm. Thanks to Medtronic Sarah and her family found the support of the Medtronic caregiver community valuable in their journey. Hey Andrea, welcome back. Thanks for doing this with me.

Unknown Speaker 2:25
Hey Scott,

Andrea Lafleche 2:26
no problem. I love being here.

Scott Benner 2:27
Cool. So in the first episode, we talked a lot about accommodations. That was actually a really great conversation about accommodations. But today we're going to pivot a little bit. What do you

Unknown Speaker 2:37
want to talk about

Andrea Lafleche 2:38
today? Sure I want to talk about now. I titled this for caregivers, but definitely important for students as well. A little more about some general laws or things that schools have to abide by that will help you give some more context when you're dealing with institutions or professionals. And then talk about some suggestions, really from me and my experiences of, you know, supporting your students and how to help them advocate for themselves and work with the institution, since that role is really on them. Now, they're they're 18, or they're a college student, regardless of their age, and these things are kind of on them. Now,

Scott Benner 3:15
can't you just do what I did and say, you know, if you want to go to school and me support this. You'll let me come to this meeting. Or can I you could?

Andrea Lafleche 3:25
I don't know how great that is for your relationship. I guess every every parent and their students relationship is different, so that might, that might be something, and I'm sure your student might want you there, but once they're fully a student and they're on their own there, we're not calling you, right? Your student might call you and be like, can you talk to Andrea in Student Conduct? And I'm going to answer the phone and say, Do you have a FERPA waiver signed? Oh, they don't. The student needs to come in. Or they told me I can't talk to you about that. You need to talk to them. So

Scott Benner 3:55
you've had to say that to a parent. You've had to say, Oh, you want to know about this. Your student told me not to tell you about this. Is that true? Has that happened? I mean,

Andrea Lafleche 4:06
I haven't said it like that, but basically, yes, like your student told me to the student told their parents, and the parents called me, and I'm like, well, there's no FERPA waiver on file, so I can't I can't call, I can't talk to you. You need to have them sign that

Scott Benner 4:20
you were polite. I see I got you

Andrea Lafleche 4:23
some I'll say some of us, some of us are like, no FERPA. I try very hard to speak in generalities, because I can and talk about, this is our general process. If something like that were to happen, this is what would happen, or this is the general direction, or the general outcomes of something like that, especially if I was talking about student conduct, but never would I get into a student's file of any kind unless I had that that signature from them saying that they can I can talk to their parent, which is why I generally suggest that parents and caregivers support their students. By talking to them and supporting them in having those conversations on their own, or finding the information and supporting them being their own advocate. Excellent. But for those that don't know what FERPA is, if they didn't hear our little spiel in the first episode, FERPA is the Family Educational Rights and Privacy Act. Some people call it the HIPAA of higher education. Similar vein, your parents will be used to this from their child's high school or middle school, elementary school, where they do have access right to their students files. That changes once a student goes to college, whether they're 18 or not, the student then becomes the eligible student, and all the rights of FERPA transfer from the parent to the student. Okay, by

Scott Benner 5:50
the way, you just said, even if I'm like, somehow I get into college early. I'm like, 17 and a half, I'm in college. That's it, correct. Okay,

Andrea Lafleche 5:58
okay, age does not matter at this point.

Scott Benner 6:01
So if I find myself on the phone yelling at somebody going, I pay for this. You can tell me what they're great, that kind of thing. It doesn't matter. Correct.

Andrea Lafleche 6:07
Gotcha Correct? Correct. Now, student, the student, can give consent for information to be shared, but they can decide who and what information. So a lot of schools in like, the financial aid portal might have, like, a section where this you can say yes, like, you can talk to my parent about the bill check signed good to go just because they say yes, you can tell my parent about financial aid or the bill that I have that's not giving the right to everyone, right? So if they end up in a conduct situation or something's going on in housing that form doesn't apply to the other areas of school, they will have to give consent to that office to talk about that situation. And they can be as broad with their consent, or as narrow they can say, yes, you can talk about this situation that happened on this day, today with my parent. And once today is over, the consent is revoked, right? And that consent can be revoked at any time. So just because they did it once doesn't mean that it's forever, which is something we run into as well when parents are calling so something to think about. Pretty interesting. Actually, there are some exceptions. So if somebody does a deep dive or goes and Googles and goes on the government website, they might see that there are exceptions to FERPA in emergencies related to drugs and alcohol if a student's under 21 however, that's at the discretion of the school. It's not mandated that the school says during these incidents, here's the information you need. It's more of a you have the option. So I've worked at a variety of institutions. Some were very much like FERPA, everything is under it. It does not matter if it could be an exception, we're not going to do that. And some are like no part of our process is if somebody violates the drug policy or the alcohol policy under 21 we'll call the parents, we'll notify them that this happened, give them that information, because we are able and move on. So if you have multiple children going off to college, you could have different experiences with FERPA at your schools. Okay? Because it's a you can, not a you must, right?

Scott Benner 8:10
I understand. So you might get the Hey, Mrs. Jones, it's Andrea. Come get your heroin addict. We don't want her here anymore. Yes, in other places, your kid could be have done something illegal, been arrested on campus, and no one's going to tell you or have any reason why they need to. This episode is sponsored by Medtronic diabetes, and this is Sarah. Sports

Speaker 1 8:30
are his life. He was nine years old. He was just starting to develop his own personality and his own passions and his own independence, and instantly we were afraid that that was going to be taken away. It was a very scary time for me. I would say probably the first couple weekends, there was a lot of fear about what happens if I go low. Obviously, now that we're on Medtronic technology, what we do managing his diabetes during athletics, has changed drastically. The Medtronic technology that we are using has almost eliminated the fear I have while my child is playing.

Scott Benner 9:04
As far as community goes, have you met other people with diabetes? What's some good advice you've gotten from them?

Speaker 1 9:09
I have met so many people with diabetes. This summer, I had the opportunity to meet others that are using electronic technology, and I feel like we have built such a strong connection because we speak the same language, we don't even have to say what we're going through. I have good friends that are Medtronic mamas that I can reach out to that have been incredibly helpful, and then our Medtronic rep has been phenomenal

Scott Benner 9:37
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Andrea Lafleche 10:57
So just some things to know. If you are gonna call the school and ask questions, depending on what's going on and their kind of stance on it, you're going to get potentially a different experience. Can

Scott Benner 11:06
I ask a question that's not going to be specific for like, the people listening? Don't apply this to your situation. This is just me. I'm interested. Yeah. Do you think professionals that do what you do, like, I know that's the law, so that's what we do, but do you think they wish that wasn't the law. I mean, my, I guess my question is, is, don't 1819, 20 year old kids still need their parents sometimes, or is that not the case? Like, what's your finding? Seriously? Like, personally, sure,

Andrea Lafleche 11:30
I think it's so hard and it's so nuanced, because I would like to think that the majority of college students have a good relationship with their parents, and that they can go to them that they made a mistake now they have to deal with the consequences, and then that's not going to blow up their whole life. But we know that, unfortunately, that's not true. I kind of can see both sides. I appreciated when I worked at a school, and specifically when I was doing conduct that I if I was able to talk to a parent about, like, a drug or alcohol thing. I think for the majority of students, I don't want them to get to a place where they're on the cusp of being expelled and their parents have no idea. I think that's more hurtful for them. But I think sometimes too where we are now, right? I've seen a lot of different parents styles as I've been in higher education, right? As I said bulldozer earlier. That's kind of the era we're in. I had probably more what we termed helicopter parents, a little less of that, as I was earlier in my career. So it was like a different conversation. But for me, and the reason I got into higher education is like providing a space where students can learn outside the classroom as well, right? They're really in this environment with other their peers. They're doing things outside of education, outside of like academic education, and they're able to make mistakes and do these things and learn from them. And I think sometimes, unfortunately, we're in an era where parents want to fix

Scott Benner 12:59
a lot of things for their child, not let things unfold and grow, right? And

Andrea Lafleche 13:05
not Yeah. So I think there's definitely some situations where, like, if I'm able to notify in an emergency, I definitely want to, I would ideally be like to be able to do that as one of the exceptions. But in general, it's another tool. We kind of have to work with the student to help them learn how to take accountability and to own up to their actions for themselves at the school and with their their parents or caregivers, because they have to be able to gain those skills of like, yeah, I screwed up. How do I how do I go about owning that with my family?

Scott Benner 13:36
I would imagine, too that there's some like, if you grew up in a good situation, you wouldn't know this, but there are probably some parents that are holding their kids back too, right? Like, it's not, like, Leave It to Beaver. Everything's not all great. These people, these kids, are finally at school, and they're like, Oh, I'm safe. I'm good. Like, I don't have this happen anymore. I don't have a drunk person yelling in my ear all the time or whatever. Then you go reintroduce them to I got you. Okay? All right, I'm sorry. I appreciate knowing that. Thank

Andrea Lafleche 13:58
you. No, that's great. The other thing that I want everyone to know about, students, parents, caregivers, is the Clery Act. Have you ever heard of this? Scott, no, no. Okay, it's a law. Comes from Jane Cleary. I'm remembering correctly. She was a student at La Fauci in Pennsylvania. I won't get too much into the history, but basically, because of her death on campus, there has been a law and some requirements around that law, including an annual safety report and annual fire report that schools must put out every year that goes through a litany of basically what kind of incidents, what things are happening on and near campus, putting together report and the data. There's a lot of different nuances to it, but every school is required to post this on their website. So if you're concerned about maybe a location, your student is looking at a school going to or you're like, oh, that seems like it could be dangerous or not really sure what's going on there. You can just search it in their website. It'll pop up. The reason I bring this up is not necessarily. For those incidents, but more for this is going to provide you all the emergency procedures that a school has, okay, right? So you can get a better understanding if you're nervous, what happens if there's an emergency on campus? Where might they take my child if they have maybe a low blood sugar? It's going to list all of the hospitals in the area. It's going to give you a lot of information that you might find beneficial. As you're looking at schools, right? Instead of doing a Google search, you can just look at this report, and it'll give you a lot of information about, again, emergency procedures, hospitals, emergency phone numbers. So if you're like, shoot like, Who do I need to call if I'm worried about my child not responding to my texts in the middle of night because their Dexcom says they're low, right? You can already have that information ahead of time, yeah, so you're not feeling like you have to search for it. I think it's a great tool not many people know about that can give you information about the campus that you're considering or the campus that your child has decided that they want to go to. I looked

Scott Benner 15:58
it up real quickly, so they published an annual security report. Schools must publish an annual report detailing campus security policies, safety procedures, crime statistics for the previous three years, which includes crimes like assault, theft, sexual assault and hate crimes. They have to do emergency notifications in a timely fashion. They're required to issue timely warnings about crimes that pose a serious or ongoing threat to the students and the staff, they have to post the crime statistics. It mandates that schools collect, maintain and report accurate crime statistics, categorized by location, on or off campus, public property around the around the campus. Rights and resources for cases involving sexual assault. The Clery Act requires schools to provide resources and outline rights for victims, including counseling and information on reporting options and disciplinary procedures. And the Act specifically specifies that geographic area for which the college must report the crime stats, which includes on campus buildings. This is why, when my son was first in college, we were told that there was like a it's gonna sound crazy, but like a freight train that stops near the campus, and it was known to be involved in human trafficking, like that train line, and that we were made aware of that. And I was like, why would someone just that's such a random thing? It felt like for somebody to tell me, but that's this. They didn't tell me. If they wanted to, they had to. Oh, cool, pretty much, yeah, I got it, yeah.

Andrea Lafleche 17:17
So yes, you can get a great picture of kind of what's happening, like you said, crime stats for the last three years, but then all of this information about procedures we get, in my experience for the last two years, with the link talking to caregivers, they're very concerned about, you know, emergency procedures. What would happen? Who do I call? So this is a easy thing to find, because it has to be so public that outlines all of that for you, instead of trying to kind of piecemeal things together yourself, highly suggest checking this out. Okay. All right. Thank you. Yeah. All right. So let we kind of dove into FERPA. So I want to talk a little bit about what I think, and this is me, personally and my experience, some things that could be helpful to help your student get the support they need, since you can only get so far as a parent now, now that they're off to college, you can only get so far. We can only say so much to you. And really you're not you're not physically there, right? And it's just a good skill for young adults to have to be able to advocate for themselves in a variety of situations, figure out who the best person is to talk to. So while it might be really tempting to pick up the phone and call me about whatever's going on, whether that's a roommate situation, a conduct situation, their accommodations, I really want you to think about what is a different way that you could support your student. And you know your students best, but things that come to my mind is asking them if they want support finding the best person, right? If they're at a large school, maybe they're not connected yet, because they're a first year student and they're just like, overwhelmed with, who would I even talk to about this issue with? See if they want support from you finding out who that person is, right? Help them do a web search. Or if they're like, Yes, can you please just find the person that I need to talk to do that piece and be like, I think this person makes the most sense, and just get them connected to one person as a student affairs professional. While we all have our niches, I worked in these specific areas. I'm going to be very connected to the other professionals on my campus. I'm going to have knowledge of the other resources, the other offices. So if you find me, for example, and Arden comes to me and is like, I'm having this issue. Hey, Arden, I can't personally help you with this, but let me get you connected to my friend Kelly. She works in this office, and I know that she will be able to help you with this concern. And most likely, I'm going to bring you to that that office. I'm going to connect you via email, whatever is most comfortable for that student, but one of the ways that you can help them, instead of picking up that phone, is just helping them find the information. Maybe they are worried about not saying the right thing or explaining the issue correctly, or they're really not sure what to say. Maybe it's more of Do you want to run through this conversation? Do you want to write down some talking points? And I know for me when I'm nervous or I'm going into a conversation that might be uncomfortable, even now, as a professional, I'm going to write down my talking points, like, that's something that helps me. Maybe that's going to help your student. Maybe they will feel more comfortable if you kind of brainstorm what questions might be asked, or like, what information is important about the situation to share with the campus professional, and they'll feel more comfortable going into the conversation that way.

Scott Benner 20:26
We just had this at home. Arden needed information from, uh, from an office at school. She texted me. She goes, I do not know who to reach out for this, so I said, Okay, so I figured out who it was, and I said, it's this phone number, this email address, this person. I sent it to her, and I didn't hear back from her. But then the other day, she said, I emailed that lady, and I haven't heard back from her. And I said, Well, maybe you should call her, because younger people are very afraid of the phone. By the way, a lot of people, not just younger people. I don't know what it's happened to all of you, you know. So I said, Well, if you want a faster answer, you should call. And she goes, now I'm gonna email again. I said, Okay. I said, go ahead and do that. But that whole process, because we're not rushing, it's the thing we're doing for the future, doesn't feel like, oh, we have to know right now. And it does teach her, like she just sit down and compose the email she had to see that people don't always respond right away and reach so she's having a learning experience and and the thing that we need done is still going to get accomplished, you know, just right? Yeah. And

Andrea Lafleche 21:23
I think these are all the things about going to college, that's the learning outside the classroom. And if we're trying to do it for them, they're not going to have that experience for when they eventually have to do it in their future job, or they're not going to feel as confident and giving them those options, right? Like, maybe I didn't know that, like, I could call them, right? Or maybe the phone number isn't available, right? Schools put out information in different ways, depending on who's logging into their system. You might need to be a student to get access to that phone number, just giving the option, like, oh, you could call them, or have you thought about going to the office, right? So maybe they call, they didn't get a response. They left a voicemail. They didn't get a response. Okay? Like, what do you want your next step to be? You could try these things again, or you could go to the office, or, let's see if there's another person that we can get you in touch with, right? And just helping them kind of think through it instead of doing it for them, is so valuable in that moment, and I think down the road as well, right, for getting them on that road of independence. Very nice.

Scott Benner 22:22
Okay, listen, I agree. It's the unintended consequence. I mean, you brought it up for a reason, so you must see it all the time, right? But it's the unintended consequence of like, what you described, like parenting right now sometimes leans more towards, I'll take care of it, we'll fix this, that kind of thing. And you're stopping the kids from having these problem solving experiences. And I get it because you You also could get run over, because every look, if everybody else's mom is out there fixing it, and your mom's not fixing it, it's possible they're getting ahead of you because of that. And I get the pressure behind that. But you know, to me, it's like preschool. If no one sent their kid to preschool. None of us would have to send our kid to preschool. It's the first one of you that was like, I want my kid to know how to count on day one at kindergarten. You messed it up for all of us. I hope you're happy. But you know what I'm saying? It's good. Yeah, I like it.

Andrea Lafleche 23:12
And they're, I would say they're only going to get ahead for so long, though, oh yeah, it's

Scott Benner 23:15
gonna, it's gonna fall backwards on them at some point, because they're gonna get into a real adult situation where you're not although I know this is probably apropos of almost nothing, but my wife once interviewed a person in a job interview, like a person in their 2324 year old range. My wife asked some sort of question during the course of the conversation, like sitting in her office having this conversation, the person says, Oh, I don't know the answer to that. And my wife was about to go, that's fine, you know, like, I'm, you know, it's fine. She goes, my mom knows, though, I can go ask her. And my wife goes, your mom is here. And she goes, yeah, she's downstairs waiting for me. And my wife, like, picked up the paper and wrote no in the corner and then continued politely to have the conversation. She brought her mom to her job interview.

Andrea Lafleche 23:59
Oh, I'm not surprised. Yeah, that's, that's a big thing that's happening these days. I

Scott Benner 24:03
can't believe you're not surprised. That's, that's fascinating. Anyway, yeah, that's crazy, absolutely the craziest thing I've ever heard, apparently, not the craziest thing you've ever heard. But go ahead. Move definitely not move forward, please. Yeah, I

Andrea Lafleche 24:16
think in the same vein, talking about boundaries with your student, your student hopefully talking to you about them before, but I also believe that they probably won't. Is important, right? And doing that as you're I mean, the sooner, the better. But let's just say you're at the college search process. We're starting that now, maybe start talking about them while you're doing the search, right? And because I think that they they relate as well to all the things we've talked about before, right? You're thinking about, what does the mail system look like? What does getting you medication look like? And so these conversations about, not necessarily innocuous things, but these lesser stress potentially things as you're doing the search can. Help facilitate this boundary conversation of like, okay, so it seems like the mail would work for us to get you your insulin. Like, do you still want me to order it? Or do you want to tell me you need it and then order it? Or do you just want me to take care of it? Right? And, like, bringing up boundaries in these small, maybe bite sized, very situational things. If this is not typically something that you're having conversations about, or you don't feel particularly confident in using these as opportunities to kind of build that into the conversation and get better and better at it, so that when you're like, Oh, it's this, do we have three months until you're leaving? Okay, maybe we need some of these bigger conversations about what does contacting you when your blood sugar is low look like? If that feels like the big, scary conversation to have? Oh,

Scott Benner 25:47
I think if you and I don't do an entire episode about what to do in that situation, we'll be letting people down. I think that's all that people are worried about. To be perfect. What happens if my kids drunk and has diabetes, and if their blood sugar is low and they're sleeping and they won't wake up. I bet you, that's most of their concerns. So definitely,

Andrea Lafleche 26:03
yeah, yeah, we can definitely hit on that a little bit in a second. But think about how can you weave boundaries into these little conversations? Again, if it's not your typical go to, like, if you're that's not something you're currently doing with your child, how do we make it easier and kind of set, figure out the little the little boundaries, if you will, to help get to the bigger ones, and know that they might change, right? And know like as like they're supposed to as your child grows and gains more independence, and you kind of trust more that they've got this but use the little things you're talking about as they're searching to have those conversations, I think is a great place to start and maybe even testing some of those things out, right? So if we're talking about sharing or not sharing, I will completely admit sharing was not a thing when I was in college. CGM were barely a thing. So this is not something I have personal experience with, but comes up often. So does your student want something different than what's currently happening while they're in high school? Do you use their senior year or even their junior year? Like, let's test out how that goes as a trial period when you're still kind of in your same routine, have the same supports that you're used to. Does it go well, okay? Like, let's consider implementing that. Did it not go well? Why didn't go well? What can we adjust to hopefully get to where they want to be eventually, so that everyone is safe and everybody feels as confident as they can sending their student off to college? Yeah,

Scott Benner 27:31
very nice. Oh, that's a lot to think about, isn't there?

Andrea Lafleche 27:34
There really is.

Scott Benner 27:36
Most of it hinges on pre planning, though it really does. Like, as you're talking, I keep thinking like, if you're a person who's like, I'll cross that bridge when we come to it, you're going to come to a lot of bridges that are washed out. But if you plan ahead, you're going to find ways around that miles before you ever get to it. And it's nice, because how would you know otherwise? Really, you know what I mean. Andrea, like, if you're not here talking about and I don't have experience that I'm sharing in house. Anyone who's the first time are gonna know to ask about stuff like this, or wonder about these things, or like, the littlest ideas that, like, you know, I'll bring up some other things that I you know, as they fit in the conversation, but there's things I've learned along the way I never would have imagined. So

Andrea Lafleche 28:16
even for those, like, for first generation college student completely like, where do you even start? But even as a parent that's gone to college before, you probably didn't go with diabetes one, and even if you did, when I just realized this, when I went to college, I pretty sure I couldn't even get accommodations under the ADA because they hadn't changed what was considered disability until 2008 so maybe my senior year. I guess I could have tried, but diabetes and stuff wasn't really covered under the ADA the same way that it is now. So you're still even with experience. Things are so different now that you're kind of starting you're starting over in a way, like just because you had the experience doesn't mean it's the same or that you're thinking about the same things that your child with diabetes needs to think about.

Scott Benner 29:07
In hindsight, would you have been better off with those accommodations?

Andrea Lafleche 29:10
I think so, and I'm definitely a person that's like, diabetes doesn't stop me. I will do whatever I want with it, in a way, right? But looking back, there was never a time that I was, like, super low and couldn't take an exam, but I can definitely see that. I think I would have done better academically if I had had the ability to have some of these accommodations. Do you think

Scott Benner 29:32
it would have just lifted a weight, like, is there like a din of noise at the back of your head that goes away when you know you're safe in these situations, so even if they're not a problem, you're not worried about them.

Andrea Lafleche 29:42
Yeah, I think definitely not having to think about like, if I was going low and I actually remember a time. And luckily, I'm the type of person everybody knows. I have diabetes, my pump sites, my Dexcom. Like I wear them wherever I want. I don't care if they're showing. Entire like, that's just me as a person. I'm very comfortable talking about it to anybody and everybody. Like, ask me the question, whatever, I'm here to talk about it. So my professors knew, my friends knew. But I remember being in an American Sign Language class, and we were in the final and luckily, my TA was my friend, because we had a substitute professor that day, and I remember sitting watching the professor sign, and we had to, like, write what she was saying, or, like, interpret it, or whatever. And I'm like, why can't I, like, I don't understand what she's signing at all. And it was, like, super basic, like, I know this stuff, right? And this was pre CGM, so nothing's alerting me that I'm going low. And it finally clicked on, like, Oh, I think my blood sugar is low. So I was able to get the attention of my TA and like, I'm like, I'm going low. I need to, like, have a snack, whatever. And so luckily, she was able to explain, and like, everybody was super accommodating to me in the moment of, like, I took care of it, I came back, finished the exam, and then she, like, re signed the stuff that I had missed, and it was fine. No big deal. But I can't imagine, like, what that experience would be like if it was a much larger classroom, right? Like, there's only maybe 15 of us in there. We all knew each other very well because of the type of class it was. But if that happened in my econ 101, 300 purse lecture hall. They're not most likely like, I don't know the professor that well, especially if I never needed to go to office hours or whatever. So I could definitely see it potentially hindering me in the moment. But knowing, like, the amount of time that maybe my blood sugar was high, my blood sugar was low, and I couldn't focus on whatever I was studying, or those types of things. It would have been nice to kind of have that, that backup plan, if you will, official backup plan,

Scott Benner 31:51
because I can see people hearing this and coming at it from both ways. Like, you know, diabetes, like, there's plenty. Listen if you want to watch an argument online, go ask about getting in line sooner at a theme park, if you have diabetes, you'll get large group of people will come in and argue, half of them, I'm not disabled. This is you can do it, and they're gonna be somebody goes, Look, my blood sugar drops out. I don't know why. It just does. You know what I mean? Like, and they'll fight about this over and over. And a lot of people don't want to be called disabled. I understand that as well. Yeah. But having the the ability to just put a few things in place, I don't know they're, they're like, smoke detectors, like, I don't really expect my house is ever going to burn down, but if they do, I've got smoke detectors, and that makes me feel better, like that, that kind of, that's how I think about this. And if something does catch fire, then great, I'll know ahead of time. I'll have a plan, I'll get out, I'll be okay, and we'll deal with what happens next. That's just sort of how I think about this. Like I said, Martin's had a 504 plan throughout her schooling years. She had accommodations to the first school she went to, but I have to admit, when she switched schools, we didn't do any because we already knew how it all worked and everything and like, and she's like, I don't really need any of this. And we said, Okay, I said, even about testing and everything. And she said, let me try it without first. So I said, Okay, and now we're doing it that way, and then we're going to reassess at the end of semester and try to decide if she feels like she needs anything added in. I think she puts more time into creating conversations with teachers and letting people know where she's at so that if something happens, they can kind of deal with it like that. But I mean, that could backfire on at some point too. So I'm glad I did it. I don't think she won't do it again. But without it, I'm not scared anymore, I guess so, but that's comes with experience a little bit.

Andrea Lafleche 33:34
So yeah, it's all personal, because, again, we're all individuals. We all deal with our diabetes differently. We are coming into college with different comfortability, of like, navigating that transition, I'd say specifically with diabetes. So yeah, if you don't want to do them, we're not going to seek you out, right? That's the other thing. Like, right? I might even see somebody with a Dexcom V I'm not going to be like, hey, Debbie in Disability Services. Can you please contact this student, like June? Like, No, nobody's No, I cannot, right, right, so nobody's going to reach out to you about that. But, like you said, like, it's good to have the just in case, just in case.

Scott Benner 34:13
I wish she did it again the next time, but, and I think she might in the future, just things were kind of rushed, and I guess it brings up the point that we weren't able to pre plan that gotten it got in the way. But I'll tell you right now, one of the things that it caused an issue with immediately is she went into housing. It kind of had suites, and then the suites had bedrooms, but the bedrooms were private, and so the minute the door closes, it's locked from the inside, so no one can get and you need her card to get into the room. So that's it. Arden's locked in a concrete box at night when she's sleeping. And I'm like, what do we do about that? Exactly, you know what I mean, like, if there's a real problem. And then you come to the realization that if I don't have something in place, the only thing I'm going to do about it is call 911, it's the only option I have. So, you know. That I wish we would have thought through a little clear. But anyway, good. Is there anything else on this piece? No,

Andrea Lafleche 35:05
I think, I think that's kind of, you know, it's teach their own but, yeah, excellent. Since you brought up the concrete box that nobody can get into, that kind of brings up what you said everybody's nervous about, which is their child going low and nobody able, like, who's helping them. Yeah, right. And that's definitely a concern. I think you've talked in previous podcasts and different things, kind of what you've done previously with roommates, and then you suggest, you know, telling, at least tell the roommate, and at least let them know what glucagon is or what to do, type situation. And I think that's great. I, for a variety of reasons, always suggest if a student can not be in a single at least their first year, don't put them in a single. Don't give them a single, not even diabetes wise, just like growth and meeting people and community, highly suggest roommates, they'll figure it out. I promise. Right,

Scott Benner 35:58
right. Yeah, not feeling alone is a big deal when you go away to college. It really is. If you get stuck with like a crackpot, then that's a little more difficult. But like, you know, generally speaking, we

Andrea Lafleche 36:09
will help you with that, right? We don't want you to have a bad roommate situation. And I would also from, again, my work experience, not always the best. If you're going to school and you have a friend from high school going with you not always the best to room with them either. I will almost guarantee there's a there's a likelihood you will no longer be friends after, after rooming together.

Scott Benner 36:30
You know, what I've seen a lot is one of them wanted to be roommates, but the other one didn't have the heart to say no, and then it builds like resentment. So anyway, good yeah. Good point,

Andrea Lafleche 36:39
yeah. So highly suggest just get a random roommate, or, like, a lot of times now you can, like, there's almost call them like, matching services, right? You're putting in information, and the school is kind of matching you as someone that makes sense based on routine and major and different things like that. Cool, but if it doesn't work out, they will help you just talk to the staff. That's why we exist, is to make sure that things are going well, right? But if there is an emergency concern, you look like you have a question, Scott,

Scott Benner 37:05
you made me just think we could be rich. Andrea, why are we not starting an app like housing, Tinder, or something like that? Because

Andrea Lafleche 37:11
it already exists. Oh, okay, not necessarily an app, but the systems exist.

Scott Benner 37:16
Oh, it has to be like, What a great because I'm going to my son who went into college as an athlete, and so he knew all the guys that were coming in that year to play the sport. They got into a group chat. They learned about each other, and then very naturally, they started kind of quietly picking each other and then splitting off and having different conversations. And I remember my son came in one day and he said, Hey, I'm in a room with this guy my freshman year, and he said we have very similar interests. And he went over a number of different things, and he's like, even we, like, think similarly politically, he goes so like, he's like, I think this all works. And I was like, I was like, go for it. But then that was the example, too, that there were two young guys. They both knew they were the right ones, but not one of them would like, do the thing. So it's like, just text him and say that and see what he and he texts back and goes, Oh, I was thinking the same thing, but I didn't know what to say. So they both were thinking the same thing. Neither of them spoke up that boys, you know what I mean,

Andrea Lafleche 38:11
general, it's vote it's a vulnerable thing to be like, Hey, I feel like we're a good fit. Yeah, because what if they're like, No, no way. Like, you know? So it seems easy, but it's not, because then you're either with this person or you have to see them, and you have this awkward conversation too.

Scott Benner 38:28
Oh, I remember you. You wanted to room with me, and I don't like you at all.

Andrea Lafleche 38:32
I think you're crazy. Yeah, great. Orientation is a good time to do that, because typically orientation is happening potentially before you're putting in your housing stuff. Again, every school is different how they're doing this, but yeah, just a personal thing. Try not to room with a friend. You think it's going to work, and I can almost guarantee it probably won't. Yeah, so hey, yes,

Scott Benner 38:54
from my experience with two, only two kids in the end, if you either are or aren't a drinker or drug user. Do not match yourself up with the opposite person. It is not going to go well, right? Greg, just like birds of a feather in that situation really makes things go easier, from what I've seen Anyway, yes, yes, no, I agree. Andrew, while we're talking about the things that people worry about that aren't really on your list. There's a statistic you've been out of the game for a while now, though, but about half of college students will try drugs while at college, and about half won't. That's an interesting statistic, because I bet if you ask people, they wouldn't think that it's a coin flip. Have you ever heard about those stats? Or No,

Andrea Lafleche 39:37
I haven't, actually. But I'm not surprised. Okay, not a lot of things surprise me, especially when it comes to college students. That seems legit. I guess my question about the stat is, are they including marijuana, or are they excluding that from the drug category?

Scott Benner 39:56
She's like, wait, they don't all smoke weed. I don't know. Well,

Andrea Lafleche 40:01
I would assume they're including marijuana, which makes that a very believable statistic to me. They could be not and I would still believe it. Well,

Scott Benner 40:09
yeah, I mean, not to be scary, but like, cocaine is pretty popular right now, right? You still in the game? Do you? No, I don't mean like, are you doing it? I mean, have, I meant through your professional endeavors? Have you heard because you said you were involved, you're involved you're involved in student discipline issues.

Andrea Lafleche 40:23
I was yes, I'm

Scott Benner 40:25
sorry. I'm laughing because she looked at me like, are you What do you want me to tell people?

Andrea Lafleche 40:31
Yeah. I mean, I've been out of, as you say, the game, for probably a year and a half now. I did some contract stuff. I would say it depends on where you are, what your drug of choice that's going to be popular is one marijuana across the board. I mean, it's legal in many places now, so that is going to be on basically every college campus. And I will say for those young adults that are listening to this, if it's legal in the state, it's still not allowed on campus, because campus is governed by federal law when it comes to this. So none of those campuses are going to be like, Yeah, cool. You can have marijuana if you're of age, like you can have alcohol. They're not going to most likely, in my experience, if your foul, if you are documented for having marijuana on campus or using marijuana on campus, most likely this was going to treat it like you're underage drinking, in my experience, but you still can't have it. If something

Scott Benner 41:24
gets legal, you're not covered just because, like, it's legal in Jersey, like, and you're in Jersey, right, correct. I found the data, by the way, it said, Okay, great. A significant number of college students initiate drug use during college years. According to the Substance Abuse and Mental Health Services Administration, approximately 1326 full time college students. Ages 18 to 22 start using an illicit drug on an average day. And then it says this statistic does include marijuana use, so Okay, also it includes alcohol. But it's funny because and it says, to a lesser extent, other illicit drugs. But crazy as it sounds, I find that to be an uplifting statistic, like, it means if you send your kid off to school, you have a 5050, chance of this not becoming their lifestyle. And I think everyone thinks that's what's going to happen to their kids when they go away.

Andrea Lafleche 42:12
Interesting, yeah. I mean, this is very anti, I would say anecdotal, potentially, maybe there's studies on it. Also, I lived this in a way like, I think those students that are going to college that are very sheltered or that this is not something we talk about at home, this is not something that you can experience. It's like taboo. No, no, no, no, no no. This is awful, are potentially more likely be like, Oh, look at all this freedom I have. I want to try everything. Yeah, and those that not that the parents or caregivers are giving them permission to go drink underage or use drugs, but that it's not a taboo, and I will give from my own personal experience. I think also for me, the diabetes played into like, I don't know what that's going to do with this. And like, I don't want to f up my life.

Scott Benner 43:02
I don't want to be double unconscious later tonight. Yeah, yeah,

Andrea Lafleche 43:05
right. So, like, that was a me thing. But like, I also grew up in a way that, like, when I was 16, my grandmother was like, Oh, you're 16. Like, do you want to try a watered down cocktail? Like, right, sure, no problem. You don't mean it wasn't like this. Like, no, you can't like, This is

Unknown Speaker 43:21
bad. No.

Scott Benner 43:22
I mean, from my perspective, I fully agree with you. I think when you pen kids up, not just kids anybody, when you pen somebody up too much and then release them, they are going to naturally wonder what it is they hadn't been seeing. And I, I'm with you on that, so okay, I hear you. I like

Unknown Speaker 43:38
it, yeah, yeah. I

Andrea Lafleche 43:39
think again, it's the nature of college, like you're going to try things. It to me, the more important part is, do you have the support, whether that's at school or at home or both, to learn from the experiences you decide to partake in, and have the resources to determine if it's a positive thing for you or a negative thing?

Scott Benner 43:59
Yeah, right. Because

Andrea Lafleche 44:00
anything, well, I would say there's probably no positive in cocaine use. I don't know, but doesn't seem I like

Scott Benner 44:06
that. You're not willing to say for sure. That's excellent. You're like, Listen, I don't know.

Andrea Lafleche 44:10
I don't know, not something I've partaken in, and I don't know how many studies there's been, so Right? There's all of these things about marijuana usage and alcohol and with anything chocolate, right? With anything, there's a spectrum of how you're using it, why you're using it, and how does it impact you? Is it impacting you negatively, or are you having a positive experience from it? And you're able to live your life like, who am I to judge what things, yeah, do to what people and how you use it, right? Like, there's a reason marijuana is being able to be legal across the country. There are positive things associated with using it in certain ways. Okay,

Scott Benner 44:50
I'm not into telling people what to do. I just assume that if you're an adult who drinks, you assume your kid's gonna go off to school and drink, and if you're from a household where nobody drinks. You think, oh, my kids aren't gonna drink because we don't drink. I just think it's nice for people to know, like, it's possible could be a coin flip. Yeah, you know. And at the same time, I sometimes I see people online. They're like, Look, I know my kid's gonna go off to school and drink, and I want to know how to manage that with diabetes. And I'm like, do you really know? Are you just worried they're going to like, I still want you to under like, because can you imagine if your kid had no reason to think about drinking, and you pulled them aside one day in a lovely mother son situation and were like, Here, here's the rules for drinking with diabetes. And the kid was like, I wasn't going to drink. You don't like, I don't know. It's a and at the same time, I see them needing to know, because coin flip is it might happen. So it's kind

Andrea Lafleche 45:37
of the same thing as the accommodations you want them to have the information in case they do make that decision, right? Because the likelihood is they're making that decision in the moment, not like pre planning. Oh, in two weeks, I'm going to go to this party, and I plan on getting smashed, right? So I'm going to do my research now and make a plan now. They're like, No, we went to the football game, and my friend offered me a beer, and I decided, You know what? I kind of want to try it today. Yeah,

Scott Benner 46:02
no. Same idea. Like, right? Like, Andrea looks nervous, and her friend gives her, you know, a joint. And the next thing, you know, I didn't, I wasn't planning on smoking weed today. Like, and here I am. I'm trying it. So I got you, I agree. Okay, I'm sorry. Are we done with this? Are we good? You like this? I like this? Excellent.

Andrea Lafleche 46:18
Yeah, I think maybe we'll save the We Can Do Not right now. But do you want me to plan to do a more deep dive of the low blood sugar thing? I think you're right that. Yeah,

Scott Benner 46:29
I think we should put one, just one together, just about that. Okay, okay, all right. Well, we'll leave people with that for now, so that they can expect that coming in the future.

Speaker 1 46:37
Okay, excellent. You. Sarah's

Scott Benner 46:45
story so genuinely encapsulates the experiences that so many caregivers go through on a daily basis. Our Juicebox community knows the importance of caregiver support so intimately, and Sarah's story is just a great example of what caregivers go through on a daily basis to learn more about the Medtronic champion community and to find helpful resources and tips for caregivers and families. Visit Medtronic diabetes.com/parents-caregivers cozy earth.com. Offer code juice box to check out, save 40% Listen to my words. You want to be comfortable, you want to look nice. You want to project an air of confidence about yourself. You can do this at cozy earth. You can also get yourself some lovely gifts for friends and loved ones without going broke. Touched by type one sponsored this episode of The Juicebox Podcast. Check them out at touched by type one.org on Instagram and Facebook. Give them a follow. Go check out what they're doing. They are helping people with type one diabetes in ways you just can't imagine. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe, whichever your app allows for, and set up those downloads so you never miss an episode, especially an apple podcast, go into your settings and choose, download all new episodes. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

#1376 Heading to College with Type 1 - Accommodations

Part one of a three part series on going to college with type 1 diabetes. Featuring Andrea Lafleche.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.

Today, I'm joined by Andrea. She has a specific set of skills that will help you understand sending your type one off to college. This is part one of her three part series. 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 health care plan or becoming bold with insulin. Are you an adult living with type one or the caregiver of someone who is and a US resident, if you are, I'd love it if you would go to T 1d exchange.org/juice box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d exchange.org/juice, box. It should not take you more than about 10 minutes. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com

Today's episode is sponsored by Medtronic diabetes, a company that's bringing together caregivers and parents of children with type one diabetes. Later in this episode, I'll be speaking with Stacey, a mom of a 12 year old daughter with type one. Her experience is an all too familiar one. After losing a lot of weight and drinking more water than was considered normal, Avery was diagnosed. Stacey and her family were suddenly thrown into managing diabetes without any medical background, and Stacey had a chronic condition of her own to manage the Medtronic champions community really supported them during this uncertain and overwhelming time. Thanks to Medtronic Stacy and Avery, found the support they needed us. Med is sponsoring this episode of The Juicebox Podcast, and we've been getting our diabetes supplies from us med for years. You can as well. Usmed.com/juice box, or call 888-721-1514, use the link or the number get your free benefits check and get started today with us. Med. This show is sponsored today by the glucagon that my daughter carries. G vo hypo pen. Find out more at gvoke, glucagon. Com, forward slash Juicebox. Hello,

Andrea Lafleche 2:43
everyone. My name is Andrea lafleche. I have had type one diabetes for 28 years, and have worked as a higher education professional for about 10 prior to my time currently as the program manager at the diabetes link. During my time in higher ed, I worked at a variety of institutions, mostly in residence, life, Student Conduct and Title Nine, and now I focus my time on supporting the diabetes link college student chapters, bringing new members into our network and around education involving having diabetes, going to college, being in college and transitioning out of college. Awesome.

Scott Benner 3:21
How long you've been at this? For a decade more?

Andrea Lafleche 3:24
Yeah. So I started my first career, if you will, back, I say, in grad school in 2010 because I had an assistantship where I worked almost full time while doing grad work in Residence Life, and then continued until I left full time higher ed work in December of 2022 to come over to the link to kind of combine my two life and passions, if you will, having diabetes. My sister also has diabetes. So it's a family thing. Working with college students or young adults. I really love that age group. So this is kind of a nice transition to do both the

Scott Benner 4:01
family business. That's interesting. Yes. So you have some thoughts to share with people, we're going to break them up into categories and make them into smaller episodes. So where do you want to start? I

Andrea Lafleche 4:11
would love to start with accommodations. I think that most people are nervous about them. It's, you know, a confusing thing, in a way, especially if you have a 504 or some sort of accommodations in high school. How do you transition that over to college? Because, you know, once college happens, students are no longer just students. They're adults to the college world, whether they're 18 or not, once they're enrolled, FERPA covers them. Us as professionals in higher ed, we're not really allowed to talk to parents without your student's permission, so the accommodation piece kind of is the most confusing and concerning for people. So I think we should start there.

Scott Benner 4:50
Okay, FERPA is Family Educational Rights and Privacy Act, yes,

Andrea Lafleche 4:54
okay, you kind of think about it a little bit kind of like HIPAA for higher education. Once a student either reaches 18 or attends an institution that's post secondary education no matter their age. So they can be 16, they can be 17, they become an eligible student, and their rights go under

Scott Benner 5:12
FERPA. Gotcha. So your kid cannot remember to take a vitamin and go to class at the same time, but they are in charge of everything else,

Andrea Lafleche 5:19
according to the government. Yes, perfect.

Scott Benner 5:22
I bring it up because I see how frustrated people become around that at times. I just worth mentioning. I understand it legally. I understand I mean, they're over 18, right? So, yep, yeah, okay, go ahead. Accommodations. Where does this begin? For me, my kids got type one diabetes. They're in high school still. I think they're going to go on to a college. When do I start thinking about this honestly

Andrea Lafleche 5:44
when you're starting the school search, a lot of this that I'll talk about is actually connected, I would say, to when you're thinking about and choosing a school, because accommodations under the ADA can vary between the schools, right? So an accommodation that would be approved has to be reasonable, it has to be necessary, and it has to be appropriate for the diagnosis or diagnoses that the student has now reasonable is going to be different based on each school okay, because of things like access to The funds to provide that accommodation the types of maybe building. So one example, some schools might be in a place where they have historic buildings, and those historic buildings

Scott Benner 6:30
are might not have an elevator, or something like that.

Andrea Lafleche 6:33
They might not have an elevator, they might not have a ramp, and they can't make any changes to that building because it is historical. So if, for example, your school, your student is in a wheelchair, they're not gonna have class in that building. So maybe the accommodation is to move the class to a different accessible building, but they're not gonna be able to put in a ramp, right? These are things to kind of think about as you're touring schools, what you need for your student, because not every accommodation is going to be able to be made in the way that it would at a different school.

Scott Benner 7:07
Just because your need is real doesn't mean they can meet it correct, not just because they don't want to. Right?

Andrea Lafleche 7:14
It has to be necessary, reasonable and appropriate, and the reasonableness comes down to the school in a lot of ways. Right? Is it reasonable for the school to do that, whether that's financially, the physical space that they're able to provide the student? So those are things to think about. While you're on campus, maybe touring or you're looking into schools, you can always go and talk to Disability Services. They may be called accommodation services at the institution before you're a student, and they can give you some general information, but these are things you want to think about prior to picking a school if you're able

Scott Benner 7:48
top of your mind something that you've seen that's not flexible, that applies to type one diabetes. Like, what have you seen them say, like, I need this and the school go, I can't do that.

Andrea Lafleche 7:59
I'm not sure with the and I have a list of kind of suggested things to think about. The only ones that would really potentially not be able to happen is really when it comes to housing. And not everybody asks for housing accommodations, especially in the sense of, like, single room versus whatever traditionally is given to students your first year, right? Typically, once you get up in age, you're picking your own room. But many of these that we kind of have a suggested to ask about, whether that's breaks during exams, minimally distracting environments, being able to use the restroom. The only thing is really, potentially, the housing and we'll get into like, why housing accommodations can get complicated. Definitely seen that firsthand. And then priority registration. That doesn't mean like, I'm a first year student and I get to go first above upperclassmen, but maybe priority in your class of students is if you're going into a program that's basically like pre selected and everybody's getting the same schedule right. So there really is no need for priority registration. But I think most of the accommodations that somebody with type one is going to be looking for should be accommodated in some way, because they're not really asking for a space to be changed or things of that nature. Yeah,

Scott Benner 9:20
we had a very unique thing, and I'll tell people how it worked out. So if you take insulin or Sulfonyl ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G vo hypo pen. My daughter carries G vo hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, jivo kypo pen can be administered in two simple steps. Even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use jivo kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gevok, glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin OMA, visit G VOQ, glucagon, com, slash, risk for safety information.

Speaker 1 10:36
Avery was diagnosed before Thanksgiving. I had scheduled what we hoped was my last surgery. They were making my colostomy permanent. We had scheduled the surgery when she was diagnosed. I was there the entire time. Her dad came up for one day of training. I was really the only one who could manage but I couldn't take care of her in the state that I currently was in. I never really took time to heal. I went right back into waking up every two hours to check her sugar. She was very inconsistent extreme lows and extreme highs. My mental health went downhill very quickly. Medtronic technology specifically gave us so much and took some of that burden. It allowed my mental health to truly start to get better. I was sleeping again. I was doing all the things I used to as was she What else did you find helpful? I became part of the Medtronic champion community. My daughter and I have gotten the opportunity to meet amazing people. My daughter now has friends all over the country that she communicates with. I now have people that I can truly just check in with, and I feel seen, and I feel understood, and I feel heard, I feel validated. I also just have friends that get it, having that camaraderie between children, but also between parents. It's wonderful. Once we were with Medtronic, it was like our world opened up.

Scott Benner 12:03
Visit Medtronic, diabetes.com/parents-caregivers, for more. Arden went to a school when she was a freshman, and the school was spread out across the city, basically, and you had to ride a bus to get from place to place. So we thought, God, is she gonna have to carry insulin with her all day, and an extra pump and everything, just in case. Because what if she's a bus ride away from, you know, we're in the middle of class, etc. So we asked the question, could we strategically put insulin in a couple of school buildings around the city and a couple of extra pumps so she'd never be too far from it if that happened, and because they were older buildings, they said, We don't have refrigeration like that, and we can't safeguard the insulin there. And so the question became, well, what do we do? And the school came back to us and said, Here's what we'll do. If Arden ever gets into a situation where she suddenly is without a working insulin pump, she can call this phone number. Campus Security will come pick her up and basically Uber her back to her building, wait for her to change her pump, and then take her back to class. We never did that like it never actually happened, but it was an example of how we worked around a limitation at the school anyway.

Andrea Lafleche 13:11
And that's an awesome example, Scott, because again, another thing to think about, what is the layout of your campus being across town? What does transportation look like? And I think that's a very, kind of very good compromise that the school came up with. Like, how can we work with this? We can't make sure that insulin is there, right? Like, you can't dedicate a staff person necessarily, if they even had refrigeration. But how can we mitigate the travel time, which is really, like, the issue, right? That was the issue you're dealing with. So how do we mitigate that campus safety, they're always available, perfect. It really reminded

Scott Benner 13:43
me of that experience when you were explaining all this. So okay, I'm sorry. I'm gonna let you jump into your no

Andrea Lafleche 13:48
no. This is good because you've had the lived experience of having that child go and kind of navigate this. I've been on somewhat of the other side, and this is why you want to think about these things when you're looking at your schools, what are some of these interesting situations that could come up, and how might we deal with them? And can we ask our school to kind of support us in dealing with those situations? This is also why we talk about registering as like as soon as you make the decision, start getting your stuff to or start before you decide because you need documentation from your providers. You know, even if you have a 504 in high school, that's not going to be taken as documentation that you need accommodations in college, you need actual letters and documentations from your provider about diabetes or any other diagnoses that you have that could require need accommodations and doing that process as soon as possible, especially if you're going to be asking for housing accommodations. And like you said, Arden never needed to use that accommodation, but you had it. And that's another important thing about why we always suggest students to register. They're not retroactive. So accommodations are not retroactive. So if I have midterms coming up. Yeah, and my blood sugar is 40 the morning that my exam is in 20 minutes, and I can't get there, and I don't have an accommodation for my diabetes. If I miss that exam, I miss that exam, I can't then go to my I mean, I can go to my professor, and they might be nice, but that's hit or miss, right? And it's not that they're not nice, it's they are teaching a class of 60 students, and,

Scott Benner 15:20
yeah, they can't accommodate your problem, right, right?

Andrea Lafleche 15:24
They can't make an exception for you. Yeah, right. You can't. Then go to the accommodation staff and be like, Hey, I missed my exam. I have diabetes. Can you get me to take the exam again? They're going to say, No, we're sorry. We don't have any accommodations on file for you, but we can start the process now. Yeah, and anything moving forward, you'll have these accommodations, but they're not retroactive. So really, like you said, we want to have them in place just in case.

Scott Benner 15:47
They're like, the in case of emergency, break glass box on the wall, which, now I'm maybe sold that people don't know what that is, but that's not the point. We put together all these accommodations for Arden, and we never touched any of them. Like, never even the thing about having security come, she's like, I think I'd be embarrassed to do that. So she just like, you don't even mean like, she's like, I'll do it if I have to, but I don't think I'm going to you do have to see, though, the balance between being prepared for a thing that might happen the school's perspective of some people coming in there and asking for way too much and them not knowing your situation well enough to know what is like a flight of fancy from you and what is really necessary, like they don't know if what you're asking for really is like, I'd like a Ferris wheel, because it makes my diabetes happy, you know. And there are going to be some families who take advantage of this system, and that might make your job of explaining what you need more difficult. I that was been my finding.

Andrea Lafleche 16:42
Yeah, I think that this is why I think it is required that the staff look at each case individually. Like, if you ever have you go to your school and the accommodation staff is like, Oh, you have diabetes, here's your list. Like, this is what you can have. It's not really how it should work. You should be sitting or the student. Really, parents know, I mean, if the student wants you there and they're allowing that's one thing, but they should be going through your individual documentation, working with you about what makes sense for you and your accommodations. It's not a this diagnosis gets these things. This diagnosis gets these things, and that's what you get. It's an individualized plan per person? Yeah, no, it's a good point. We obviously have some suggestions of things to ask for that we think makes sense. But you do know your diabetes, you do know your body, you know other diagnoses that you have and how those might interact.

Scott Benner 17:32
But be careful, because the school might have a cookie cutter list that's not really going to help you. And if you believe they know what they're talking about, just accept it, then you might be stuck.

Andrea Lafleche 17:41
I mean, I've only worked at a handful of institutions at this point, but I haven't come across that in my work. Most of our the programs I've been at are like, you send the students. They have an individualized meeting. They're going over the documentation and figuring out what makes sense again, what's necessary, reasonable and appropriate, and going through that way, you shouldn't be getting a list. I just want to kind of put that out there, because every school is different. That shouldn't that's not how it's supposed to work. You're supposed to get individualized accommodations. Because even though I have diabetes and Arden has diabetes, our diabetes are different in some ways, right? And what we need? So just be aware that that's what should be happening. But again, it's necessary, reasonable and appropriate. So you can come in with a giant list of wants. If you don't have the documentation to really say, like, why you need that and why that is necessary for your diagnosis, they're going to be like, we're not. That's not a thing that you need, right? So just be aware that that's, again, why you need to get the documentation from your care providers, whomever you're using, and you can you're seeing multiple people related to your diabetes bring in multiple sets of documentation about your diagnosis and what they suggest you would need. Yeah, awesome. Again, the sooner, the better. It's a lot. It can be a long process, right? Because you're having these individualized meetings. They're going through your documentation and figuring out what's best for your students. So the sooner you decide your school and you get that documentation, the better it's going to be. Especially, like I said, if you want housing accommodations, and we can kind of go over some of the things that we think are good things to ask for and why, but housing specifically. And as someone who worked in housing for at least half of her career. It's up to you what you think is appropriate. Housing wise, if you're looking for a single or a specific maybe you go to the school and you realize, okay, only one housing option is close to the dining hall, and that's important, because we want to have access to food as quickly as possible, just in case, right? The sooner you get your accommodations in and approved for those types of things, the more likely it is you're able to get your housing accommodation for your first semester, because you're not the only one asking Correct, right? There's limited spots depending on what kind of accommodation you're in need of and get approved for. And we're not moving other students, right? So as students register. And things fill up depending on the housing process. Once they're full, they'll they're full. If you get an accommodation approved, you'll go to the top of the wait list for sure. But we're not kicking out another student that either has that accommodation already. We might have given away all of those types of spaces or other accommodations to you might not be able to get it right away, which is why, again, doing this process as soon as possible, getting that documentation together ahead of time, even if you're doing it before your student decides which school they're going to because maybe they're picking between two or three, they're not sure. But getting that together so as soon as you're ready, you can drop that in and get the process going. That's really important. Why

Scott Benner 20:39
don't we go over the things that you unless you were going a different way. I'd love to hear about the things you suggest that people look into Sure.

Andrea Lafleche 20:45
So on the housing side, as well, outside of types of rooms you're looking for a single for certain reasons, look at what is their fridge policy. So if you're going into a traditional style residence hall that doesn't have any sort of kitchen in it that would come with a fridge, or maybe you're going into a suite, but it doesn't come with a fridge. Look at what their policy is, and is that going to work for your student? Right? If it's a one fridge policy, maybe you do think it's best for two because of the medicine you might need to be bringing in. Maybe you're on insulin, and maybe you're on a GLP one, and that needs to be refrigerated, right? So you have a bulk that needs its own space. Thinking about that as an accommodation, I would say air conditioning, my housing. Friends will hate me for this, but I know my blood sugar does not like to be hot. It does not love heat. So what is the climate of the place that you're going to and what is the air conditioning? Older buildings or just typically, more traditional style residence halls don't have AC so looking at is that an accommodation that you can get for your your diabetes? Because, again, we know there's so many factors that go into managing it, those are probably the two biggest ones, I would say, for housing outside of a specific type of space.

Scott Benner 22:01
Before you jump forward, let me add about the refrigerator thing. Arden has one of those soda can refrigerators, so it really is just built to hold like a six pack of cans. Basically. It's very, very tiny, and she keeps GLP in it and insulin. But we had to get an okay for that. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works. And I picked it up. I was like, hello, and it was just the recording was like, us, med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it? Push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem, freestyle, they've got all your favorites, even that new islet pump. Check them out now at usmed.com/juice box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox Podcast com, to us Med and to all the sponsors. And it's just like a little 110 like, plug into the wall, doesn't make any noise. I don't even think it has an air compressor in it, like, kind of thing, like, and we still had to get an okay for that. So, yeah, check. Because what you don't want, right, is for someone to do an inspection of the room and go, Oh, you can't have that. You'll work it out eventually, but in that time, you know what I mean, like, are they going to be like, unplug your insulin? I don't know, you know. So yes,

Andrea Lafleche 24:03
yes, we again, also an RA did all this when we do room inspections, if something's not allowed, especially an electrical device, we're unplugging that because it's a fire hazard. Again, some of these rules and regulations are in because of the types of buildings you're living in. So older buildings, the amount of capacity that they have for electrical things, wattage, all these things. These are all things that are taken into consideration when the school is putting in these policies. It's not just like, we don't want you to have extra fridges because it costs more money. It's like, No, you're going to overload the system potentially, and we're going to have no power. We're going to have a fire, or something bad is going to happen, right? So look at those things. Different buildings might have different policies again, because of age. So asking these questions of your residence, Life staff, of the accommodation staff, even before you're going to the school, we are very adept to handling these types of questions all the time, right? You're trying to make a decision call or send an email. How they're gonna respond to you, and they're gonna be happy that you're trying to do your due diligence so that they don't have more work on the back end. They'd much rather you ask and get things in place beforehand, right? Okay, so other things to think about that you can ask for, and most likely, the institution is going to tell you, could be an option, but it's always helpful if you come in with a wish list, rest breaks without penalty, or what we would call like stop the clock. So if your blood sugar is going low, it's a timed exam. You want to be able to not actually have more time to take it, but you want to be able to stop the test taking time until you are at a place where you can function back at your baseline, to function appropriately, to continue that test. Right? So some people get, like, time and a half because they maybe need more time based on their disability. This is more of a you get 90 minutes, but the time that I'm low or the time that I'm high doesn't count in that 90 minutes, yeah, you

Scott Benner 25:52
get a timeout. Yeah, yeah. Basically, yes, you're

Andrea Lafleche 25:55
taking a time out, right? Stop the clock is stopping taking a test in a they call it a minimally distracting environment, and not necessarily because the person with diabetes needs less distractions, but we can be distracting to others, yeah, the beeping, the vibrating, the snack wrappers, whatever it is, so kind of helping not distract other students, right? That also kind of helps with having the stop the clock, right? You're not in the classroom that only has 90 minutes, and then another class is coming in, right? If you had to stop that clock and you need 30 more minutes, because that's how long it took you to go from 50 to 100 and feel good to take the test, you then have another class coming in, right? So that's not going to help you either. So kind of putting those together is helpful. I'm

Scott Benner 26:40
even seeing a situation where maybe your kid's blood sugar is falling and they know, I can open this cliff bar and eat it if I wanted to, but it's going to be loud and I don't want to bother people, so the next thing you know, your kids low because they didn't want to be a problem. And, yeah, that makes a lot of sense. Okay,

Andrea Lafleche 26:54
exactly. Yeah, this one's a big one, and can be nuanced depending on a few factors. So we'll go over those permission to keep electronic devices at all times. But I think the biggest thing we're seeing now is phones, right? Your phone is a medical device for many of us, whether that's because your CGM is on it, or now with new technologies such as the Moby through tandem, pretty much not the only way, but the way that you can do all of the features for your pump right? Andrea

Scott Benner 27:20
two days ago, Omnipod five, just their app, right? Yep, yeah. App just dropped on Apple. So iPhone, yeah, the phone really

Andrea Lafleche 27:29
is a medical device now and people, that's probably going to be the hardest thing to get people to understand, just

Scott Benner 27:34
the problems that the phone is also a cheating machine. Is that the problem?

Andrea Lafleche 27:39
Yeah, I think it's distracting, right? Like, how many of us have gone to this and they're like, please silence your phone, and then six minutes later, somebody's getting a phone call, and you're like, the guy just said it like, you didn't check, like, right? So it's distracting. It's definitely a way people that cheat, as someone who did academic dishonesty cases, students use it to cheat. So those are, like, the two biggest things. So helping, having your doctor help in the documentation, understand how your phone is a medical device and why it is necessary to keep it. Now, keeping it, I think, is where we get the variety of what does that mean, and coming up with what is acceptable and why. Keeping it doesn't necessarily mean that you have it on you. It's in my pocket, right? This might mean it's in the room with you. It's on the professor's desk, it's on the Proctor's desk, it's in the room that you're taking the exam, if you're doing it in a different place, but it might not be on you, right? But it's still within range where it's getting all of the signals that it needs to get. It still can alert you if there's any issues, things like that. So just because you're keeping it doesn't mean you're keeping it on you. And like, what does that look like? And that could differ depending on what the situation is. Right. Are you in a lab class where they don't allow phones, but you're not taking a test? So like, I can just have it in my pocket if I need to check it. Or is this during exams I need it, but it can't be like at my desk, or it needs to sit on my desk so the professor can see it and see that I'm not cheating on it, or it's sitting on the desk, whatever that looks like. So understanding there needs to be some conversation about what the permission to keep it actually means, like, what is the definition of that in certain situations? My

Scott Benner 29:18
finding with Arden's experience there is that eventually the teachers, they build a rhythm with you, and then one day, you bring the phone to put it on their desk, and I go, sorry, just keep it. You kind of get past that. But I've seen all that proctoring, you know. So Arden's taken proctor tests where she was so young still that she wasn't completely involved in her care all the time, like if she's taking a test and her blood sugar was rocketing up from adrenaline, for example, like she's got her phone silence, it's off to the side. So like sometimes I'd watch her blood sugar while she was taking a proctor test, and with an eye on not interfering, if not completely necessary, the phone stayed with the Proctor, and then if Arden needed something, diabetes. Diabetes wise, I'd send a text to the phone that would say, she needs to stop for a second to handle a diabetes thing. And then the proctor would stop the clock and say, hey, you need to do something. Hand her the phone, let her do the whole thing, or to hand the phone back. And then the clock restarted and went again. So it does work. It's just, you know, it sounds, probably sounds crazy to people when they're listening to it, like the phone's here and it's there and it's there and it can't be on my desk. But it really does work out. And I think at this point, people have been using phones for medical reasons for long enough, I don't think anybody's gonna be like, What are you saying? Like, I don't think they're gonna, you know, be taken by surprise by this anymore, right? It's

Andrea Lafleche 30:35
just figuring out what that accommodation looks like for the setting that you're in, right? Because the other thing will be smart watches, right? Like, I wear my smart watch, I have my blood sugar on there, but I also get texts, I get all these things. So what that's another thing to consider, if you're a smart watch, where they're probably not going to let that, that's going to be a rule in your exam as well. Like no smart watches. This will get also a little more complicated if you're going for standardized tests. So thinking about some of you might have already done that, a CT or the s, a t when you're going to college. But even more strict, I would say, than that, is if you're taking any exams to do

Scott Benner 31:12
graduate, l set stuff, those kinds of things. L

Andrea Lafleche 31:15
sat, MCATs, gmats, all of those are even stricter. So if you're a student listening to this, or a parent of a student that wants to do that, really start those accommodations through those test preparers way in advance to figure out what that looks like. And for your example, with watching and then texting the phone, that's not probably something that's going to be an accommodation, if you're thinking about that for your student in college, probably not something. That's

Scott Benner 31:41
a thing. Scott worked out Andrew, that's all. But let me say this, it is an example of having a really good relationship, because back then, I know that sounds crazy to people, but Arden was taking a big standardized testing when she was, like, in ninth grade, and like, all these algorithms didn't really exist yet, and you were still kind of bumping blood sugars around and doing stuff like doing stuff like that. They knew how this worked, that Arden and I kind of managed her blood sugar in tandem through texting. We didn't text often, and the fact of the matter was, there were times she took the asset. I never responded. I didn't have anything to say, but once I said, Hey, how do we work this out? Because we had a good relationship, it was easy in a quick email to work it out. You know what I mean, like? So my experience with all this has been that if you don't seem crazy at any point, that's really valuable to you. Because the minute the institution looks at you and goes, Oh my God, they are going to ask for a Ferris wheel, you kind of get put on, like another side of the ledger in people's minds. So I try avoiding that at all cost. But go ahead,

Andrea Lafleche 32:42
I want to help all of my students. I definitely dreaded some phone numbers that would pop up on my phone because I knew who it was. And like, we've had this conversation 12 times, and I can't say it any other way, or like, you need to talk to your student and yeah,

Scott Benner 32:59
all I'm saying is, don't be that phone number on Andrea's yes caller ID, where she goes, Oh no, no, no, yes, that's all I'm saying, right? We

Andrea Lafleche 33:07
can't, like, as a student affairs professional, we got into this job not for the money, but because we enjoy working with young adults, like, trust me, not the money, as many people in education know. And we want to help your young adults, we know the value of them being in this kind of middle gaining independence, figuring out who they are situation, and we want to support them in that. And sometimes parents are a lot and like, I'm not a parent, so I'm not gonna pretend that I understand what it's like to let your child go five miles down the road or 500 miles down the road, because I haven't had that experience yet in my life. But at the same time, they're not going to get any benefit from you trying to bulldoze whatever's going on. And I will definitely talk about some other ways I suggest supporting them.

Scott Benner 33:54
I think the words you just used there should reflect to people how serious this can be. On the other side, like bulldoze, you have literally felt knocked over by parents who are pushing Yeah?

Andrea Lafleche 34:04
It makes it difficult to continue helping. Right? You're taking it's almost like I get that you probably don't trust me. You don't know me outside of this situation. You don't know what I do on a regular basis. You don't know the other students I'm working with. But you're now taking five to 30 plus minutes of my day to repeat the same thing that we've talked about that could be using, working on supporting your students, right, and getting them the place that they need to be going. And so one the first phone call, okay, like I get it. You're stressed. You don't know what's going on. You're not here, potentially, you're not close. I'm trying to help you out as well. Second, third, fourth, like, okay, like, I'm working on it. Also, please talk to your student, because I can't one. I can't tell you because of FERPA, most likely, unless it's certain things and the school says I can, or they sign off to like, I can't force your student to tell you, so I need you You talk a lot about really. Relationship Building Scott, when it comes to you and Arden and her diabetes in general, like I need you to go work on your relationship with your student and figure out why they don't want to tell you

Scott Benner 35:08
these. Oh, see, because of how we have everything set up, that's not front of my mind, but now that you're saying it, I understand that there's a little bit of whisper down the lane here going on. And not everybody's always whispering everything completely, because you can't say everything that you know, the kid's not telling the parent. The parent might be out in the snow anyway, because they don't have the full community. Oh, I see, yeah. So yeah. Back to the answer of, When should I start working on this? The day the kids born? Is the answer? Is that? Right? Okay,

Andrea Lafleche 35:34
pretty much. All right. Try your darnedest to create a relationship where they feel like they can tell you things. Yeah, okay, so other accommodations that you could request, using the restroom as needed, or dependent, most times again, this is very school dependent. There's not going to be assigned seating. It's college for the most part, right? Maybe in a lab you might, because you have lab partners, this is your station. You're doing long term things. So maybe it's like, can I get preferential seating near the door so if I need to use the restroom, I'm not disturbing everybody as I'm making my exit, right? Permission, again, this comes a lot with, like, food not being allowed in classrooms, depending on what it is, what program you're in, but that permission or ability to treat high or low blood sugars, keeping food on you, or figuring out what that looks like depending on the situation, again, most of the time, you're going to find potential issues or, like the no food in lab related settings, right? You're doing experiments. You don't want to contaminate them. So if that's something you foresee your student being in, whether that's in their general education requirements, or they're going into the sciences, is that going to be an issue? How do we work around this? How do we figure this out? We talked a little bit about what might not be accommodative, and one of those was priority registration for very limited reasons. But a reason to ask for this is, you know your body best, you know your diabetes best. You know kind of what schedules work for you. So this can be helpful in kind of having the best chance to make a schedule that works best for you, especially thinking about it's not most likely going to look like in high school, where you're in school class eight to three and then the rest of the day, right? Monday, Wednesday, Friday might look the same and Tuesday, Thursday might look the same, but maybe we can try and get them a little bit similar, right? So that's another thing to kind of think about as an option to

Scott Benner 37:24
avoid problematic times a day, like, if your blood sugar is always low at 2pm like, don't have you walking across campus at 2pm if you can help that stuff like that, right?

Andrea Lafleche 37:33
Or if it's really helpful that you eat around that you actually have a lunch, make sure you have time to get lunch, right? And that's not just eating, but like, do I have time from where my classes to get to? Wherever I can get food again, depending on campuses, some have multiple dining halls. Some have one. Can I get there? Can I get food? Is that going to be rush hour? Can I then leave and get to my next class on time? Okay, so yeah, and there's many other things and they you can ask, what are some potential other options? But those are probably the top things that we think make the most sense around diabetes. Specifically, I'm

Scott Benner 38:11
going to add an experience here, just because I think it belongs in this somewhere you're going to find that the food at school is not conducive to stable in range blood sugars there. I don't mean your kid going to like a convenience store and buying a bag of chips or something like that. I'm talking about sitting down at the dining hall eating. You don't realize, you know, oh, everyone loves the broccoli. It's because it's cooked in a ton of salt and oil. You know, to go that kind of thing like you don't recognize the quality of the food until you get to college, until your kid gets to college, you do not recognize that the quality of the food, I didn't certainly is as poor as it is. And you know, by the time Martin went off to college, she had she was using, I think she was looping. When she left for college, she had an A, 1c in the, I think, in the high fives at that point. And she'd go have a what she thought was a reasonable dinner, and she's like that, I can't seem to give myself enough insulin for broccoli and chicken. I don't understand what's happening, right? So, yeah, we learned that along the way, and we fought it every which way we could, meaning like, you know, just changing our settings and being more aggressive. And it worked for the most part, but her a 1c drifted up into the mid sixes at college, and this isn't because she wasn't bolusing or anything like that, right? And now you're using a lot more insulin, and now you're walking around more with more insulin on board. You're getting, you know, you more chances for lows. There's a lot of reasons why you don't want to do that, but my takeaway was, and the only fix I could come up with was getting her housing with an actual kitchen or refrigerator situation, not like a tiny little refrigerator, a place where she could keep fresh food and make herself meals. And as soon as we got her into that scenario, everything went back to the way it was. So it's more impactful than you think. It's not just the food. My blood sugar, it starts to touch everything. It starts to touch definitely, three o'clock in the morning, like, why is she getting low all of a sudden in the middle of the night? That never happens. Oh, it's because the food she ate at 9pm crushed her she put a bunch of insulin on it. Now she you don't know how simply just that food choice can just it spins a lot of things out of control. So if you can get to good quality fresh food at college, I think you'll make the entire experience much easier. That's just my opinion. But no,

Andrea Lafleche 40:29
I definitely think we all know that nutrition plays a huge role in a bunch of things, some ways to not only mitigate but to kind of see what you're working with, is go on the dining website. Most schools are contracting out their dining services. A handful, I would say, have in house dining, which can potentially be better. But see again, when you're going on these tours, when you're thinking about schools, check out what their dining options are. Some it's just one dining hall and they're open for breakfast. They have limited things in between. They're open fully for lunch, limited things in between. Dinner. That's it. Some larger schools are going to have multiple dining halls. Some are going to have like, their dining halls are going to be like, known for certain things. They're tailored to maybe certain types of diets, depending on how large the school is. Go on the website, see what information they provide most places. Now, I would say online, you can get the nutrition information of what they're providing. I mean nutrition information in general, as we know, can be little hit or miss, depending on what's going on. But feel free to contact dining and see what the options are. See what's going on, how it works, because some schools might not have fully kitchened housing options, right,

Scott Benner 41:45
right? I'm saying beyond that, even if it says it's a piece of chicken, it could have preserved like it might not be the same breasted chicken you get at home if there's preservatives in it, if it's been frozen prior that, you know, I know that sounds like. I don't know if it sounds hippy dippy or not. I don't I honestly, I don't care what it sounds like. I'm telling you, it's harder to Bolus for processed food than non processed food, and some of it's going to look like it's not processed food, and yet still be so be careful. That's all, yeah,

Andrea Lafleche 42:12
yeah. And you should, and what I'm saying is you should be able to go and pull up exactly the nutrition facts of what that chicken breast is. Yeah, many schools, especially if you're going to a larger institution will have that option for you, and you can at least have a base to go off of, yeah. Also, you

Scott Benner 42:26
don't want to get involved in that situation where you finally are like, you know, now you're on the phone, you're like, Hey, what are you doing? Like, you know, like, your blood sugar's all over the place. Like, what's going on? Because there's a lot of other factors beyond food. I mean, we're not really talking about this here, but sending your kid off to college to take care of their diabetes, while all the other things that college is is happening is difficult. So I'm just saying, let's not make it more difficult in one area where you know it doesn't need to be if you can be a little def about but this is

Andrea Lafleche 42:55
why get your accommodation set up, because this is what we're trying to deal with when you get when your student gets there, and things might not go well, and you don't want their academics to unnecessarily suffer almost double, right? Because they're already feeling crappy. They're already feeling they might have missed class, so they're already missing information. Let's not have them then get a zero on an exam, right? Because they didn't have accommodations in place because something happened, yeah, the night before, because you're re figuring out your diabetes in college in a lot of ways, and

Scott Benner 43:28
you don't want that relationship piece to fall apart, because it's going to, it's getting into, like, parenting, but like, it's going to at some point, because as they get older, they're going to, like, it's very healthy, by the way, but they're going to test boundaries and try to pull away from you and make decisions, like, I can do this on my own, and then maybe they can't, or maybe they're not gonna do as good of whatever. Like, there's a lot of stuff that can now. I'm saying, don't make it harder in places where you don't have to, and no one thinks about the quality of the food when they send their kid off to college. It's not until you get there that you go, Oh, these are the stories I've heard from other people who have kids at school. Like, this food sucks. Like, so anyway, or

Andrea Lafleche 44:03
you don't realize that it's not open when you thought it would be right, going back to your class schedule, like, oh, I can't get lunch until 1130 but I only have 11 to 1130 to get lunch. What am I going to eat? Right? So these are all things that you want to think about when you're searching for schools, I

Scott Benner 44:22
see mail access on your list. I'm interested why that's something you brought up, sure. So

Andrea Lafleche 44:26
again, every school is different, but at when I went to college, we each residence hall had their own mail room, and that's where I would go, check my mailbox, buy a slip my packet, I would go get my package from the front desk. That's how it worked. But the mail that was sent to me didn't go from wherever is going to the mail in town, then to my residence hall. It went to the central receiving they sorted it, then, like the next day, it would get on their truck. To my building, and then that day, or the next day, the student staff that worked our mail room would sort it out. They'd write the slips, they'd put them in mailbox. So let's say my parents were overnighting me something. It might have overnighted from their house to central receiving, but then it took two to three more days, potentially, to get to my residence hall, learning how mail works, especially, and I say this especially if you're planning to receive medical supplies there, right? I didn't necessarily receive medical supplies because I went to school 30 minutes for my parents, so I was home every few months. Anyway, I'd pick up what I needed and bring it back with me. Or if there was some sort of emergency, I could get it in 30 minutes, but not everybody's doing that. So what does mail look like, and how do we set that up or make sure that it works for our medications? Or is it not going to work? I worked at a school and lived on campus where mail wasn't received on the weekends, so if my insurance was like, Oh, we're sending your insulin. And it had to be like, Friday into Saturday. Nobody's there to receive it. It's gonna get sent back. It's gonna do whatever. How am I getting that right? Also,

Scott Benner 46:10
where is the school? What's the temperature at the school? Like, like, Are you down south? Is it warmer? You know? Yep, somebody sent you off this medication on ice. It's meant to arrive at your door be opened, not arrive at your door and sit for three or four days before somebody sees it when it's 95 degrees outside. So, so what do you do? You set up a situation where, when they see your overnight come, they bring it right to you. Can you work that out?

Andrea Lafleche 46:33
I think that's one something you probably talked to. Start with your accommodation services team, right about like, this is what I need. How does that like, figure out who to talk to, some options that I discussed again when I was in that job and living on campus was our health care center was open every day. So could it go because there was a medical supply? Could I have it actually shipped to their address and they receive it for me. They were a fully functioning like medical doctor's office, right? They had refrigeration, all those things. Could they receive it for me and I'd pick it up there instead of at the mail? That was an option. And so talking about what could work if it's a situation where you're going to have to send medical supplies, yeah, what can we figure out? I'm positive that they'll be able to figure something out. It's just, you want to think about those things and have those questions answered before. It's like, oh, I shipped this. It got returned

Scott Benner 47:34
before. Right, right? I did two things with this. So first of all, when Arden leaves with dry goods that are medical supplies, she takes enough to cover her plus while she's there, right? It sucks, but she's got a plastic bin under her bed that looks like a CVS pharmacy that has everything in it. It's jammed away under her bed. But insulin, I was worried about what you were talking about, because we do get our insulin through mail order, so I changed her insulin prescription while she was at school to picking up at a pharmacy that was local to her. Now that's still not great. Like, nothing you come up with is going to be perfect, because, like, you know, sitting here in the house, you're like, oh well, she'll just go pick it up until you're like, art in your insulin center. And she goes, Listen, I'm going to school. I don't have time for this. Like, you don't even like, and you're like, Well, you got to go. And then a lot of stuff add stress. It's interesting. And I did have one example once where a GLP was being sent to her through overnight mail. And I wasn't prepared, because it wasn't a thing we were thinking of. We were a couple of years into it, and I thought, What do I do? So I called the mail center, I spoke to a person, and I said, Look, there's this thing coming in. It's on ice. It's medication. I'm not trying to cause you a big problem here, but if there's a way to get that from you to her without all the stops in between, and the person took me seriously and was lovely and took care of it, but I don't see how I could have had that set up to happen, like, on a monthly thing. Like, I mean, you can't expect this is the thing. I have this thing written down to ask you at the end, but I'm just going to say it here, and then you can get to the last couple of things that you want to talk about. Just because you set something up doesn't mean someone's not going to mess up down the line. That's going to it could not happen. You know what? I mean, like, so you have to be aware that it's still a human interaction. I hear people all the time want to be like, I have that my 504 plan, and they didn't do it. I'm going to call an attorney. I'm like, I mean, okay, I get that. They're supposed to do it. But you can also step back sometimes and see how that thing could be missed. The guy in the mail center, that's not a thing he does, and then all of a sudden you're putting in this very specific ask. They don't have a process for it, and so it could get missed. And I think that can happen along the lines with a lot of this stuff. And so, you know, it's tough, because you could put, I mean, am I far off? You put these things in place, but they don't always work the way you want them to, right? Yeah, I think

Andrea Lafleche 49:47
when it comes to some of this stuff that we're talking about, when we're talking about accommodations, they need to happen the way that they're supposed to, because that's under the ADA and a very legal thing. Yes, of course. Human error and different things like that can occur. But when it comes to your accommodations, like, I'm supposed to be able to stop the clock, the river is like, No, I don't. I don't know that's different. Like, no, but yes, the male, right? I think that's where the relationships come in, right? You talk a lot about, like, the relationships, and building relationships and encouraging your student to build relationships. Like every student is different when it comes to who they are, how they handle their diabetes, who they want to know. Like, are they outgoing? Are they introverted? Like, we're all different individuals, and the expectation that we should all be like, I have diabetes, here's my Dexcom. Like everybody true, but like encouraging, like building relationships with the people on your campus, your peers, but also the staff. Like, like I said, we want to support you, and I think knowing a face and knowing a name, and you know, even with your male staff, like being kind every time you go and be like, thank you so much. Like, I really appreciate you putting this aside for me, they'll get to know your name and like, Oh, this is Andrea's package. Like, she'll be here, yeah, like, tomorrow to get it, or whatever, like, and those things go a long way. Like, it's not a nitty gritty process, but it helps, right? And I think that's

Scott Benner 51:15
I completely agree with you. I'll tell you that Arden said to me in her like, halfway through her freshman year. In the beginning, she said, Guess what happened to me today? I was like, what? She goes, my professor came up to me and pulled me aside and said, Hey, I'm not supposed to ask you this, but what's wrong with you? And Arden was like, Oh, I have type one diabetes. And the professor was like, Oh, good. And so then they started having this real conversation, like a personal conversation, and the professor said, like, I'm not allowed to know what your medical condition is, and I'm not allowed to ask you, but I'm sitting here and I'm watching you, and I'm thinking, I don't see anything going on. And it started to worry her, right, that there was some really big thing happening that could just happen out of nowhere. And the professor was just looking for some like, is there a thing I should be looking for comfort or something, because you don't look like you have an accommodate? Like, that whole thing was happening. And Arden, at the end said, like, I wish all of my professors would just come up to me like that. That would be awesome. To your point, not everybody might want that, but the fact of the matter is, is, if you're not a person who wants that, and that happens, I can see people getting really angry about that, but I would always say again, like, just try to see the other side of it. Like the professor was not supposed to ask her that. And the way she asked her Andre was not, like, slick, like she literally, I'm not making up this. She said, Hey, can I ask you a question? What's wrong with you? So, like, not optimal, not great, yeah, but response then dictated how the rest of it went. Then she had a great relationship with the person after that, you know. And I

Andrea Lafleche 52:48
can't believe I didn't write this in my notes, but this, I'm so glad you brought this up. When a student is given accommodations, the professor is only notified of the accommodation, and that's either through the disability office, sending them the information of like this is what the student gets, or the student bringing a letter they're not given the why they're only given. The student gets stop time on their exams. They can have food, what they get, the list they don't get. Andrea has diabetes, so she might go low and she needs to treat her blood sugar they get Andrea can have food, she can have her phone. She can leave to use the restroom whenever she wants. So I'm sure that some faculty, especially seeing because a lot of us are like, I don't have a disability. Legally, we do. But is diabetes disability? That's a philosophical conversation, if you want for another time, we don't look sick or in need most of the time, unless we're, like, super low or something's going on. So I can imagine faculty being like, Ah, this person is totally normal. There are they're always focused. They're always paying attention. They get great grades. Not that people with disabilities don't get great grades, but like, there's no indication in their mind that they would need any of this. Exactly what

Scott Benner 54:00
was happening? Like, I think the teacher wanted to say, like, You're freaking me out, like, I have this list of things, like, you're allowed to just stand up and leave the room if you want to.

Andrea Lafleche 54:07
Why, right? Like, are you gonna pass out on me? Like, do I call someone? Like, what's gonna happen? Like, yeah, so they might be on edge. So, yeah, telling your faculty ahead of time. If you're comfortable with that, go for it. Please. Do.

Scott Benner 54:20
I think that the professor was confused too, because I think the professor was worried that it was a mental health thing and that they weren't like. So there's a lot like, again, I want to point out, if they thought it was a mental health thing, Hey, what's wrong with you? Probably, again, not the way to go, but that is just a very there's a thing you might not know. So that's why I wanted to bring it up. But go ahead, move on to transportation. I'm sorry, sure. I

Andrea Lafleche 54:39
think your example of this previously, when we're talking about accommodations, is great. Accommodations, is great. Like, Arden had to take a bus to get to a different classes, right? So, like, what does transportation look like around campus? Right? I went to a large state school. My residence hall was on the outskirts. My first class was all the way on the other side of campus, so I had a good 1520 minute walk. Walk, if that's what I decided to do in the morning, or there was a bus, right? So, like I had that option. What does that look like at your school? What does transportation look like on campus for you? Like, if your blood sugar is low, am I gonna be able to hop a bus to get back to my residence hall? Even if I brought my blood sugar up, maybe I don't want to walk and then risk going low again. Or would I have to walk? Do I have to wait and then walk to campus. I think the other thing, like you said, getting supplies at a CVS, maybe that's a great option. But do you have a car on campus? Are you allowed to have a car on campus? If you're not? Do they provide transportation to places off campus? Some schools do. Some schools don't. What do those things look like? So asking those questions so you can make decisions on some of these other things, like the mail or dining options. So Arden's

Scott Benner 55:45
been at two schools, and one of them, like I said, was spread out over a city, and we did get a car down to her eventually, and got her a parking permit. And that all made most things incredibly better there when she transferred to another institution. It's just not a school where people have cars. So we were like, hey, you know, can she have her car? Here's things that we were thinking like the first place. And the person I talked to was like, man, nobody has a car here. There's not even nowhere to park. Like, there's just, there's no need to have a car here at all. And I said, Well, I would like her to be able to access a car if she needs to go for medical help on her own, or even if we want her to come home or something, because she's closer now, that kind of thing. And it's funny, the best they could do is they gave her a parking spot, but it's so far from her the car's not accessible, like, it's basically like we're housing her car somewhere near where she sleeps, and then she basically has to take a 20 minute walk to get to the car, to get into it, and even the couple of times she's going out for supplies, she's like Dad, I had to go out for supplies, go back to my dorm, drop off the stuff, go park the car, and then it was late at night, so I had to Uber from the park, from my car to back to my dorm. So it's really not very valuable in situations like you'll see. But again, figure out where you're going, find out the lay of the land. Know those things first, save yourself a lot of hassle. Exactly,

Andrea Lafleche 57:08
yeah, which is kind of like, what are the other amenities like on campus or near campus? Do they have convenience stores? What does the health center look like? Don't assume that like, Oh, we're looking at a large public school. They're going to have, like, a robust health center. That's not always the case, right? I've worked at places where it's anything from, like, I'm basically going to, like, an urgent care semi, like, Nurse office situation. You have this here, you need to go do this to, like, it's basically its own hospital. I could get PT there, I can see the eye doctor. Like, they have all these specialties because they're so big, or they're attached to a hospital. See what that looks like. That often

Scott Benner 57:44
becomes the case too, like, because first time Arden got sick once I said, I need you to go to urgent care, she went, and she said, I'm here with seven people I'm sure are oding right now, and me, and I'm like, Oh, great, because there's just nowhere to go. And even when she ended up in a hospital once. This is something to consider. It was not the greatest institution of medicine that I had ever seen in my entire life. So it isn't not worth wondering if I have a choice between a few colleges, like, what is the medical care around the college like? In case something comes up, then the new place she went has exactly what you're talking about. Like they have medical care on site. It's insane how good it is. And they even have their own pharmacy. It's not even a for profit pharmacy. You just send your scripts there, and then whatever the pill costs. Like, you know what I mean? I'm like, wow, that's yeah, thought out. But that school is near a major health system, and I think that's part of how it's working. So anyway, definitely a bunch of stuff. I wouldn't have thought

Andrea Lafleche 58:41
of a lot of these. And I think the variety of types of higher higher education institutions that we have in this country is great because not every student is going to thrive in the same environment. I think about me and even my siblings. Both of my siblings went to, like, smaller, more intimate campuses, and that was great for them. And I went to a large public school because I was like, I don't want to feel like I'm in high school. I want options. I want to like, I didn't know what I wanted to do. Some people are like, I know exactly what I want to do. This is the life path I'm on. But you're going to find that the things that we're talking about now are most likely, in most situations, going to be easier at larger institutions. They're going to have more options. They're going to have more ways to navigate things, because they typically have more resources. They're serving more students, so they have to think about the diversity of students that they're getting and then the needs that they could have, right? They're

Scott Benner 59:37
almost forced to offer good services because of the large population, right?

Andrea Lafleche 59:42
It's kind of, they become like their own little town or city, yeah, especially because they're also usually, typically farther away from other resources. So they're like, we just need to have them on

Scott Benner 59:52
campus, right? Because what are we gonna do? We don't, if we don't provide this, there's nothing around here, so, correct, right?

Andrea Lafleche 59:57
Not that mid and small size of. Institutions aren't amazing and don't have great amenities and things to work with, but you're going to find, I would say, from my personal experience, that these things are going to be easier to navigate or have more options to determine what's best for you at some of those larger schools or schools that are closer to a metropolitan area,

Scott Benner 1:00:19
yeah. Well, it's been my finding Okay, so that's it. We got the by the way, this is hilarious. We were like, we'll probably get this done in like two hours. So that was one hour for the first time. So we're gonna probably need to put you back on the schedule a couple more times because I'm chatty and you have a lot of information in you, which is awesome, yeah, but did you like the way this went? We're still recording, but did you like the way this went? Yes, good,

Andrea Lafleche 1:00:39
yeah. I was a little worried when you were like, it's gonna be less conversation. I

Scott Benner 1:00:43
was like, Oh, I just met. Oh no, by the way, you don't understand this was less conversational. I stopped myself from talking like six times. Maybe that's what I should have said. I will stop talking as much as I normally do. Is probably what I should have said before we started. But I thought this was terrific. So thank you. Okay, good. Yeah, you

a huge thank you to one of today's sponsors, G VO, glucagon. Find out more about G vo hypo pen at G VO, glucagon.com, forward slash, Juicebox. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box. This episode of the juice box podcast was sponsored by us Med, US med.com/juice, box, or call 888-721-1514, get started today with us. Med links in the show notes. Links at Juicebox podcast.com our Juicebox community knows the importance of caregiver support so intimately, and Stacy's story was a great example of what caregivers go through on a daily basis, from helping managing the highs and the lows to juggling a full time job and putting dinner on the table. Life can be challenging at times. To learn more about the Medtronic champion community and to find helpful resources and tips for caregivers and families, visit Medtronic diabetes.com/parents caregivers, if you or a loved one was just diagnosed with type one diabetes and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to Juicebox podcast.com and click on bold beginnings in the menu. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

#1375 Two Year Gap

Kristen shares her journey managing type 1 diabetes in her family and finding support.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome.

My note says, Kristen has three dogs, something like 100 chickens, four kids, and she's pregnant, but if you need to know more, she's also the mother of a child with type one diabetes. 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. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juicebox to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com if you are the caregiver of someone with type one diabetes or have type one yourself, please go to T 1d exchange.org/juice, box and complete the survey. This should take you about 10 minutes, and will really help type one diabetes research. You can help right from your house at T 1d exchange.org/juice, box. You

the show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Ever since cgm.com/juicebox, Arden started using a contour meter because of its accuracy, but she continues to use it because it's durable and trustworthy. If you have diabetes you want the contour next gen blood glucose meter. There's already so many decisions. Let me take this one off your plate. Contour next.com/juicebox Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes, early tap now talk to a doctor or visit screen for type one.com. For more info.

Kristen 2:29
My name is Kristen. I live in a small property in southern Idaho with what I like to call my feral children and all my little farm animals. I have four children. My third one is my type one, and we're just doing the best we can. I bet

Scott Benner 2:47
you are four kids. Yes, 1234, the third one's the type one. How old

Kristen 2:54
she is? Six, almost seven, next month. Oh, and

Scott Benner 2:57
diagnosed at four and a half. This is not very long for you. Then maybe two years, no two years in May. Okay. Did it come as a surprise? Yes,

Kristen 3:08
we have, as far as we know, no type one in either family. She has no antibodies, and she is not Modi,

Scott Benner 3:16
okay. Other kids are. How old start at the top 12,

Kristen 3:20
nine and four and a half.

Scott Benner 3:24
Kristen, you know, I have, do you listen to the podcast?

Unknown Speaker 3:27
Yes.

Scott Benner 3:28
Are you when I when I can fit in? So, you know, I'm going to ask you, are you building an army for God or a basketball team? What is it you're doing over there?

Kristen 3:35
I guess that's just the way the dice rolls. This is the part where I tell you that I just found out I'm pregnant after five years.

Scott Benner 3:43
Thank God. My intuition always pays off. Okay?

Kristen 3:48
It was very much in the loose term of, can you actually say it's a surprise? But it wasn't a surprise.

Scott Benner 3:54
Be honest with you. You walk in the room, you look at your husband, just the look on your face tells him you're pregnant, right? You don't even have to say anything, actually. No,

no. How'd it go? No.

Kristen 4:05
He was like, you've gotta, You're kidding, right? He asked if I paid my pregnant friend to take a test.

Unknown Speaker 4:11
How old are you guys?

Kristen 4:12
I am 35 almost 36 and he is 48 oh, yeah, he's old. How

Scott Benner 4:20
this happened? Kristen, what happened? Tell me you were running from your family the law. What happened?

Kristen 4:25
He looks really young. He tricked me. I was just kidding. It just happened. Our families go way back and

Scott Benner 4:33
I see Yeah, was there? Was there drinking involved in the beginning? No, no. How old were you when you got married

Unknown Speaker 4:41
1919,

Scott Benner 4:43
he did this. I think you're a victim. I

Kristen 4:47
think we can. I don't feel like a victim. People are always like, you gotta be kidding me, you know. And then you look at like, you know the olden days, and you're like, oh, oh, maybe it's not so bad. It's

Scott Benner 4:58
not crazy. Yeah, that's and. Wow. So you're going to have five kids. Do you think that'll be the end of it?

Kristen 5:03
Yes, we weren't really expecting to have five kids I have, I don't know, probably PCOS, I'm guessing, oh, and really messed up, like cycles. And apparently this one was not messed up. And what do you know?

Scott Benner 5:20
Let me ask you a question, and I hope this doesn't sound like I'm talking down to you, because I'm certainly not. But I just want to make sure about this. You know how this all works? Right?

Kristen 5:28
Yes, yes. I know how it happened. Our other kids. Like, it was not like, it was months of being like, okay, yeah, we're gonna have four kids, and it was like a process to get there. So this is the only time it's ever been like, oh, surprise. Surprise

Scott Benner 5:46
is that one of your kids or a dog?

Kristen 5:51
That's my dog, okay, bit of a ding bat. How many

Scott Benner 5:53
dogs do you have? Too many, three. Oh, my God, all right, Kristen, listen, what other animals are living things are on that property with you. We got three dogs, four kids, one cooking, a husband. Keep going, probably

Kristen 6:07
like 25 chickens, okay, three goats and a horse. What

Scott Benner 6:12
do you do with the goats? Well,

Kristen 6:13
here's the thing. The lady I bought the goats from was supposed to have castrated the mail, and she missed one, and so he reproduced with the female. And then I was like, where did that massive go piece come from? And then she popped out a baby. Yeah, apparently it's an epidemic around here, the pregnancy.

Scott Benner 6:37
You mean, yeah, surprise, yeah. When we get off later, I'm going to give you some sure fire tips to not get pregnant. Okay, yeah, I feel like, you

Kristen 6:46
know the problem is, is that I'm probably gonna get my tubes tied. Let's just be honest, because I throw up a lot when I'm pregnant. If I take birth control, it's like, I'm throwing up all day, every day, running birth control. Oh,

Scott Benner 6:59
I'm sorry, that sucks. Yeah. So it's a super

Kristen 7:02
weird like, apparently I must be sensitive to it, because I tried more than one kind, and if it has the hormones, I'm up trucking. Let's kind of ask

Scott Benner 7:12
a couple other questions before we dig into the kid with the diabetes thing. Do you have any other classic PCOS symptoms, hair, acne, weight, anything like that. Getting older means a world of change, but some things still stay the same, like being at risk for type one diabetes, because type one can happen at any age. So screen it like you mean it, if just one person in your family has type one, you're up to 15 times more likely to get it too, and 50% of type one diagnoses happen after the age of 18. So screen it like you mean it type one diabetes starts long before you need insulin, and one blood test could help you spot it early and lower the risk of serious complications like diabetic ketoacidosis, known as DKA. So don't get caught by surprise. Screen it like you mean it, because getting answers now can help you get prepared. The more you know, the more you can do. So don't wait. Talk to a doctor about how to get screened. Tap now or visit screen for type one.com to learn more. Again, that's screen for type one.com and screen it like you mean it. Why would you settle for changing your CGM every few weeks when you can have 365 days of reliable glucose data? Today's episode is sponsored by the ever since 365 it is the only CGM with a tiny sensor that lasts a full year sitting comfortably under your skin with no more frequent sensor changes and essentially no compression lows. For one year, you'll get your CGM data in real time on your phone, smart watch, Android or iOS, even an Apple Watch predictive high and low alerts let you know where your glucose is headed before it gets there. So there's no surprises, just confidence, and you can instantly share that data with your healthcare provider or your family. You're going to get one year of reliable data without all those sensor changes. That's the ever since 365 gentle on your skin, strong for your life. One sensor a year, that gives you one less thing to worry about, head now to ever sense, cgm.com/juicebox, to get started. I

Kristen 9:31
had, like as a teenager, super painful like, to the point of throwing up periods and just super irregular, always, never consistent, just all over the place, interesting

Scott Benner 9:45
weight. Still, I know you're pregnant now, but prior to being pregnant,

Kristen 9:49
oh yeah. Like, I not been able to not that I've tried super hard. But, like, I weigh what I weighed after I gave birth to my last kid five years ago. Have

Scott Benner 10:00
a question, Have you considered asking your doctor for the GLP for weight loss to see if it also helps with the PCOS symptoms?

Kristen 10:08
I haven't, because I don't. I'm not like I guess it doesn't matter what you weigh, though, does it?

Scott Benner 10:13
Well, here's why I'm asking, because you don't have type two diabetes, correct? No, right. So, for instance, running my family, there's always hope. So then my point is, is that for insurance coverage, there's two ways to get to a GLP medication. You can have type two. They'll just they'll give it to you if your insurance covers it. And if you have a BMI over 27 maybe, and so if your BMI is high enough, then you can get the same medication under a different name for weight loss, and insurance will cover it. And then you could get the benefit of the weight loss part. Hopefully also, there's a lot of people out in the world talking about the benefits of it for PCOS and inflammation in general, it's something to why, yeah, there's something that looked up my BMI, you went and looked it up. Yeah, did you really that quickly? Yeah, see people here Idaho, and they think not technically adept, but no, you were right on it. You

Kristen 11:16
know what? My husband works in technology. So maybe that's where am I? You born and raised there? Yes, I have lived here all except for two years.

Scott Benner 11:24
And for those two years you were on the run from the law, but then this man found you any marriage. Was this what happened? No,

Kristen 11:30
I was in Washington because I got married. Wait a minute to

Scott Benner 11:33
him, though, right? Yes, okay, you weren't like married when you were 17. No,

Kristen 11:37
just just one marriage, just 116 and a half years, just one marriage,

Scott Benner 11:42
75 living things in there. Yes,

Kristen 11:46
oh, yeah, no, Scott, at one point, I had a chicken farm, and I had like, 150 chickens. Now what? What

Scott Benner 11:53
do you do with 150 chickens?

Kristen 11:56
Some of them were meat chickens, and then I sold the eggs. Nice. Yeah. Listen,

Scott Benner 11:59
money is a perspective thing, but is, was that a good earner for you the eggs, or was, was it a lot of work? Or how does that go? It wasn't a

Kristen 12:07
lot of work. And I did pretty good. I wouldn't say it was probably like, I mean, if you really did the math, like in a spreadsheet, I probably broke even. Was about all I did, but it was fairly steady cash flow, yeah?

Scott Benner 12:19
But not enough to buy condoms. That was the problem. Yeah,

Kristen 12:23
well, you know,

Scott Benner 12:25
all right, I love you. So far, this is great. How pregnant are you?

Kristen 12:30
Like, nine weeks get out of so

Scott Benner 12:33
am I the first person you're telling? No, my dad took care of that. Oh, that's nice.

Speaker 1 12:38
He can't keep a secret when it comes to that, I

Scott Benner 12:42
thought you were gonna just say, people just assume I'm pregnant. Like,

Kristen 12:47
I had a couple people who found out who are like, Oh, I thought so. I was like, no, no, that was just my fat.

Scott Benner 12:52
Well, I don't mean that. I just meant because you're always pregnant. I meant, like,

Kristen 12:56
five years, Scott, over five years, but

Scott Benner 13:00
12 and nine, there's three years nine and six, three years six and seven and four, three years. You're on a three year schedule until this and you don't know what it was, a wedding. Wait,

Kristen 13:11
no, we talked about having four, five kids, and then she got diagnosed with type one, and we were like, and that's I spent the last two years surviving, I guess, you know? Yeah, let's talk out what we're doing and keeping her alive and keeping myself sane. Because there was a few moments where I was like, You know what? Maybe today she's gonna run a little higher so that I'm, I'm

Scott Benner 13:35
gonna go lay down with the goats. So tell me about it. Like, what'd you see first? How'd you figure out she had type one.

Kristen 13:41
We went on a road trip from my husband at the was working in Arizona for a company based in Arizona at the time, and we went from here to Arizona, and was going to be a 14 day trip, and it was cold here, like, in the 50s, and it was like, you know, 100 and something there already, and we get down, like, kind of on the way. She was, like, really thirsty, but we were all thirsty because the transition from cool to hot, and then we get down there, and we all pick up, like, this very bad stomach bug. I'm really sick. Other kids are pretty sick, and she'd had a UTI before. So then, like, we're had a bad stomach bug. We start coming home, and she's just off. But I was like, Okay, maybe this just lingering worse for her, the stomach bug. Yeah, we get home, and she's still not herself, and she's going, you know, she's frequently urination and just off. And when she potty trained, she never wet the bed. So the night before I took her in, she wet the bed. I get her cleaned up, like, 45 minutes later, she wets the bed again. And I'm like, That's really weird. Yeah, yeah. I get up in the morning to get ready to take her to the walk in clinic, and she comes in the bathroom with me, and she's standing in the bathroom, but then I have a scale on the floor, and she steps on it. She had lost like, eight pounds. Oh, geez. And she weighed like, she's tiny. She's always been tiny. And I was like, she's lost eight pounds. Like that is

Scott Benner 15:24
alarming for a small child. Very

Kristen 15:26
alarming. Yeah. And so I google weight loss and frequent urination, and I was like, no, no, no, because the first thing that pops up is type one. It's like, There's no way. But you know it's there in my mind now. So we go to the walk in clinic. They were like, there's no one in the waiting room, but they're like, all the clinic rooms are full, yeah, so get their rooms are full. The nurse comes out and he's chats with us for a second, and he's like, I don't think she has a UTI. I want to test her blood sugar. And I was like, okay, and it was too high for the walk in cleaners reader to read. Just said hi, and he's like, Listen, guys, this is probably what it is. I also work at the emergency room. I'm going to call them. Go straight there. They're going to know you're coming. When you get there, they're going to take you right back. So we drive over to the emergency room, exactly like you said. As soon as we said, who, why, who we were and why we were there, they took us straight in, you know, and got right to fluids, blood work, calling up to the endocrinology, the Children's Hospital, and, you know, they give her some long lasting, they didn't give her any fast acting, but they did give her a shot of Lantus. I think there that quickly, yeah, wow. Like, within, like, I don't know, probably that, like, the first hour

Scott Benner 17:01
and you in the walk in clinic, this is what you thought. But we're hoping it wasn't. Is that correct?

Kristen 17:07
Yeah, yeah, because I had Googled it, and then I was like, Yeah, you weren't shocked. My husband was, and it was a big shock to him, like he wasn't expect, you know, you know, you don't expect it. I don't think ever. No, of course, not something that, until it's on your radar. You don't, you know, not something you ever think about. Did

Scott Benner 17:28
you not share with him on the way there, when we

Kristen 17:31
pulled in the parking lot, he was like, Don't say that, which I totally, I mean, totally get Yeah, you don't want to think about it as being that way. She was not in DKA, but probably, if we had waited until the next day, her labs were really borderline, that she was very close to could

Scott Benner 17:52
have been it, yeah, well, it sounds like we were, yeah. It sounds like she was close, but then they'd get her in and out of there pretty quickly.

Kristen 17:58
No, so then we got transferred to the children's hospital by ambulance, and we stayed three days. I think it was there,

Scott Benner 18:09
okay, yeah, and what? And was there, like, education, there stuff like that,

Kristen 18:14
yeah. So then they had CDE, what do they call them? Now, I don't even know. CDE.

Scott Benner 18:19
CDC. CDE. E, C, S is, yeah, yeah. I got it

Kristen 18:24
something like that. You know who I mean there, my husband went home to the other kids, because it was like, at this point, we'd been at the other hospital all day, almost, and it was like, 10 o'clock, I think, when we got transferred, because they we had to wait for the ambulance. So I met the endocrinologist, and then the next day they came with the educator, started coming, and then she really perked up. And we were there for a couple days. And we left with a libre because at the time, our insurance was not super great. And so,

Scott Benner 18:56
oh, so, so you're listening. You left the hospital with a CGM. That's pretty terrific, honestly,

Kristen 19:02
right? Yes, and they would have the the endocrinologist office would have preferred Dexcom, but

Scott Benner 19:07
that's what your insurance covered. Yeah. Okay, and so now you're home and you have, Jesus, did you have? You did, right? One of your kids was barely two. Your youngest was like two at the time, right? Yes, okay. You have a four and a half year old with type one, a two year old back then, a seven year old and a 10 year old. And your husband, I assume, works all day, not home

Kristen 19:31
at the time. He was actually working from home only,

Scott Benner 19:35
okay. Oh, was this COVID Or No?

Kristen 19:39
No. This was that job that we went to Arizona for, it was a strictly work from home position, so he was home with me.

Scott Benner 19:47
You didn't mention that before. I heard Washington before, but not Arizona.

Kristen 19:50
When we took that trip to Arizona that we got back from that she was sick. I

Scott Benner 19:54
see, I see, okay. So you guys are at least in the house together. Are you guys handling it well? Did he stay shell shocked, or did he pull out of it?

Kristen 20:02
I feel like, just, I don't like, the first two months are just like a blur of terrible, no good. Feeling like, how am I gonna How am I gonna sustain this long term? And looking back, it's just the, like, the shock of it all. I don't know that people can be more sensitive, but she's on a she's on Omnipod five right now. Anytime that we've switched back to MDI, and you give her Landis, she gets really low all the time on it, like you can cut it back. And she's high during the day, but as soon as she goes to sleep, she gets really low.

Scott Benner 20:38
How come? You bounce back and forth last

Kristen 20:41
summer swimming every single day that the Omnipod fell off in the pool. She was like, I don't want to put a new one on. I want to go. I want to just take shots. And I was like, okay, okay. We did, like, a month, and it was horrible. And it was like, we're gonna go back on the pump.

Scott Benner 20:58
I didn't enjoy this, did you? No, let's go, yeah. But I want to go back through the more like, kind of like personal psychological stuff, really, because you said a couple times you felt like you just couldn't handle it. And I'd like to hear more about that. What happened in the beginning? How did it build? Where did you kind of come undone? The contour next gen blood glucose meter is the meter that we use here. Arden has one with her at all times. I have one downstairs in the kitchen, just in case I want to check my blood sugar. And Arden has them at school. They're everywhere that she is. Contour next.com/juicebox test strips and the meters themselves may be less expensive for you, in cash out of your pocket than you're paying currently through your insurance. For another meter. You can find out about that and much more at my link, contour next.com/juice, box contour makes a number of fantastic and accurate meters, and their second chance. Test strips are absolutely my favorite part. What does that mean? If you go to get some blood and maybe you touch it, and, I don't know, stumble with your hand and, like, slip off and go back, it doesn't impact the quality or accuracy of the test. So you can hit the blood, not get enough, come back, get the rest, without impacting the accuracy of the test. That's right, you can touch the blood, come back and get the rest, and you're going to get an absolutely accurate test contour next.com forward slash Juicebox. You're going to get a great reading without having to be perfect. This

Kristen 22:37
is where my husband, like says that I'm a rule follower, which I very much am. But I realized after a few months that the endocrinologist office, they're like, super well, exception of one person, are really nice people. They'll let your kid run like, 300 and be like, Oh, it's fine. And I realized that listening to you, I'm not saying I'm doing a great job right now. We're, like, living in a dumpster fire, but at the time, I was like, Oh, I don't have to call them every time I think something needs change. I don't have to tell them everything I'm doing, because their advice isn't always helpful.

Scott Benner 23:13
Because they'd be okay. They'd be okay with a 300 blood sugar. Yeah. So, okay, okay,

Kristen 23:19
it was only a little while, right? You know,

Scott Benner 23:23
so you you're listening to them in the beginning, yeah? And

Kristen 23:27
because you know that's what you think they know more than you, because you have no idea, and you've just been thrust into a situation that you like are totally blindsided by, right? And then one day, you wake up and you're like, I I'm gonna be okay. We're all gonna be okay. She hasn't died. We haven't killed her. Take a deep breath and, like, step back almost a little bit and look at the bigger picture of what's going on, and it's gonna be okay. And so

Scott Benner 23:57
that's what happened to you. You You gathered yourself, and you were like, there's got to be better information than what I have.

Kristen 24:03
Yeah, and I don't remember where I saw, you know, in what you know, you know, as Facebook, you find a group. I was like, mom's, I don't know, I won't name names, like, you know, some group, and then someone mentioned you and I was like, oh, that sounds interesting.

Unknown Speaker 24:17
Okay, so how

Scott Benner 24:19
long was that time? Kristen, like, between diagnosis and, like, coming out of the cloud at

Kristen 24:24
least a month or more,

Unknown Speaker 24:25
that's not bad at all. I

Kristen 24:26
think I found you, like, three weeks in maybe, okay, here's the hole where we circle to before she got diagnosed. We got back from that trip. We already had a trip where we're gonna pull our RV trailer, and my husband's family had moved to Texas, and we had this six week RV trip planned to drive to Texas and back, and we still ended up going, but we didn't take the RV and we stayed at hotels because it was like, the spacing of our trip to take the RV was a little funky. And we were like, We need to be able to just stop. Wherever we are if we need to, as opposed to making sure we get to our RV reservations. Okay, like a month, three, four weeks in diagnosis, we drove from Idaho to Texas, and it actually went pretty well. We were I was terrified, but I think it almost instead of being able to be like, at home wallowing in our Oh no, it forced me to, like, just deal with it in life and be like, okay, we can return to life, and we can have somewhat sense of normality if we just get back out there and do it right.

Scott Benner 25:38
So you just like, well, that's great. So you're like, I'm gonna go try something. It worked. Like, and you even went on the one trip and just kind of left out the RV part, but you still win. Yeah, all right. And then yeah, did it again. So you're building some confidence. You're like, okay, like, that worked. Let's try something else. And that works, so great, and we'll keep moving. Like, when you get to the Facebook group for the podcast, like, what is that like? Because you've only had it's only three weeks, but you've had this direction for three weeks now you're seeing people speak another way. Is it hard to take in new ideas, or are you looking for them and welcoming them? No,

Kristen 26:15
I was looking for them, and I was like, wow. Like, I can't remember what the first podcast I listened to us, but it was one that, like the beginning series once, and I was like, Oh, this makes so much more sense than what they told me at the doctor's office. Like, if your kid is eating and then eating more, that's not stacking, like, if you don't give them more insulin for the more food they eat, they're obviously going to go high.

Scott Benner 26:39
Okay, so that that's the first thing that threw you off was the don't stack insulin thing,

Kristen 26:45
yeah? And I was like, Well, you know, thinking, what if she's eating more? How is that stacking? You know? But I really came into it with no idea of any of it, you know. So the notes you take, what they tell you, and you're like, Okay, this is what they said. So it must be how it is. And then you're like, oh, but these other ideas make way more sense in reality. Does

Scott Benner 27:09
it help to see other people doing it too, so that you can kind of make the leap?

Speaker 1 27:14
Yeah, I think so. Okay, be under this is

Scott Benner 27:21
that the four year old? Yes, okay, I was hoping

Kristen 27:26
he's gonna go read a book under his blanket. Nice.

Scott Benner 27:28
That's a good plan, actually. Okay, so you you find other information. The first thing that strikes you maybe is like, just because we ate at 9am and I gave insulin, doesn't mean that at 1030 when more food comes, I don't need more insulin, right? That's something,

Kristen 27:47
you know, because they're Yeah, because, you know, they're very much like, Oh, if you gave insulin, don't but they those first couple weeks, they don't explain to you that, you know, food needs insulin. They're just like, Oh, if you gave food down, they wanted, like, a really set meal schedule, like, she could have breakfast and then, you know, a snack, and then lunch, and then a snack, and then dinner. And it's like, get her started on insulin the first week or two home, and she's just ravenous. Yeah, it's like, how are you I can't keep her too. Like, free solid meals and two snacks. She thinks she's dying. She's literally hysterically hungry,

Scott Benner 28:23
and you're telling her, no, no, no, we're not gonna eat for three more hours. Yeah. And

Kristen 28:27
then I was like, this is not gonna work. This is not working

Scott Benner 28:31
well then. But why does your husband call you a rule follower? Because it looks like you, you broke out of that pretty quickly.

Kristen 28:36
I mean, like in in general, in life, okay, yeah, in general, did

Scott Benner 28:41
he want you to go away from the rules from the doctor's office? No, no, I

Kristen 28:46
don't. Honestly, I'm the 90% primary caregiver of diabetes, right? Okay? Like he's a really heavy sleeper so he doesn't hear alarms at night. And you know, you should

Scott Benner 28:59
tell him you're a heavy sleeper. See if you can get him promise

Speaker 1 29:02
I am very much not no, no kidding. You very light sleepers pop right up. Yeah, yeah.

Kristen 29:08
I have to be, like, fully exhausted to not

Scott Benner 29:13
to sleep through, yeah, yeah. Tell you what, since the algorithms, I'm okay now I can sleep. Yeah, it doesn't feel the same to me anymore, like I don't sleep. Yeah, it'll feel like I'm sleeping through fear, if that makes sense,

Kristen 29:28
yeah, I totally understand that. Yeah, I've

Scott Benner 29:31
never been at war, but I imagine that people with diabetes, kids with diabetes, sleep like they're they think somebody's about to attack all the time. You know, I'm saying, so, yeah, okay. So I'm so sorry.

Kristen 29:43
I likened it to, like, having a newborn baby without the good sides, like you have it wakes you up at night. It, you know, like, I don't know. I had postpartum anxiety after the last one when I realized what it was, but it was also like, straight into COVID. And then I was like, oh. I feel like the bad anxiety. That's what's wrong with me.

Scott Benner 30:03
You had this after your after your last baby. Yeah, okay. I

Kristen 30:07
realized it was, like, postpartum anxiety. And then, I mean, not that I was immediately fine, but once I realized it was anxiety, like, I was like, Okay, I'm feeling anxious, like, deep breath and like, I could work through it, but I feel like that anxiety you get, like, I had that after she was diagnosed, too. It was like you're laying there, like, is she gonna go high? She's gonna go low?

Scott Benner 30:31
Yeah, just the unknown, constantly being on top of you, yes, yeah, yeah. I understand it's a

Kristen 30:39
parent you want the very best for your kids, and you're like, am I failing you? Am I doing the best I can? And, you know, I'm not always the best. Sometimes she's high. I'm pretty sure she had, like, a really long honeymoon, and as she's coming out of it, like

Scott Benner 30:56
you're starting to see the full impact of it. Now, yeah,

Kristen 31:00
we've, we've had some ugly numbers lately. But, you know,

Scott Benner 31:05
I just what's that look like when you say ugly numbers? What? What numbers you talking about?

Kristen 31:08
Like, running in the two hundreds for a day, an hour a week, a couple hours in the day, a couple hours like, you know, mostly post meal. And I've adjusted her carb ratios.

Scott Benner 31:23
What's your level of anxiety and comfort now? Like, do you feel better?

Kristen 31:28
Yes, yeah, I've calmed down. I guess you could say a little bit. And I realized, you know what? Like, I don't want her to run high long term, but I don't need to freak out. If she's running a little high, just give insulin, work through it. I have a love hate with the five. Sometimes think about changing, okay? Something else. Thought about looping, because my husband could handle the you know, if we needed to change stuff in I don't know. I haven't looked that much into

Scott Benner 31:59
it. What's everyone see last time it was 7.2 okay, she

Kristen 32:04
has an endo appointment tomorrow, and it's probably going to be right at that seven ish. When she was MDI, she was in the sixes, but she also had a lot of lows when we were MDI.

Scott Benner 32:16
And you think honeymoon as well.

Kristen 32:19
Yes, they she definitely, like, even the endocrinologist, because we see, like, a PA, and then once a year, she sees the actual endocrinologist. And he was like, in December even, he was like, wow, she's like, been honeymooning this whole time, off and on and out. You know? I was like, Yeah, six ish, once I feel like I'm homeschooling her because I don't trust the school nurse.

Scott Benner 32:46
Okay, all right, all right. So she so she'll still be with you, is my point. So now, as the as the as the honeymoon wanes and you get back into it like so you're pre Bolus in your meals. Yes,

Speaker 1 32:58
that's something we struggle with? Okay, well, that's

Scott Benner 33:02
probably where I'm working on, yeah, I would imagine that's where some of your issues are coming from. Most of our problems are coming from. Okay, what? What stops you just being busy with all the kids, yeah?

Kristen 33:13
Or she just, like, I give her insulin, and she, you know, they want to run outside. So they all just start scarping down their food and take off. So

Scott Benner 33:23
she eats it real quickly before the insulin can even get working, yeah? But then runs around, and then there's that to contend with as well. Yeah, all right, well, I'm sorry you were gonna get you were gonna just

Kristen 33:33
had our church camp, so like the first two days, so like the first night from all the activity just absolutely in the basement. The next day, I adjust her settings so that she would run a little higher, so she'd have like, a ton of lows. Because, I mean, like, I barely see her, she has her phone, like she was low. I'd call her and she'd be like, Oh, I'm eating glucose tab small. I'm fine and so, but then at night, when she laid down, like, just in the basement.

Scott Benner 34:01
She got really low. Then, after the running around all day, yeah, so

Kristen 34:06
then I just adjust, adjusted her targets to higher on the five and, you know, then the opposite happens, then

Speaker 1 34:13
she got high afterwards. Yeah, well, which, obviously, I

Kristen 34:17
mean, the lack of, you know, if it's cut the basal, then it's gonna gonna have

Scott Benner 34:21
highs later, yeah? Like, culturally, I it's not something I'm aware of. So let me make sure I understand it. There's a camp that goes on for a couple of days. You're there, but you really don't see her. Yes, she's just off messing around with the kids. My statement

Kristen 34:37
about children, children running feral, yeah, like 60 kids, and they're just this property is, you know, fenced essentially, and they're just everywhere. They're

Scott Benner 34:47
everywhere and there's food, and it's not timed and like, it's not like there's like, they can grab stuff if they need to, or, no,

Kristen 34:55
no, it was meals, okay, but they're just all over the. Place, right? So

Scott Benner 35:00
a lot of running around, yes,

Kristen 35:03
lots of running around Gaga ball, which some wild game that children love. Gaga ball, yeah, it's literally like an octagon for children. And they have a ball and they have like sides, and they like dodge ball, in an octagon is the closest thing I can

Scott Benner 35:24
use to describe it. You're describing MMA dodgeball to me, like a

Unknown Speaker 35:28
very wild Yeah,

Scott Benner 35:29
and where are you doing? Yeah,

Unknown Speaker 35:31
during that like, they're

Kristen 35:32
like, Look mom. Look Mom. I got bloody knuckles, and my oldest daughter is great about checking on her.

Scott Benner 35:41
You guys are camp directors, yeah,

Kristen 35:43
so this is for our church. So it's not like, it's not random people we don't know or anything. It's all people we know,

Scott Benner 35:50
right? But you guys are all doing the things, and their kids are off, yeah, okay, and, but still, she makes it through the day, no problem. But then there's lows, like, late and lows later at night after she lays down, I imagine,

Kristen 36:02
yeah, yeah, that's where they're coming in. How long this is that? Like, 48

Scott Benner 36:08
Okay, have you tried giving her something before she goes to bed to help hold up her blood sugar? Yeah?

Kristen 36:14
But she doesn't always, you know, I don't know. Doesn't always. I don't at that point, the first night that she was low, I hadn't switched. Like, you know, it's one of those things, like, I laid down. I'm like, Oh, I made a run higher before bed, she had had a snack. But I think the algorithm responded to her rising blood sugar aggressively. And then, yeah,

Scott Benner 36:39
my point wouldn't be so much to, like, drive her blood sugar up, just maybe protein, yeah, protein, or something like, like, maybe with a little bit of fat in it, or something to slow her digestion down, to hold what's in her stomach there while she's sleeping, to get through that low part. Kristen, do you mind, like, some reflection from me? Oh, no,

Unknown Speaker 36:55
that's fine, okay, I'm good at that.

Scott Benner 36:57
It feels like everything's happening two beats ahead of you. Does that make sense, right? Yeah. And so you need to move your effort to where it's valuable, so that you're making decisions that impact instead of responding to problems. If that makes sense, does that make sense? No, that totally makes sense. Yeah. Yeah. So your efforts there, I think it's just slightly misplaced on the timeline of events, if that makes, I mean, that's the way I think about it, exactly, totally okay, yeah. Like, how do you handle that with all I mean, Jesus, and you're gonna be pregnant now.

Unknown Speaker 37:35
Oh, it'll be fine, yeah,

Scott Benner 37:37
you're, you're like, I don't care. It'll be a none of this matters. No.

Kristen 37:39
So that was, like, the first day, and then the second day, I was like, oh, duh. Adjust her target so that it's not correcting, you know, 110 110 make it, you know, either 110 120 or 121 20, and then

Scott Benner 37:54
that kind of makes it less aggressive. She can run around more. Doesn't

Kristen 37:57
get the second day. During the day, I adjusted it, and then I adjusted it to, I think, 121 30 at night, and then she was running, like, in the 120s and I was like, Okay, it's gonna be, I can sleep, yeah, but it's like, sometimes, you know, my brain is like a lagging Windows computer. And it was like, oh, duh, I changed some things. We're not going to have these problems like you're saying, like reacting sooner, as opposed to reacting right?

Scott Benner 38:25
Well now, you know, though, I mean, the next time you went to a camp situation, I bet you would do it going into the first day, yes, yeah, yeah. Also, I mean, that's what it is, really. You just got to figure things out as it comes. And the 70 1c first of all, nothing wrong with it, no, if you could work on just meal timing, you could probably see a six, you know what I mean, yeah.

Kristen 38:49
And since last year, like, last year, she was averaging, I think, seven units a day, okay, like, that was her, that was her average on the five, like, seven to eight units a day. Yeah, she's little, she's Yeah. And now she's averaging like 10 to 15, or, I think she's been using like 13 to 14,

Scott Benner 39:09
yeah. It's gonna Yeah. She gains weight. You're gonna see it go up, yeah.

Kristen 39:13
And so, you know, slowly adjusting to those changes and realizing, okay, you know, when you go from like, both seeing a half a unit is a like a lot, to then, like, one, and, you know, like, for other people, these are tiny numbers, but like, she's so tiny. And now we're like, you know, I bowl this for a meal, and it's like, two units. Like, wow, that's so much. But in reality, it's

Scott Benner 39:37
takes you a little time, yeah, she grows. It takes you time to get accustomed to it, right?

Kristen 39:41
Yeah? Like my mom, she's like, Are you sure? Are you sure? Like, when she watches her, like, what the pump is saying now, she's like, Are you sure? And I'm like, That's not sure. Yeah, be okay.

Scott Benner 39:53
It's a common issue, yeah, especially when you start out with very young and very small and you. Know, honeymoon on top of all that. And then those numbers feel big and they're scary. And my

Kristen 40:05
dad has type two. So my mom, you know, her knowledge of it comes from the type two side. And so, you know, when she was first diagnosed, she's like, Oh, what about like, like, yeah, you can change it with diet. You can affect blood sugars with diet. But mom, it's not, it's not the same as type two. You're not gonna change at all with diet. Oh,

Scott Benner 40:24
doesn't work that way. Oh, you're getting the like, can't we make this go away if she eats differently from your mom? Yeah,

Kristen 40:30
yeah. And she made, you know, it's like, from a place of, like, misunderstanding and love, of course. That makes sense, right? Of course. Yeah. So, like, my dad lost, you know, 75 pounds or something, and he's really skinny now, and his numbers are better. And it's like, that's good, but she gotta, like, it's not the same might have the same name, but it is not the same thing, right?

Scott Benner 40:52
She's looking, she's looking at that. And how old is your mom, too?

Speaker 1 40:57
Um, 60. Okay, two. Yeah. So

Scott Benner 41:00
she she's trying to help, but she doesn't quite understand. Yeah,

Kristen 41:03
how old is she? Oh, you

Scott Benner 41:05
don't know how old she is. She's probably 59 actually. Okay, I love that. You don't know how old your mom is. It's fantastic. My

Kristen 41:13
dad is 62 that's where I'm confused. Okay?

Scott Benner 41:16
And how long did he have type two before he made some changes for himself and worked things out.

Kristen 41:23
He lost a lot of weight, probably, like, 10 or 12 years ago, and he was doing really good, like, with his diet. And then he's like, Well, I'm skinny, and he kind of slipped off the eating good wagon. And then his blood sugar's high, so he's still skinny, but then he had high blood sugar because he wasn't eating right. And then, I don't know what it is. Now, I tried to convince him to try CGM, but he was real stubborn about

Scott Benner 41:49
it. Yeah, it's a shame they're very helpful.

Kristen 41:53
Yeah, it runs in my dad's family. And my uncle, he was in denial for years, like quite large and he, in the last year and a half, he has a CGM, he started taking insulin, like, just long lasting, I don't know what kind he's, you know, doesn't communicate well, but, and he also got, I think I said that he got a CGM, and he actually is, like, losing weight. I haven't asked him. I think he might be on a GLP one too. Oh,

Scott Benner 42:20
good. Well, listen, I mean, with what you're talking about, with your dad's background, and you have PCOS, you you're on the lookout for yourself, I imagine too, yes,

Kristen 42:29
once this child comes forth, I will be losing the weight that has been lingering.

Scott Benner 42:37
Comes forth. Is that how? Yes, that will happen magically with with music and lighting and everything. No,

Kristen 42:45
no. I had my own other health struggles. My first child, I had preclaimed, sure, really bad and almost died, literally. The second one, I had very mildly and had no problems. After with my type one, I had postpartum hypertension, and with the fourth one I did, so also, so, yeah,

Unknown Speaker 43:04
yeah, you okay, yeah,

Kristen 43:06
I'm fine. Do you ever worried about it?

Scott Benner 43:08
Yeah, do you ever like stop and think about yourself a little bit? Yeah, I do. What do you come up with when you're thinking,

Kristen 43:16
Oh, I'm crazy? Totally obviously.

Scott Benner 43:20
Why do you think that I'm clearly

Kristen 43:21
crazy?

Unknown Speaker 43:25
Why do you think that I

Kristen 43:27
think people think that about me, I don't feel crazy. I mean, everybody feels a little crazy sometimes. I mean, there's days where I'm like, I am crazy. What am I doing to myself? But other days I'm like, You know what? Life is good, and life is what you make of it so,

Scott Benner 43:42
you know, no your best.

What would happen if another problem popped up? Would you be like? Do you think that would be too much? You think you could do it?

Kristen 43:53
I think I could do it. I mean, I might have a brief breakdown, definitely. You know, I think we're all entitled to a breakdown when life throws you major unexpected curves, but overall,

Scott Benner 44:05
gotta you try to pivot and move with it. Yeah, yeah. Go back a little bit for me, after you find the Facebook group, you listen to the podcast. I always wonder how people absorb it, like, because in my mind, like, I want you to listen through the bold beginning series in the beginning, and then I you know, if once it makes sense, I hope you move on to pro tip and other stuff like that. But did you actually do that, or what? How did you manage it?

Kristen 44:30
I'm pretty sure listen to all of bold beginnings on our long road trip. I think the one my husband was like, What are you listening to? And one that definitely stands out is that I played him, what is it? But whole adjacent, and he was then he was like, really, like, what are you listening to? But my kids were like, Mom, Mom, can we listen to that guy? That was great. And then the pro tips, and then I've jumped around all over, like, most of the time I listen when I'm mowing the. On. I think the last one I listened to was about, you're talking about, um, she like a child psychologist or something, uh, Erica, one of the last ones. Yes, I've listened to some of the ones with Erica

Scott Benner 45:16
resilience. Yes, yeah, we just put up that resilience series. It's only two episodes for now, but, Oh, see,

Kristen 45:23
whatever was right before that, I don't know, my brain is lagging. Stop.

Scott Benner 45:30
Let's stop all this for a second. Tell me about your day. What time does it start?

Kristen 45:34
Oh, we're not morning, people. Two of my kids are out of bed right now, and it's 950 in the morning, but we also, my husband took this morning are they're not really related to us, but our niece and nephew to the airport for them to go back to the East Coast. They were visiting for two weeks, so we've had a very off and jam packed schedule of them visiting and staying up late with them, but we are up and moving around 10. We do school because I homeschool them after breakfast. So we get up, we have breakfast, we do school. Lunch, they do their chores, then they get free time, and they're usually done with school by right after lunch. Then they run around and do their thing, which lately has been tadpoles. They got a bunch of tadpoles, and now they got little baby frogs, and they're super excited about that. With

Scott Benner 46:23
the kids spread out in age. Though, do you do kind of school them together? Or how do you accomplish that? The oldest

Kristen 46:28
one is fairly independent, so I just check her work and make sure that we're, you know, she's understanding everything. Well, the nine year old, I do school with him. I sit with them and we do it together. And then my little one's just in kindergarten, and her and I sit down together, and it's, you know, pretty basic math and language arts for her. So I sit with those two. That takes an hour, hour and a half the two of them. So three hours, right with both of them, and little guy just plays. Pretty happy little guy. I don't

Scott Benner 47:02
know anything about this. How do you know what to talk to them about At what ages? Is there like a curriculum online you can get or how does that work?

Kristen 47:09
There is the world of homeschooling is vast, and there is curriculum under every genre you can think of, from Christian to secular to like Charlotte Mason is like all book based, and you just living. You just education type, yeah, so you can buy there's online programs where it's all on the computer, just whatever is your favorite, I guess, whatever works for you. And I do a mix of three or four different things that I put together that you liked, or what? Yeah,

Scott Benner 47:45
did you go to college? How did you like? What? What was your schooling like?

Kristen 47:49
I did two years of college, okay,

Scott Benner 47:52
what were you working at?

Kristen 47:53
I was going to probably nursing school, and I got married, and then I dropped out, okay? And then I had kids. Gotcha, I actually right before, if I got diagnosed, I had signed up to go to school to be a surgical tech, and I obviously that didn't happen, because I was, like, staying home with her and making sure she's fine is going to be what I do.

Scott Benner 48:17
But when you thought about doing that, was it for like, enrichment? Like, you're like, you're like, Oh, I just want to learn something. I want to go do something. Was it for money? Was it like a calling? What? What had that in your head? I've

Kristen 48:28
always liked medical stuff. Like, I find it fascinating. A good friend of mine is actually a trauma surgeon, and so, like, you know, I just, I don't know. I always found medicine interesting. The human body is amazing, and just out of personal interest, I guess, like, I thought it would be, that would be interesting, something you

Scott Benner 48:47
would like, okay, but now your husband, he's independently wealthy, because he's paying for you those five kids and all those chickens, right? Like, or, what is like? What is he What kind of work does he do? Forget what he does exactly.

Kristen 48:59
He's in technology. He took the job he has now because, well, he's very happy there, so it wasn't the only reason, but they don't, they pay all your insurance premiums, and so we don't have to pay premiums. And that was a

Scott Benner 49:16
big weight loss, a big draw, yeah, no, I would imagine, right?

Kristen 49:21
Yeah, so, but he loves his job. It's great. He's very happy there. And I'm pretty sure they're happy with him, because cool, gets a lot of work done for him.

Scott Benner 49:32
Excellent. No, it's fantastic. And he's and he gets everyone works from home now. So, yeah, he doesn't, no, he goes, now, he goes in,

Kristen 49:39
now, he goes, he goes in. Now that's okay.

Scott Benner 49:44
When the kids get older, like, you keep doing this, like, through high school years and etc. Like, is your expectation? Like, that they'll be able to get a job in technology, go to college. Like, be homemakers themselves. Like, like, Do you have a feeling for what? Direction they're moving in, or you just, it's a wait and see. For me,

Kristen 50:02
it's a wait and see. Because I don't, you know, you got to find what's your passion in life. I grew up doing a mix of private school and home school, and so, like, I mean, my senior year of high school, I just went to college. Well, I didn't finish college. I, you know, it was, I got into college and I was going to college. You have to wait and see whatever. You know you want to go into the trades. Go into the trades. You want to go to college. Go to college. What? What do you want to do when you're old enough to know what you want to do? Right?

Scott Benner 50:34
Did you find college manageable coming out of homeschooling?

Speaker 1 50:38
Yes, you did very okay, yeah, and

Scott Benner 50:41
your mom not did this for you growing up. She did, yeah, yeah. How many brothers and sisters do you have? One brother and one sister? One, just three of you. I see. What can I ask? What they do now, like, vaguely, my

Kristen 50:55
brother owns a trucking company in my sister is finishing her degree in she had a double major, and I don't know what the other one was, but the one is in Spanish, and she was getting her teaching certificate

Scott Benner 51:11
for her. Good for all of you, that's fantastic. Yeah, really nice. She

Kristen 51:15
Yeah, she was working and going to school online, so she's been

Scott Benner 51:21
just getting that all together. Do they have any kids? Do any of their kids have auto immune issues? No.

Kristen 51:26
My sister has one daughter and just a peanut allergy that we know of. My brother has three children and not that we know of, but his sister in law has type one his wife's side.

Scott Benner 51:40
Okay, how about on your husband's side? Is there any auto immune over there? Not that we

Kristen 51:45
can think of. Okay, but my, my paternal grandfather, had Addison's disease.

Scott Benner 51:50
Okay, well, there's one, and they said

Kristen 51:53
that he's tight. He he passed away in like 2001 they said that he was type two. But all I remember from my childhood isn't being really low. A lot blood sugar is low. And yeah, so they said he was type two, but I remember him having lots of lows, and he took some kind of oral medication, but no one, I mean, nobody knows what it was. Now, no one can remember, remember

Scott Benner 52:15
to tell you. So do you see any thyroid, celiac, anything like that going on. Oh, my maternal

Kristen 52:22
grandmother has Hashimotos. Okay, yeah,

Scott Benner 52:26
well, yeah, a lot of it seems like it flows up your line then, and then the Yeah, and then PCOS for you, which sounds like it's been terrible. Did they do anything for that? By the way, have you ever gotten like, help with the PCOS stuff? Or they just tell you to tough it out. No,

Kristen 52:43
I guess I never asked like, I was never like, what can I do? I started taking, like, shortly, when I was in my early 20s, I started doing a lot of like, research, and I started taking, like, some supplements that helped a lot, like take NAC, and what is that other one? It's in that, oh, the stool, oh my word. What is that stuff called? It's in that stuff that you talk about Arden taking

Scott Benner 53:13
of acetal. In acetal, maybe, yes,

Speaker 1 53:16
that, and that helped a lot,

Scott Benner 53:21
but you stopped taking it.

Kristen 53:23
Well, you know, when I remember I've been taking it lately. You

Scott Benner 53:27
know what? I realized this whole conversation I had

Kristen 53:30
my last kid, since I had my last kid, it wasn't painful, it was just super irregular.

Scott Benner 53:34
I realized that your kids are all three years apart, except for this last pregnancy, that was five. But that the the but the diabetes came a couple years ago, so the diabetes paused. Your pattern is what I think happened, yeah, yeah,

Kristen 53:49
after the last one was born, I, you know, didn't I was breastfeeding, so it was, you know, I didn't have a period for a while. When it came back, it was actually fairly regular. She got diagnosed, and I didn't have one for like six months. Like, the stress just

Scott Benner 54:04
threw you off. Oh yeah. But it also probably threw off your relationship stuff too, right, with your husband,

Kristen 54:10
oh yeah. Like, she started, she was sleeping in our room, and just, you know, I feel like, for like that first year, just everything is out of whack, yeah, at least for us. And then, like, the second year, like, after her first diversity, then it was like, you know, we all felt like we were living again. I guess, you know, you can kind of turn your focus a little more to just back to life, and, like, you realize you're going to be okay, she's going to be okay. It's all going to be okay, right? And you just

Scott Benner 54:39
get back into it again. Yeah, yeah. Well, I am very happy that the Facebook group helped you and and all that other stuff happened that's fantastic. Are you still in the group? Yes, you are, okay, cool, yeah. Just, I'm thrilled for you, like, I'm so happy that something happened that helped you and, and you know that you you have. There is a resource, if you want to go back to whatever that you're pulling your way forward and getting through it and listen. The other thing is, I'll just tell you, from a person who's been through it, to you a four, five year old, three year old with type one diabetes, is it's hard, like it's really, really hard. It's overwhelming. It's not a time that I remember, even it does feel like you're constantly battling something, and there's a lot of other stuff that you're doing, but you don't quite know that if you're focused on anything, or all of it, or some of it, and it really does get better as time goes on. So I hope, I hope you can, you know, that. And

Kristen 55:40
like, yes. And it's like, at the two year mark, I was like, You know what, we're gonna be okay. We are gonna be okay. But she was, you know, she was four, and she didn't understand, like, why is my mom poking my finger and stabbing me? Like, you know, that's what's happening in her mind. And it's like, just trying to keep you alive.

Scott Benner 55:59
Yeah, it's not a thing. It's easy to explain to anybody.

Kristen 56:02
No, no, no. And then she had a that was the other thing I forgot. She ended up having to have an appendectomy, like, six months in an emergency one, like, thought it was the flu. She's throwing up, really can't keep anything down. She gets ketones, and my husband are like, You know what? We're just going to the emergency room because, like, she can't keep anything down. Obviously, we're not going to get anywhere here. Take her in, and it's her appendix. Same thing, we have to be transferred to the Children's Hospital. The best part of that was the on call pediatrician also was a patient at the same office, and she wrote the orders for admission that I gotta make all the decisions for the diabetes, because if they went off with the current, you know, ratios were at the from the Endo. I mean, she was just low for days like and if they'd given her as much insulin as, you know, the original order said, then she would have just it would have been horrible, but they let me make those decisions.

Scott Benner 57:05
Is it uncommon for kids to have an appendectomy at that age?

Kristen 57:09
I don't know. They didn't act like it was super unusual. They were just like, Oh no, it's definitely her appendix.

Unknown Speaker 57:18
Super interesting.

Kristen 57:22
Yeah, it was like, like, are they more prone? Like, I wouldn't think you'd be more prone to it because you have but I guess your body doesn't fight infection as well, maybe, if. But it's not like she had out of like, her blood sugars weren't out of control. Like, she had fairly good like, in that time frame, her numbers were pretty good.

Scott Benner 57:40
They don't know that. You could blame it on diabetes control, but I'm just appendicitis is less common in young children compared to older children adults, but it can still occur. Young children may not be Yeah, like,

Kristen 57:50
is this the flu? And then it was like, we get to the hospital, and the doctor's like, Huh? He pokes her stomach, and she starts, like, sobbing. He was like, Yeah, we're gonna do an ultrasound. And then when they popped the ultrasound on, it was, you could see it. It was like, Yeah, they did the contrast of, like, the blood flow colors. And it was like, Oh, yes, I see definitely, yeah, I

Scott Benner 58:15
don't, I guess I don't see how type one would have an impact on whether or not you're appendix one, yeah, but it's, I think it's just a random thing. Yeah, that's crazy, though, because I had mine out when I was, I think Cole was like two, so, like, 20 some years ago. But I don't have any, like, medical background to draw from, because I'm adopted, so I don't, I don't know if that's a thing that happened, a thing that happens to us or not, or something like that. You know,

Kristen 58:41
I think it could just be super random. My husband had his out in his 30s. Oh, okay. Oh. I mean, maybe it's a, I think it's just a random, yeah, very well could be all right, one last thing I got to worry about now, huh?

Scott Benner 58:54
Listen, I get if there's other organs I can get rid of, I'd like to know what they are too. I'm looking to slim down. Kristen. Is there anything we haven't talked about that we should

Kristen 59:02
have? I don't think so. Unless you got anything, got any more questions? I

Scott Benner 59:06
don't feel like I do. I'm pretty good with this. Actually, I think I got through what I wanted to pick through your story. It's kind of you to come on in the middle of, like, the summer with all the little kids and being pregnant, etc. You know, I know it's a lot, and it's much earlier there than it is here. So thank you very much. Thanks for having me. No, it's obviously Terrific. Thank you.

Unknown Speaker 59:29
Can you hold from podcast? Wait, wait, I

Scott Benner 59:30
want you to hold on, but I don't want you to hang right up, but like when I stopped, but what were you gonna say? I'm sorry. Oh, I

Unknown Speaker 59:36
was just gonna

Kristen 59:37
say, I appreciate the podcast. And when I do listen, I always get something that I'm like, Oh, I if I apply that here, then

Scott Benner 59:45
gonna work better. That's cool. That's so that's my hope for it really. So that's fantastic. Okay, all right. Well, thank you so much. Hold on one second for me. Okay.

It a huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox podcast. Learn more and get started today at contour next.com/juice box. This episode of The Juicebox podcast is sponsored by the ever since 365 CGM, ever since cgm.com/juicebox one insertion a year, just one, and it has on body vibe alerts you're going to want to go figure out what that means. Your Kids mean everything to you, and you do anything for them, especially if they're at risk. So when it comes to type one diabetes, screen it like you mean it, because if even just one person in your family has type one, your child is up to 15 times more likely to get it. But just one blood test can help you spot it early. So don't wait. Talk to your doctor about screening, tap now or visit screen for type one.com to get more info and screen it like you mean it. 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 on Facebook. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. The episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com. You.