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

#1379 Love At First Slice

Jay is 72, T1D since he was in his 30s.He started out in EMS and nursing and got into teaching. He’s passionate about 504 plans.

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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
Welcome back, friends. To another episode of The Juicebox Podcast. Today,

we're going to speak with Jay, who's had type one diabetes for 40 plus years. He's been in EMS nursing teaching, and he's incredibly passionate about 504 plans. 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. 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, Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. 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/juice, box. The Diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com go up in the menu and click on diabetes variables. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at 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.

Jay 1:52
Hey, Scott, thank you for having me. My name is Jay. I started out my professional career in emergency medical services as an EMT paramedic. I even became a registered nurse while still working on the streets, and then got into EMS education. I realized that Elvis Presley was right with his song cold Kentucky rain, and used my RN to move into a hospital. Worked in neonatal ICU and adult ICU for several years and then move my education forward. And ended up teaching nursing for 27 years with other collateral duties. You know, how employers are they want to assign other duties for you to deal with. And so I ended up on the school safety committee, and that ended up with having to liaison with a middle school next door to us. And so we got into learning about lockdown and all sorts of evacuation things, additionally, because I was halfway good with throwing income paper. I was detailed to writing regulations related to nursing education, and now I currently do some beta testing for HIPAA FERPA, type of agencies on the Apple architecture. How did I get into Juicebox? The podcast, I really got into it for through the Facebook page and my diabetes started in my 30s. I was diagnosed type one after failing orals before they got good lab test to differentiate type one to type two. Went to MDI until about 25 years ago, Doc threw me on a Dexcom CGM, then about 25 years ago, because of hypoglycemic un awareness, and so then my pump journey has gone through animus, tandem pods. I've done clinical trials for several different pumping companies. One of my first was a u5 100 to go into a pump, and that failed because of kept getting the pod knocked off. I'm currently doing the limited release with insolette for the Apple platform, and that is going well, Jake, Jake,

Scott Benner 4:38
and tell everyone you're 45 years old. You got all this done the last 15 years. Right now, you just told me, like,

Jay 4:45
actually, I got it done in five years. My God, we

Scott Benner 4:47
spoke before we started. I know you're 72 you were diagnosed at 30. So were you an EMT before you had diabetes? Yes, you are. That's interesting. Okay, let's learn a little more. About you, and then figure out how you got involved in all this stuff and pick because there's a lot here. Also you, you had me on the first 10 seconds, I was like, I gotta go figure out what cold Kentucky rain is about. Look up. Elvis Presley, oh, don't worry, Jay, searching for his lost love through the cold rainy Kentucky. The song captures the feeling of longing and heartbreak. Is that about, right? But

Jay 5:19
the thing about it was that when you work in emergency medical services and you're outside working on a car crash or something of that nature, and you've got cold Kentucky rain dripping down your backside, it's a an awakening experience that you sort of want to get away from. Hard to focus,

Scott Benner 5:37
too, I would imagine. Okay, so, I mean, let me ask for a second, like, what got you into emergency services originally? Do you remember what your calling was?

Jay 5:45
It was strange. I was studying engineering in the dorm, they put out a notice that said, Hey, why don't some of you students join up with the Red Cross disaster team, and we'll teach you first aid, CPR, a few other good things. And this actually caught my attention. I went down that path, and along the way, was invited to join an EMS education, but got picked up an EMT card in Kentucky. And what was sort of ironic at that time was the TV show emergency playing off of the LA County Fire Department. Was a big TV show. Now it's showing up in reruns. But what was entertaining was that almost every paramedic in the United States was six feet tall, had dark hair and a mustache

Scott Benner 6:43
because of that TV show. You think, Well,

Jay 6:45
I don't know if it was the TV show or if they were. They were that good at picking up what the preponderance of first responders looked like, because it seemed like that, Oh, everybody was handsome

Scott Benner 7:00
and dark and tall and all that. That was it. I can remember one name from one character from that show. And other than that, nothing's coming to my head. But

Jay 7:10
how about Randy man tooth?

Scott Benner 7:11
Why is the word gage popping into my head? But somebody's named Gage? So there was a character named Gage. Okay, that's all I can remember. And but I remember the whole opening and how, like, crazy exciting it was, because it was a lot of, like, the opening of the show. I must have been a really young kid, but was like a first person shooter, almost, camera angle of like, the fire trucks leaving the firehouse at first, and then they, like, pick them up on the street and go through and like, yeah, I remember all that. That's crazy. So you're not sure if the producers did a good job of figuring out what firemen looked like or vice versa. No,

Jay 7:43
but I can say one thing, and this pops up in the Facebook Juicebox page, and that is Medic Alert Notifications. What do paramedics look for? Starting in the 1970s through today, paramedics are taught to look for medical alert jewelry at the neck, the wrist and the ankles, tattoos, because they can be injured read made illegible by road rash. In other words, somebody that got thrown down the sad term, but anything other than a standardized medic tag that has probably the star of life, which is that six pointed blue on white, see it on the side of an ambulance a lot of the time, but things Like the little clip ons to a watch band. Those are not really good because they can be ripped off. The watch band stays. But where did that little metal clip on notice go? And

Scott Benner 8:52
people think, because I've done a whole episode about this with an emergency services worker who said the same thing, like, we don't look at your tattoos, neck, wrists, ankles, and that's what I'm looking for, very quickly. I think that shocked everybody when that person came on and gave that interview, but I had known that because of I'd been a volunteer fireman for a few years when I was young, and I was aware of it. So I keep seeing people talking about it. I'm like, Look, it's nice. And you know, you might get lucky, like, maybe somebody will turn your arm over to put an IV and it'll say type one diabetes on you. But like, what if that tattoo blends in with everything else or whatnot, and I don't know it's the

Jay 9:29
other thing is, I went back to that night in Kentucky, cold, Kentucky, rain. I'm not gonna see in limited lighting. A tattoo. I'm gonna be feeling in the dark. Yeah?

Scott Benner 9:44
I mean, it makes sense when somebody breaks it down for you, you know, but sitting in your bedroom with like a giant tattoo on your calf, you're like someone will say this, but you know, not the case. So, necklace, bracelet, anklet, right? That's what you should be wearing.

Jay 9:56
If insolent is a sponsor this. A good one. OmniPods need to say insulin pod clearly on the outside of them,

Scott Benner 10:05
because they are used for other things as well. No,

Jay 10:08
because if I'm feeling this thing in an emergency situation, working as a paramedic, if I feel this thing on a person's arm, it would be nice if it had in clear block letters, insulin pop.

Scott Benner 10:22
I wonder if people would revolt if they started writing on the pod. It's interesting. You know what I mean? Because, for because the great I mean, for your perspective, it makes 100% sense. And then somebody else might say, I don't want that. To tell people what I'm I don't know. Boy, that'd be a hard one. But I take your point. You do this, you kind of work your way up through the ranks, and then you complete your RN while you're doing work on the road. Yes,

Jay 10:47
how was that? That was great, because I'd already been to paramedic school. Was already working with the paramedics. Matter of fact, I remember one night we made a an accident with injuries. Car was in a creek bed, and I'm hanging upside down, more or less starting an IV in a person waiting to be extricated a car down in the creek bed, but not in the water. And one of my nursing instructors had stopped also, and comes over and says, I'm a nurse. May I help? And I called her by her first name. She said, Oh, it's you. What are you doing? I said, I'm down here starting an IV. She said, Well, good. I don't have to worry about you for IV check offs in two weeks because we hadn't covered them in nursing school yet. But I

Scott Benner 11:37
guess if you could do them hanging upside down, I'm going to assume you can do it that,

Jay 11:41
and then going to neonatal ICU, starting IVs on premature infants, was just a carryover. It micro. It was a micro miniaturization. The one thing that was interesting there was when we had infants of diabetic mothers. This was so far back that the way that blood sugar was checked on an infant of a diabetic mother was with the old pink labeled bottles, I believe the manufacturer was Ames dextro sticks. And we would do it. We would cut those in half to save resources and do a heel stick. And then it was a color metric. We had to eyeball it before meters and all that other good stuff came out. You got

Scott Benner 12:29
to grow up with it from a professional standpoint. But did you ever think you might get type one? Was it in your family? Or was it a surprise?

Jay 12:37
Surprise? Well,

Scott Benner 12:39
it's interesting. Do you remember your diagnosis at all? It's

Jay 12:42
going to be strange.

Scott Benner 12:43
Oh, really, you're going to tell me a story that I'm not going to have heard before. I hope so good. I

Jay 12:48
hope this is one you haven't heard before because of my nursing background. When the IV fluid, dextrose gets spilled on the floor and it isn't wiped up, well, you'll start noticing black spots on the floor. I started being able to associate hold it. We spilled dextrose on the floor over by that bed in the intensive care unit, and now they're black spots. We must have spilled some dextrose when men go walk up to the commode in their home and let rip with a stream of urine. There's a splash, and I started noticing black spots around the commode in my residence. Get out of here.

Scott Benner 13:31
There you go. Jay way to come with a story no one's ever heard. Listen, I've never heard that before, and I have to share with you, and perhaps you saw this, but in the Facebook group last night, members shared that they were low in their car, and very uncharacteristically, just didn't have anything to help themselves with, and kind of panicked a little bit, and looked around their car and found, I'm not kidding you, it must have come out of like a shopping trip, a Can of, like condensed chicken noodle soup in their trunk, and she popped it open and drank it down and grabbed her blood sugar and brought it back up. I missed that one, and I thought, when I read it, I thought I didn't imagine people would ever like continue to be able to tell stories where I was like, I've never heard anything like that before. Found super nerd trunk, actually, if she's listening, you should come on the show. I I'd love to talk to you, hear that story first person.

Jay 14:27
And to go with that, because I was teaching endocrine nursing at the time, I was working with several of the meter companies, and just happened to have in my briefcase, backpack, whatever it was I had a couple of meters at home, and I said, black spots on the floor. I'm gonna do a finger stick.

Scott Benner 14:50
Are we calling the black spots like mold from the sugar? Do you think? No,

Jay 14:54
they were actually oxidized glucose. When you look at the oxidation of glucose. Yes, it does leave behind a cup a stream of or layer of carbon molecules as the water evaporates. That's nuts.

Scott Benner 15:07
What was your blood sugar when you tested? Do you remember over 400 so do you diagnose yourself right there with that tester?

Jay 15:16
Well, the other part is that my wife is also a registered nurse. And we looked at it, looked at each other, and said, Yeah, we got to see Doc, our family practice, Doc, you do what we were like. And so, yeah, it was self diagnosis, but he had to confirm it. So that insurance and all the other

Scott Benner 15:40
Yeah, sure, but you you knew, though, right then and there? Yeah, yeah,

Jay 15:44
it was, you know, the light got turned on

Scott Benner 15:47
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Jay 18:10
meet your wife at work. I was working as a medic at the time, and one of her co workers had been in a first aid class that I taught, and they had a problem in the food service in the hospital, and they were only able to feed the patients. The cafeteria wasn't open for employees, so her co worker called me and said, This is before the days of pizza delivery. Would you bring us a pizza? So we had love at first slice. First time I laid eyes on her was looking through the lock door of a psych unit. Jay,

Scott Benner 18:46
you've got, you've already given me so many different titles for this episode. I think you said Let her rip when you're talking about paying and and love it first place. I feel like I'm gonna have like, 13 things to choose from by the time we get done with this. But you have so much information in your head. Okay? I feel like I want to fast forward through, you know, you, you know, okay, you found out you had, you had type one. Is that how they diagnosed you? Yes, okay, because

Jay 19:08
I was a little overweight at the time, and Doc put me on Metformin, and it had no impact. Okay, yeah, so he said you, but if Metformin doesn't do anything, you must be type one

Scott Benner 19:20
to have you ever had, like C peptide or auto antibody testing?

Jay 19:24
I've had C peptides to get an insulin pump, okay? And those qualifiedly. And the other part, the antibodies are ambiguous, meaning

Scott Benner 19:37
you don't have any traceable or there's not enough.

Jay 19:40
It's, it's not clear. Oh, I see, huh, but you use insulin. I may be, I may be one of those oddballs that's got both type one and type two.

Scott Benner 19:50
Yeah, it's funny. We used to laugh, like, I've done it, where people were like, I have both types of diabetes. And I can remember thinking, like, you can't have both types of diabetes, can you? Yeah? Now. More and more. You know, at least it's the way they want to talk about it. Maybe just for insurance purposes, I don't know. Maybe it's because of GLP medications that it's starting to come up more. But, you know, they're saying, Look, I have type one diabetes. This is, you know, an immune issue, and I'm really insulin resistant. And if I didn't have type one, you'd say I had type two because the insulin resistance, etc. And it's, it's interesting how they, I guess, how much of the way we think about ourselves, health wise, is dictated. A little bit about the the insurance companies, you know, charting, you know, and what they call things, I don't know, it's a it's a little weird, but so you've been the whole time. You've, you know, basal insulin. You're bolusing for your meals. You don't do that. Your blood sugar gets very high, etc, so on, right? Yeah, okay, I guess let's kind of bounce to, like, stay with your professional life for a little bit, because you listed so many things when you started talking, I was like, God, it's like, you've lived three lifetimes. But EMS, you become an RN, you start working there. How do you get to teaching people?

Jay 21:04
That was a really good look. The good Lord opened the door. I was getting burned out in ICUs, doing, ICU nursing. I started thinking about cardiac resuscitations, the resuscitations that go on when a patient's trying to die in an ICU. My wife was working elsewhere as an RN, and there were nursing students on the unit where she was a nurse manager, head nurse, whatever title, and the faculty member came to her that was supervising the students on her unit, and said, you know, a nurse that would like to teach, we're looking for somebody to teach. And my wife said, Yes, I did. She picked up the phone, called me and said, How fast can you get an over to the nursing school do their application. Because it was a day off, I said, I can clean up and go look presentable. And I ended up teaching, wow,

Scott Benner 22:09
so you just, you couldn't I mean, do you run out of adrenaline at some point? Is it just like it constantly being in fight or flight? Is is that the part that's exhausting?

Jay 22:21
Yes, that that is one of the things, is you almost lose your humanity. Okay, here you are fighting, literally fighting death. It's a tiring battle. You know?

Scott Benner 22:35
It's funny that you put it the way you did, because not nearly apples to apples, but I've mentioned on the show before, when I was younger, got a friend of mine got me a job, like collecting credit card debt. And the same way I would explain to you why I stopped doing that, is what you just said, is like I started feeling like I was losing my humanity, like I didn't it didn't matter that, you know, these people, some of these people, ran up debt with no, you know, visible way to pay it back. But it didn't matter in the end, like, once you were, you know, face to face, over the phone with a person who just can't or won't pay or whatever, and it's there they start telling you about their lives. I just and then it's your job to listen to that whole thing, you know, my husband has cancer, my house burned down, like, you know, I lost my job, and then you're like, I don't care, make the payment or they're going to come take your car. I just, I couldn't do it anymore. It's just like, I can't be a part of this. You know, with

Jay 23:29
your history of being a first responder in your background, you see that, and you know that when they say, my house burned, you really know it's

Scott Benner 23:41
contextual. Yeah, I've seen people lose their homes. I've seen people die in car accidents. I've seen people get maimed in car accidents and then can't work, and to look at them in the face then and say, you have to send money or else. I just one day, I was like, I can't so I can't even imagine literally being there and watching these things happen to them over and over and over again and and then just having to get that energy up to do it again and again and again. What do you know? What's the lifespan of a of an ICU nurse? How long do they usually make it?

Jay 24:09
I've been retired for 14 years,

Scott Benner 24:14
and I don't know. Some people think it's better than others.

Jay 24:18
Some people have better support systems. Some people have tougher skin, and we're all individuals, and so you really can't compare, yeah, one to one, I guess doesn't work.

Scott Benner 24:34
I can just say, if it's hard for you, I can imagine it's really difficult.

Jay 24:39
My Biggie coming off of back to the podcast, is 504 plans, Jay,

Scott Benner 24:46
I gotta tell you, like in your notes, you're like, Why do I want to come on the show? Just those 504 plans. And I, I remember thinking this morning, why does Jay like i with respect? I thought Jay is an older gentleman. Like, what's he talking about? 504 plans. Let me ask you. A lead in question, and then we'll get you to the next one. How does a man in the 70s find a podcast

Jay 25:05
several ways. One because of my nursing background, I would and teaching nursing, teaching endocrine nursing, paling around with the nurse in my indoors office, working with the nurse reps, the manufacturers, reps, the Dexcom, the Animus tandem, I learned a lot about the education of patients in an endocrine office, and then that tied back to something that happened. I guess it was actually the late 80s, late 1980s can I put this story on, on Juicebox a couple of times, but where I got by seed, planted for 504 was much before 504 really had even become an issue. I've forgotten whether this was a first or second grader, but it was a transfer student, transfer at beginning of the year in January. So over the holiday break, child changes schools about 15 minutes before lunch. This child pulls out a little plastic box. This is in the meters had come out. Doesn't finger stick. Meter pulls a vial, pulls a syringe, draws a sliding scale and injects themselves quickly. The teacher was so overwhelmed, they didn't have time to respond before the child was finished, right? They were, they were into, definitely, definitely. The seven year old was independent. The sad part was that the school had just implemented, the school district had just implemented a zero tolerance to drug paraphernalia.

Scott Benner 27:03
Oh, the kid's gonna get in trouble. The kid

Jay 27:07
was taken to the police station for possession of drug paraphernalia.

Scott Benner 27:14
It's always fun when people can't think, okay, okay. Now we got the seven year old. Is it the police station. How do you witness this? How do you know about it? Professional

Jay 27:24
channel, okay, and needless to say, the parents sued and said, you know that here? And here's a good word, pneumocephaly. Break it down. P Mo is air. Cephalid head, the El wise condition of so there were some people in that county school system that had Airheads.

Scott Benner 27:50
Isn't it crazy, where people just can't, like, stop and assess it, you know they mean, like, yeah, there's a drug. This is not drug paraphernalia. This is medical equipment. So

Jay 28:00
anyhow, they found Americans with disabilities. Act had come out. They found out that diabetes was protected. So yeah, this kid could do what they wanted to. Didn't even have a school nurse at the time. They didn't have 911 it was so they were still implementing that. But anyhow, I learned about it through the professional circles that had come about. So that's what got me planted the seed. It didn't germinate for a while, until, actually, I was teaching. And then we started looking at lockdowns in the safety committee that I was on while teaching nursing. And we started looking at, well, what about these kids in wheelchairs that are in the school, did need to evacuate from the school campus to the community college campus to shelter while they've got a chemical leak in the building, that sort of thing. So that's what, where I learned about 504, plans. And then started, as I was pumping and getting into Facebook, started realizing, hold, there are a large number of posts my child's school isn't playing

Scott Benner 29:06
by the rule book. Yeah, there's twice a year that it becomes an incredibly popular conversation the lead up to the school year. And actually, when the school year ends and the summer starts, I think a lot of people think, Okay, I have to get one of these ready for next year. And then, of course, people you know being diagnosed throughout the year who come in and eventually will speak up and say something went wrong at school. And somebody says, Oh, do you have a 504, plan? And then that starts that conversation again. Like, I don't know what that is, because why would you know before your kid was diagnosed? We don't do a great job of talking about it. And a lot of schools, not a lot, but a fair amount of schools that you see people talking about will just ignore the 504, plan, or argue with you about what can be in it. Or, you know, sometimes you are with a private school, and they'll, they'll say, like, well, we don't have to abide by that. People run into a lot of different

Jay 29:55
problems. Let me, let me. Let me jump in on that. Yeah, privates, there. Are two sections that come into play on 504 plans. Title two is public facilities, and Title Three is private facilities. And so yes, the private facilities have to accommodate a lot of times they will say we don't have the resources and try to slip the bull between the horns. But yes, there's, there is the title three, and then there is an escape for the faith based organizations. Yeah, I've seen that as well. The only problem is that the faith based organizations are included if they receive government funding. Okay, but now hang on. I just saw this one in a But

Scott Benner 30:47
Jay let me go for a second because I thought 504, plans, they didn't apply to private schools unless the schools took federal funding. Is that how that works? As far as you know, I can look it up, but I think that's what I'm that's, I think there.

Jay 31:01
That's sort of a gray area, because it's like a private business, if it's large enough, it has to accommodate,

Scott Benner 31:11
oh, this side. Oh, yeah, see, it's again, I don't know enough about it, but I don't think anybody else does either. And I do think the schools often do what insurance companies do, they just they turn you down the first time to see if you'll stop, you know, and that does happen a lot.

Jay 31:27
And then, to add insult to injury, state laws impact the action that's local school boards can implement, for example, if the state has in its Nurse Practice, act that a school or a nurse working in a school may delegate certain listed medical activities or nursing activities to an unlicensed purse trained person. That's fine, and so that school can take care of the key 1d the insulin dependent child, and because of obesity, we're even seeing type twos that are insulin dependent in schools. The thing about it is, though, that if the state law says no nurse shall delegate, and it includes certain nursing activities that the child needs to have done by an unlicensed staff member. Then that state has a difficult situation to deal with. They have contradictory

Scott Benner 32:42
laws. Yeah, listen, I just did some Googling around it, and every return almost takes you back to like a lawyer's website. So obviously, there's confusion in the world. When there are so many different states and states have different laws and different rules and regulations to follow. I think it's where all the confusion comes from. Also, when you see somebody ask a question, then somebody's like, no, that's not right. This is right. It could just be right for where you live and not for where that person lives. Even your explanation tells me that it's a confusing, maybe on purpose, confusing situation, because I think the schools don't want, I mean, listen, I only have my own, you know, experience to go from. But I wrote a pretty, I think, reasonable 504 plan for Arden when she was going into kindergarten, and the school counter at countered me with a 504 plan that had like, four or five bullet points on and I ended up going back and saying, like, if you think these, like, four things you wrote down here are enough, I'm like, Yeah, I don't think you're going to be able to keep her alive for a month like this. And you know, oh, plenty of kids that come through here with type one diabetes, and we know what we're doing, and blah, blah, blah. And then you meet those people, and their kids blood sugars are like, 250 all day long. And, you know, and then they've but the school's like, See, they're fine. I'm like, That. Mean, that's not going to be okay for us. Their brains working in syrup. Yeah, right. It's a little hard to think when your blood sugar is high. I mean, let's not do that to people, right? And then later, you know, say, Oh, they weren't good students or they but I'm like, You're not giving them a chance. But that's

Jay 34:10
why, that's why law enforcement is taught to look before they go for alcohol intoxication. They they ask, Do you have any medical conditions I need to know about, right?

Scott Benner 34:22
Yeah, because a lot of things can alter you. I mean, my experience Jay was just that I didn't know what a 504 plan was. Somebody told me about it. I think I found an example that the ADA had. I might have found an example that JDRF had, and I cobbled them together, took the parts out that seemed like they were important to Arden, kind of put it together back that way. I didn't know what it was. I only knew I was doing it because I was supposed to. You get to the school, the school, they don't know why, but nobody knows you know what I mean. And then you just, sometimes you you end up amicably, and sometimes you end up in an argument. And just, it sucks,

Jay 34:59
I'll tell you. And. It, it does. And then, then you get into the Office of Civil Rights, yeah. And also,

Scott Benner 35:04
a lot of people don't want to be involved in all that. You know what I mean? If somebody would have said to me, Oh, you're gonna have to call an attorney for ardent 504, plan, I might have been like, I'm not gonna do that. You know? Like, it's ridiculous that, that we can't agree on some basic ideas about what kids with type one need. And, you know, why can't that just be like, you know, where everyone's rules start, and then you can, you know, change from there. But we're at least going to have people in the in the school that know how to use glucagon, you know, if the kids self sufficient, we're not going to drag them around to a nurse's office if they don't have to be cool, if you want to follow their CGMS, and if you don't, okay, whatever, like, you know, but don't block us from using the Wi Fi and then tell us you're not going to follow it. You know what I mean? Like, just simple stuff.

Jay 35:49
Well, the there are two Facebook groups that support these narrow segments that you're seeing in in the Juicebox group, and those two groups, one of them I actually created a few years ago, is 504, diabetes. And one of your assistants, I can't remember which, which title she has. Nico is always pointing which will she'll drop my name in a one of her comments.

Scott Benner 36:22
I do see you and Nico interacting quite often. That's, that's, she's wonderful, yeah.

Jay 36:26
So yes, Nico and I have a good working relationship to pop up, and usually I'll end up inviting people to either 504, diabetes or one that Carrie Murphy has put together that is really great, and that is following T 1d

Scott Benner 36:46
I think she's emailed me a couple of times, but I just don't never have the time to dig into it. You need to get her on the show. Yeah. Okay, that's good to know, because I also run into the broader issue that the Facebook group is is pretty big. And if we start letting people, you know, for the lack of a better term, pimp their thing all the time, then it just turns into that, then people can't talk. If I told you how many posts get, you know that don't go up because we we don't want people selling their books or their CGM covers, or they, know, telling them about my group that I made, or I'm walking for this company. Can you do this for me? And like, if we can't let all that stuff happen, because it would overwhelm the group with it, would the group ended up looking like a flashing billboard in Times Square, right? So we just have a it's a blanket rule, because I don't know what people think, but like, I'm one person. I have a life, and I make the podcast, which takes most of my time, and then I do my best to manage the Facebook group, which takes a lot of my time. And there's lovely people who donate their time to kind of look over the group and stuff like that. We don't have a company overseeing it like, you know, there's not an army of people looking at every post. So blanket, you just can't pimp, and that's the end of it. And you get, your stuff gets removed. If you do, we also don't want people selling their diabetes supplies, because, you know, we're giving away their diabetes like you think, Well, why can't you let people give their diabetes supplies away like you would in a perfect world, that would be lovely if they wanted to give something away, except then 55 scammers will come in and pretend to be giving something away to steal $20 of shipping money from you and like, it's just it, you know, and it becomes that, and I think it's possible to what you just mentioned, curry, right? I think she just got mixed in with all that in my my inbox, to be perfectly honest, because Pete, I'll email you, yeah, thank you. My day is full of people wanting to sell something or use the platform I have to elevate their thing like it's just, I can't, I don't have time, so I just don't look at any of it. And then I it sucks, because then sometimes real stuff gets lost in the shuffle. You know,

Jay 38:52
I have one that has gotten lost in the shuffle that goes back to my being an educator. Old teachers retire, and they changed their handouts. I changed from nursing to diabetes, but the one that we talked about was the Office of Civil Rights. The problem is that there's several of those in the executive branch of the US, government, education, justice, health and human services. All of them have an Office of Civil Rights. So one thing that would be good for listeners who are commenting, I got in touch with the OCR. Which one? Yeah, it's like when I, when I most of the time, if I'm thinking about it, when I use Ada, I'll put ADA hyphen act or law when I'm referring to the Americans with Disabilities Act, and I'll use ADA hyphen, or when I'm using when I'm referring to American Diabetes Association

Scott Benner 39:47
candy that they both have the same acronym. Oh, yeah. And

Jay 39:51
then we're into more education. And something that I see is that many prescribe. Drivers and users. I mean, watch posts with this set of glasses, the prescribers and users blow off training. How hard can a CGM be to use? Oh, you can slap it on. You can get the wire under your skin. But what does the data mean? Maybe

Scott Benner 40:23
you are too. But I'm always surprised when somebody tells me, my doctor said, My endo said, Oh, I'm not familiar with that pump. I think, Well, how long would it take you to become familiar with it? Just isn't that your job? Like, do it, you know what I mean? Like, What an odd thing to be involved in something like that. And then look at somebody, oh, I don't know that one. Well, I

Jay 40:43
actually had that happen. I imagine one of the pump companies had a layer and share program, and I was a little bit too late jumping on because I needed to get my endo sign off on, because it was prescription material the endo nor there I'm going to use CDE. I get tired of trying to say five letters. Fine with me. But their educator was unfamiliar with the pump also, because they didn't have a boots on the ground rep in the neighborhood. So I knew more about the pump that particular brand than they did. So the prescribers that hand will say, hand a handful of samples to a user and say, Go, try this CGM. And the user then says, Oh, thank you for the new model. I've been using that brand in the old their old system. It can't be, you know, I don't need to know anything. Every time Dexcom has changed models, over 25 years, I've sat through a two hour orientation for every model. It is amazing. What is in the lesson plan of orientation that many users blow off and then in groups dedicated to tandem or Dexcom or pod or even in Juicebox, I'm having trouble with my whatever device. And the first question is, did you go to orientation? No, I've been using that brand for 300 years. I don't need it

Scott Benner 42:31
changes a lot as it goes along. I also don't know, you know, it's so fractured the way people even learn about devices, right? Sometimes your doctor's office just gives it to you and says, Here you use the other one. This will be the same. You'll figure it out. Nobody reads the instructions. You hear people say all the time, like, I was supposed to wait for a trainer, but a trainer never called me, so I turned the thing on. It's just it's such a mess. I mean, people's lives are so busy. Jay, you know what? I mean,

Jay 42:58
did they call the trainer? No. I

Scott Benner 43:00
mean, yeah, I don't know. Sometimes yes, sometimes no, sometimes they just sat back and they're like, I thought somebody was supposed to call me, and then it doesn't happen. And one night, they've got a free hour, and they're like, I'm gonna learn how this thing works. I would imagine that if we all understood the things we were using more completely, we'd have fewer problems with them, for certain. But, man, I don't know how to get to that, but do you have thoughts about it.

Jay 43:21
Yeah. And then the training. And then the other one. My favorite one is the tech companies, the tandems, the Medtronic, the insulate Omnipod, beta bionics, Dexcom. They've known for six months that Apple was going to release iOS 18 next week. Why aren't they ready? I don't know. My thought as a nurse is that they are doing malicious dereliction to keep their users safe, because a preponderance of the code in an update, whether it be Apple or Droid or whatever the manufacturer is, the preponderance of the release new software, operating system type stuff is to prevent malware, to prevent malicious code from getting in the door.

Scott Benner 44:15
So the way it always occurs to me is that we look at these companies and we think of them as, like, these giant, huge corporations, and maybe they're not as big as we think they are. Like, maybe they don't have the people on staff to do the testing for the new iOS. Or maybe they have fewer than they you know what I mean, like, can it just be a problem with staff? Like, you know, it just takes them longer, or people are working remotely now. So, I mean, I don't know. Do they work as hard if nobody's watching them? I have no idea. Because I take your point like, how come the day iOS comes out? You're not like, Hey everybody, here's our updated blah, blah, blah that's already been through Apple certification, and we got it off to the FDA already, or whatever they have to do. You know, we've done all of our things, and here it is. Yes, and meanwhile, you get a note that says it's probably going to work so, but we haven't verified it yet, or don't update that one. You know? Yeah, we can't support that. I don't know. Like, I have a hard time thinking that it's a group of people who look at the problem and go, ah, we don't care about that. That's my thought.

Jay 45:18
I think it goes back to one word, thalidomide, to that case?

Scott Benner 45:22
How make your connection? For me, the enabling

Jay 45:25
legislation for the Food and Drug Administration was revamped following thalidomide in the 1959 1960 time frame. There's even an episode or two of Call the Midwife TV show that deal with it in England, and it impacted England and Germany. And I believe the way that things happened in the US, the legislative arm of government said, never in the US. We don't want that. And so everybody is afraid that they have to cross all the t's and dot all the i's with FDA.

Scott Benner 46:05
So you think that the companies are so concerned that they're if they miss one little thing, they're going to be in trouble, that they just don't do anything, or they over prepare when they're doing it.

Jay 46:18
They over prepare, they triple check everything before they even release it for beta testing.

Scott Benner 46:25
They're afraid of their own shadow, where, in this case of the FDA shadow,

Jay 46:29
yes, yeah, or the the court system itself, or that they

Scott Benner 46:35
don't even know what the FDA wants, so they're there. It's hard to figure out what to do.

Jay 46:39
That's another good one. Yeah,

Scott Benner 46:40
now that I that I've heard from people before that you really get into some of these meetings. The FDA almost doesn't know what they're asking

Jay 46:47
you for. No, it's a strange world. Listen to a TV commercial about a drug there's a person standing on the screen visually smiling, laughing, having a good time, and the announcer is reading, this will cause you to grow

Scott Benner 47:07
a third leg. Yes, you're gonna have diarrhea out of your eyeballs. Yes, exactly, maybe, or it scares the hell out of people. I saw somebody the other day, like scared to death about a black box warning on GLP medication. I mean, if you go dig into it a little bit, the occurrence of the thing that the black box was for was very, very, very infrequent, like, just very infrequent. But once it's a black box warning people don't, then go, Well, let me go find out how many people this happened to. They just like, Oh, my God, it's always panic. I have ads with a lot of companies. So I'm going to say something that I think every person who thinks that is going to think it's them, but I have this one specific person who told me, like, half of my job is making sure that we don't do anything illegal. That's what encompasses most of my day, making sure that. And, you know, listen good, yes, but keep in mind, big picture, half of this person's job, two and a half days of every one of their weeks, right? 10 days of a working month is spent just making sure that every word they say, every picture they show, every link they put up, doesn't break a rule, which means that that time, not they shouldn't be doing that, but that time is not being used for other things, like figuring out the iOS device, or, like everybody's so busy. And again, I want to say I'm glad they're following the rules, but it does give you an idea of what happens and why people maybe don't have a lot of you know, vigor at their job to get things hustling and get them done. Do you think about that ever?

Jay 48:40
Yes, every once in a while it depends on if I'm thinking left or thinking right. You can almost tell when my comments come whether I'm thinking sort of left brain or right brain. Okay, that the there are times that this person really got left, hung out to dry by their care team. They were handed technology and said, Good luck, or they were they weren't told how to learn or where to seek how to use their technology. And so yeah, those people, you need to go back to your team and get educated.

Scott Benner 49:26
It would be nice if the companies put out more user friendly, you know, videos and educational tools. But then you realize that those those tools, also go through an FDA process, and that every word is in there, and it's what, you know, it's funny. We had this conversation recently, but a person asked me why they thought the podcast was valuable for people. I said, that's because I'm just on there talking people tell their stories, and you pull out what you can from them. But moreover, it doesn't sound like I don't know a doctor who just spent the last seven years researching something is now. Reading either a research paper, word for word, line by line. It's not boring. These people are like, Well, can you educate me better? I said, Yeah, we made you a video, and then the video is boring, and the first three minutes of it are like, you know, legalese. And then somewhere in the middle, there's a vague description of what to do, but it doesn't get too specific, because if it gets too specific, it might not be right for everybody, and then it ends up being useless, and then the company sees that nobody uses it, and probably takes the air out of their balloon. And you get that kind of apathy on both sides at that point. I don't know. It just seems like such a I understand why the rules are in place, and I want everybody to follow the rules, but when you do something that specifically like that. It becomes just not a reasonable way to communicate with people. There's

Jay 50:47
one company that has in their literature, actually, it's in a user manual, and in the very back of it, it says something to the effect of no person can modify what is written in the warranty. Okay? And then you look about five pages in front of it, and it says, this book is the warranty, and you must do everything. You must do thing. You must use our product according to the User Guide. Yeah,

Scott Benner 51:25
that's a disclaimer to protect them in case you mess something up or or even if something goes wrong, they can say, Oh, you didn't do it exactly like this in the book. And yeah, like a lawyer put that there Right?

Jay 51:36
Oh, yeah, that's exactly what it is. It's legal ease, clear and unambiguous, but then on the company's website, it contradicts the User Guide. Oh, yeah, right, because you know so the webmaster, hold it, is the webmaster a person, so no person can change or offer any other information other than what's in this user guide,

Scott Benner 52:01
do you imagine, like being like, stepping back and looking at it, that's a misunderstanding between the person who wrote that and the person who wrote the other or maybe they just didn't understand, or it's, I don't know, even just wrong, but not on purpose.

Jay 52:15
I think that the company's checks and balances are inadequate.

Scott Benner 52:21
Listen, they all got so many people working for them. Like it's interesting that it's, I don't know it's interesting that it can't be done. But is that that's a is that a shortcoming of a company, or is that a human shortcoming?

Jay 52:32
I would say that it is a procedural shortcoming. One of the things in television production is a continuity editor,

Scott Benner 52:43
yeah, yeah, like an eye in the sky who sees the whole thing and is in charge of making sure one thing agrees with the next.

Jay 52:49
And for example, they make sure that the actor in one scene is leaning up against the left side of the door. And then there's they switch to a different cut, and they splice the the video at that point, and here they are. Instead of leaning up left, they're leaning up right, because all the script said was leaning against door frame.

Scott Benner 53:13
Jay, are you a football fan?

Jay 53:16
Not really, no.

Scott Benner 53:17
How about sports in general?

Jay 53:18
Uh, I spent many times on the sidelines dealing with medical emergencies, okay,

Scott Benner 53:24
but not playing or being involved watching as a specter, okay? So what I was gonna say is this, I am 100% for people having the ability to go get new jobs and do the best for themselves that they can. But what ruined the NFL for me, was free agency, because you take this time to build this cohesive unit right, these people who knew each other backwards and forwards, the guy to the left, you the guy to the right, you knew what you were going to do. You were a well oiled machine. It took years to get it that way. And then all of a sudden, players, you know, and again, no one's arguing with people having, you know, the freedom to go look for another job. I think it's the right thing to do, but it's what hurt football, is that now you get this person who's like, well, I'm going to leave now. I'm not part of the team anymore. I'm going to go over here and be part of that team. That team gets a better player, but might not be any stronger, because their team cohesiveness is not great. You've just lost a piece of yours. Now you got to bring in a new person. I think this happens in business too, right? Like somebody's good at their job, and everybody goes, Okay, the Department of XYZ is being handled masterfully by Beverly. Okay? And so we don't have to think about that anymore. And then two years later, you realize Beverly left, she got another job, and you know, the next person came in and was like, What am I supposed to do? And no one knows. Like, everyone's just doing what they think that they're supposed to be doing. You come in, you find these rules, like, you know, punch people sit around you and even tell you, if there's a training, this is what we have to do. They often don't even know why they're doing what they have to do. You know, that's something I've learned years and years talking to my. Wife about how many people are doing functions every day. They're getting them done, and they're they're correct because they're following the rules that are written down. But if you ask them to tell you why they're doing it, they have absolutely no idea. Like they don't know why they're pushing the it's it's the show Lost. They're pushing the button every day, but they don't know why they're pushing it.

Jay 55:18
It brings to my mind a good book that I read leadership principles of the Navy SEALs. The author was cannon, and it's a team. Everyone on the team needs to know what is the mission and how is it going to be executed. And this same thing is true in the diabetes device technology, everyone on the team needs to know, what is the mission, what is the exit strategy, that sort of thing. Yeah,

Scott Benner 55:52
I wish I could tell a story that I can't tell, because I think it would be wrong. But, and if I just say it the generalization, everyone's going to apply it to some, some other company. And the truth is, none of you know which company this is, but just keep in mind, if you think you know who I'm talking about, you definitely don't, because that's somebody I never ended up actually doing business with. But I sat in a meeting with, you know, God, five or six people you know supposed to be professionals, and they look at me and they say, Well, what do you think we should be doing? I was like, you're asking me. I was like, I make a podcast. You're trying to buy an ad on a podcast. You know, you want me to write the ad. And it wasn't just that. It wasn't just like, tell me what you think people would like to hear, like, that kind of thing. It was we have this thing to accomplish, and we don't really understand what it is, and we don't really understand how to get to where we need to go. Do you have any ideas? And I'm like, Oh God, if you don't know, aren't we in trouble? And that is why I ended up not doing like. I didn't follow through with them, because I was like, these people are out there in the world trying to talk somebody into something. They don't know what it is or why they the person might want to use it. They don't, they don't understand it at all. And, I mean, there's a group of people, and not one of them, like said something that made me think, oh, they understand. I don't know, man, it's, it's everywhere. You know what? I mean,

Jay 57:17
I think you and I have seen, we've we've been to the mountain. The thing is that the healthcare team needs to educate the users better, and the 504, plans need to be more accepted. And the whole thing is that the technology needs to be congruent. I mean, it's it's training, education and technology, and it comes across everywhere you You and I are two good choir boys on this one we

Scott Benner 57:51
I hear you say that, what I think is, there's the kid who needs the help, there's their parents or their guardians, there's the school at the administration level, there's the school at the teacher level, there's a school at the nursing level, there's your doctor, who you don't have direct contact with, so you're probably talking to a nurse practitioner or your CDC, CD CES, and then maybe the doctor. Now I don't know what we've we're up to, we're up to the kid, the parents, the administrator, the teachers, the nursing staff, the other staff at the school, the doctor, the nurse practitioner. I got nine people now involved in this right hand doesn't know what the left hand is doing. Is the saying, for a reason. How do you centralize what needs to be done? Do you need somebody like the ADA or the JD? It's not even JD, ref anymore, breakthrough diabetes. Like, way to go with that one. Like, do you need somebody at one of those big organizations to put together, like a, you know, a blue ribbon team of people who understand all these different aspects and put together an actual document that would work for everybody, and then let those people build off that document, so that at least the institutions would know the basics. Is that the answer?

Jay 58:54
I think that's part of it. And I think that I may be speaking out of school on this one. Well, it's

Scott Benner 59:00
a podcast, Joe, we're all speaking out of school. Go ahead.

Jay 59:04
The Assistant United States Attorneys, the A us as the a USA in Connecticut, did a marvelous job of educating the Connecticut school system. I have reason to believe that that movement may be spreading, okay? And that once that happens, all of the US, District Court, US attorneys, the A us as we'll be getting a memo to read them in on 504 particularly for CGM monitoring in schools, and that that needs to be a part of 504 plans. And so you carry that forward, hold it. That's part of a 504 plan. Then the doctors got to put in the diabetes medical management plan, the DM, MP has got to put it in there. And so it's going to be a dog chasing its tail. Not realizing it has a mouth full of fur. But once it gets once the dog wakes up, I think we're going to see a change. Wow. It's

Scott Benner 1:00:07
the only thing that makes sense to me is that that it's centrally dealt with. I mean, everybody has to have their, you know, everybody has to have their voice in the process. It can't take forever. You know, you can't let it get all caught up in an ego and and fear and everything like these. These kids need, these kids deserve, for there to be a basic understanding of the medical devices that they're using, the dangers that they're in, and the things that will help them both from, you know, emergent low blood sugars and being asked to walk around with a 250 blood sugar all the time. Like, people should know that basic amount and And don't you think, I think you could explain it to someone in 10 minutes, right? Like, I don't think it would take a weekend course or something like that. You could explain those things. Here's these devices. This is what they do. Here's why it's important. Here's why it's important to them today. Here's why it's important to them tomorrow. And you know what? Here's a little bit of background on what it's like to live with type one diabetes. It isn't as easy as you might think. Okay, now, you know, here's the things we're going to do for these kids. These things get done. They happen. We don't argue about them, we don't ignore them, we don't forget them. And if you don't do them, there's going to be some sort of a repercussion we're done right? Like write that down and make that the rule for everybody. And then if states, like, I don't know, like, you know, I don't know what we're talking about exactly here, meaning, you know, should this be a federal thing, or should it be state by state? But I think if you make it a federal idea of the basics, and then tell the states, look, if there's other things you want to add on to this. You know, come back to this office and tell us what you think why that's important, and we can make an amendment for you specifically if you think that's necessary. But just giving these kids the basics would probably, probably fix 90% of the problems.

Jay 1:01:55
Ah, yeah, Jay, I

Scott Benner 1:01:58
don't know. You've been alive 72 years. Man, how do you make stuff like that happen? You've

Jay 1:02:01
got to remember to grassroots level and and that brings up another one that my timer just went off, so I'm going to have to get this one quick, and that is the Americans Disabilities Act and refuse handling of the in the US Constitution, Article Six, clause two, is known as the Supremacy Clause. And there the states, local governments, local businesses can't overstep federal law, so this is where, when schools say 504, plans are federal, they don't apply to state law. Supremacy Clause just got them, yeah, but

Scott Benner 1:02:37
you're gonna need an attorney to do that if you get into that conversation, you're beyond your own personal understanding for most people, and now you're good.

Jay 1:02:46
Hold on. How many times have you heard the saying in the world of law in these United States? Quote, ignorance of the law is no excuse.

Scott Benner 1:02:57
No, no, but you still need somebody to hold them accountable. So if they're ignorant to it, as the school, for example, you don't just get to walk in with a tin badge you got from, you know, Kmart is Kmart, the whole place, Walmart, and say, hey, you know, you broke the role. You believe me. Now do the other thing like you. Somebody has to come in officially and say, you've, you know, these people have asked you for this. You've said no, you're not legally allowed to say no to that. We're compelling you to do that. You have 30 days to comply. But, like, it turns into that thing, you know what? I mean? That's true, man, the

Jay 1:03:28
thing, the thing about it, is that what the the teacher line comes back and that is, show your

Scott Benner 1:03:36
work, yeah, well, you want them to do the right thing, but

Jay 1:03:39
right and I've used that a few times to say to someone, okay, you you're telling me the law says ignorance of the law is no excuse. Tell me the law I don't

Scott Benner 1:03:50
know. Man, then you get back to like, the person doing the job that you're talking to, who doesn't know what they're doing. They're holding on, you know, by the skin of their teeth, hoping nobody notices. They don't understand 45% of their job, and everybody then the ass covering starts, and then other people realize, uh oh, if they figure out she doesn't know her job, then they're gonna figure out, I don't know my job. And then, you know what I mean, like it just, I don't know, man, all this stuff always feels like, it always feels to me, like people who are not, they're not well oriented. It goes back to education, they don't know what they're supposed to be doing. And if they do know, sometimes they're not motivated enough, or they're burned out, or whatever else, and they don't end up doing everything they're supposed to do, plus companies. I mean, listen, this is you can make the argument the other way, these schools, and you know, they've got these teachers and administrators doing more than probably their fair share of work, and you know, there's a lot of work, and it gets thrown on everybody, and I don't know, it just I like, it's funny, because you feel like you're talking about a 504 plan, but at the same time, I feel like you're talking about everything. Does that not feel that way to you? Like, most things end up going like this, yeah,

Jay 1:04:55
because it the 504 plans. Do it the show. Parks disposal, does it so it well,

Scott Benner 1:05:02
I'm talking about beyond that. I'm talking about the lady at the register doesn't know how to make discount card works at the grocery store. Like, if you don't know, you know, like, then, then who does

Jay 1:05:11
if that's right, it goes, it goes back to take this back to your trainer. Take this back to your educator.

Scott Benner 1:05:20
What I keep thinking though, Jay, is that if I keep taking it back to the person who's like, if I keep doing that, do I end up in a room that nobody's in? Is that too metaphysical? Like, if we keep going back to the person who was supposed to tell me how to do this, and then I go to the next person, I said, Well, who told you this? And I go to the next person like, it feels like it's a nebulous thing. There's not a person in charge. There's these ideas. I'm going to be unclear about this, but there's these institutional ideas that we follow, and there's norms that we've heard. Because the last guy that had the job told me this, the last girl that had the job told me that. So I this is how I do it. I don't really know why I'm doing it. I just know I'm supposed to, it's Tuesday and I'm supposed to push this button, so I push it on Tuesdays, then you realize that it's completely possible that all of these rules came from places and times and people who don't exist anymore, and so nobody really knows why they're doing anything, which is why sometimes things need to be looked at with fresh eyes from the people who are involved now and put together something cohesive that everybody can agree that they can do and that's protecting the people it's supposed to be protecting

Jay 1:06:25
you have said it well, and looking at the other side of we've always done it this way. Oh, it's the worst. Yeah, yeah. This

Scott Benner 1:06:37
is how it's always been. This is what we do. Listen. Forget all this with the 504 care plan. Most of these people listening. Your health care is based on that too. Oh,

Jay 1:06:45
it is health care. Health care is, is it? And you need to be taught, and you need to be taught about your insulin, you need to be taught about your administration. You need to be taught about your profiles. You need to have protocols for half a dozen different things. I mean, yeah, it's timeless. I think this is the stuff

Scott Benner 1:07:07
that when they talk about, you know, there are things in the world that we just do to keep people busy. That's what a lot of this is. I mean, anyone who's ever signed a mortgage, I mean, my God, you'll spend a half an hour, 45 minutes in a room with somebody signing documents

Jay 1:07:22
and ask them. Reduce this to 25 words,

Scott Benner 1:07:25
what is this? You know, what is this? I'm signing here. Oh, it's the blah, blah. No one knows. No one knows anything. I just it happens constantly. No matter what you're doing. People like, Oh, you just have to sign that. Or, I had this one company, they're like, we want to, like, direct deposit. You know, when you send us an invoice, we'd like to just deposit it directly into an account. And I said, Yeah, that's fine, whatever. Here's, you know, here's the information that you need. And they came back and they said, Actually, we need you to take this document to your bank and have it certified by the bank manager and the and I responded back, and I went, No. I said, No, period. Send me a paper check. And that was the end of it. Like I couldn't believe what they wanted. It was ridiculous,

Jay 1:08:04
you're right. And there's one more that from education, the one thing to keep in mind is the mind can only absorb that which the tail can endure. So if a person's listening, they they need to look at how much information can a person absorb in what in one session?

Scott Benner 1:08:27
I Yeah, and the answer is not a lot, right? The answer is not a lot. I'm not saying I'm like, magical, and I could do it. I'm sure if you put me in one of those jobs and hit me for an hour with information, I'd walk out of there like, Oh God, I don't, I don't, okay. And then, you know, it's not like you, by the way, get to go back to your desk then and spend 15 or 20 minutes going over these ideas, and, you know, looking at your notes and and saying to yourself, Okay, this is you get done that meeting. You run up, you run back and go into another meeting. People are meeting all day long. I don't know how anything is getting finished. It's

Jay 1:09:01
time sensitive, any way you want to, want to do it like Jay. You're used

Scott Benner 1:09:04
to working in a world that's on paper, but now I'm telling you, nowadays, my wife will someday start working at five o'clock in the afternoon, and I'll be like, what'd you do all day? She goes, I had six meetings. So she gets up at six, she gets dressed, she sits at a computer. By seven o'clock, she's in a meeting. I see her when she runs to the refrigerator to grab a cold drink or runs to the bathroom, back and forth, back and forth, back and forth, meetings, meetings, meetings, meetings. Then at the end of the day, she's exhausted from absorbing all this information, and now she's like, okay, now I have to go do my job, and you work till 11 o'clock, and you sleep for five hours, and you get up and do it again, and then we're over here, like, you know, in the real world, getting the short end of the stick at your 504, you know, with your with your school or something, and you're like, do a better job. But then that cascading, I mean, the thing we've been talking about for the last hour, like, that cascading problem of, why is this really not happening, opens up, and the answer is, there's, like, 1000 And different reasons why this and other things aren't happening. And, you know, I don't know how to stop the world long enough for everybody to reassess and and start over again. So I don't know, like, like you said grassroots is, like, somebody's got to get pissed off and make it happen. But the truth is, is that even those people are going to get tired. You know what I mean? Like, I remember one of the diabetes groups that was really popular for a while and kind of fell off. Now, can't think of which one it was, but they had this, like, great idea, we are going to contact every pediatrician in the country and tell them the importance of checking with a finger stick when you see these flu like symptoms, because you're going to find people who are heading into or in DKA, and it's going to look like the flu, right? And we're going to save these kids from not being diagnosed by type one diabetes. A pretty big organization. I thought, Man, this is a this a good use of their effort, you know what I mean. And they started, and they were going, and then it got hard, and then they lost some of their support from, you know, people who were, you know, volunteering, and the next thing, you know, just fizzles out and it's gone. So I don't know, man, is this just how things work? Is this as good as it gets? In over my head on that, am I bumming you out? Jack?

Jay 1:11:16
Not that you're bumming me out, but, but I think that, I think the my statement about the mind can only absorb that which the tail can endure. I'm going to have to

Scott Benner 1:11:25
go back to that one. Yeah.

Jay 1:11:29
So look at look at the chat and see what we got.

Scott Benner 1:11:33
So what I would say to people, if they've listened to this entire thing, because we've been going a while, and I need to wrap up with you, but like, what I would tell them is, is that you should expect pushback from people who, at sometimes might seem like they're villains in your story, but they're probably not. They're probably either lost or confused or doing what they think they're supposed to be doing. This is where you have to branch off, find a quiet space and decide this is the thing that I have to get worked out, and then you have to put that effort into that. And if it's not something you have the space for, then you might have to say, All right, well, I guess I gotta do what they're saying, or I'm gonna fight or, you know, you, but you gotta figure out what this is. And I think if you're looking for an entity, whether it be the school or an org or somebody else, to come in and stand up for you, I mean, that's not as easy as said. Is done. You can probably get legal representation through American Diabetes Association that they at least they might know somebody to like, point you in the direction of right? But then you got to decide that that's what you're going to do. My point is that life's full of roadblocks, and just because diabetes sucks doesn't mean you're not going to find some here too. Amen. Look like, yeah, those roadblocks look like all kinds of different things, paperwork, misunderstanding, people, institutions that are not trying hard enough, institutions that aren't even doing they don't even know what it is they should be doing. So, man, I don't know this bump say out of me. Jay,

Jay 1:12:58
Hey, aren't you retired?

Scott Benner 1:12:59
Why don't you stop thinking someone else's problem.

Jay 1:13:04
Why don't, why don't we wrap this one up? Then I think, I think we've, we've, we've beat this dog, beat the fur off the dog, every way we can. Yeah, it's really

Scott Benner 1:13:12
enjoyable speaking to you. I love watching you online, because if I can, it's interesting watching a person from another generation say, I see this is how people are talking now, and I'm going to be involved in it, but it's really cool that you're there. You know what?

Jay 1:13:26
I mean? Hey, thanks. Thank you for having me on the show. No,

Scott Benner 1:13:30
it's a pleasure. Absolutely. Hold on one second for me. Okay.

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 screened for type one.com for more info. Having an easy to use, an accurate blood glucose meter is just one click away. Contour, next.com/juicebox That's right. Today's episode is sponsored by the contour next gen blood glucose meter. If you're looking for community around type one diabetes, check out the Juicebox Podcast. Private, Facebook group, juice box 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. 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

Unknown Speaker 1:15:06
want rob you.

#1378 Heading to College with Type 1 - Low Blood Glucose Incidents

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

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends. Welcome back to another episode of The Juicebox Podcast.

Joining this three part series on going off to college with type one diabetes today is part three. If you've missed the first two, they're right before this one in your podcast player today, Andrea and I are going to talk about the thing I'm assuming most of you dread the most your child having low blood sugars at college. 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, 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 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. Today's episode of the juice box podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate, and waiting for you at contour next.com/juice, box. Today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old, Omnipod. Omnipod.com/juice, box. You too can have the same insulin pump that my daughter has been wearing every day for 16 years. This show is sponsored today by the glucagon that my daughter carries, gvoke hypo pen. Find out more at gvoke glucagon.com. Forward slash juice box. Andrea, welcome back. I appreciate you doing this with me. Hey, Scott, it's great to be back. Awesome. I am excited because we're going to do an entire episode here today, just about managing lows at college and being ready for them

Andrea Lafleche 2:31
exactly they're going to happen. So why don't we be prepared as best as we can for them? So yeah, I really want to kind of help all of our young adults and the caregivers, especially, kind of a background on what might happen if you're going low. And we'll get really in depth and give you some tips and suggestions, hopefully to give you some more comfort and be able to get your own information to feel more comfortable sending your student off to college knowing that they're they're going to go low.

Scott Benner 3:03
Yeah. I mean, we don't want to not be trying for it not to happen, but we also don't want to pretend like it's not going to happen and then not be prepared for it. And there's exactly more here on your your notes are great, because there's more here than I think I would have thought to say. So dive right in, please. Wherever you want to start,

Speaker 1 3:19
sure, let's just start with lows in general, not like, life threatening, but like, Oh, I'm walking to class and I'm 65 right? It's gonna happen. You're gonna go low on campus, whether that's in your residence hall with all of your things, or when you're out with friends, and in a million other scenarios that could come up while you're off at college. Really, it's your job to be prepared. The number of times I've seen somebody post about not having low snacks or say they never carry sugar with them, I don't want to be judgmental, but also just makes me nervous, like I as a person with diabetes, 99% of the time, always have something on me, because I don't want to be in that situation. And I think college, with everything else that's going on, this is one thing that you can prep for. You can prepare for. Think about how you can be the most on top of this when it comes to having some sort of glucose, some sort of supply with you, as well as wearing a Medical Alert Bracelet. I feel like in one of our previous episodes, we might have mentioned this. I know for many of you listening, this is probably not something you want to do. Maybe even thought about it, especially with the rise in diabetes tech you're wearing it, people see it. Maybe you're making the assumption that people must know I have diabetes because they can see my Dexcom on my arm. They can see my Omnipod. That's not necessarily the case. One the general public might not know what those things are, even though they're becoming more and more prevalent in the media in everyday life, they might not know, and EMTs aren't trained to look for those things if they're coming to help you, whether that's because you've passed. Out, or whether that's because you just need a little extra support with your low blood sugar, people aren't going to be looking at those things to know you have diabetes, which is why I'm very much suggesting finding something that works for you, that either goes on your wrist, your neck or your ankle, because that's where as I've learned this past week, EMTs are trained to look yeah, that you wear something for me, I just have a little tiny thing that goes on my watch band that says type one diabetes. Super simple. You wouldn't notice it.

Scott Benner 5:30
I had an episode a long time ago now with an EMT, because everyone's like, Oh, I have a tattoo that says I have type one diabetes. They do not look at your tattoos. They only run like Andrew just said, your neck, your wrists and your and your ankles. They're looking for that jewelry. That's the only thing they're trained to do. Yeah. Do that right? It's yeah. Do you think you would have resisted it when you were younger? If somebody said, I want you to wear a bracelet or something, if you take insulin or so final 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, K 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, GEVO 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 GVO kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at gvoke, 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, gevok, glucagon, com, slash, risk for safety information.

Speaker 1 7:07
I think the hardest thing for me, I believe I had one, if I'm remembering, and it was not a cute one, like the standard. I don't know if anybody listening to this remembers the like commercials. I think that you could like medical or commercials or, like, I think I got brochures when I was younger, of like, here's all your options, like, the shape that you want and like, but they were all basically the same metal, yeah, with a little cross snake. I can't remember what it's officially called, Caduceus. Yes, that on it. So not great. I think I wore it. The problem for me growing up was I was really into athletics and sports. You can't wear jewelry when you're playing sports. The ON OFF, ON OFF, ON OFF. Thing was difficult, really, the putting it back on. So I think now there's so many other options, like, I wear my watch, my Apple Watch, every day, for the most part, it's already on there. I don't feel it. It's part of something I'm already wearing. So I like that option for me to

Scott Benner 8:07
something that is going to drive you to wear it, not something that every time they look at it, they go, this thing's horrible or shiny or, yeah, right?

Speaker 1 8:16
There's so many other options these days, right? If you're not wearing it, nobody's gonna know you have diabetes, so they're not gonna be able to necessarily think to look for your glucagon if you're having that, or be like, Oh, you need glucose, or let's check your blood sugar, they're gonna probably go to something else, like, Are you on drugs? Are you intoxicated? These types of things, because there's only

Scott Benner 8:35
one college campus that might be more you're on a college campus,

Speaker 1 8:39
and the percentage of people that have diabetes is so low, comparatively right to the regular population, that that's not going to be there. Like, oh, you probably have diabetes. Like, no, you probably have something else going on, right? So this is why we need to, like, let them know. So figure out what makes sense for you. Is my number one tip. But then the sugar thing, like, stash it everywhere, whatever your favorite low blood sugar thing is. Or if you like to have different types of things based on what you're doing, like, if I'm going out and I don't want to bring a bag, I have a small tube of glucose tabs that I can shove in my pocket. I don't really notice it, but you have it and I'm good to go, or if I'm going on some other trek, or I'm bringing my regular everyday stuff, I have a little stasher bag of Skittles in there that's more has more carbs. So like, figure out what works for you. But like, have them everywhere, right? Put them on auto ship, yeah.

Scott Benner 9:36
Juice boxes for are probably easier for women because they have purses, pocketbooks, generally speaking, but guys have to have backpacks too, right? Like at college, right? I'm gonna give you my best tip, and don't all of you buy this and ruin it for me. Okay, do you know Albany's gummy bears? No, they're awesome, okay? And you can buy a five pound bag of them on Amazon for like, 15 bucks. Ooh. So Arden has in her dorm room at all times, a five pound bag of gummy bears. Now you'll never get low enough to eat all these gummy bears, right? So when you go to visit your kid at school, there's always gummy bears there too, which is kind of awesome, but she has them in her room. She knows how many of them fix how low of a blood sugar. Not great at night because, you know, teeth and cavities and stuff like that, but for most of the day, it's pretty awesome. They are soft. They're easy to do while you're half asleep. And then juice boxes, like, we have the kind that Arden like, My best tip about juice boxes is the most sugar you can get in the smallest amount of liquid. Like, that's, you know what? I mean, it's like, I want you to be able to get 15 carbs with, you know, two ounces, if you can, not super healthy, but great for a low blood sugar. I sent four little bricks of them to school with Arden weeks and weeks ago, and I visited her last weekend, and I looked up and there were three bricks, and there were like, three missing. And I was like, Oh, she's not really even, like, using them, you know, she's got a pattern right? Like, things are working the right way, but when she needs them, they're in her purse, they're in her bag, they're next to her bed, not like, across the room, like that kind of stuff. Yeah,

Speaker 1 11:13
no, totally. I have a, literally, just like, an open bowl of Skittles next to my bed, so all I have to do is reach over, half asleep and grab a few. Like,

Scott Benner 11:24
just very Daisy, yeah,

Speaker 1 11:26
literally, just half roll over. Okay, here we go. And I like Skittles, because they're, like, one carb a piece. So if I really want to when I'm awake, know how much I need? Yeah, I can count them out, which is nice, right? Other things, glucagon, glucagon, yeah, go ahead. I mean, I'm gonna be honest. Do I always have it with me? No, do I suggest you do? Yes. I think this is one of those things, like, you know yourself in a lot of ways, or like your experience level, like, had diabetes for 26 years. I've never needed to use a full glucagon. I don't think now is the time I'm going to probably start. But if I'm traveling or I know I'm going to be doing, like, a newer activity, or being very active, I definitely bring it with me. But in college, everything's so new, right? And you really don't know how something that you might typically do at home could impact to be compounded by other new things you're doing that having that on you, because you're going to be away also from home, if you will, like your residence hall room, which would be your home while you're at school. Like having the extra supplies, I think is important, yeah, to have have that with you.

Scott Benner 12:37
I want to be honest, prior to Chivo kaipo Pen being available, and you know, it. Just want to be clear, they're a sponsor of the podcast. That's not why I said it out loud. But prior to that being available, we didn't carry glucagon anywhere when it was the red box, like it was at home and at school. But you know, that was kind of like it. This is very carriable, though, so it's in Arden's bag. She does not leave the house without one. She has them in her room. There's an extra one there. I always think of this way, eventually they go bad. It's the happiest I've ever been throwing anything out in my life. You know what I mean? Like, Oh, we didn't need this awesome and then, you know, like, bring in another one. I'm a fan, and I think too few people even understand what it is. That's why I mention it so much. So, I mean, if you're me, I leave hypo pens around, like a like, Andrea leaves Skittles next to her. They're everywhere. Yeah,

Speaker 1 13:27
I think another kind of thing to think about, and this might be harder for maybe, like, a first semester, first year student. If you end up having a job on campus, or maybe you're you got super involved, maybe you're part of student government or a student activity, or you're often hanging out in x location. So like when I was at school, we had these different centers that you just kind of could go hang out with there open like nine to nine. You could community space, really, but they were staffed. Think about if there's places on campus that you're spending a decent amount of time per week talking to the staff there, especially if it's a job or, again, you're involved in like, a leadership activity, being like, Hey, I'm here 10 hours a week. Would it be okay if maybe it's in their office because they're your advisor or your boss at that job, to be like, Can I leave a set of supplies here? Yeah,

Scott Benner 14:23
what if I just put a juice box and a bag of gummy bears right in this drawer right here? Yeah, exactly.

Speaker 1 14:28
Yeah. So even if say you forget, or you ran low in your backpack, you're going, you know, you have it somewhere on campus, whether you're going there that day or not, just think something to think about, like, what are the spaces that you're in a lot and is that a potential place that you could ask a staff member, who most likely will say yes, if you have that relationship with them, to leave some supplies there that you have access to, whether you're there officially for work or your activity, or that you can stop in during work hours that they're open and. Grab something if just in case you need it.

Scott Benner 15:02
What are your thoughts about and what do you find when people talk about this, their willingness to describe to friends or staff about how their glucagon works and how to administer it if they need it. That's a great question, because I can see people being like, I don't want to tell anybody, and I can see other people not caring and like, you know what I mean? How do you talk about that? Yeah,

Unknown Speaker 15:22
I think it's all related to

Scott Benner 15:24
my daughter. Is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juice box, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox, get a pump that you'll be happy with forever. Far too often, we accept the blood glucose meter that someone hands to us. The Doctor reaches into a drawer and goes, Here, take this one that is that is that the one you want is it accurate? You have no way of knowing. But if you want accuracy, and you want to be confident in the blood glucose readings that you're getting from your meter, you want the contour next gen. It's incredibly easy to get the same meter that Arden uses. Just go to contour next.com/juicebox that's all you have to do. The contour next gen is easy to use and highly accurate. It features a smart light that provides a simple understanding of your blood glucose levels, and, of course, Second Chance sampling technology that can help you to save money with fewer wasted strips. Contour next.com/juice box. You Well,

Speaker 1 17:22
we've talked about before, like your general willingness or comfortability with talking about your diabetes in general, it's actually now that I think about, I'm like, that's not a conversation I've ever had with somebody. Again, I think because I've never really had to use it, so in my head, the likelihood that it will be needed to be used isn't necessarily there.

Scott Benner 17:43
Isn't that funny, like, you wear your seat belt, though. Andrea, right?

Unknown Speaker 17:46
I do. I

Scott Benner 17:47
know you have a car accident.

Speaker 1 17:49
Rarely ever, I don't know. Yeah, right, no, it's the same concept. I think the difference there, right? Is like, there's a social norm associated with safety belts? Yeah, everybody who gets in a car should be wearing them, right? Not everybody has a chronic illness that they have to manage with potentially life threatening fluid and have to manage all these things, right?

Scott Benner 18:12
I'm with you. I like my opinion about glucagon is probably because I'm worried about another person. But you know, I've also been on an airplane hundreds of times. I've never been thrown into the roof of the plane by turbulence and had my neck broken, but I still wear my seat belt every time I'm on the airplane, because I'm like, I I've heard that's happened, just in case. I wonder if we couldn't make it the norm by talking to people over and over again about it, which is why I bring it up so much. Just like I really think if you have, if you're using insulin, you should have it on you. I'd

Speaker 1 18:39
agree with that. I think maybe the difficult thing, or a barrier in these situations is the expectation that conversation might put on that person, or they might feel like, is there, right? And I think, yeah, that depends, right? Am I talking to my best friend who already carries I don't even ask her, but she's like, I got a granola bar in case you need it, because I know, you know, like, she's already thinking about that. And if I was like, Kelly, if I pass out, like, I need you to stick this up my nose and squeeze she'd be like, cool, I got you. But if I'm telling my boss that at my brand new job, I know, right, like, and I'm not necessarily expecting you to do it. But if I, even if I'm just like, hey, I have this. If I go low, it's one of those. You can use this. So some of the nuance of like, how you say or explain, right? And I think like, what setting up expectations of like, if you're not comfortable with that, it's okay, but please call 911, or whatever it is, figuring those nuances out, I think is some of the barrier with the glucagon piece.

Scott Benner 19:41
I don't think you want on your move in day free to look over and see that your mom or dad has like your new roommates pinned on a sofa. Is explained now she passes out. I want you to jam this in her ass. I don't think that's what you want. Obviously, I can just tell you, like briefly, when Arden went to college as a freshman, we took her roommates out for dinner. Yeah. And we said, like, you know, hey guys, look, Arden's going to explain her diabetes to generally speaking, it's going to be a lot of stuff you don't understand. It's some of it's going to be scary. I don't want you to be scared. We brought their parents along, you know what? I mean, yeah. And they said, but this is it. Like, mostly, you're not gonna have to ever worry about this, ever. And we said, what you said, like, Arden's had diabetes for this long, she's only ever needed glucagon, you know, this many twice, and the truth is, we didn't use it. She was saved by juice both times. But if this thing should happen, we don't want you guys to be sitting here thinking like, if this thing that we're almost 100% sure is not gonna happen, happens. The worst I could imagine is them standing there feeling hopeless and helpless, and then something bad happened in art and them feeling like responsible. You're now finding yourself in this situation, whether you wanted to be or not. Your roommate has type one diabetes. I'm trying to prep them for feeling triumphant if something goes wrong. And so we just pulled out a trainer pen, which I was lucky enough to have, it's on my desk somewhere. I don't know where it is or, like, this is how it works. And you know, if Arden's passed out, take this thing, open it up, find a fleshy spot, put it in and then call 911, and then you go, that's really probably not gonna happen, like, you know, like, but here's how it works. It's important. The truth is, Arden said that, as much as they nodded along. They didn't understand, but they did come back to her some weeks later and say, Hey, we don't think we we were talking, and we don't think we understand this whole thing correctly. So Arden went over it with them again, and then they would have Friar drills. So Arden said that sometimes she'd be studying in her room, and everyone would run in. One of them would pretend to make a noise, and then they'd yell, Arden's having a seizure. And then they would pretend like a, you know, and then one of them would go find the pen, and one of them would get to her, and like, they made, like, the dumbest world game in the world, out of it. But then two years later, Arden switched schools, and she moved in, and she was an older person, and she's like, I don't want to tell my roommates about this. And so it was hard for my wife and I, but we said, Okay, if that's what you want to do, then you don't have to tell them. So I've done both things and anyway,

Speaker 1 22:14
and I would hope that every student gets roommates like that, but that's not the case, right? And not to say that they would have bad roommates. It does happen, but they just might not be interested. They might just be roommates. Yeah, right, not all roommates turn into friends, and so the expectation that that is what your student is going to experience that like that have that expectation, but that's a pretty high expectation to go in with,

Scott Benner 22:41
right? You could also get a partially mentally ill person as your roommate, and things go crazy. I've seen, by the way, I've seen that too. So it's a coin flip, just because the thing went well for Arden doesn't mean otherwise, but I really do take your point. It's an incredibly uncomfortable thing, because you don't know who you're talking to. You don't know their level of understanding or their desire to help, and now you're putting something on them and opening yourself up in a way, because you mentioned at work. I mean, that's the other piece of it, right? Like, are you going to on day one in a new situation, signal to people that you're weaker sick, like, you know what I mean? Like, some people will treat you that way, then that's tough, I don't know anyway,

Speaker 1 23:26
right? And it's finding the balance that works for you, and fortunately, slash unfortunately, every situation you step into is going to be different on what that balance looks like.

Scott Benner 23:36
Okay, all right. I'm sorry, you can move on to your to part B, which is labeled worst case scenario.

Speaker 1 23:43
It is right well, because that's what I hear. And I think you've said this as well, Scott, that caregivers and parents and loved ones are like, Oh my god, I can't get in touch with them. Their Dexcom is at what does it even say? Low, double arrows down. They're not responding to me, and I'm 50 miles, I am in no place to help them physically, right? Like, even if you live down the road right, too late, right? You're not getting in that building. You're not getting like, you don't have access. So what's going to happen? What do I do? So I want to walk everyone through, kind of some players, or some people that might be involved if this situation comes up, and then kind of go through what I would suggest doing during and even before to get some more information. So let's say your student is in the residence hall when this happens, because we're usually people are usually worried about this at night, when their student is asleep and they're not responsive, right? So people that potentially will either be around or involved at some point in the scenario, peers, other students, roommates, depending on kind of what the situation is, there's probably other students around, yeah, again, remembering they are also students. We don't know what their relationship might look like. They might be a roommate, they might be good friends. Ends, they could be both. They could just be walking by the room and the doors open and they realize something's wrong. We don't know what that relationship is. We don't know their comfortability or their knowledge around glucagon. Maybe you had that conversation, but they're like, Nope, I don't do needles. I don't care that it's encased and I can't see it. Like, I can't Yeah, maybe they have no idea that your student has diabetes. Hopefully they're going to call someone. Most likely, in a situation like that, they've been told to call the RA on call, or call campus police or 911, so most likely, hopefully, if a peer is involved, they're going to do one of those three things. If they don't know or don't feel comfortable, actually doing something about the low your resident assistant, potentially will could be involved in the situation. They are students as well. They are trained to respond to conflict, conduct violations and emergency situations, along with other more fun things, like community development. What might they do? They're going to gather information in that moment of like what's going on, determine what needs to happen, and take the next appropriate step, which is typically going to be to call their campus police or safety in a situation like this. From my experience working in Res Life and being on call as an RA and as a professional in something like this, I'm going to call campus police and be like, This is what's going on, or 911 again, this will vary depending on the type of school you're at and the resources that are there. And they're going to let them know what's going on. They're going to stay on site until that help arrives, and then they're going to notify the housing professional that's on call, which is typically a resident director or hall director. They have different names, and let them know what's going on and pass on whatever information they have. Housing professionals. There's a few different ones that could be involved in this type of situation, but they're typically when they're rds, full time staff that run a building or an area on campus, and they're the supervisors of an RA staff. If there are students on campus living on campus, there's going to be a professional on call. Doesn't matter if it's Thanksgiving Day, Christmas Day, if a student is living in a residence hall, there will be a housing professional that is on call. Again, from my experience being that person, the protocols for what the rd do does with that information will vary school by school, and we talked a little bit about previously. You might be able to find some of those steps in the clear report that's published online. But in the case where your student is transported to the hospital, either the rd is going to potentially notify you, if that's part of their protocol, or they might be calling the administrator on call, which is typically their boss, or somebody at like an associate director, director or dean level, depending, again, on The School, and they might be the one to notify you again. Potentially, this all varies based on the state of the student, why the student was transported to the hospital, and in general, again, what is the protocol if you are being called? Most likely, all they're going to tell you is that your student was transported to x hospital. They might give you the number to call. Might give you a number to call. We tried to do that, but I'm really not going to give you any other information, because, again, FERPA, yeah, you're not going to get a lot of information. And then, of course, potentially EMTs campus safety or police, and because of FERPA, we're not, none of these entities are going to be telling you what happened, the state of things, they're going to just let you know that your student was taken to the hospital. Ideally, the number to reach the hospital out to try and get more information, right? So those are the players, and it can be really any kind of amalgamation of those, depending on who's notified, where the situation happens, what's going on.

Scott Benner 28:39
You were an RA in college. I was way back in the day. What's the likelihood that if I, if you know, I knocked on your door during moving I was like, hey, my kids in this room, and she has type one diabetes. Can I get your phone number in case there's an emergency? Would you be like, go away, old man, or what? How would you respond to that? Yeah, I

Speaker 1 28:58
would never give you my number. Yeah, the students, some of them might do it, and then eventually they're going to be like, I shouldn't have done this. No offense to parents, but ones that ask for the RAS numbers typically are going to call, using that are going to call, gonna do things and again, FERPA, we can't tell you the RA, can't tell you what's going on with your student. They'll probably tell me when I was their boss, so and so's mom, so and so's dad asked for my number. We would probably, during training, tell them, point them to us, and we'll have a conversation with them, of, like, why you ask? Like, what do you feel you need the RA's number for? And kind of see what's going on from there. Yeah, please don't ask for the RA's numbers. Again. They're so they're a student too. Yes, they've been trained to support and build community and handle situations. But first thing they are, as a student, I

Scott Benner 29:47
had all of Arden's roommates phone numbers. I never, I never had to contact them. But there was, like, a comfort level, like, you know, in that situation where you think, if you were to get into a situation where, like, there's something wrong, like. It's not just like, you know, I'm imagining someone calling the RA and be like, You tell her to Pre Bolus for her food. Like, not like that. Like, I mean, like, Hey, can you go to that room? I think she's dying like that, right? Like, but if you thought that, people might say, Well, if you thought that, then call 911, except you do not want to be the parent who sent an ambulance to the dorm room for a compression low there's this dance that happens inside of you as a parent, where you're constantly I just a caregiver in general, right? Like, also, I want to say I understand why the RA wouldn't give out their number. I didn't ask the RA for a number, but I understand why they wouldn't. What I'm saying is, if you if everyone could put themselves in the position of, I think it's possible that someone I am charged with caring for is in a dire medical situation. I know it's happening and I'm powerless to do anything about it. If everyone could feel like that for a second, we'd all just hand each other our phone numbers in this situation, like, you know what I mean? Like it's, then it comes down to the one person who would misuse it, and then that's, I guess, why it's, you know

Speaker 1 31:06
that? But also, think about it, they're a student, so they're not unless they're on call when this is happening. They might not be in the building, yeah, they might not be on campus, they might be in class, like, they might not be available, right there. They might not answer their phone, right? They have their own lives, their own things that they have to do. So it's not part of it is, yes, the misuse and the burden of that student potentially dealing with just any sort of question or response, responding to caregiver or parent, but it's also the idea that they might not actually be able to physically help because they're not in that location, right? They might not answer the phone, right? So they're not a reliable resource in the sense of, their job is not to just be available for students. Their job is to be a student and support other students during certain times that they're scheduled, right?

Scott Benner 31:58
So fire extinguisher, they're not hanging on the wall waiting for a problem, right, right?

Speaker 1 32:02
Exactly. Which is more of the bigger reason really, that I'm like, don't rely on them as somebody to be able to communicate back and forth or do these things, because they're not, they're not there. I'm also assuming

Scott Benner 32:13
that at three o'clock in the morning, if you call the RA and you're like, oh my god, I think my kids nine, and the person on the phone goes, Hey, man, what's up? You'd be like, Oh, okay, I've, I've found a high person at a party, and, like, now I'm trying to tell him, my daughter's having, she's like, right on, like,

Speaker 1 32:28
they have their own lives and nothing, right? Like, if they're not supposed to be working, they can go do most things. Yeah,

Scott Benner 32:35
no. And I think it's important to bring up, by the way, to get to that point, which is, it makes sense when you're thinking about it, until in practice, you realize when push comes to shove, it's probably not going to be valuable to have it set up that way.

Speaker 1 32:48
Exactly Okay, which is why I want to go over, what should you do if your student, or if you believe your student is having an emergency is unresponsive? You've done all of the things that you have set up. You've done the Find My Phone, the sugar pixel, whatever the system is, you've done it. You're not getting a response from them. Call campus police or safety. They are going to be the ones that have somebody available to pick up the phone, 24/7 and take your call, look into what your campus has, right? But they should have somebody available at all times. You don't have to necessarily go right to 911, right, give them all the information. You can explain what's going on, and they're going to take it from there. And this is the part where, like, you're going to have to wait, right? They're not going to keep you on the phone. They're not going to necessarily call you back afterwards and say this is what happened. And we found Susie, like, again, FERPA kind of prohibits all of this, so it's gonna, it's gonna be the, probably the longest X many minutes of your life while you're waiting for this to happen. But they're going to take that information and they're gonna go from there, right? Typical protocol, like, if I'm thinking back to my days as campus professional, typically, if it's in the middle of the night, campus police is probably just going to go to the room and knock on the door. They can't get in, they'll have called a housing staff member to come meet them so that we can unlock the door and go in and see what's going on and take it from there and then, depending on what happens, like we've said before, you may or may not be notified. So if they're going to the hospital, and part of their protocol is to notify you, you're going to get that call that says they've been they've been taken to x hospital. Here's the number. Most of the time if the student is not needing to be transported, we're going to tell them to reach out to you. We're not going to call the Yeah,

Scott Benner 34:39
call your mom back, because we're not calling her, right, exactly. Yeah, I would just like to remind people that in this scenario now, this is emergent care. This isn't prophylactic, like you're not trying to stop a bad thing from happening. Once a bad thing has happened, the handling of that thing in a college setting is going to take the time that it takes. It's not. The way you were going to handle it at home, you're going to be in an emergency situation now, and you're going to rely on, you know, 911, type responses, those take time, even campus security. Like, they're not going to they're not Superman, they're not going to fly right over there, right you call, you explain it. They have to get there. They've got to knock on the door. They've got to wait for campus house. Like, it's sad, but you're now in the middle of an emergency situation. It's no longer, I think I can stop my kid from having, you know, XYZ happen to them, right? It's a tough pill to swallow to think that you're not going to be able to get in front of this thing, especially if you've been raising a kid with diabetes for 20 years, and you have over and over again, stepped in front of those bullets and stop those things from happening like you feel like, I know I could get this set up to fix this before it collapses. But you have to understand that you're you don't live in that situation anymore. This is a completely different ecosystem, and this is the best ecosystem will do for you,

Speaker 1 35:55
right? Because, again, if you're trying to rely on roommates, other students, things like that. One, they might not be there when it's happening. Two, we can't really force them to say, Oh, you have to, you have to do this for Arden, let's say, like, yeah, your roommates, like, you have to do No, no. That's not something we can require of them. That's also not something we can require even ask our staff to do I had, actually, when I was a graduate rd in my master's program, I had an RA that had diabetes. I was like, Oh, yeah. Like, and she was somebody that sometimes would have morning lows and wouldn't necessarily wake up. I believe her mom had, like, asked me, or even she had asked me, like, Oh, can you, like, check on me? And I brought that, I felt comfortable with it, right? Like, I have diabetes, like, I get it, like, making sure you're okay. And I brought that to my supervisor as a as I should, and just as a conversation, I was like, I'm good with that. Like, that's right. And they're like, no, like, liability wise, like, that can't be on you, right? Right? Like, just as a school thing, so, like, that's the other thing, right? The liability of putting that on either other students or on really untrained professionals, right? Is probably something the school is going to be like, no, like, that's not. We have to follow our protocol. Martin

Scott Benner 37:07
has three friends. She's grown up with forever, right? And for the entire time that she's been has had diabetes and known these kids. I thought these three girls know what they're doing, but there was a moment when the four of them were together and Arden had a seizure. Like, one of them literally froze. One of them was lost, and one of them was like, I know what to do, but it took three people being there for us to come up with one who was like, Don't worry. I remember this and like, you know, like, did the thing like, but I wouldn't have known how to bet on which one of those it was going to be. In case you're wondering, you know what I mean, like, when it was the one it was, I was like, Oh, interesting. So, yeah, yeah. So even, even if you as a roommate, you allow someone to put that on you, you don't know how you're going to respond in the moment. You really don't exactly, yeah, yeah.

Speaker 1 37:51
And that's why it's called the trained professionals, right? They're trained and have done handled these types of situations that they're not going to freeze that they're going to be able to think through it right and do what needs to get done. While that might take a little longer, it's still a better option than calling the roommate who isn't there, or calling the roommate who's like, I don't know what to do, and just freezing and then you've now taken x amount of time to get to the people that will actually be able to support your student.

Scott Benner 38:20
But this is an upbeat conversation.

Speaker 1 38:21
I know Yes, and I'd rather you have the information and be prepared right then also feel flustered when you're getting a response you weren't expecting. Yeah, it's not what you want, but it's what to expect. This is an

Scott Benner 38:39
accurate representation of what your experience is going to be like in college with this situation.

Speaker 1 38:44
Exactly. Yeah, okay, and so what are some things that we can do, or that I suggest that you could do if you're really if you're really struggling with this, you're really concerned about the schools process, right? Because, again, every there's nuances to every school, the different things that are in place because of size, because of resources, all of these things, right? Check the Clery report. See what information is in there about their protocols, their general protocols for emergencies. If that's not kind of quelling the anxiety or like is not super helpful for this particular type of situation, what I would suggest you to do as, again, a former housing person who met with parents and dealt with parents and walked them through things, is to speak to somebody in the housing office if your student's going to live on campus. And I would suggest looking into that as soon as your student makes a decision, and especially if that's if they decide in the spring that this is where they want to go, reach out in the spring. Don't wait into the summer. Summer, surprisingly, while there's no students, is very busy for us, right? We're prepping. We have all day trainings for weeks with the professionals, with the students, not that we won't get back to you. We will. Yes, but our schedules are much more chaotic than potentially in the spring. So if you have that ability, go look on the housing website. See who's working there. Look for probably an assistant or associate director, depending on what the staff structure looks like if they have training in their title, even better, just because those are the people that are literally in charge of training the staff, training the RAS on these types of procedures, you could go straight to the director. The reason I say assistant or associate, you're probably going to get a response faster just because they're more focused on specific areas where the director is kind of managing a lot of other things. So they're going to give you a faster response. Send them an email and request to talk to them in whichever way you prefer. Maybe that's email communication. Maybe you want to schedule a phone call, maybe you want to go in person, but send them an email requesting a conversation in whatever format you feel most comfortable with. Explain that you want to learn more about the emergency procedure. My child has type one diabetes. They'll check with your kid to make sure that they're okay with that, and you're wondering what like and then list what you're what you're looking for. I suggest this because it gives the staff time to pull the information together in a non rush manner, making sure you're being connected in the best way possible. You know, even during the school year, like we're running back and forth, it's very easy to play phone tag for a while if you're trying to get in touch with an upper level staff member in housing that doesn't help anything on your side or their side. So that's why I suggest send an email outline what you're looking for, and then that way they can get back to you, either schedule that meeting, or if you just want an email response, they can get back to you that way, and they're not trying to answer your question. Because, right, this is a little bit nuanced, right? It's a very specific, well, it's an emergency situation. It's something very specific. That way they can kind of get things together and give you a succinct answer, instead of kind of being caught off guard by this very like, detailed, nuanced question while they're in the middle of everything, whatever else is going on. So I highly suggest figuring out the best person, send them an email and kind of go from there to get a better understanding of what would happen. And they might tell you, like, this is the number I would call, right? They might give you something more specific based on how their protocol works that you wouldn't get otherwise, if you didn't talk to somebody. But we want to support you in whatever way we can. We can't make exceptions for our protocol if you will, like, if you're like, Well, can you give me the rd on calls number? We're not going to do that most likely, but we want to support you in understanding what would happen to you can be prepared as well in that situation. So that's kind of my suggestion, to get that additional information. Once

Scott Benner 42:50
again, you are awesome. That is excellent, very complete, very clear. I love you doing this with me. Are we going to do more of these? What else is on your list? I don't

Speaker 1 42:59
think I have anything right now? Okay, we did almost everything else. There's one more that I hadn't fully fleshed out, and honestly, I didn't really nothing else came to me. But I think, based on what I'm working on for the upcoming you might have another part in the future for me. Yeah, because there's stuff so I want to do. I'm hoping to do some more stuff on, like caffeine and like ADHD meds if you're taking them on prescribed so, like, we could do some more maybe, like, okay, related things.

Scott Benner 43:30
Yeah, sure.

This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juice box. A huge thanks to Omnipod, not just my longest sponsor, but my first one. Omnipod.com/juice box. If you love the podcast and you love tubeless insulin pumps. This link is for you. Omnipod.com/juice. Box. A huge thank you to one of today's sponsors, gevok, glucagon. Find out more about Chivo hypo pen at G VOQ, glucagon.com. Forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juice box. I also want to thank Andrea for coming on and putting together this fantastic conversation over these three episodes. If you'd like to learn more about the diabetes link, the place where Andrea works, go to the diabetes link.org they are there to help your child get through college with type one diabetes. If you're living with type one diabetes, the after dark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma. Trauma, addiction and so much more. Go to Juicebox podcast.com, up in the menu and click on after dark there, you'll see a full list of all of the after dark episodes. 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, wrongwayrecording.com, you.

#1377 Heading to College with Type 1 - Caregiving

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

+ Click for EPISODE TRANSCRIPT

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.