#1648 Harper Valley PTA
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An ICU nurse mom recounts her child’s type 1 diabetes DKA diagnosis, winning school CGM monitoring, juggling celiac, and data-driven management with pump/CGM—practical advocacy and tactics parents can replicate.
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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
Here we are back together again, friends for another episode of The Juicebox podcast.
Ashley 0:15
Good morning. My name is Ashley. My family and I are from Melbourne, and our daughter was diagnosed in April of last year, very unexpectedly, with no family history at all. If
Scott Benner 0:33
this is your first time listening to the Juicebox podcast, and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all. Look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com. Up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin while you're listening, please remember that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin.
The episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. Touched by type one.org I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since CGM comm slash Juicebox, this episode of The Juicebox podcast is sponsored by the Omnipod five and at my link, omnipod.com/juicebox you can get yourself a free, what'd I just say, a free Omnipod five starter kit, free. Get out of here. Go click on that link, omnipod.com/juicebox check it out. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox. Links in the show notes. Links at Juicebox podcast.com.
Ashley 2:47
Good morning. My name is Ashley. My family and I are from Melbourne, and our daughter was diagnosed in April of last year, very unexpectedly, with no family history at all.
Scott Benner 3:02
Melbourne, Australia. Melbourne, Florida, Florida. I was like, You don't sound Australian at all. But this time of the day for recording, this is when the Australians record. Usually, I wish I was from Australia, do you? Yeah? That'd be cool. Cool accent. Yeah, to who, though probably not to you, you wouldn't even know. Nobody even knows what they sound like. Doesn't even matter, although, you know, it's one of people's biggest concerns when they come in the podcast. I'm worried about how my voice will sound, and I don't want people to think that my voice sounds like x, y, z. They always have like. I don't want to people to think my voice is too whiny or too nasally or something like that. And I always say the same thing. I'm like, no one listening knows what you sound like. Like, you're just a voice when that happens. Like, don't worry, nobody cares. So anyway, all right, so you're from Austin, you're from, let's say you're from Australia. It's much more exciting now. So you're from Florida, you have family. It sounds like, how many kids? Two kids, boy and a girl? Yeah, how old 11 and 711? And seven? You're married? Yes. How long you been married? Oh, gosh,
Speaker 1 4:11
13 years.
Scott Benner 4:13
Okay, seems fair. You say this diagnosis came out of nowhere.
Ashley 4:18
Yes, frustrating. Intro to our diagnosis. We had recently moved here to Melbourne, so we had to find a pediatrician. We chose a fairly large pediatric group. Started seeing this new pediatrician. Seemed fine at first, because you know, what do you go to the pediatrician for, like, if you're sick, and once a year? So not a big deal. My daughter got the flu last year in January, and she stayed sick for weeks. It just would not go away. And I kept taking her and taking her back to this pediatrician, and I felt like he just was not listening to me. The cough wouldn't go away. I was using the. Vacation that, you know, explicitly states on the box don't use for more than 14 days, and we've been using it for like, a month
Scott Benner 5:06
now, under the doctor's direction, you were using it for longer. Yeah? Okay, yeah. Every time
Ashley 5:11
I went, I would say, you know, we're still having to use this. We're still having to use, you know, Mucinex for a cough, it won't go away. And he's like, Okay, well, if it's working, just keep using it. But that's not really solving
Scott Benner 5:21
our problem. How long are people supposed to have the flu for?
Ashley 5:24
I mean, typically, your symptoms should only last a few days, right? I mean, you may not feel great for a week or so, but it shouldn't hang around in your body for that long.
Scott Benner 5:33
So at first it's just, Hey, she's been sick longer than I expected. I'll go back to the doctor. But then there's a third return to the doctor.
Ashley 5:42
Oh, in total, from January until April 23 which was our diagnosis, there were 13 pediatrician visits.
Scott Benner 5:52
Sorry, I'm not laughing you. I'm laughing at the pediatrician. It was
Ashley 5:55
actually unbelievable. So for background, I'm an ICU trauma nurse. Okay, so I have a little knowledge,
Scott Benner 6:03
a tiny bit you think, right?
Ashley 6:05
Yeah, and I know when to advocate for my patients. That's one of the things that I'm very proud of in my nursing career. But then add in that it's my child is a totally different aspect of advocating. So when I kept taking her the third or fourth visit, he was like, Well, I don't really know what you want from me. Like, I want you to be a doctor. I want you to do a chest X ray. I want you to send us to a pulmonologist. I want you to do allergy testing. Like, why is she still sick? This doesn't
Scott Benner 6:32
make sense. How old? I mean, I'm just going on a limb and say it was a guy, right?
Ashley 6:36
It was a male, yeah. He was probably late
Scott Benner 6:41
60s.
Ashley 6:42
No, I'd say 50s. I'm going to be nice and not go too deep into that part of
Scott Benner 6:47
it. Listen, you have a job where you're around doctors. Sometimes they age out of their knowledge base and they age out of their exuberance. That happens, right?
Ashley 6:58
Yeah, you know, I'm going to say I work with, I personally work with physicians who are in their late 60s, some 70s, and they are the most intelligent physicians I've ever met in my entire life. Okay, so do I think it's an age issue? No, not always, but I do hear what you're saying. I think it's more of just a respect and listening to your patient. That's the biggest thing that you have to do in medicine is listen to the patient, because they're the only ones who know what's going on.
Scott Benner 7:26
I'm making this up in my head, so you'll tell me if I'm way wrong, but I mean, I know other nurses right, and they'll say sometimes that doctors don't want to be told what to do by a nurse. Yes. Do you think that that could have transferred into your private life?
Ashley 7:41
So I don't ever tell anyone that I'm a nurse. Okay? Ever I don't. I don't think it's relevant for me coming in to see you for an appointment with my child.
Scott Benner 7:50
I agree, by the way, I think you run the risk of having them just make assumptions instead of doing their job, right?
Ashley 7:56
Yes, and we know that as nurses, we know that. So I typically don't tell anyone what I do for a living. I have actually lied a couple times and just say, Oh, I'm a stay at home mom, yeah. So they don't have, you know, because it's not relevant, and it shouldn't matter that I have education in the medical field for you to do what's right for your patient. It shouldn't make a difference.
Scott Benner 8:17
No, no, I was, I was wondering if, maybe, if there was ego, there was like, I don't need this, this ICU nurse telling me how to take care of this kid's cough. You know what I mean?
Ashley 8:26
I'm sure there was at the end, for sure, that day that I told him, You know, when he asked me what what I wanted, he ordered everything that I said. So I took my daughter to a pulmonologist, chest X ray, allergy testing, all of the things, and nobody could find anything wrong with her. So I went back again, and I'm like, you know, here we are. We're still having the same issues. She's very tired all the time. She still has this cough. She's not sleeping well, oh well, you know, it'll go away eventually. Just again, brushing
Scott Benner 9:01
me off. Really that simple months into it, yep, yeah. So this was gonna go away when she dies, Ashley, yeah,
Ashley 9:08
this was, like, in the February probably we're at now, she started peeing the bed. And so as a nurse, you know, I'm like, well, this isn't great. Did diabetes ever pop into my head in the beginning? No, because we don't have any family history. We don't have anyone in our extended family. We don't have anybody with type one diabetes. So no, that wasn't something that I was like, Oh, this is an issue. So then I I thought, maybe she has a UTI. So I took her back again. You know, Hey, she's peed in the bed a couple nights this week. Can you please see if she has a UTI? So we pee in a cup? Nope, nope, no, UTI. Okay. So what's the deal? Why or why is this now the new symptom? He told me,
Scott Benner 9:53
maybe she's stressed about being sick for three months.
Ashley 9:58
Can you just tell. Me what a six year old might be stressed about, like, is it the flavor popsicle that they're going to eat after dinner? Or I'm not understanding what could possibly be stressing out a six year old that they're peeing the bed in their sleep? Yeah, yeah. There's no reason for that. So that day, him and I did not have nice words for each other, and I asked for a new physician. We switched. That was right at the beginning of March. Of course, had to come back another day to establish with this new doctor, met her, kind of explained what was going on my concerns. But I have two kids, so of course, you know, there's not always just one thing going wrong in your life. There's multiple. So my son had stuff going on as well, and so we kind of, my daughter took the back seat. She seemed okay. You know, the symptoms kind of slowed down. We were dealing with other things. And then into March, she started with the peeing the bed again. And I went to pick her up from school one day, and she had a different outfit on. And I said, you know, Harper, why are you wearing a different outfit? And she said, because I had a potty accident at school today, and right then I knew something was terribly wrong. Yeah, she's almost seven. She doesn't pee her pants. This isn't right. So back, we went to the doctor, and we peed in a cup again, and nobody could figure out what was wrong. Did they ever poke her finger? No, did they ever send us for lab work, no,
Scott Benner 11:21
any simple, like, basic lab work would have turned up a glucose, right?
Ashley 11:25
Yeah, yeah. My thing now, looking back is, why don't you just poke a kid's finger? It literally takes three
Scott Benner 11:31
seconds, you know? You know why they don't, though, right? Because the first million aren't going to have diabetes, and then someone's going to say you're wasting money on this test. Yeah, that's crazy. Yeah, I take your point, like, but I think it's crazier that somebody could be sick for that long and just no one noticed. Well, just keep being told, like it's gonna go away. Well, you know, it's obviously not going away. Like, you know it's right, okay. You said she had the flu. Is this still the flu? It was
Ashley 11:57
long and it was exhausting and frustrating. So I had a grandfather, my favorite person in the entire planet, get very sick, and my daughter and I flew up to visit him in April. He has since passed. And the weekend we spent with him, she peed the bed. The whole entire weekend we were there four nights, and she peed the bed every single night we were there. And so I called my husband and I said, please make her an appointment for first thing, you know, Tuesday morning, we land. Monday evening, we're going to the doctor first thing in the morning. Like, this is crazy. And I that night, I told my husband, I think
Scott Benner 12:30
she has diabetes.
Ashley 12:32
And he's like, No, there's no way. It's that, you know, whatever.
Scott Benner 12:36
It's the flow.
Ashley 12:38
Yeah, it's probably still the flow. So he made the appointment. We flew home. My daughter was so sick, Scott on the plane, I bet I just looking back, I was so angry with myself. She ate gummies on the airplane. I don't let my kids have gummies. I'm a mean mom, so it was like a treat to have it on the airplane. And she drank apple juice, and I can't even imagine what her sugar must have been. And she was so sick when we landed, she wouldn't help do any like, she wouldn't help carry her bag. She wouldn't walk through the airport. It was like, Harper, come on. Like, we got to get moving. We have to get off the plane and, you know, get to the
Scott Benner 13:18
car. She's like, Mom, I'm dying. I can't Yes,
Ashley 13:21
literally, yeah. So we made it into the car. She fell asleep on the way home. My husband's like, what is going on? I'm like, I don't know. I don't know if she's motion sick, like, I don't know what's happening. So maybe we just go to the hospital. And he's like, okay, so we came home, she had peed herself in the car, you know, showered her off. She laid down. I went to go get a little bag pack to take her in, and she fell asleep. And I'm like, Okay, I don't know. Maybe she was motion sick. Now she's sleeping. Like, do you pick her up and still take her? Do you let her sleep? Obviously, looking back, I didn't make the right decision. So we slept through the night. The next morning, we woke up, took her to her appointment that was scheduled. I explained everything again that was happening and how frustrated I was, and they said, Can she pee in a cup? And can we poke her finger? And I said, she can pee anywhere you want. She's peeing everywhere.
Scott Benner 14:12
Yeah, no kidding. Watch this. Pee in a cup, and it's crazy.
Ashley 14:17
They poked her finger. The doctor came back in the room, and I knew immediately on her face, I will never forget it. And she said, I'm really sorry. Your daughter is diabetic, and she is in DKA, her ketones were four plus, and her sugar was 594 and we're going to call an ambulance. And I just lost it. I was devastated because I I felt like I knew for a while, but I didn't know.
Scott Benner 14:46
Well, that's the part I want to get back to, because it feels like you talked yourself out of it twice. Yeah. How does that happen? Today's episode is brought to you by Omnipod. Did you know that the majority of Omnipod five. Users pay less than $30 per month at the pharmacy. That's less than $1 a day for tube, free automated insulin delivery, and a third of Omnipod five users pay $0 per month. You heard that right? Zero that's less than your daily coffee for all of the benefits of tubeless, waterproof, automated insulin delivery. My daughter has been wearing an Omnipod every day since she was four years old, and she's about to be 21 my family relies on Omnipod, and I think you'll love it, and you can try it for free right now by requesting your free Starter Kit today at my link, omnipod.com/juicebox Omnipod has been an advertiser for a decade, but even if they weren't, I would tell you proudly, my daughter wears an Omnipod. Omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Why don't you get yourself that free starter kit, full terms and conditions can be found at omnipod.com/juicebox Today's episode is sponsored by a long term CGM, it's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGM, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year. At my link, you'll find those details and can learn about eligibility ever since cgm.com/juicebox
Ashley 16:49
check it out. Looking back, there were things that I should have been like, oh my god, Ashley, you know, take her to hospital or take her somewhere else. But when you don't think that it's that diagnosis.
Scott Benner 17:03
I don't know. I really don't. Your brain keeps searching for other possibilities.
Ashley 17:09
Yeah, yeah, absolutely. I mean, it's your your baby, you know, I have two healthy kids. She's six. Like, there's no way it's something that bad,
Scott Benner 17:18
yeah, but it was, No, I get your point. And have you had illness through your life, or your husband has, or No,
Ashley 17:24
I mean, not anything crazy, you know, yes, we've both had covid. We've had the flu. You know, my son gets the flu almost every year.
Scott Benner 17:33
But nobody's like chronically ill. No, yeah, it's another thing that I think the people who aren't chronically ill just it doesn't pop into their head that there could be something, right? Be something wrong, you know what? I mean, not just, like, wrong for now, but wrong forever, right? Yeah, I don't think that's the thing that pops into people's minds.
Ashley 17:51
Usually, no, and it's just so, like, devastating. I mean, they, you know, I, I've met so many wonderful people, including you, through this podcast and through, you know, diabetes groups, we came home after the horrible time that we had figuring everything out and that ridiculous crash course they give you on, you know, oh, just keep her blood sugar around 180 and she'll be fine. And you come home and you're just lost, you know, and everyone's like, Oh, thank God you're a nurse. That literally means nothing, just so we're clear.
Scott Benner 18:21
I haven't said this in a while. I think the last time I said I got some anger online, but I'll say it again. Some of the most lost mothers and fathers who have been on this podcast or spoken to me privately have been nurses or doctors.
Ashley 18:36
Yes, yeah, because people think that we should just know, and I don't think that anyone realizes, you know, nursing school is two years of hell. Let's just be for real. It's awful, and it's all book work. You don't truly learn how to like care for a human being hands on. It's all book work. And the endocrine system when you study in nursing school is maybe a couple weeks, and diabetes is like, oh, there's type one and type two, next
Scott Benner 19:06
chapter, yeah, 20 minutes on Tuesday morning, right? Yeah. People think
Ashley 19:11
you just know, you know every subject of every illness ever right? And we don't like we specialize, and
Scott Benner 19:19
beyond that. It took me a while to figure this out through conversations with healthcare people too. But like beyond that, when you're in the hospital with type two diabetes or type one diabetes, they're not there trying to fix your a 1c and make it a five, right? You're there because you broke your foot. You're there because you had surgery on your gallbladder. You like, you know, you were there. They just don't want you to get low and pass out, and they don't want you to be too high for too long. They're not actually trying to manage your blood sugar that well and and they know nothing, right? Oh, please. I You only have to go the hospital a couple of times before you realize that no one understands what's happening, even that like you know when you're I mean, as. An example, like, when you're in there, because you have, I don't know, cancer, and because I went through this with my mom, and who, you know, was kind of borderline type too, and an endocrinologist comes through and like, well, you just, you know, give her the diabetes menu, and which, by the way, shockingly, has incredibly bad food for you on it. It's terrible. You get, like, pancakes every day for breakfast, yeah? But you just can't have, like, the the dessert or something like, it's always hilarious, right? Yeah. And, you know, and then they say, you know, how's your blood sugar been? They don't mean, hey, is your blood sugar been 105 all week? They mean, like, you haven't, like, passed out, right? Cuz, if you haven't passed out, then we're good, yeah. And which is fascinating, too, because healing is is really impeded by high blood sugars, absolutely yeah, but yet, in a hospital setting, what you're telling me, and what most people have told me, is there's not the expertise to put a person on another person and have them manage their blood sugar.
Ashley 20:55
Well, no, absolutely not. And we don't manage type one and type twos differently. No, totally different.
Scott Benner 21:01
It's crazy. I'll tell you, that'd be a great job for me, you and me
Ashley 21:05
both, because the frustration that surrounds it when I'm at work,
Scott Benner 21:09
yeah, well, I bet you now it feels a lot different than it did before, huh?
Ashley 21:13
It's horrible. It just frustrates me so badly, sure that these poor people don't get cared for correctly, you know? And then I come home and I tell my poor husband, who's not medical at all, if something ever happens to me, you know, if I'm ever not there and you have to do something with Harper, you have to know everything, because no one knows. Yeah, don't. Don't let them touch her pump. Don't let them do anything unless you know what's going on, because they have no idea what they're doing.
Scott Benner 21:44
I know you use the word advocating once already, but I've come to the conclusion that it's a bad word, because it's not really what you're doing. You don't mean like, I'm advocating for myself. What you're really doing is you're trying to force somebody to pay attention long enough and not do something wrong, yes, and that's what we do with patients. Yeah, right. So, you know, when someone says you have to advocate for yourself, like, be really clear what that means. It does. It doesn't just mean, like, Hey, pay attention. I'm over here. I want to be first. Like, that's, you know, I need my TV turned to another channel. Like, it's not on squeaky wheel, because that's kind of how I you know? Like, you would think about it a little bit like, and you know, Oh, they're so busy they don't have time for everybody. Have to advocate for yourself exactly what you told your husband. Like, you have to know what's supposed to happen.
Ashley 22:30
Yes, you have to know everything to keep yourself safe. Yeah, it's sad.
Scott Benner 22:35
That's not how people think of it, no. And that's why they end up sitting in the hospital, you know, something going wrong, and they don't say anything about it. Nothing comes up. My father went to the hospital for a he slipped and fell. He was in his 70s, and he had, you know, other issues, but he had a big cut on his leg, and he had type two diabetes, which, you know, and eventually, like, his blood sugars were 400 the whole time. He never got the hospital. He died there, and a week before that, I said to him, like that, you're never going to heal with your blood sugar this high. Like we have to talk to him about getting your blood sugar down
Ashley 23:08
right, because in the hospital, what we do for diabetics doesn't matter what type. We poke your finger and we cover you a sliding scale, yeah, but we don't care what you eat, and we don't cover your food, right, which makes absolutely no sense. You're literally putting them in a failed system and expecting them to do well, like, you know, working in it is more frustrating. I think that's the hardest part. Is when people say, Oh, she's so lucky. You're a nurse. It's almost harder because I'm a nurse, because I know how failed and flawed the system is.
Scott Benner 23:42
Yeah, until you realize that, like, what's that? There's that stat that one of those, one of those advocates for medical reform, runs around saying that I don't know, like, some large percentage of what's taught in medical school isn't even worth teaching anybody anymore. And you know that it should be revamped, but it doesn't get touched that way and and just look at yourself with diabetes, right like you and trying to help your daughter, it's overwhelming for you trying to help her. Now I'm gonna put it on a 25 year old who just got out of nursing school, like she's gotta understand it too. He's gotta understand it too. Like nobody. That's not how it works. Like this is all like your hair's on fire, trying not to burn the house down. That's how medicine seems to me. Hey, you didn't die. Big success. You're out of here. Now, the other nuts and bolts stuff, it's funny, is almost different. Like, I don't know, setting a broken leg, you know, getting a surgery to have your appendix removed, like, this stuff is very like a to b, and we know how to do some things a lot better than we know how to do other things absolutely. Yeah, so, but everything just feels like health care to you when you're sick and you're running into a hospital. Yeah. Did you think that about health care before your daughter had diabetes? Or was it not a way you thought about it?
Ashley 24:55
No, I know that our systems are flawed, and. And I know that we could do better. It wasn't diabetes, of course, at the forefront of my frustrations now it is, you know, not just for her, but for all of them. You know, just everyone that we've met through this process, they're all experiencing these these struggles than these unnecessary facts that they're told and like, where your kids a 1c should be and, oh, they'll be fine. No, they won't be fine with an A 1c of seven for 15 years. No, it's not right. And I don't know why we're taught that children it's okay if children run higher, or it's okay if children's a 1c is higher, it doesn't make sense to me. I don't get it, like, I just want her to live a normal life with normal numbers, like we do when
Scott Benner 25:52
Arden was really young. That was one of the ridiculous things that was said to me that like, pushed me into the direction I'm in now. It's okay if her blood sugar is high all the time because she's young. Yeah, she's a kid. It's fine. I said, I don't understand what that has to do with anything. Yeah, I can't tell you what I've learned from you. Then there's no follow up answer. They say, Oh, no, that doesn't make sense. Contextualize that for me. Why is it okay that she's young? And then they go, like, oh, okay, so it's just a thing you say, you know,
Ashley 26:27
yeah, like, Why? Why is it okay if they're young and their a 1c, is high, and they won't end up with kidney failure on dialysis. But when you're in her 20s and 30s, it's
Scott Benner 26:35
not okay. Last Friday, I interviewed a guy who actually been on, this was the second time he was on the first time to talk about how he, you know, he's in the how we series, and now he's back, 41 years old, to talk about his quadruple bypass, oh, my god, yeah, because he, you know, got diabetes back in the day, probably was, you know, regular and mph, and then back there for a little bit, and talked about how, like, his a 1c were like, you know, in the eights for, you know, probably 10 or 15 years. And now fast forward to, like, you know, he figured some stuff out, taking really great care of himself. And how does he explain it to me? Says he's a runner. He's the guy who finds himself to be very healthy, you know, he's a runner. And he said I started getting hiccups while he was running, or belching, belching while he was running. And he somehow, luckily figured out that it was when his heart rate rose that he started belching, which led him to a doctor to look at his heart. And, you know, after that surgery, the doctor told him it was like trying to your arteries were like cottage cheese when I was trying to sew them. Awesome, right? Yeah. And so we know that's what can happen, right? Why would you tell somebody, Hey, it's cool if you're a one c7, or eight, like, you know, or you know you're 180 is fine, like, that, stuff like, and the answer, really simply, is, is that there are more moving parts than we have people who understand what those parts yes are doing while they're moving and where they're going to end up while they're moving. And now you're expecting that person to understand this whole process in their mind. From today you and your six year old daughter to 40 years from now, how to direct you. They don't know how to direct you. They don't know how to even philosophize about what might happen one day and how to talk about it without scaring the hell out of you and like, so it all just turns into, like, it'll be okay. Like, awesome. We'll cross that bridge when we come to it, but that bridge is gonna have cottage cheese on the ground that I'm gonna fall through. So thanks a lot. Great. Anyway, cottage cheese bridge. That's how I'm going to think of it from now on. Anyway. So how long ago was this? Ashley, I'm sorry,
Ashley 28:49
my daughter was diagnosed, April 23 of 2024 Oh, wow. So we're a little over a year in most of what I know. And don't get me wrong, our endocrinologist is incredible. I adore him. He is not type one, so to me, that means something, and everything else I learned from you and your podcast, I have done experiments. You did an episode about a guy who wanted to eat Eminem, and it kept spiking him, and so he tried every day with different amounts of insulin with the same amount of Eminem, yeah, my daughter wants to eat cereal for breakfast. She's a kid, and I forgot to tell you, she was diagnosed with celiac three weeks after her type one diagnosis. Awesome. That was super fun. So we had to change our whole diet, you know. But anyways, she wants to eat cereal, and cereal is awful and spikes you, you know, to 300 every time you eat it. So I said, Well, if they can do it with M Ms, then I can do it with cereal. So I got on a measuring cup, and I measured her Cheerios every day and the milk every day, and I played with the insulin until I figured out how she could eat a bowl of cereal. And. Day under 150 and go to school and
Scott Benner 30:03
be fine. Wow. Good for you. And I
Ashley 30:07
tell everyone to join the podcast, because those are the kinds of things that like you're not taught.
Scott Benner 30:12
You know, nobody's gonna say that's either gonna say things like cereal makes your blood sugar high, huh? Yeah, don't eat cereal. Yeah, that's what they tell you. Either don't need cereal, or your blood sugar is going to be high, but it's okay. She's sick. It's fine.
Ashley 30:25
So let me tell you the the other super fun and frustrating challenge that we dealt with after this
Scott Benner 30:30
diagnosis, getting your child back to school.
Ashley 30:35
Okay, my kids go to public school. I obviously knew nothing about type one diabetes management in public schools. So we come home, you know, I kept my daughter home for a little over a week, probably, and I'm calling and I'm trying to get meetings set up with the principal and the counselor and the school nurse and all these people. Okay, so here in our county, our school nurses are employed through the Public Health Department. They're not employees of the school, okay? So basically, you have to work with both, you have to work with the school and you have to work with the Health Department. Okay, fine. So we go to our first meeting. I had bought a sugar pixel for the clinic. I had let Harper go back to school. We put the sugar pixel in the clinic. The school nurse thought that was like the coolest thing she'd ever seen in her whole life. Had it on her desk. She was doing an amazing job keeping an eye on the numbers. And when she started dropping, she would, you know, intervene. It was wonderful. It was working beautifully. So we go to this first meeting, and seemed like it was going well, until I mentioned the sugar pixel, and one of the nurses turned and said to me, oh no, we can't we can't see her blood sugar levels. We can't watch them. We're not allowed. And I said, What do you mean? Well, we've already been to court over this, and we're not allowed to follow her blood glucose levels. And I said, Oh, okay. Well, do you have those court documents that you can provide me? Well, no, well, do you have the type one diabetes management policy that you can provide me that states that you're not allowed to do that? Well, no, I said, then the device is staying in the clinic until you provide me with documentation that says otherwise. No, we can't do that. I said, you're going to do it until we are provided documentation. So she went into the clinic and threatened the school nurse's license if she continued to monitor my daughter's numbers. Who did? Well, call her the boss, public health department nurse. Boss told the school nurse, if she continued to watch my daughter's numbers, she could lose her nursing license. So of course, as a nurse, she's terrified, you know. So she unplugged the sugar pixel, wrapped up the cord and handed it back to me, and I think I was almost just as devastated in that moment as I was in the moment that the physician said to me, your daughter has diabetes. I don't think I've ever been so disappointed and so frustrated in the system,
Scott Benner 33:04
as I was in that moment. We
Ashley 33:06
already had her watching the numbers. There was nothing wrong. It wasn't affecting anyone else. What is the issue? So this turned into a year long battle, and I had to go to the public school board meetings that they do at the town hall monthly and sign up for a three minute appointment to speak in front of the entire school board. And I did it, and I pulled documents from every school county that follows a child's blood sugar in other states. Here locally, I called Tallahassee, I hired an attorney, I started working with a type one diabetes group that helped me and sent resources over, and we fought until it's finally approved. And it took a
Scott Benner 33:53
year. What was the reasoning that they wouldn't do it?
Ashley 33:56
They're not allowed. That's all. They kept saying. It's a liability. It's a liability, if we're watching her number and something happens, then it's our fault, I said, but it's a liability if my daughter is here in the building with you and something happens because you don't know what her number is, yeah,
Scott Benner 34:12
I'm helping you. I feel like this is the kind of answer that you get when stupidity is involved. Yes, yeah.
Ashley 34:19
So the meetings were endless. My husband couldn't sit through them anymore. He got really frustrated and walked out after a couple you know, they kept telling me that I was trying to reinvent the wheel. That was their favorite saying at every meeting. We just don't understand why you're trying to reinvent the wheel.
Scott Benner 34:36
You know? What they told me one time, Ashley, they said, We have a lot of kids in this school with diabetes, they're all alive.
Ashley 34:43
That's what they told me. We've never let anyone die. I said, Is that supposed
Scott Benner 34:47
to make me feel better? I said, I know one of those kids, she's wandering through this school with a 200 blood sugar the entire day. I'm not okay with that. I said, you're telling me that you're okay with that, and she's okay, and I'm like, she's not okay. Okay. You just can't see that she's not okay. Like, you don't know what you're talking about. That was, I think that was one of my argument points that got me moving. Got it moving. You can't just pretend it's okay. You can't just tell me it's okay when it's not
Ashley 35:15
but to them, it's okay because they don't know, you
Scott Benner 35:19
know, yeah, what I told them was, is that their actions will lead to my daughter having significant health concerns 20 years from now.
Ashley 35:28
So I think the bigger issue is that kind of what we touched on earlier with age, and I don't want to blame it on age, but the older population is used to managing type one
Scott Benner 35:43
with injections
Ashley 35:45
and not knowing what your sugar is, you know, we poke it in the morning and we'll poke it before lunch, and then that's it, yeah. And they, they kept saying, you know, well, no one's ever died, and we've taken care of diabetics for 40 years. And, you know, I think one of the ladies who we had to meet with her son. Was a type one, but it was 30 years ago when you were taking care of him as a child. Yeah, that was a type one.
Scott Benner 36:08
Interesting is now you're stuck in that situation where you're not just saying, I would like you to do this for my kid. You're telling that lady you didn't do a good job for your son. Yeah, yeah, yeah. So now it's all very personal coming out is that, I bet you it did.
Ashley 36:23
I tried to be respectful, and again, I didn't ever say I was a nurse. And so one of them told me that the school nurse couldn't sit and stare at my daughter's sugar pixel all day. And I said, I'm not asking her to stare at it. You can tape a piece of paper over it. It's going to alarm when she hits the numbers that I want it to alarm at.
Scott Benner 36:40
Yeah, I'm not asking look at it. She said, Well, you don't
Ashley 36:43
know what it's like to stare at monitors all day when you have all these people to take care of. I said, actually, that's literally what I do for a living, monitors and keep people alive. But if, if I can't stare at a monitor because I'm taking care of one patient and another monitor goes off. That's what tells us something's
Scott Benner 37:02
wrong. It's the same point I make about people's CGM all the time that go. I just stare at it. I said, I'm like, don't look at it till it beeps, right? Yeah, just set it in a place where you can react in time, and then that's it. Don't it's you don't need to stare at it. I'm not trying to make anybody out to, you know, in any certain way. But there's a person I know that's in the diabetes space, right, whose kid is older. You know, this person's older now, their kid was, you know, had diabetes a long time ago. Kids probably in their 30s now, or something like that. CGM came out, and this person banged on a lot of pots, telling people these CGMS are not necessary. I didn't know what my kids blood sugar was when they were on a sleepover. You don't need to know either. You know you're gonna make yourselves crazy, like they were on a crusade to tell people that they were doing this wrong and you were paying attention to stuff. You don't need to be paying attention to them. Blah, blah, blah, blah, blah. And I mean, they really went on and on and on, and all I could think while they were doing it was this person is so afraid to find out that there might be a better way to do this that they did something with their kid, even though there was wouldn't have been their fault. The technology didn't exist, right? They're so afraid to find out that there's a better health outcome for their child that they didn't get, that they don't want the rest of you to have it, just so they don't have to feel the pain of learning that. And isn't that awful, by the way, I don't think it's conscious. I just think it's I think it's kind of how people's minds work sometimes. And they went on for a while like that, telling anybody that would listen. And by the way, they had a bit of a platform at the time. You don't need the you don't need that thing. I raised the kid fine without a CGM. Blah, blah, blah, blah, blah. Now, by the way, the kid gets a CGM eventually. It's the greatest thing since sliced bread. Can't wait to tell everybody how great it is. Just pivoted on a dime. Just went the other way. I watched that from afar, and I was like, You're a piece of how crazy
Ashley 38:57
is this. And I felt like that was the people that I was sat in front of and supposed to talk to was these people that were like, Well, we did it this way, and my kids Fine. Are they? Though? Yeah, you don't remember telling them at one of the meetings like you guys are afraid, because you don't understand what I'm talking about with her CGM and with her insulin pump, and I had one of the ladies tell the entire room full of people while she was doing type one diabetes training at my daughter's school that if my daughter's blood sugar was ever low, just rip her pump off of her. And I stood up and I said, if you ever touch my child's insulin pump, we are going to have a very serious problem.
Scott Benner 39:42
Great. I don't know how you didn't just stand up and go, I give up. I'm gonna leave. We're gonna go, we're gonna give up. We're gonna go, I would move to an island and just live there like it's okay. I can't
Ashley 39:53
give up because of her and she saw me fighting, yeah, and I. Know. Now here we are a little over a year in, and we have met multiple diabetics here locally, and new ones are diagnosed every day, which is another topic that I find crazy. And every time we find out there's a new one, we make a care package of things that we wish we would have known about, and we go visit them, and I make sure to tell them what the school has to do for them, because they have to do it.
Scott Benner 40:25
Now there's a few 100 kids in New Jersey using the Arden's 504 plan. And trust me, the school was pissed about it for a while, I bet, but they were pissed because they had to do something. And by the way, they didn't really do much. They just had to, like they were all of a sudden they were responsible. Like all of this, like, my takeaway from my 504 experience was that that school was doing everything they could do not to be liable in case something happened to Arden, and if she were to have a health concern down the road that wasn't on them, they didn't give a that's what I got out of it. Because you know that like, you know, we've been helping kids with type one diabetes for all you had to say was, why don't we go find them all right now and see how they're doing? Yeah, yeah, because we'll what we're going to do is we're going to find a certain amount of them who thought, hey, you know, 200 is fine while I'm at school. And then they got out and they were like, well, 200 is fine. 220 is probably fine. You know, it was okay when I was in high school. It's probably okay. Now they're gonna live with an eight and a half a 1c their whole life, and then they're gonna have an actual problem with something they can't come back from. And right, you know what? And then if we trace that all backwards, we can trace it back to a meeting, just like the one we're in now, where you decided that it was okay for my kid not to be healthy for the rest of their life, because why? You didn't want the sugar pixel to be in the room, right? Because you don't know what you're talking about. Just say you don't know what you're talking about. We could re educate and start over right now, and everybody fan, you know, everything would be fantastic. You wouldn't just be out my kid. You'd be helping every other kid here, and every other kid who's on their way.
Ashley 41:57
The first time they told me that I was successful, one of the the lady that I referred to as the boss. She actually called me personally and thanked me. She said, I wish there were more mothers like you that advocated and fought for what's right. And she said, because you won. And now within our county, you know, if a parent requests that we follow their glucose, then we have to. And I said, Well, you know, that's good. And she said, Well, you don't sound that excited. I said, because I wasn't pushing for just this county. I'm pushing for the whole state. I call Tallahassee. Like, I don't, I'm not settling for just this county. Yeah, well,
Scott Benner 42:35
that's good on you, actually. But like, what's the other side of it? Like, did she not even agree with the thing she was fighting for because she was just doing her job. Or did you change her mind and show her a different side of this? Which do you think happened?
Ashley 42:47
I changed her mind, and I only know that in the end because of the phone call later, you know, we provided documentation. The ADA has released documentation on school guidelines, like they're they're they're federal. They're, you know, you you have to follow their glucose values if the parent or guardian request it, it's in writing. Yeah, so the schools technically can't fight it, but they were trying, you know, the school board ended up backing me. Thank God. They were like, Yeah, we agree. What's the issue? Well, then the issue was the health department wasn't agreeing with me, and it's their nurses, and they they didn't want to take on the liability of having their nurses monitor the sugar values, but you're responsible anyway.
Scott Benner 43:34
Actually, ignorance, stupidity, laziness. What's the biggest problem?
Ashley 43:40
Ignorance? Probably the just don't know. I Yeah, and I don't necessarily think that it's bad that people don't know. You know what I mean, you don't know, yeah, but you have to be open minded and like willing to learn. And it's not just these frustrating events with like schools or medical professionals, it's our friends, it's my family, it's, you know, like, if you're not going to take the time to just sit and try to understand what she's going through and how different her life is now, we don't need you around. I mean, it's, it's just
Scott Benner 44:18
really that simple. Sounds like you're gonna have a hearing with your aunt? Yeah? Well, yeah. I mean, it is just, I mean, I'm just gonna say it's very human, right? Like you get into a rhythm with something you don't want to learn anything new, and when you hear something different, it sounds wrong, because you feel like you already know the answer. I don't even think it's that they don't care to know. I think it's that they believe you're wrong. Probably, they probably think you misunderstand it. Maybe then that's the weird part. Like, why would you not make the instead of making the leap, like, oh, Ashley doesn't know what she's talking about, because I already have an opinion about this. Why would you not say, hey, you know what? Her kid just got diabetes. She might have a little more understanding of this, like, close up understanding. This than I do, but everybody just thinks they're right. I'm telling you that this is what keeps people alive and what stops people from learning at the same time. Like if you walked around constantly all day believing that you were wrong, it would probably turn into a mental illness. You have to believe in yourself, but then you get into one of these situations, and you don't have the ability to say to turn that off for a second. Go. Well, let me re evaluate what's happening here, right? Instead, you just go, No, I'm right. I have a thought. It's worked for me before. This is right. That makes you wrong. I'm on Team right. You're on Team wrong. Now we can fight to the death. Yeah, it's awesome, isn't it? And by the way, what you went through in that hearing is no different than talking to somebody online or watching your favorite political dissertation happen in front of you. It's all the same thing, like we all get stuck in what we think we're married to our thoughts. We really believe that they're they're infallible. So I know you did a great job. Bad for the kids, yeah, I tell you what, you probably had an easier time with the school than you're going to have with
Speaker 1 46:02
your family, yeah?
Scott Benner 46:04
Because at least the school was, like, bound by some rules and laws, your family just probably is, like, a she's always been a pain in the ass, and that's going to be the end, yep.
Ashley 46:14
And I'm okay with that, as long as I'm doing what Harper needs. You know what? I mean? It's not easy. It's not, this definitely isn't what I ever like envisioned, obviously, for my life or my child's life. I think we're doing pretty well. I her last a 1c was 6.0 so we got a little room still to make
Scott Benner 46:34
adjustments. Well, it sounds like you're doing great, but
Ashley 46:37
it's hard, you know? And this, this just isn't what you picture. And I don't know, the celiac, that's fun. That's a whole
Scott Benner 46:44
nother. Tell me a bit about that. Like, the celiac comes pretty soon afterwards. I ask people this all the time, but if you could get rid of one type one or celiac, which one would you get rid of?
Ashley 46:53
So, you know, we ask Harper that all the time we play the like, you know, what would you do game? And we give choices, and we've asked, What would you get rid of? Diabetes or celiac? And without fail, every time she says, diabetes, okay. And it honestly shocks me, because to me, celiac is harder for a kid. You know, she's left out at school, she's left out at church, she's left out at birthday parties. You know, we can't go to many restaurants because of all the stupid gluten free menus that people are eating for, like, a health fad, yeah, sure, you have a gluten free menu, but are you preparing it celiac safe, like in a kitchen that's not cross contaminated, and nobody's doing that?
Scott Benner 47:35
Yeah. Do you ever ask her why she answers that way? Try to dig in a
Ashley 47:39
little bit, like the shot. I don't like the shots. Mom, yeah.
Scott Benner 47:43
Oh, it's funny. So you, as an outsider, see the celiac is more trouble, but she sees the diabetes is more trouble.
Ashley 47:50
Yeah, you know, she says that, but I just, I feel like, if she could have a day without each I don't know that she would still pick diabetes because of always being left out, like, the amount of time she comes home from school in tears because they a kid had a birthday party, and the parent brought in cupcakes and she couldn't have one, you know, and those poor teachers that have no notice that cupcakes are coming into the classroom, so we get no notice to have time to, like, take her something that's safe. I don't, I don't, I don't know. I just feel like she would change her mind if she had a day to realize, like, oh, maybe this would be easier, because diabetes doesn't stop you from eating a cupcake.
Scott Benner 48:31
Yeah, I see your point. It really upsets her that much to be in that situation, the cupcake situation, for example,
Ashley 48:39
yes, yeah. It breaks her heart, because she's little, you know, when she's older, I don't think it's gonna matter, right? And she's eating healthier than, you know, any of us did, that's for sure, because she can't have all the crap.
Scott Benner 48:52
Yeah, no, no, no. I mean, in the end, like you said, paying attention to your health, having some of these issues sometimes does lead to people being, you know, I mean, you don't want these issues, but it does force you into taking, you know, better care of yourself a lot of the times.
Ashley 49:07
Yeah, yeah. And the celiac was just as shocking as the diabetes. No symptoms, no nothing. Our endo just ran the full like autoimmune panel, and her IGA came back, I don't know, over 500 and it's supposed to be like, less than 15. And we were like,
Scott Benner 49:25
have you looked through extended family for other autoimmune stuff and found anything? Yes.
Ashley 49:30
So after everything, of course, then people are like, oh yeah. Well, you know my brother's mom's cousin, you know? So yes, we've heard that there is some on my husband's side of the family, more thyroid, like Hashimotos. So yes, it's on that side. And of course, we didn't know anything about it until now, but I don't know what it would have done differently, either. Mm. You know what I mean, I still don't know if knowing that someone on your side of the family has Hashimotos would have triggered my brain to be like, Oh, I should get my kids checked for autoimmune diseases because maybe they're diabetic. I don't I don't know that. It would have made it
Scott Benner 50:17
different, right? And if somebody came up to you and said, hey, you know that boy you like, or you're thinking of marrying, he's got autoimmune on his side of the family. You'd be like, right? It'll be okay. Don't worry about it. Yeah. No, no. It's just nice to know now that you know. So you can, you know, look out for other things. Or, you know, I always, I used to think like or help other family members with their trouble, but nobody listens. So that doesn't matter. You know, to go to like, a an aunt or a sister in law or something, and be like, Hey. I mean, not for nothing, but I can see you have this problem. Like, they're not, that's not what it is. I'm like, Okay. I'm like, I hear I'm like, that's fine, yeah, I stay out of that stuff now, because nobody, if they come to me, I'll answer. But like, you know, I don't try to help people anymore, because, like, not in my personal life, like, because nobody will listen, right? I'm not a doctor or anything like that. I didn't go to medical school. I mean, I've told you guys before, like, I barely got out of high school. I do know a lot about this stuff, and, you know, like, they don't see you that way. It's the same thing as, like, your kids, like, you know, Arden. I brought this up recently. I was, Arden was having trouble with something, and I said, I, you know? I was like, hey, this, you know, whatever the answer was. And she goes, I don't think you know this. And I was like, like, all right, you're probably, like, only one of four people who thinks that. But that's fine, and it's just because I'm her dad, not because, of course, yeah, it's just what it is. I'm gonna just tell you that I am really old. Harper Valley PTA comes from a 1968 country song, so I guess a song that I probably heard from my parents listening to music, it was later turned into a movie and a short lived TV series. But listen to this. The song tells the tale of a widowed mother who gets a judgmental letter from her daughter's school parent teacher association criticizing her for being too unconventional and inappropriate in how she dresses and lives her life. In response, she goes to the PTA meeting and publicly calls out the hypocrisy of its members, pointing out their own scandals and flaws. And your daughter's name is Harper, and this is my best podcast title ever. I like it. Thank you. I'm really proud of myself. By the way,
Ashley 52:22
I like it, and I'm sure the school board, and who knows who else, has some lovely choice words about me.
Scott Benner 52:29
Oh, yeah, though they probably, oh, I'd love to be in a room with probably, like, this lady is a bitch,
Ashley 52:37
and I can be but like, if you would just do what's right for these poor kids, it wouldn't be an issue, yeah, but you
Scott Benner 52:42
know, if you would have just put your head down and capitulated, they would have just never thought of you again, and that would have been the end of
Ashley 52:48
it. We're actually moving out of Florida, and I've had a few people reach out to me and like, we just want to thank you for everything that you did for the schools, because now our child is safe like now every day we know that someone's watching her values at school or his values, and that means the most to me. Like I know that my daughter would have been okay because her nurse is wonderful. But like for all the others,
Scott Benner 53:13
that's what I wanted, I hope it lives on in a legacy, because I do wonder now that Arden has been going out of school for a while, if it, you know, it doesn't get forgotten. You know what? One or two school nurse changes or, you know the person in charge of, you know that kind of stuff changes hands once or twice, and you're right back where you started
Ashley 53:31
again. That would be terrible, and not surprise me in the
Scott Benner 53:34
least. No, no, of course not. We're gonna write it down. Oh, my goodness. You know, I don't know if you've ever heard me talk about, I mean, I saw this all coming, you know, and so I'm sure I was a huge pain in the ass to people, too. But, like, same thing, like, if you don't try to kill my daughter, I won't be a pain in the ass. Like, I'm not looking I'm not looking for a problem. They did let me set up a little system, but it wasn't easy. I went to the school six months at least before Arden was going to start kindergarten, and I was like, look, hey, you know, I like getting ahead of this stuff. That way we don't have to, like, rush, you know, like on day one or whatever, like, let's get this in place. And they literally laughed. I can still feel standing in the office being laughed at by a group of people who were like, he's here for next year. He's so nervous. Hahaha. We know what we're doing. There's other kids in this school that have diabetes, and I'm like, okay, and I did. I put my head down, I took him, and we come back for school, and then it hits you, you know, it hits you right away. Day one, they don't have a plan yet. She's still gonna be there. Of course, a problem couldn't happen on day one, right? So, like, now you just close your eyes and hope, you know, put a, put a cell phone on the kid like, you know, my five year olds walking around with an iPhone. That's not what I wanted. You know, they send her home with her 504 plan. That's literally a piece of paper with four bullet points on it that wouldn't I was, like, fascinated. I went back, took a meeting, got in the room with a guy, and he goes, What's the problem? I said, I. PHY you not to kill her with this 504 plan. I was like, There's no way you're going to keep her alive with this. I was like, she's five man. She's wearing an insulin pump. She doesn't know how to take care of herself. No one here understands it. Your one missed Bolus or one lunch is 20 minutes late away from her having a seizure. Do you know what to do if she has a seizure? You want her to have a seizure? You know, I put together a 504 plan and brought it back to him. They're like, this is we can't do this. And I was like, Sure you can. And then, you know, then you we got involved in the the horse trading and back and forth, and we got something set up in place, and it was not good still, but I at least got them to test her blood sugar, call me and let me make the decision about the insulin, so I took them out of the loop on the insulin. Yeah, and that worked really well, until the one day they didn't call me. Oh my gosh, that was it like she was on her way out to she was supposed to go there before recess, get her blood sugar checked before she went on a recess, and then she would come back in after recess, and they, I forget, they check her blood sugar again. And I use long time ago, she's 21 now, the meat of the story is that there was a little kid who had a, like a heart issue in the school, and he had some sort of a problem. He had to go to, like a treat, like a machine. They had to put him on, like for, I don't know exactly what like to help him. And so this all happens just a couple of minutes before they're supposed to call Art and have her come down and test her blood sugar before she goes out on recess. So they forgot about her. They forgot about her. And I had timers on my phone. So my timer goes off because my timer was set for after the phone call, like, so that if the phone call doesn't happen a couple minutes later, I'm reminded of it, because I was for my mental health, trying to teach myself not to stare at a clock too, right, right? So timer goes off, okay, and then you sit there for a second. My first thought was, like, well, be human. Like, maybe there's a bunch of kids in there that just haven't gotten like, what am I gonna call bug them, you know? And I waited a couple minutes, and I was like, All right, I'm calling. I called. I get put through to the nurse's office. The nurse picks up the phone, she decides the nurse's office said, hey, it's Scott. I'm calling about and she goes, Arden, and hangs up the phone. And I was like, Okay, so now I'm just sitting there in silence, and a few minutes go by and I get a phone call, and she's like, hi, and she explains all to me what happened at the other kid and we missed our and out on the recess I got her she was up on the monkey bars. I got her down. I'm gonna test her blood sugar right now. Chester blood sugar. Blood Sugar was 50, so my five year old was in the top of the monkey bars with a 50 blood sugar. And I made sure she was okay, got dressed, drove to the main building where the the superintendent worked out of and stood outside of his office till he saw me, and I recanted all that to him, and then at the end, I said, Listen, I just want you to understand that if you kill my daughter, I will spend the rest of my natural life making everyone here miserable. I said, I'm not a litigious person. I'll sue you all. I'll put my name on the front of this building. I'll make sure every one of you gets fired, and I'll have nothing else to do but to focus on this because of the horrible, horrible, disastrous sadness I'll be living in for the rest of my life, because you killed my daughter because you couldn't just follow these couple of rules that we wrote down, right? And he goes, what do you need me to do? And I said, there should be a somebody, just somebody, an aide, whose job it is to remember that it's 1015 because the nurses can't, they just prove that to you, and they shouldn't have to, by the way, right? And he's like, I can't afford an aide. I said, You got to ask yourself, how much does the aid cost versus how much is it going to cost for you to defend yourself against my lifetime of lawsuits, when you kill my daughter and she's dead, and then he hired an aide? Oh my gosh, that that man was later tragically killed in a car accident, and I feel terrible like all the time that he and I never we always had a contentious relationship, because
Ashley 59:10
you threatened him so many times. Well,
Scott Benner 59:13
just that one time, but he didn't let go of it. He hated me from there on out. And sometimes stuff would come up, and then they'd want to dig their heels in on something, but they'd look up and I was standing there, and they'd be like, Well, okay, we can't dig our heels in here, because this guy's gonna make a problem. To your point, my so big a long way of saying to your point in a room somewhere with the door closed, I'm just a fucking asshole to them, but I don't care, right? The tiniest little bit what they think of me. What I care about is our never had a problem like that at school ever again. 12 years she was fine
Ashley 59:46
well, and we don't want to come in like that. No, you know what I mean, come in and like, let's get this stuff in order and take care of my kid and call it a day. But actually, I
Scott Benner 59:56
was the bright, shiny, smiling guy coming in six months. It's early. Like, hey, listen, I don't really want to pressure you guys. Like, let's get this done now, so that we don't have to rush around and do it later. Like, this will give us plenty of time to go back and forth. Won't have to be contentious. No, they didn't want that. What they wanted. They wanted to ignore it. I couldn't let them do that and so, but that doesn't make me a toll. Other things make me a toll. Ashley, not that.
Ashley 1:00:18
Oh yeah. I have a list of things, a list that make me No, no, trust
Scott Benner 1:00:23
me, there's plenty of you got plenty of room to stand on if you want to make a point here and there, but like, not on this thing. And I was very kind and very It wasn't until they until that happened. And by the way, even in that moment, let me be honest. Now, all these years later, I wasn't that upset, but what I saw was, this is my one chance, my one chance to prove my point. Scare them straight, get this going in the right direction. So I walked in there, and I was a little extra dramatic, and I was a little extra boisterous, and, you know, and they said, you'll have to make an appointment. I was like, that's not gonna happen. I'm not leaving here, you know, was it performative a little bit, but it worked, yeah, but it worked. And in the end, she was, you know, she was 50 on the top of a monkey bar. She could have fallen right off there. And just what would they have said? Oh, sorry, we were taking care of the other kid? Yeah, I'll put my five year old in a wheelchair for the rest of her life, and I'll, I'm sure you're sorry. Is really going to fix it all up. This whole thing is hard enough without people setting up roadblocks all over the place. That's all.
Ashley 1:01:36
Can I tell you the call I got yesterday, Saturday, so my son is 11. He's my older no chronic health issues yet. I guess I should say I get a call from his best friend's mom, and I'm at work, and she's like, Hey, you have a minute? I'm like, sure. She just starts sobbing. And I'm like, okay, like, what have the boys done? They've gone on to a bad website or something, you know. Oh, is that
Scott Benner 1:01:59
where your mind went? I went right to cheating husband, but go ahead.
Ashley 1:02:02
No, her son, our little buddy that's here with my son all the time, is over in the hospital, diagnosed with type one.
Scott Benner 1:02:10
Oh my god, your kid's patient zero. She's giving it out to other kids.
Ashley 1:02:14
I know I'm like, It's contagion. Oh my gosh, that's terrible. He got it here.
Scott Benner 1:02:20
How old he's 11. Oh, that's terrible, yeah.
Ashley 1:02:25
And the education they were providing, of course, we drove over, you know, and spent the day with them yesterday, and took a little care package, and I sat and listened to them and give her the the spiel. And I just shook my head. And we left, and Harper said, Mommy, that was not right.
Scott Benner 1:02:40
Now we have a six year old who knows more than the diabetes educator in the hospital. Yep.
Ashley 1:02:45
So they're covering him with sliding scale, but no, no food coverage.
Scott Benner 1:02:49
Is it like, like a lot of situation, or is there, like, a strong honeymoon going on?
Ashley 1:02:54
I don't understand why or the reasoning behind any of it. And of course, the poor parents are like, so overwhelmed that you're trying to explain, like, hey, they should be covering for not only his finger poke, but like, the food that he's about to consume, you know? And they're like, What are you talking about? Because it's all new to
Scott Benner 1:03:12
them. Yeah, I went through this last year with a person I know privately, whose, you know, son was diagnosed, and every time I said something, I thought, Oh, she's not gonna believe that. And then it took months, and then one day she was like, I think I get that you really know what you're talking about. And I was like, okay, cool. Because, like, you said, like, they at the hospital, they said this, so yeah, oh my gosh, if they're asking for help, you're gonna be like, a, like, a support system for them in the beginning here.
Ashley 1:03:42
Oh, of course, yeah, anything that she needs, I already told her, you know, I don't want to overstep and I don't want to like knowledge overload you because there's a lot and I'm here if you need me. And I gave her our local indo phone number, which is who she's going to go see tomorrow, because I'm a little nervous with the people in Orlando that she's seeing, and I'm not sure what they're teaching. I mean, we're here for anyone who needs support.
Scott Benner 1:04:07
That's very nice of you. That's awesome. And they'll, she'll be like, she doesn't know yet, but she'll be lucky that, uh, that you're on her side, that's for sure. And her son too. The idea about, like, not wanting to overload people too, that's more than valid. It's really important, like, you have to be able to give them, like, real baseline stuff at first, because all the emotions and the lack of sleep and the guilt and everything else, it's like, swirling around, is it makes it hard to Yeah, it's why, the way the hospital does it is so hilarious to begin with, where they're just, like, they just blurt everything out at you, and then you just, You just, you walk out and you don't remember a damn thing.
Ashley 1:04:43
Yeah, it's like a three hour class. They made her sit through. Yeah, I'm like, she doesn't know what you said in the first sentence.
Scott Benner 1:04:51
Yeah, she has no idea. Like, I've been very open and told people before that while the nurse was in Martin's room, maybe the day after she. Got, oh, I forget, like, they got her out of DK, and then, like, she was sitting there, and she comes in to explain, like, this is Arden's insulin to carb ratio, and this has 30 carbs in it. So then you take this number and do this with that, and that's how you and I was, like, I just started crying, like, literally, like, not like, a little bit, like, I just, like, started talking, yeah, because not that I couldn't figure out the math, but in the moment I couldn't, no, you can't. I started like, oh, it's like, oh my god. Like, I'm a stay at home dad. Like I'm looking around the room, like, this is me, right? My wife's gonna go back to work and I'm gonna kill her, that's how it felt. And, you know, I'm gonna give her too much of this, or too little this, or blah, blah, blah. And I just like, my wife was like, she stepped up, and she's like, Hey, he's gonna need a minute. And you know, like, kind of sent the nurse out of the room. My wife's like, listen, just very simple math. You You know how to do this? Like, it's gonna be okay. And I'm like, I know. I just can't think. Like, I could too much, I couldn't put it all together.
Ashley 1:05:53
Yeah. And somehow, here we are, and they're alive,
Scott Benner 1:05:57
pretty much for the most part, if you get good information, it's not going to work out. You know, if you don't get good information, you get cottage cheese arteries.
Ashley 1:06:09
We don't want any of those.
Scott Benner 1:06:11
No, that's not what you want, especially when it's not necessary. And all the technology exists, and all the know how exists. But still, when you talk, I interviewed an endo the other day, like, last week, his episode will be up in a while. He's pretty good, you know, you ask him, like, well, how does all this happen? Nobody wants to say, like, it's just like, Man, this is it, man. It's the fragility of life, the limitations of humans. This is as good as it's gonna get. You think, if everybody just tried harder, this would get better. But that's not, that's not what this is about. Like, it's, it's just too complicated for the person that you intersect is not going to have all the information either, not going to know how to dole it out to you. Like, I mean, look at you. Just said, like, Don't overload them. Like, there's a thing they don't know. Like, instead they think, like, oh, we said it. They know. Like, what that is that how learning works. That's how you recall learning working. Honestly, it'd be like, if I put you in your car and like, you had you drive into a wall, then you jumped out, and you're like, you weren't dead. You're like, oh, dazed. You just been through an accident. I start yelling, like, you know, equations at you like, hey, what's the answer to this one. You're like, I just what, you know, I can't focus right now. I don't think there's a great answer.
Ashley 1:07:26
I can tell you one thing we need to do is stop handing out those damn black and white papers that say hyper and hypoglycemic signs and symptoms, and they're literally all the exact same. They're the same symptoms on both papers, and they're like, Here you go. Take these home, and this is how you'll know if something's wrong with your kid.
Scott Benner 1:07:47
That's so funny. You said that. And you're like, that's it. I did this thing when Arden was really young and I was out of my mind, like, you know, there's no CGM. So my trying to, like, I was trying to figure out, like, is there another way I can, like, be sure that she's okay. And I got into my head one day, like, maybe I can see it on her face. And so I would like digital cameras were a thing then. So every time I tested her blood sugar, I took a picture of her, and then I matched it with the blood sugars, and then I went back and took away the blood sugars and tried to figure out like by the picture. And it didn't matter like, because at one point they were like, you know, dark circles under her eyes, but that could be high or low. That's the next thing I thought, is, like, everything I'm looking for is there in both scenarios, yeah, yeah,
Ashley 1:08:34
yeah. And that's what they're teaching at the schools. They're like, here we're going to do diabetes education and teach all these you know, teachers that have no medical background what to look for in your kids. So if they're sweaty or shaky or irritable or are you serious right now,
Scott Benner 1:08:51
just call Yeah. Well, if you think something's wrong, call the nurse, because Please, yeah, just
Ashley 1:08:56
send her to the nurse, or call me, for the love of God, just call me, then
Scott Benner 1:09:01
the nurse will show up and tell you about all the rules that she has to follow and why she can't help.
Ashley 1:09:06
Let me go look at the black and white paper and see if any of these
Scott Benner 1:09:09
match. It is frustrating that that so many of the things on the one list are on
Ashley 1:09:13
the other list. Yes, it makes no sense to people who don't know what they're looking at.
Scott Benner 1:09:19
Well, you know what it gets you ready for. It gets you ready for a life of living with autoimmune issues, because they all pretty much bring up the same problems. So, yeah, so, you know, I don't want anymore. I'm tired all the time. Well, it could be this or this, or this, or this or this. I go awesome, but like,
Ashley 1:09:35
can we be capped out at two? Is diabetes and celiac?
Scott Benner 1:09:39
It seems like that would be fair, but I doesn't work that way for everybody. So I hope so for you, yeah, I hope. I hope so. I hope so for Harper, Ashley, you were awesome. This was terrific. Did I not ask you anything I should have? It was a pleasure. Cool. I thought so, dude, this is a good bitch session. I enjoyed this. This is good once in a while to do this. I have it on my list of things to do on the podcast in the future, one day where I'm just gonna let people come on and in short bursts, complain for like 10 minutes and then just make it a little episode of them just complaining. I think maybe that'll help other people get out their frustrations.
Ashley 1:10:15
That wasn't my intent to complain.
Scott Benner 1:10:20
No, no, the same issues. Yeah, they're important, and it's and it's a new diagnosis, and it's fresh in your head, and it's a listen. I mean, from the doctor to the school, that's more than somebody should have to deal with. I mean, your doctor not being able to figure out your kid's problem for three months is insane, and now you know, she could have died during that, yeah, yeah. She could have got decay, like, a lot, like, could have come on her a lot faster, and you might not have noticed it. And you know, you somebody was just on here the other day that somebody told them, like, just wait till tomorrow. And they didn't wait. And it turns out that not waiting probably saved the kids life. But, you know, the person on the phone was like, It's okay, you can come in tomorrow. So that crap happens all the time. Anyway. Thank you very much. I really appreciate this. Hold on one second for me. Okay.
Okay. This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram, and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. This episode of The Juicebox podcast is sponsored by the Omnipod five and at my link, omnipod.com/juicebox you can get yourself a free, what'd I just say, a free Omnipod five starter kit, free. Get out of here. Go click on that link, omnipod.com/juicebox check it out. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox links in the show notes, links at Juicebox podcast.com, are you tired of getting a rash from your CGM adhesive? Give the ever since 365 a try, ever since cgm.com/juicebox beautiful silicone that they use. It changes every day keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card 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, 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. If you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast. Type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com.
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