#1648 Harper Valley PTA

Summary

Juicebox Podcast: Type 1 Diabetes

Episode #1648 – "Harper Valley PTA"
Host: Scott Benner
Guest: Ashley (parent, ICU trauma nurse)
Release Date: October 9, 2025

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Episode Overview

This episode features Ashley, a mother and ICU trauma nurse from Melbourne, Florida, sharing the journey of her young daughter’s type 1 diabetes diagnosis and the aftershocks that rippled through her family, their medical care, and interactions with the public school system. The discussion highlights the frustrations, advocacy, and actionable strategies for navigating incompetence and inertia in both medical and educational bureaucracies. Throughout, Scott and Ashley offer practical insights and stories designed to empower families to be "bold with insulin" and to refuse to accept inadequate standards for their care.

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Major Discussion Points

1. Diagnosis Journey: Frustration and Delays

• Ashley recounts a protracted, frustrating diagnostic process (04:13–14:46) after her 6-year-old daughter, Harper, experienced months of illness, missed signs, and a lack of urgency by medical providers.
  • Thirteen pediatrician visits over four months, with complaints continuously dismissed or misattributed to flu or stress.
  • Despite Ashley’s medical background, the physician failed to conduct a simple blood glucose test, even after continued symptoms and bedwetting.
  • Quote (Ashley, 11:56): “It was long and it was exhausting and frustrating.”
• Daughter is eventually diagnosed with T1D and DKA:
  • Blood sugar: 594 mg/dL
  • Ketones: 4+
  • Emotional shock is compounded by guilt and anger over delays.

2. Expertise Does Not Equal Immunity

• Despite being an ICU nurse, Ashley describes feeling helpless and overwhelmed once in the realm of pediatric type 1 diabetes, challenging the myths around healthcare professionals knowing everything.
  • Quote (Ashley, 18:17): “Some of the most lost mothers and fathers ... have been nurses or doctors.”
  • Nurses receive only cursory education about diabetes and rarely about modern management tools.

3. The Flaws in Medical and Hospital-Based Diabetes Care

• Hospitals often provide only minimal diabetes management, focusing on emergencies rather than long-term outcomes.
  • Quote (Scott, 19:33): “They're not actually trying to manage your blood sugar that well ... They're not there trying to fix your A1C and make it A5.”
• Sliding scales and absence of meal coverage were highlighted as common but deeply flawed approaches.
  • Quote (Ashley, 23:19): “You're literally putting them in a failed system and expecting them to do well.”

4. School System Barriers: Fight for Safe Care

• Navigating the public school system: After diagnosis, Ashley faced another set of obstacles—school nurses were barred by the health department from monitoring Harper’s CGM data due to perceived liability.

  • The "sugar pixel," a device to monitor blood glucose, was forcibly removed after the health department threatened the school nurse’s license.
  • Required lengthy advocacy, including speaking at school board meetings, hiring an attorney, and referencing ADA guidelines.

• Systemic ignorance and resistance to change:

  • Opposition often came from entrenched staff who previously managed diabetes by infrequent finger sticks and refused to recognize new technology.
  • Notable exchange:
    • Scott (34:43): “We have a lot of kids in this school with diabetes. They're all alive.”
    • Ashley’s Reply (34:48): “Is that supposed to make me feel better?”

• Victory and impact: After a year-long struggle, the school system changed its policy, now requiring nurses to monitor CGM devices upon parental request.

  • Quote (Ashley, 41:56): “Because you won. And now within our county ... if a parent requests that we follow their glucose, then we have to.”

5. Culture of Denial and Resistance

• The episode explores how older generations of school nurses and diabetes caregivers resist adopting new tools and concepts, often to justify their past (now outdated) approaches.
  • Scott (38:16):
    • “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.”

6. Community Building and Pay-It-Forward

• Support for other families: Ashley and her daughter create care packages and help newly diagnosed families navigate both the medical and school systems.
  • Example: Reaching out when her son’s best friend is diagnosed, highlighting the limits of hospital diabetes education (62:25–64:43).

7. Managing Celiac and Type 1 Diabetes

• Harper is diagnosed with celiac disease weeks after her diabetes diagnosis, adding complexity to daily life, social experiences, and meal planning.
  • Emotional toll from social exclusion at school and events due to celiac.
  • Quote (Ashley, 47:40): “The amount of times she comes home from school in tears because ... she couldn’t have one [cupcake]”

8. Parental Advocacy in Practice

• Scott shares stories of advocating for his daughter in schools, the adversarial climate that results, and the necessity of “making noise” to ensure children’s safety.
  • Sometimes, drama and confrontation are necessary to break through bureaucracy. (see 55:54–61:08)
  • Both agree that they never intended to be difficult, but persistent resistance forced their hands.

9. Empowering Through Education & Experimentation

• Ashley credits the podcast for teaching her practical, experimental approaches to diabetes management (like pre-bolusing and insulin adjustments for specific foods).
  • Quote (Ashley, 29:32): “I played with the insulin until I figured out how she could eat a bowl of cereal and stay under 150 and go to school and be fine.”

10. The Limits of Hospital Education and Need for Ongoing Support

• Hospital diabetes education is often overwhelming, rushed, and insufficient for families in crisis.
  • Ashley (64:47): “It’s like a three hour class they made her sit through … she doesn’t know what you said in the first sentence.”

11. The Challenge of Changing Minds

• Both the medical system and personal circles (family, friends) resist or misunderstand the realities and needs of T1D, underscoring the mental toll on caregivers who not only manage their child’s condition but must continually educate and advocate.

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Notable Quotes & Memorable Moments

• On being disregarded by doctors:
  • Ashley (06:01): “I know when to advocate for my patients … but when it’s my child, it’s a totally different aspect of advocating.”
• On hospital protocols:
  • Ashley (19:50): “They know nothing. … We don’t manage Type 1 and Type 2s differently. No, it’s totally different. It’s crazy.”
• On why finger pokes are rarely done for sick kids:
  • Scott (11:32): “Because the first million aren’t going to have diabetes. And then someone’s going to say, you’re wasting money on this test.”
• On peer support:
  • Ashley (40:07): “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.”
• On legacy and change:
  • Ashley (53:14): “I’ve had a few people reach out to me: ‘We just want to thank you for everything that you did for the schools, because now our child is safe.’”
• On celiac vs. diabetes:
  • Ashley (47:08): “We’ve asked, what would you get rid of, diabetes or celiac? … Without fail, every time, she says diabetes.”
• On school resistance to innovation:
  • Scott (36:41): “Don’t look at it till it beeps.”
• On limitations of symptom sheets:
  • Ashley (67:26): “All the exact same. They’re the same symptoms on both papers.”

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Key Timestamps

• 03:59–14:46 – Diagnostic Odyssey & Missed Red Flags
• 18:17–23:42 – Why Medical Training Isn’t Enough for T1D Parenting
• 23:42–26:36 – Hospital Management Shortcomings
• 29:32–30:19 – DIY Solutions for Food and Insulin Management
• 32:19–43:40 – School CGM Policy Battle; Systemic Resistance
• 47:08–49:26 – Navigating Dual Diagnoses: T1D and Celiac
• 55:54–61:08 – Real-Life Stories of Confrontation and Advocacy in Schools
• 62:25–64:47 – Supporting Newly Diagnosed Friends/Community
• 67:26–69:35 – Frustration with Standard Diabetes Education Materials

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Tone and Style

• Candid, empathetic, and irreverently humorous.
• Both host and guest are unflinchingly honest about frustrations and practicalities, frequently using humor and irony as coping mechanisms.
• Language is direct, conversational, and designed to empower and embolden listeners, both by highlighting systemic failures and demonstrating successful advocacy.

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Takeaways and Actionable Insights

• Persistent advocacy is essential in both medical and educational systems—being “a pain in the ass” may be the only way to obtain proper care.
• New technology (CGMs) should be embraced by schools, and parents have a legal right to demand adequate monitoring.
• Fellowship and support among families are vital, including sharing real stories and practical tips not found in textbooks or hospital handouts.
• Education for families should extend beyond hospital walls: One-time crash courses are insufficient; safe, effective management requires continued guidance, experimentation, and community resources.

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Conclusion

Ashley’s journey is both a caution and a call to action for all T1D families: do not accept substandard care, question policies, and connect with others who have walked this road. The episode serves as both a roadmap and a rallying cry for those navigating T1D in a world that often lags behind both in compassion and technology.

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For more resources, visit JuiceboxPodcast.com.
Join the conversation and support network on Facebook: Juicebox Podcast: Type 1 Diabetes.

Transcript

[A]

Here we are back together again, friends, for another episode of the Juice Box Podcast.

[B]

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.

[A]

If this is your first time listening to the Juice Box Podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. Look for the Juice Box 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 juiceboxpodcast.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 Juice Box 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 1. Go check them out right now on Facebook, Instagram and of [e-mail] 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 1 diabetes. Touched by type1.org I'm having an On Body Vibe alert. This episode of the Juice Box Podcast is sponsored by Eversense 365. The only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year, not every 10 or 14 days. Eversensecgm.com Juicebox this episode of the Juicebox Podcast is sponsored by the Omnipod 5. And at my link omnipod.com juicebox you can get yourself a free what I just say? A free Omnipod 5 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@ omnipod.com juicebox links in the show notes [e-mail] Good morning.

[B]

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.

[A]

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.

[B]

I wish I was from Australia.

[A]

Do you?

[B]

Yeah, that'd be cool. Cool accent.

[A]

Yeah. To who, though? Probably not to you. You wouldn't even know. Nobody even knows what they sound like. It doesn't even matter. Although, you know, it's one of people's biggest concerns when they come on 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 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. You're from. Let's say you're from Australia. It's much more exciting. No. So you're from Florida. You have family? It sounds like. How many kids?

[B]

Two kids. Boy and a girl?

[A]

Yeah. How old?

[B]

11 and 7.

[A]

11 and 7. You're married?

[B]

Yes.

[A]

How long have you been married?

[B]

Oh, gosh, 13 years.

[A]

Okay. Seems fair. You say this diagnosis came out of nowhere?

[B]

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 medication 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]

A month now under the doctor's direction. You were using it for longer?

[B]

Yeah.

[A]

Okay.

[B]

Yeah. Every time 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 our problem.

[A]

How long are people supposed to have the flu for?

[B]

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.

[A]

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.

[B]

Oh. In total, From January until April 23rd, which was our diagnosis, there were 13 pediatrician visits.

[A]

Sorry, I'm not laughing you. I'm laughing at the pediatrician.

[B]

It was actually unbelievable. So, for background, I'm an ICU trauma nurse.

[A]

Okay.

[B]

So I have a little knowledge.

[A]

I mean, a tiny bit, you'd think, right?

[B]

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 make sense.

[A]

How old? I mean, I'm just gonna go on a limb and say it was a guy, right?

[B]

It was a male. Yeah, he was probably late 60s. No, I'd say 50s. I'm gonna be nice and not go too deep into that part of it.

[A]

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?

[B]

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.

[A]

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.

[B]

Yes.

[A]

Do you think that that could have transferred into your private life?

[B]

So I don't ever tell anyone that I'm a nurse.

[A]

Okay.

[B]

Ever. I don't. I don't think it's relevant for me coming in to see you for an appointment with my child.

[A]

I agree. By the Way, I think you run the risk of having them just make assumptions instead of being doing their job right.

[B]

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.

[A]

Yeah.

[B]

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.

[A]

No, no, no. I was. I was wondering if maybe if there was ego, there was like, I don't need this, this. This ICU nurse telling me how to take care of this kid's cough. You know what I mean?

[B]

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 me off, really?

[A]

That simple? Months into it. Yep.

[B]

Yeah.

[A]

So this is going to go away when she dies, Ashley? Yeah. Yeah, yeah.

[B]

This was like into February, probably. We're at now she started peeing the bed. And so as a nurse, 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 1 diabetes. So, no, that wasn't something that I was like, oh, this is an issue. So then I thought, maybe she has a uti. So I took her back again. 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. No. No uti. Okay, so what's the deal? Why are. Why is this now the new symptom? He told me maybe she's stressed about.

[A]

Being sick for three months.

[B]

I said, can you just tell me what a 6 year old might be stressed about? Like, is it the flavor popsicle that they're gonna 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.

[A]

Yeah, yeah.

[B]

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 backseat. 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.

[A]

Any simple, like basic lab work would have turned up a glucose, right?

[B]

Yeah.

[A]

Yeah.

[B]

My thing now, looking back is why don't you just poke a kid's finger? It literally takes three seconds.

[A]

Yeah, but 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.

[B]

Yeah, that's crazy.

[A]

Yeah, I take your point, like, but I think it's crazier that somebody could be sick for that long and just.

[B]

And no one noticed.

[A]

Well, just keep being told, like, it's going to 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?

[B]

It was 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 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 she has diabetes. And he's like, no, there's no way it's that, you know, whatever.

[A]

It's the flu.

[B]

Yeah, it's probably still the flu. So he made the appointment, we flew home. My daughter was so sick, Scott, on the plane.

[A]

I bet.

[B]

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 gotta get moving. We have to get off the plane and, you know, get to the car.

[A]

Yeah. She's like, mom, I'm dying. I can't.

[B]

Yes, literally.

[A]

Yeah.

[B]

So we made it into the car. She fell asleep on the way home. My husband's like, what is going? 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 backpack 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. Sure.

[A]

Yeah, no kidding. Watch this.

[B]

Peed in a cup and it's crazy. 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 4 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 that I. I didn't know.

[A]

Well, that's the part I want to get back to because it feels like you talked yourself out of it twice.

[B]

Yeah.

[A]

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[B]

Looking back, there were things that I should have been like, oh my God, Ashley, you know, take her to the hospital or take her somewhere else. But when you don't think that it's that diagnosis? I don't know. I. I really don't.

[A]

Your brain keeps searching for other possibilities.

[B]

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. Yeah, but it was.

[A]

No, I get your point. And have you had illness through your life or your husband has or.

[B]

No, 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.

[A]

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 wrong. You know what I mean? Not just, like, wrong for now, but wrong forever.

[B]

Right?

[A]

Yeah. I don't think that's the thing that pops into people's minds usually.

[B]

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 PODC and through diabetes groups. We came home after the horrible time that we had figuring everything out and that ridiculous crash course they give you on, oh, just keep her blood sugar around 180 and she'll be fine. And you come home and you're just lost. And everyone's like, oh, well, thank God you're a nurse. That literally means nothing. Just so we're clear, I haven't said.

[A]

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.

[B]

Yes.

[A]

Yeah.

[B]

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 bookwork. 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 chapter.

[A]

Yeah. 20 minutes on Tuesday morning. Right? Yeah.

[B]

People think you just know, you know, every subject of every illness ever.

[A]

Right.

[B]

And we don't, like, we specialize.

[A]

And beyond that. And 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 2 diabetes or type 1 diabetes. They're not there trying to fix your A1C and make it A5.

[B]

Right.

[A]

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.

[B]

And they know nothing.

[A]

Right. Oh, please. I. You only have to go to 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 it's like, well, just, you know, give her the diabetes menu and. Which, by the way, shockingly, has incredibly bad food for you on it.

[B]

It's terrible. You get, like, pancakes every day for breakfast.

[A]

Yeah, yeah. But you just can't have, like, the. The dessert or something. Like, it' always hilarious, right?

[B]

Yes.

[A]

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. Because if you haven't passed out, then we're good.

[B]

Yeah.

[A]

And which is fascinating, too, because healing is. Is really impeded by high blood sugars.

[B]

Absolutely.

[A]

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.

[B]

Well, no, absolutely not. And we don't manage type one and type twos differently. No, it's totally different. It's crazy.

[A]

I'll tell you, that'd be a great job for me.

[B]

You and me both. Because the frustration that surrounds it when I'm at work.

[A]

Yeah. Well, I bet you now it feels a lot different than it did before, huh?

[B]

It's horrible. It just frustrates me so badly.

[A]

Sure.

[B]

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.

[A]

Yeah.

[B]

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.

[A]

I know you used the word advocating once already, but I've come to the conclusion that it's. It's a bad word because it's not really what you're doing. You know what I 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.

[B]

Yes. And that's what we do with patience.

[A]

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 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. You have to advocate for yourself exactly what you told your husband. Like, you have to know what's supposed to happen.

[B]

Yes. You have to know everything to keep yourself safe.

[A]

Yeah.

[B]

It's sad.

[A]

That's not how people think of it.

[B]

No.

[A]

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 of. 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 2 diabetes, which, you know, and eventually, like, his blood sugars were 400 the whole time. He never got out of the hospital. He died there. And a week before that, I said to him, like, dad, 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.

[B]

Right. Because in the hospital, what we do for diabetics doesn't matter what type of. We poke your finger and we cover you with sliding scale, but we don't care what you eat, and we don't cover your food.

[A]

Right.

[B]

Which makes absolutely no sense. You're literally putting them in a failed system and expecting them to do well. 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.

[A]

Yeah, 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 outta here. Now, the other nuts and bolts stuff, it's funny, is almost different. Like, I don't know, setting a broken leg, getting a surgery to have your appendix removed. Like, this stuff is very A to B. And we know how to do some things a lot better than we know how to do other things.

[B]

Absolutely.

[A]

Yeah. So. But everything just feels like health care to you when you're sick and you're running into a hospital.

[B]

Yeah.

[A]

Did you think that about healthcare before your daughter had diabetes, or was it not a way you thought about it?

[B]

No, I. I know that our systems are flawed 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 and these unnecessary facts that they're told and like, where are your kids? A1C should be and oh, they'll be fine. No, they won't be fine. With an A1C of 7 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 A1C is higher. It doesn't make sense to me. I don't get it. I just want her to live a normal life with normal numbers like we do.

[A]

When Arden was really young, that was one of the ridiculous things that was said to me that 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.

[B]

Yeah. She's a kid, it's fine.

[A]

I said, I don't understand what that has to do with anything.

[B]

Yeah. I can't tell you what I've learned from you.

[A]

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 that's just a thing you say, you know?

[B]

Yeah. Like why? Why is it okay if they're young and their A1C is high and they won't end up with kidney failure on dialysis, but when you're in your 20s and 30s, it's not okay?

[A]

Last Friday I interviewed a guy so 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 Eat series and now he's back 41 years old to talk about his quadruple bypass.

[B]

Oh my God.

[A]

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 A1C's 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. He's taking really great care of himself. And how does he explain it to me? He says he's a runner. He's a guy who finds himself to be very healthy. You know, he's a runner. And he said he 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.

[B]

Oh my gosh.

[A]

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 1C, 7 or 8, 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.

[B]

Yes.

[A]

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 6 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 going to have cottage cheese on the ground that I'm going to fall through. So thanks a lot. Great. Anyway, a 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.

[B]

So my daughter was diagnosed April 23rd of 2024.

[A]

Oh, wow.

[B]

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 M&Ms. 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.

[A]

Awesome.

[B]

That was super fun. So we had to change our whole diet. But anyways, she wants to eat cereal, and cereal's awful and spikes you 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 out 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 stay under 150 and go to school and be fine.

[A]

Wow, good for you.

[B]

And I tell everyone to join the podcast because those are the kinds of things that, like, you're not taught.

[A]

You know, nobody's going to say that to you. They're going to say things like, cereal makes your blood sugar high, huh?

[B]

Yeah. Don't eat cereal. Yeah, that's what they tell you.

[A]

Either don't eat cereal or your blood sugar is going to be high. But it's okay. She's sick.

[B]

It's fine. So let me tell you the other super fun and frustrating challenge that we dealt with. After this diagnosis, sending your child back to school. Okay, my kids go to public school. I obviously knew nothing about type 1 diabetes management in public schools. So we come home. 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. 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 intervene. It was wonderful. It was working beautifully. 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 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 1 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.

[A]

Who did?

[B]

We'll call her the boss. The 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 as I was in that moment. We 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 1 diabetes group that helped me and sent resources over and we fought until it's finally approved. And it took a year.

[A]

What was the reasoning? That they wouldn't do it.

[B]

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, I'm helping you.

[A]

I feel like this is the kind of answer that you get when stupidity is involved.

[B]

Yes.

[A]

Yeah.

[B]

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.

[A]

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.

[B]

That's what they told me. We've never let anyone die. I said, is that supposed to make me feel better?

[A]

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. You just can't see that she's not okay. Like, like you, 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.

[B]

But to them it's okay because they don't know, you know?

[A]

Yeah. What I told them was, is that their actions will lead to my daughter having significant health concerns 20 years from now.

[B]

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 with injections 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.

[A]

Yeah.

[B]

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 1.

[A]

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.

[B]

Yes.

[A]

Yeah, yeah. So now it's all very personal coming out as that. I bet you it did.

[B]

I tried to be respectful, and again, I didn't ever say I was a nurse until 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.

[A]

Yeah. I'm not asking.

[B]

You don't have to look at it. She said, well, you don't 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. I know 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 wrong.

[A]

It's the same point I make about. People see gyms all the time, that God, just stare at it. I said, I'm like, don't look at it till it beeps.

[B]

Right?

[A]

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. CGMs 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. And you're paying attention to stuff, you don't need to be paying attention to them. Blah, blah, blah, blah. 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.

[B]

Right.

[A]

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.

[B]

And isn't that awful, by the way?

[A]

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 that. 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 is this?

[B]

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 kid's fine. Are they though?

[A]

Yeah. You don't know that.

[B]

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 1 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.

[A]

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.

[B]

We're gonna give up.

[A]

We're gonna go. I would move to an island and just live there like I do. Like, it's okay.

[B]

I can't give up because of her. And she saw me fighting. Friends of ours saw us. And 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.

[A]

Now, there's a few hundred kids in New Jersey using 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. That, like, you know, we've been helping kids with type 1 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's 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 8 and a half a 1c their whole life, and then they're gonna have an actual problem, something they can't come back from. And 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 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.

[B]

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 called Tallahassee. Like, I don't. I'm not settling for just this county.

[A]

Yeah, well, that's good on you, actually. But, like, what's the other side of it? Like, did she not even agree with the things 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?

[B]

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 federal. They're, you know, you. You have to follow their glucose values. If the parent or guardian request, it's in writing.

[A]

Yeah.

[B]

So the schools technically can't fight it, but they were trying to, 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 these sugar values. But you're responsible anyway, actually.

[A]

Ignorance, stupidity, laziness. What's the biggest problem?

[B]

Ignorance, probably the.

[A]

They just don't know.

[B]

I. Yeah. And I don't necessarily think that it's bad that people don't know. You know what I mean? You. 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 really that simple.

[A]

Sounds like you're gonna have a hearing with your aunt.

[B]

Yeah.

[A]

Well, yeah, I mean, it is just. I mean, I. I'm just gonna say it's. It's very human, right? Like you, 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.

[B]

Maybe.

[A]

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, our kid just got diabetes. She might have a little more understanding of this, like, close up understanding of 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 reevaluate what's happening here.

[B]

Right?

[A]

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. 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.

[B]

Bad for the kids.

[A]

Yeah, I Tell you what, you probably had an easier time with the school than you're going to have with your family.

[B]

Yeah.

[A]

Because at least the school was like bound by some rules and laws. Your family just probably is like, she's always been a pain in the ass and that's going to be the end of it.

[B]

Yep. And I'm okay with that as long as I'm doing what Harper needs. You know what I mean? Not good for you because 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 A1C was 6.0, so we got a little room still to make adjustments.

[A]

Well, it sounds like you're doing great.

[B]

But 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 nother.

[A]

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?

[B]

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.

[A]

Okay.

[B]

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.

[A]

Yeah. Do you ever ask her why she answers that way? Try to dig in a little.

[B]

Like the shot. I don't like the shots, mom.

[A]

Yeah, well, it's funny. So you as an outsider see the celiac is more trouble, but she sees the diabetes is more trouble.

[B]

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 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.

[A]

Yeah, I see your point. It really upsets her that much to be in that situation. The cupcake situation, for example.

[B]

Yes. Yeah. It breaks her heart because she's little. You know, when she's older, I don't think it's gonna matter.

[A]

Right.

[B]

And she's eating healthier than, you know, any of us did, that's for sure, because she can't have all the crap.

[A]

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.

[B]

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, have you looked.

[A]

Through extended family for other autoimmune stuff and found anything?

[B]

Yes. 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, Morse thyroid, like Hashimoto's. 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. You know what I mean? I still don't know if knowing that someone on your side of the family has Hashimoto's 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 different.

[A]

Right. And if somebody came up to you and said, hey, you know that boy you like, who you're thinking of marrying? He's got autoimmune on his side of the family, you'd be like, ah, 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, 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, oh, okay. I'm like, I hear you. Yeah. I'm like, that's fine. Yeah, I, 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.

[B]

Right.

[A]

I'm not a doctor or anything like that. I didn't go to medical school. I, 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.

[B]

Right, of course.

[A]

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.

[B]

I like it.

[A]

Thank you. I really proud of myself, by the way.

[B]

I like it. And I'm sure the school board and who knows who else has some lovely choice words about me.

[A]

Oh, yeah. Though they probably. I'd love to be in a room where they're probably like, this lady is a getting bitch. Yeah.

[B]

Yeah. And I can be. But, like, if you would just do what's right for these poor kids, it wouldn't be an issue.

[A]

Yeah. But, you 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 it.

[B]

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, that's what I wanted.

[A]

I hope it. It lives on in a legacy, because I do wonder now that Arden's been going out of school for a while, if it, you know, it doesn't get forgotten. You know, one or two school nurse changes or, you know, the person in charge of. Of, you know, that kind of stuff, change his hands once or twice and you're right back where you started again.

[B]

Yeah, it would be terrible. And not surprise me in the least.

[A]

No, no, no, of course not. What, are you gonna write it down?

[B]

Oh, my goodness.

[A]

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 Ardent 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 at. 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. Ha ha ha. 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 and I took it, 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 going to 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 old's 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 the guy and he goes, what's the problem? I said, I defy you not to kill her with this 504 plane. 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. You're 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 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.

[B]

Yeah.

[A]

And that worked really well until the one day they didn't call me.

[B]

Oh my gosh.

[A]

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 out on recess. And then she would come back in after recess and they. I forget, they check her blood sugar again and I. Is a 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 Arden, have her come down and Test her blood sugar before she goes out on recess.

[B]

So they forgot about her.

[A]

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 says, hey, it's the nurse's office. And 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 to the other kid. And we missed Arden 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. Let's test her 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 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 somebody, just somebody, an aide whose job it is to remember that it's 10:15 because the nurses can't. They just proved that to you. And they shouldn't have to, by the way, right? And he's like, I can't afford an aid. 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 a name.

[B]

Oh, my gosh.

[A]

That. That man was later tragically killed in a. In a car accident. And I feel terrible, like, all the time that he and I never. We always had a contentious relationship.

[B]

Because you threatened him so many times.

[A]

Well, just that one time. But he didn't let go of it. He. 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 take our he here, because this guy's going to make a problem. To your point, it's a big, 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 Arden never had a problem like that at school ever again. 12 years, she was fine.

[B]

Well. And we don't want to come in like that. You know what I mean? We would prefer to just come in and, like, let's get this stuff in order and take care of my kid and call it a day. But that's.

[A]

Actually, I was the bright, shiny, smiling guy coming in six months early. Like, hey, listen, I don't even 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 an. Other things. Make me an Ashley. Not that.

[B]

Oh, yeah. I have a list of things. A list that make me.

[A]

Yeah. No, no, no. Trust 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.

[B]

But it worked.

[A]

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? I'm sorry.

[B]

Sorry. We were taking care of the other kid.

[A]

Yeah, I'll put my five year old in a wheelchair for the rest of her life. And I'm sure your 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.

[B]

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, do 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 onto a bad website or something, you know.

[A]

Oh, is that where your mind went? I went right to cheating husband, but go ahead.

[B]

No, no, her son, our little buddy that's here with my son all the time is over in the hospital, diagnosed with type one.

[A]

Oh, my God, your kid's patient zero. She's giving it out to other kids.

[B]

I know. I'm like, it's contagion.

[A]

Oh, my gosh, that's terrible.

[B]

He got it here at our house.

[A]

How old?

[B]

He's 11.

[A]

Oh, that's terrible.

[B]

Yeah. 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 give her the. The spiel and I just shook my head and we left. And Harper said, mommy, that was not right.

[A]

Now we have a six year old who knows more than the diabetes educator in the hospital.

[B]

Yep. So they're covering him with sliding scale, but no, no food coverage.

[A]

Is it like, like a lotta situation or like a strong honeymoon going on?

[B]

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 them.

[A]

Yeah. I went through. 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 the. At the hospital they said this, so. Yeah. Oh, my gosh. If they're asking for help, you're going to be like a, like a support system for them in the beginning here.

[B]

Oh, of course. Yeah. Anything that she needs, I've 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 endo 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.

[A]

That's very nice of you. That's awesome. And she'll be like, she doesn't know yet, but she'll be lucky that. 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 that's like, swirling around is. It makes it hard to. That's why the way the hospital does it is so hilarious to begin with where they're just like, they just blurred everything out at you and then you just, you walk out and you don't remember a damn thing.

[B]

Yeah, it's like a three hour class they made her sit through.

[A]

Yeah.

[B]

I'm like, she. She doesn't know what you said in the first sentence.

[A]

Yeah, she has no idea. Like, I. I've been very open and told people before that while the nurse was in Arden's room, maybe the day after she got. I don't know, 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 crying. Yeah. Because not that I couldn't figure out the math, but in the moment, I couldn't.

[B]

No, you can't.

[A]

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 of 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, it's 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.

[B]

Like, I could, I could do much.

[A]

I couldn't put it all together. Yeah.

[B]

And somehow here we are and they're alive.

[A]

Yeah. It all works out 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.

[B]

We don't want any of those.

[A]

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 was, I. 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 them, 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 going to get. You think if everybody just tried harder, this would get better. But that's not what this is about. It's just too complicated for the person that you intersect is not going to have all the information you. They're 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. I mean, honestly, it'd be like if I put you in your car and, like, you had you drive it into a wall, then you jumped out, and you're like, you weren't dead. You're like, oh, dazed. He'd 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.

[B]

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.

[A]

That's so funny you said that.

[B]

And you're like, that's it.

[A]

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 can be high or low. That's the next thing I thought is, like, everything I'm looking for is there in both scenarios.

[B]

Yeah, yeah, 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?

[A]

Just call. Yeah, well, if you think something's wrong, call the nurse, because.

[B]

Please, yeah, please, just send her to the nurse or call me, for the love of God. Just call me.

[A]

Then the nurse will show up and tell you about all the rules that she has to follow and why she can't help.

[B]

Let me go look at the black and white paper and see if any of these match.

[A]

It is frustrating that. That so many of the things on the one list are on the other list.

[B]

Yes. It makes no sense to people who don't know what they're looking at.

[A]

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.

[B]

So, you know, I don't want anymore.

[A]

I'm tired all the time. Well, it could be this or this or this or this or this. Like, awesome.

[B]

But, like, can we be capped out at 2 is diabetes and celiac is something.

[A]

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 for. I hope so for Harper, actually. You were awesome. This was terrific. Did I not ask you anything? I should have.

[B]

It was a pleasure.

[A]

Cool. I thought so. Dude. This is a good 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. Or I'm just going to 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. It'll help other people get out their. Their frustrations.

[B]

That wasn't my intent to complain.

[A]

No, no.

[B]

This is issues.

[A]

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.

[B]

Yes.

[A]

Yeah, she could have got dk, 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 kid's 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.

[B]

Okay.

[A]

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 type1.org where you're going to learn all about their programs and resources for people with type 1 diabetes. This episode of the Juice Box Podcast is sponsored by the Omnipod 5. And at my link omnipod.com/juicebox you can get yourself a free what I just say? A free Omnipod 5 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@ omnipod.com juicebox links in the show notes links@juicebox podcast.com Are you tired of getting a rash from your CGM adhesive? Give the Eversense 365 a try. Eversensecgm.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 Juice Box 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 1 diabetes, the after Dark collection from the Juice Box 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 juiceboxpodcast.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 1 diabetes, check out the Juice Box Podcast. Private Facebook group juicebox podcast type 1 diabetes but everybody is welcome. Type 1 type 2 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 1 diabetes on Facebook. The episode you just heard was professionally edited by Wrong Way Recording wrongwayrecording. Com.