Juicebox Podcast: Type 1 Diabetes

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

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.

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.

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.”

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

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.

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.

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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