#1796 School Ties
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A deeply personal conversation about living with type 1, invisible burden, and the quiet strength it takes to keep going when no one else fully understands.
Key Takeaways
- Advocate Relentlessly but Respectfully: Assume positive intentions when working with school staff, but don't hesitate to push for necessary accommodations like a 504 plan to ensure legal protection and consistent care.
- Prioritize Mental Health: Diagnosis is a "marathon, not a sprint." Utilizing therapy and medication (like Zoloft) can help transition from a "fight or flight" crisis mode to a more sustainable management routine.
- Empower the Child: Balancing the burden of management is key; allowing a child to have discreet treatments (like Starbursts in class) helps them feel "normal" and builds their confidence in managing their own condition.
- Education is Evolving: Standard hospital education often focuses on "survival" rather than day-to-day optimization. Seeking out community resources and veteran advice (like pre-bolusing) is crucial for better outcomes.
- Adaptability and Community: Connecting with others in the Type 1 community—whether through podcasts, support groups, or school staff who also have T1D—provides invaluable perspective and support.
Resources Mentioned
- Tandem Mobi System: tandemdiabetes.com/juicebox
- US Med: usmed.com/juicebox (888-721-1514)
- Eversense 365 CGM: eversensecgm.com/juicebox
- Omnipod 5: Mentioned as Courtney's daughter's current pump system.
- Dexcom G7: Mentioned as the CGM used in conjunction with Omnipod 5.
- Juicebox Podcast Website: juiceboxpodcast.com
- Diabetes Network of Arizona: Mentioned for family support and 504 plan assistance.
- Wrong Way Recording: wrongwayrecording.com (Podcast Editing)
Introduction and Diagnosis
Scott Benner Here we are back together again, friends, for another episode of the Juice Box podcast.
Courtney My name is Courtney. My daughter was diagnosed with type one as a five year old two years ago.
Scott Benner 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. Wanna 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.
Scott Benner This podcast is full of collections and series of information that will help you to live better with insulin. If you're looking for community around type one diabetes, check out the Juice Box podcast private Facebook group. Juice Box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook.
Scott Benner 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. Today's episode is sponsored by the Tandem Mobi system with Control IQ Plus technology. If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm.
Scott Benner Use my link to support the podcast, tandemdiabetes.com/juicebox. Check it out. Today's episode is also sponsored by US Med. Usmed.com/juicebox or call (888) 721-1514. US Med is where my daughter gets her diabetes supplies from, and you could too. Use the link or number to get your free benefit check and get started today with US Med. The podcast is also sponsored today by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox.
Courtney My name is Courtney. I am a school administrator and elementary school principal, and I've been in education for twenty years. And my daughter was diagnosed with type one as a five year old two years ago.
Scott Benner She's seven now.
Courtney She's seven now.
Scott Benner Yeah. You have other children besides that one or no?
Courtney I do. I have a younger son who is he's five now.
Scott Benner Seven and five. He was three when she was diagnosed. Were you gonna have more kids and then you stopped? No.
Scott Benner No. Two two is good?
Courtney Two is good. Girl, boy, and you're like, look what you did. We're done.
Courtney Exactly. My husband wanted a third and I said, I'm good with that as long as you carry this third one.
Scott Benner I hope your new wife and you will be very happy. Exactly. Because I'm not doing this again. Thank you. Yeah.
Scott Benner That makes sense.
Courtney Yep. In the family, you, your husband, extended family, other autoimmune issues? No. Nothing. Nothing. Celiac?
Courtney Knock on wood. Not nothing right now.
Scott Benner Somebody has eczema.
Courtney Eczema. Yes. Eczema.
Scott Benner Yes. What about a vitiligo, a changing of the color of the skin? Nope. No. Mm-mm. Thyroid?
Courtney Nope.
Scott Benner Get out of here. Not one not one low energy person in your family?
Courtney No. Really? No.
Scott Benner I believe you. Okay. Who's got the eczema?
Courtney My son.
Scott Benner Your son does. Okay. Yeah. Let's see. You so you don't have any knowledge of diabetes. It's not like you're looking around corners for it. What happens to your daughter that first piques your interest?
Courtney Well, it was interesting because I was at my twenty year college reunion, and one of my closest friends from college, her son had just been diagnosed about a year prior. And she was talking to me about the symptoms and his diagnosis. And I thought to myself, you know, it's funny. Maggie, my daughter, has some of those symptoms. Like, she's going to the bathroom a lot. She's drinking a lot of water. You know, all the classic symptoms. And she's like, it's probably not type one, Courtney. It's probably something else. But, like, if you're worried, like, make an appointment with your pediatrician.
Courtney So I went went back home, waited a few more weeks. And, again, easy to as I'm sure many of us do, like, you know Yeah. Excuse away the symptoms. I was like, I'm just gonna take her in. And sure enough, they she had glucose in her urine, and her blood sugar was three fifty.
Courtney I love my pediatrician, and she said, you have to go to the emergency room right now. I'm like, no. I don't. She's fine. She just had you know, she just was at school. So she wasn't in DKA, which was good. Thank you to my college roommate.
Scott Benner Did you go to the ER?
Courtney Yeah. Mhmm.
Scott Benner Isn't that funny? Your first like, somebody said, you have go to emergency room. You're like, no. No. No. Silly.
Courtney I don't.
Scott Benner No. You don't know what you're talking about. Did you even go to school? I've never checked.
Courtney Exactly. Yep. And then drove to the, children's hospital in our city, and she was admitted for several days, and it all started.
Scott Benner Wow. How how bizarre is that? You're talking to a person you probably hadn't seen in forever. And they're like, oh my god. You. And you're like, you. I remember that time we got drunk at the thing, and you're like, yeah. Yeah. Exactly.
Scott Benner What's going on with you? And she's like, oh, my kid got diabetes. And she's like, oh, bummer. And then said she starts rattling off her life, and you're like, this poor lady looks exhausted. Also, she's describing my daughter to me.
Scott Benner Uh-oh. Oh, wow. Yep. Wow. That's really something. Did you, a year later, look like she looked at the—
Courtney Yes. Absolutely. She just got together with her last weekend. I was meant to go to that reunion and hear that information. And and, you know, the funny thing is working in schools, we have kids with type one at my school, obviously, that I work at. And I still had no flipping idea.
Managing Anxiety and Mental Health
Scott Benner Yeah. That's the You know? Does it stick with you or are you okay with it? That you What's that? That it just didn't pop the front of mind as soon as you saw it.
Courtney No. Because even even working in schools and teaching kids who had type one, I didn't know, obviously, the depths of it and the extent of it and what it all entailed. I just sort of remember thinking, yeah, they have to take insulin. You know, no big deal.
Scott Benner You're not an anxious person?
Courtney I'm a very anxious person. Yes. Oh, it's like it's just the way you said it. That was you were like, oh, no, Scott. You've misread that completely. I'm a disaster. I am a disaster. Yes.
Courtney Well No. But I just you know, you don't until I I I think it's interesting now when I see, you know, kids with, you know, different types of medical conditions, how much you don't really know until you're experiencing it. We have a student that, you know, she has spina bifida. Then, again, that that's a, you know, pretty complex medical condition that she has has to navigate her entire life, and you just never really know until your your kid is the one that is going through it.
Scott Benner No. Of course. Wait. Tell me more about your anxiety. How long has this been around?
Courtney My entire life. Since I was three, Scott. Since yeah. Yep. I remember. But, you know, after Maggie's diagnosis, it was obviously yeah. I shouldn't say obviously, but the worst it ever was. I did the things. Went to therapy, got on medication. I actually found a therapist who her son is type one. So Okay. That was really helpful.
Scott Benner I was gonna say that's probably incredibly helpful. Well, I did the thing. So there's a checklist. I followed it. Do you still do, talk therapy?
Courtney Occasionally. I do. When things feel hard to handle? Yeah. I know the indicators for myself. And, you know, when things when things start to feel really overwhelming, I know, okay. Time for time for a tune up.
Scott Benner What about the medication? Did you keep doing it or did you use it for a while and then stop?
Courtney No. I keep I'm still on it. Yep.
Scott Benner Okay. And what what does it do for you?
Courtney It's funny because I think I can just sort of, like, operate as a normal human being as opposed to somebody who is in this, like, you know, fight or flight crisis mode all the time. So I was just talking with my provider, and she was like, you probably feel like you can go off of it because it sounds like you're doing pretty well. I'm like, I do. And she was like, yeah. You shouldn't.
Scott Benner She's like, no. You should stay healthy. To know you, Courtney, and let me just tell you something. The meds are the only thing holding this together. And those meds are—using bath salts? What are you using exactly?
Courtney No. Not bath salts. Just Zoloft.
Scott Benner Oh, okay. Yeah. And the first one you tried, and it worked out well for you?
Courtney It did. Yeah. Does your husband or other people in your life mention it to you? Meaning, is the shift noticeable to others or just something that's more internal for you?
Courtney I think it's noticeable to others, especially, you know, after diagnosis when our world was rocked. You know, I couldn't sleep. I couldn't eat. I lost 30 pounds. I, you know, just was constantly worried, anxious. So that's—and now I can—I can sleep. I can eat. I can go to work. All those things, you know.
Scott Benner Did someone help you back then? Did you know yourself? Like, how did you know you needed help? Did you overhear your husband telling the kids, don't worry, new mommy will be better than this? Or like, what what happened exactly that kinda made you think like, okay, I have to do something.
Courtney Yeah. The people in my life. My husband, my parents, my siblings, some of my good friends. Courtney's, like, people who I bumped into at the grocery store. Everybody's got Exactly.
Scott Benner I went to get my license renewed, and the lady's yelling at me, you need help. And I'm like, wait. What? Exactly. But the 30 pound weight loss, were you, like, not eating, or what was happening?
Courtney I wasn't eating, and, you know, I just suddenly kinda developed a strange relationship with food. And at the beginning, we were pretty restrictive with my daughter, which I regret now. You know, we just did all low carb. Yeah. I would feel guilty about eating things that were, you know, had carbs and sugar.
Scott Benner Oh, you weren't feeding it to her, so you stopped eating everything too. Were you mad at your husband because he kept eating? Because I know he did.
Courtney Yeah. He was like, listen. That's your journey. I'm over here with my tortilla chips. How did the dominoes fall that make you go low carb with the the child right away?
Courtney I think insulin was scary for a long time, and it was just easier to manage when she was eating low carb. And, you know, I'm a straight a student. I I remember thinking, like, I can I can figure this out? And I couldn't until I listened to Juicebox podcast.
Learning Through the Podcast and Low Carb Phase
Scott Benner Oh, I didn't know that was gonna happen, Courtney.
Courtney Seriously, though. It was—I I remember thinking, okay. Podcast. Someone had sent it to me. I was like, this is good. What it what will it be? Like, ten, fifteen episodes? I'll listen to it. I'll learn everything I need to know, and we'll be golden.
Scott Benner Yeah. Doesn't work like—So when you're like, there's probably, like, three things I have to know. I'll write them down while he's talking. Exactly. So you're saying she's having outcomes, not commiserate with your desires. Things are not going well at all. You try to, like, pull a little bit of information together. It doesn't get any better. And you're like, you know what? Instead, what if we just never had a carb again? Let's try that. Totally. Okay. Yep. And that was, I imagine, probably worked pretty well. Right?
Courtney It wasn't bad. Except that, you know, my poor five year old couldn't have cupcakes when it was someone's birthday or, you know, she wanted something and I said no a lot.
Scott Benner I said no. She's like, mommy, are we married? No. No. So take the, like, kinda like ham fisted cupcake example away. Like, day to day, what was it impacting? Or was it not? Was it just like you got to a birthday party, you're like, god, jeez, we're low carb.
Courtney I don't know. I think it was more about, for me, like, her mental health and her mental well-being and and wanting to be like, you know, "every other kid." Mhmm. Then I tried to relinquish some control and and learn more and say, okay. You're gonna, you know, eat what every kid wants to eat and within limits, of course. She's not having ice cream for breakfast.
Scott Benner But On top of a cinnamon bun? Wash down with a milkshake. That one—that's not—you're just you're just saying, like, common day to day items, like—what happened? She was eating low carb and she—do you think she felt, like, marginalized in that situation or was it your guilt or—diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. US Med has done that for us. When it's time for Arden's supplies to be refreshed, we get an email. Rolls up and in your inbox says, hi, Arden. This is your friendly reorder email from US Med. You open up the email. It's a big button that says click here to reorder, and you're done. Finally, somebody taking away your responsibility instead of adding one. US Med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple. Usmed.com/juicebox or call (888) 721-1514. I never have to wonder if Arden has enough supplies. I click on one link. I open up a box. I put the stuff in the drawer, and we're done. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs like the Libre three and the Dexcom g seven. They accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call (888) 721-1514 or go to my link, usmed.com/juicebox.
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Relinquishing Control and School Management
Courtney I think a little bit of both. Maggie is—I mean, she's a great kid, but she's not "but." And she's very aware of—
Scott Benner Scott, she's a great kid, but she's a little bit of an asshole, I gotta tell you. Like—alright. It's just so funny where you paused. She's a great kid. I'm sorry.
Courtney She is, but what's really important to her is also, like, what other people think and, you know, wanting to be as, quote, normal as possible. She didn't wanna, you know, have to say no to the cupcake.
Scott Benner Did you struggle with that? Like because I I can kinda see myself being of two minds there. Like, if we started off, you know, with the carbs and it wasn't working and we're like, well, let's try lower carb and lower carb worked. And then you start feeling like, well, I you know, I'm not like everybody else. Is there—was there a part of you, like, from a parenting perspective that wanted to say to her, hey, it's not our job to be like everybody else. It's okay? Because that that's a weird position to be in as a parent all of a sudden. Totally.
Courtney Yeah. I I think it was such a contrast and such a, obviously, curveball for all of us, but for Maggie most especially that—and it was it was my own, like, control, you know, issues that I needed to sort of just, like, let go and learn. And, okay, there's gonna be highs and there's gonna be lows, and we can manage those. Maggie gets to be Maggie. What do you call a high blood sugar? Where's the number when you start going, oh, jeez, I didn't do something right.
Courtney I'm not a diabetes ninja. Not yet. And it's one of the things that I would I want parents—I would want parents to know about schools. Like, for me, I'm willing to relinquish a little bit more control when she's at school. I'm not worried about a blood sugar of one fifty or one eighty when she's at school. I'm gonna let that ride out. The pump's gonna take care of it, and she's, you know, just gonna be, you know, high for a little bit. That's okay. She'll come back down.
Scott Benner What system is she on?
Courtney Omnipod and g seven. Omnipod five? Yep. Okay. If she's at school with a one fifty blood sugar, you wouldn't send a text to somebody that said, hey, why are we bolusing here? Nope. No. You'd say, I I think the algorithm's gonna bring this down at some point. Totally.
Scott Benner Is there a number where you call the nurse and go, okay, we're upside down. Let's do something.
Courtney Yes. I think if she's above two fifty, which I know seems high, we're—I still feel like at the beginning of this diagnosis even though it's been two years. But for the most part, she's pretty well controlled when she's at school. And if anything, I'm I'm calling to have her eat a Starburst because she's, you know, in the seventies, which I don't really care for when she's at school because she can drop pretty fast depending on if it's, you know, PE, recess, whatever. Right. So most of my calls are on the low end as opposed to the high.
Scott Benner So you're you're adding context, but she's not walking around $1.80 all day most days. No. I gotcha. I just wanted to understand the the you know, what you're using to calibrate yourself with. And so you were able—to you weren't able to. Zoloft was able to give away that anxiety.
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Courtney I I think some of it was Zoloft. I think some of it was—it's just time. Right? This just becomes part of—you know, I remember listening to one of your podcasts, and somebody was saying something like human beings just adapt. Right? And this is just—we've just adapted. This is just part of our life. And do we wish we didn't have to deal with it? Sure. But I don't—can't—I can't waste time or energy on that anymore. Just gotta keep moving forward.
Evolving Roles and School Advocacy
Scott Benner I think you're going to find because you're—you know, she's diagnosed young and you're a young family still. Right? And how old are you?
Courtney I'm 45. Not that young. Okay. But like—well, you can say it, Scott, but it's not true. Did you start a little late on purpose?
Courtney I did. I got married at 35. And then I had—got pregnant at 36 and 38. Long line of losers behind you? Or—Yeah. That's right.
Scott Benner Oh, jeez. I kept trying to find one, Scott. They're not as plentiful as you think. The one I settled on isn't actually great. It's just—it is great. No, I'm kidding. I'm sure he's fantastic. Well, I I guess what I was—what I wanted to say was that this is gonna morph and change so many times. You won't even recognize this part of it six months from now. Let alone six years from now. If Arden was seven and she was at school, and, of course, this would have been before algorithms and stuff like that, I would have absolutely bolused the one fifty. I probably would have bolused to, like, one thirty, to be perfectly honest. Because I was acting as the decision maker already. Now and then moving forward, you know, after kinda learning how the system she was using, the different systems she's used over the time have worked—there's times when you're like, well, there's no reason to interject here. It's gonna take care of it. There's times when you see and you go, I don't think this is gonna work out ever or or it's gonna take too long. But then, you know, morphing forward, forward, forward, forward till she is, you know, who she is today. The reasons you don't bother somebody to bolus a one fifty when they're 21 are different than the reasons you don't do it when they're seven. You really do have to keep rolling with it and making new decisions. And then at some point, like, the give-it-away part of it—I know how I hope Arden ends up being as an adult taking care of herself, but I also feel like I've talked to countless people and I realized that that's not—it's not reasonable to expect everybody to do something based on, like, directions or a check sheet or something like that. People are just who they are.
Courtney Yep. Well, the other jackpot that we hit was our school nurse is type one. Maggie's school nurse is type one. Oh, wow. Okay. And how do you find that to be valuable?
Courtney First and foremost, just the education and knowledge. I continue to be struck by, you know, how many people don't know the ins and outs. Not that they should, but, or the that it can be critical and scary. And that you have to intervene, you know, immediately. It can turn into a medical emergency. So I think that was helpful. I also think just from my daughter seeing her every day and seeing her sensor and that that it's just part of—you know, she's a great successful adult and school nurse. They have their own little community there of support. Which is—it's just so great. That's excellent. Did you—do you work in the same district your kid goes to school in?
Courtney I don't. No. So you didn't, like, hire the type one nurse on purpose? No. Scott, it was a little bit of abuse of power, but—Exactly. I would've if I could've. But it's very nice. Let's see. How is—I do—Go ahead. Your thoughts?
Courtney I was just gonna say, I I have to be pretty aware of my role at school when it comes to type one kids at my own school because I want to overstep, I think, at times when that's not really my role. I had a student whose blood sugar was low, and we had a substitute who was having him eat Jell-O. And I said, oh, how many carbs are in the Jell-O? And she was like, I don't know. And I said, zero. He needs juice. He's in the fifties. And, again, I was glad I was there to support, but and then I, you know, the community that I serve is a lower socioeconomic than the community that I live. And so there's really a lack of resources sometimes that hurts my heart as a mom and an educator. I just think there's more we could do in terms of advocacy and education.
Scott Benner The Jell-O is interesting. You step in—do you step in and say, oh, I have—or do they know you have a a child with type one, or did you just, like, be like, hey, I have some background on this, and that's not gonna work?
Courtney Yeah. My my staff and students know that I have a child with type one. This was a substitute, so I don't think she knew. Where'd she get the Jell-O?
Courtney I don't know. Funny. I know. I'm low. Would you like my lime Jell-O? Exactly. Why do you have lime? Ugh. Everyone knows orange is better, but that's that's neither here nor there. You know, Jell-O is Jell-O ground up horse hooves? Disgusting. Yeah, it is disgusting, but Jell-O is great.
Scott Benner Why'd you wanna come on the podcast? Also, don't forget to mention that I'm famous like you did before we started recording.
Courtney Scott, seriously. I am still nervous talking to you because you are a celebrity in my house and in my community. And my type one mom friends were so excited for me to be talking to you today.
Scott Benner Seriously? That's lovely. I watched my wife run away from me in the kitchen yesterday. I was like, hey, can I tell you something? She's like, not now. And she just—If that ain't marriage in a nutshell, I swear to you, we were in the car the other day. She brought something up. It was like a social thing. It was a pretty deep point about something she brought up. We're chatting about it, not for long, and I had, like, a—I wanted to add to it. And I—it's—I literally don't remember what it was. It's not important. And I added to it, and there's this long pause, and she didn't say anything. And I turned and I looked at her, I was like, are you gonna respond? And she goes, I'm just listening. I have nothing to say about this. I'm like, you brought this up. You started this conversation, and I'm trying to keep it going. And you just went mute in the middle of it. She's like, yeah, I'm not interested. Okay. So just tell Arden—and Arden goes, I do that sometimes. Sounds like I just get bored in the middle. Anyway—yeah. That's just so lovely. How long have you—I'm sorry, you told me, but you've been married since how long?
Courtney I've been married for ten years. Are you and your husband splitting duties on the on the diabetes stuff, or does he have a thing he does? How do you manage the workload?
Courtney Yeah. It's—I think, you know, been probably one of the biggest challenges in our marriage because when Maggie was first diagnosed, I took it all on. I'm still probably the point of contact. I wouldn't let him do a lot to start, which was, again, just my own issues with control. But then it it got to the point where, you know, I couldn't leave. I mean, literally, I was with my daughter twenty four hours a day, seven days a week. Couldn't go anywhere. Couldn't do anything. Couldn't trust anyone else.
Scott Benner You were spiraling, you would say?
Courtney I was. And my husband is a wonderful, capable, intelligent man. And it was—it became very important for me that we, you know, both were doing things and, you know, and then I just started resenting him for it even though it was me who was preventing him from doing it.
Scott Benner "Don't touch this kid. I cannot believe you are not helping me with this kid." Exactly. That was exactly it. I wanna just say this right now. Kelly told me I was cooking sausage incorrectly last night. Hilarious. It was like—what's happening? And so she said—I wish I would've—I've been married almost thirty years, and I still didn't know to be quiet on this next little bit. She goes, "what's this all over the sausage?" And I went, "are you referring to the pepper?" And she goes, "yes." "Why did you"—what did she say? "Why did you, like, flavor the sausage? The sauce is going to do that." And I said, "well, I'm just doing it the same exact way I've done it for the last thirty years." And I kinda let it go. But I was just—I was standing there with the sausage, and she's doing something else. And we're cooking together. Right? In Cosmopolitan magazine, they tell you that's sexy, but trust me, it's not. They're lying to you about that. And I couldn't let it go and I just I waited, like, three solid minutes through, like, some real silence—because I mean, I was clearly not looking for her input on the sausage making. And I just said, "I gotta tell you, you're a special person." And she says, "how's that?" And already in her voice, she's like, "go ahead. Say the shitty thing you're gonna say." Exactly. "How could you describe pepper as 'what's this all over the sausage?'" Marriage. It was revealed twenty four hours later that she might be having her period. But I don't think that has anything to do with it, Courtney, because her period does not change how she reacts to things. Okay? She is the same person no matter what. And I will use her words, her menstrual flow, and and the hormones that come with it, they only change her inability to deal with me being stupid. Yeah. And so in a normal situation, she would have shut up about how I just spread whatever that is all over the sausage. But on that day, it needed to be described as "what is that all over the sausage?" It has to be said. I swear to God when she said that, I thought, what is she talking about? What is all over the sausage? And then I finally went, "are you talking about the pepper?" "What else is on this?" she said. And I went, "onion, garlic, pepper, the same goddamn thing I put on it my whole life." She goes, "ugh."
Courtney You—she should've done better. Goddamn. I know—was wrong with me. I'm just a horrible person. I was the only man in America cooking during that football game last night, by the way. You're welcome. So, anyway, so you ostracized your husband, and then ostracized him again for allowing himself to be ostracized. Absolutely. Since that's been cleared up, what's the deviation of work? How does it work now?
Courtney It's pretty much fifty fifty. I tend to be the point person for school just because schools are where I feel comfortable. But I just went away last weekend, and I know that he does a great job and is on top of things. And Maggie knows that too now, and I don't think she did at the beginning. She would always only come to me, and some of that was, you know, a mom—Premeditated? Yeah. "Don't go to him. He's horrible." Exactly. but I think she needs to know that there's lots of people and that dad can take care of her just as well as mom can. I agree. We're in—You made your way through it. And you went away, didn't think about it the whole time you were gone, kind of it was kinda free and easy for you?
Courtney It was actually. It was pretty easy. You're selling Zoloft today like water in the desert. There's a lot of ladies right now going, "how do—was that a z? Z o what?" Exactly. Don't think you can ever totally turn it off, but, you know, I glanced at her blood sugar, and I think maybe I texted him once or twice to be like, "did you give her something? She's on the low."
Scott Benner Pretty awesome. Are you from the Midwest originally?
Courtney I'm not. I was born in Boston, and then I grew up in Jersey for most of my life. And now I'm out in Arizona. Your accent's like a really interesting blend. I can't figure out what it is while it's happening. It's nice. It's part of what made me when I incorrectly said a half an hour ago, "so you don't have any anxiety." You sound calm while you're speaking. Is that the school thing?
Courtney I think so. It's just yes. Years of practice. I have a tone, Scott, that stops people from throwing things in my office. Exactly. I learned it in college. That was most of my last year. because you really do make me feel at ease. Your voice makes me feel at ease. Oh, that's such a nice compliment. And you come off so, like, somewhere between Minnesota and Wisconsin/Chicago when you're talking, but you're not at all. Funny, no.
Public School Realities and 504 Plans
Scott Benner Did the whole group of ladies that love me pick straws as to who got to come on the podcast?
Courtney Well, it's funny because one of my good friends is also an educator, and she volunteers for Diabetes Network of Arizona. They do a lot of work with families who are newly diagnosed in terms of helping them get 504 plans set up and support with school. And she was saying as educators, we can kind of see both sides of things—the experience working at a school and then the experience of, "holy crap, now I have to send my five year old to school with this life threatening medical condition and trust that the staff there are gonna take care of her and keep her safe." So she was like, "you go on, Courtney. You're a principal. Go on."
Scott Benner Well, it is hard to know. Because I'm sure for all the good nurses out there who have type one, you probably have worked with people in the past where you're like, "I wouldn't leave my guinea pig with that person." Absolutely. And how are you supposed to know?
Courtney Exactly. And I think—what I do think is that ninety nine percent of school employees want to do the right thing. They're there because they love kids. They wanna make sure kids are cared for, that they're physically safe, emotionally safe. I think what gets in the way sometimes is just a lack of education and a lack of knowledge around type one. And so I feel like gross negligence aside, you can always, and you should, problem solve with the school. I mean, I had to do it for my daughter when she was first diagnosed. I requested a 504 meeting. I went in, and I said, "I want someone to follow her numbers." And they said, "well, we don't have an iPad." And I said, "you can get one." And they were like, "well, we—no. We don't have one." They're for sale. You can get them anywhere. Yeah. And then it was like, "if you don't have the power to get an iPad and follow her, who should I talk to? Is that your technology department? Is it the superintendent?" I think the best advice I could give any parent is, assume positive intentions of the school. They wanna do the right thing. And then you problem solve as a team or you advocate up. You go up the chain of command. No problem. Who should we talk to then? How can we make sure?
Scott Benner Yep. First person says, "iPad. I don't have an iPad." You see that person as the school instead of the person who is in a position that doesn't have an iPad and doesn't have a budget to buy an iPad. And so instead of saying, "look, I don't have one of those, and I don't know how to get it. We could talk to somebody else," they just go, "nope. I don't have an iPad." And it's that simple—those kind of simple answers then spark you on the other side to go, "ah, they don't wanna help me." Meanwhile, who's they? It's just this person in front of you who's limited by their options. Totally.
Courtney And listen—my kids go to public schools. I work in a public school. Public schools are understaffed, under resourced. And oftentimes, your school nurse, your health tech, they are—literally, my daughter's school has 1,100 students. If at any point, I was worried that she wasn't getting the care that she needed because the workload was too much for the health staff, I would advocate. And I know that I could go to the superintendent. Schools are really, for the most part, doing the best that they can. And I'm willing to work with schools all day long as long as we are assuming positive intentions, we're kind to each other, and we problem solve. And if we can't solve it, great. Who else should we talk to then? Who can help us?
Scott Benner What would pre-Zoloft Courtney tell me? Because that sounds like a very measured response when somebody tells you they can't help your kid. Because I'm trying to imagine a person who's more newly diagnosed, who doesn't work at a school, and all they can think is, "I gotta be able to see the numbers." And the people are watching you to see the numbers. So you guys gotta be able to see the numbers, then somebody goes, "we don't have an iPad." You go, "they don't understand." And then it kinda goes like that real quickly. So before—can you contextualize how you would have managed this before you were in your Zen place?
Courtney I mean, I can. And listen, I think it's not just type one diabetes. We as parents are—our kids are the most important thing to us. So it is, I think, natural to get fired up and to immediately wanna come in hot. My brother says, you never wanna go full nuclear right away. So you can, and I do, bitch and moan to my friends, my family, people that get it. And then when I'm interacting with school employees, my professional hat is on. And I try to be kind and respectful and acknowledge the place that they're in while continuing to relentlessly advocate for my child.
Scott Benner I hear you. I wish it was 1978 still. It was so easy. You'd be like, "hey, you gotta get an iPad." And they'd be like, "no, I don't." And you just smack them. And then there'd be an iPad and somebody would get arrested and everybody would be laughing about it for five minutes, then it'd be over. The world—everyone's you're like, "I have to think about where they're at." I agree with you, by the way.
Courtney But I'm saying I think both things can be true. I think you can be a pain in the rear end and relentlessly advocate and still be kind. I think all those things can exist. And in my current role, my professional life, I'll work with parents like that all day long. But the minute someone comes in and is yelling out the seams, it makes it difficult to wanna help them. Not that we don't, but having them on the other side of it, I feel like it makes it easier for me when I'm advocating for my own child or my own children.
Scott Benner When someone's yelling at you, do you ever wonder "maybe they're right? Maybe we are really missing the point here?" Because that's gotta be hard while you're being yelled at to be considerate of.
Courtney It is. We talk about—adults just like how we interact with kids. You can set a boundary and hold that boundary and be kind all at the same time. So I don't think there's ever been a time where I haven't tried to acknowledge, "I hear you, and I hear why you're upset and angry," and all of those things can be true. But again, when you've gone full nuclear and you're yelling at school staff, I think you've lost. I think you lost the battle.
Scott Benner Oh, I agree with you. I tell people all the time, your kid's gonna be at that school for a very long time. You get one chance not to be the crazy guy and once you're the crazy guy, you're the crazy guy forever. Forever. No one's giving that away. Once you pick up that monocle and put it on, they're gonna be like, "alright, here they come." The monocle of crazy. And it can happen easily. You start talking about diabetes to an uninitiated person. Just saying the things that are actually important makes you sound like you're out of your mind. Tough situation to be in. You need answers in the short term, but you can't wait six weeks till you guys figure out what to do. We have to do it now. Let me explain to you why—and then the person on the other side is like, "I think they're making half of this up. It sounds ridiculous. They're out of their minds." Tough situation.
Courtney It is. And if anything, many of my friends worry about being, quote, "that parent." I don't wanna be that parent, so I'm not gonna—Oh, you can call. You can email. You can request a meeting. You can have a conversation and problem solve together. That's actually what we're paid to do in our role as education professionals. So don't worry about being that parent. Be a pain in the neck, but you can do that in a way that's nice.
Scott Benner And I should have a 504 plan. Right?
Courtney You should have a 504 plan. Absa-freaking-lutely. And when the school tells me I don't need one, they are really just trying to get out of being legally bound to something? Not necessarily. I think there are schools that are like, "well, we're doing it already. We're doing all the things that you're asking for. So don't worry about it. It's not necessary." To which I would reply, absolutely, it's necessary. And I'm glad that you're doing all the things and the accommodations are in place for my child, but I need it documented in a 504. Absolutely. I need a leg to stand on if you should stop doing it. 504 is nonnegotiable. And it needs to be specific. Absolutely. And my other guidance for parents would be, decide what's your priority. Obviously physical safety is everybody's priority. But for Maggie, she hates being called out for diabetes.
Scott Benner Okay.
Courtney So we had to kind of figure out—and she's had some amazing teachers. Like what we do right now—I'll call the nurse. I'll say, "can you have Maggie eat a Starburst?" She'll say, "no problem." She calls into the classroom. And when the phone rings, Maggie looks at her teacher, and her teacher puts up a number one. And she knows that means go and eat a Starburst. She doesn't wanna be called out for it. She was like, "mom, we had a substitute the other day. The substitute was like, 'okay, Maggie has to go to the nurse before lunch.' And it was so embarrassing, mom." We're trying to prioritize—and take cues from Maggie what she's comfortable with. My priority as a parent was to keep her out of the nurse's office as much as possible. I don't want her in the nurse's office all day long, which I think schools tend to do because it's easier. But I was like, she can be treated in the classroom. She can eat a Starburst in her classroom when she's low. She doesn't need to go to the nurse if she's in the sixties and having a Starburst. She's fine. She's gonna stay in class, and she's gonna learn.
Empowering Maggie and Looking Forward
Scott Benner How long do you think before you take them out of that decision chain? Like right now, you're calling the nurse who's calling the teacher, who's telling the kid. At what point do you take out the nurse and the teacher?
Courtney I actually think it's probably pretty soon. I was just talking to Maggie this weekend and gonna get her a watch so that we can just start texting because she's there. She's seven. She's really bright, and she wants to take it on. That's the other piece—I wanna take on this burden for her as long as I can. I don't want her to have to worry about her blood sugar during the school day. I want her to worry about being a kid and passing her math test and playing with her friends. On the same hand, this will be her life. And so she should feel empowered that she knows what to do.
Scott Benner Yeah. You don't want her just sitting around like, "I feel low. I'm waiting for somebody to tell me what to do." Seven. She's embarrassed at seven about that? "I don't want people to talk to her."
Courtney She's pretty cool, Scott. She—I turned most of her alarms off because she would get so embarrassed. And then it's also just navigating how you respond when kids ask questions. "Why does Maggie have a phone? Why does Maggie have to go to the nurse?" And we're past that now. What does she tell the kids? I would say, "my parents love me." Well, she's said a lot of different things. Diagnosed in kindergarten, I was like, "you could just say, 'oh, I I need insulin for my body.'" And she was like, "mom, nobody knows what insulin means." She's like, "listen. I'm surrounded by a bunch of these little dumbasses. Trust me. They don't know nothing, mom. Okay?" But I gotta spend my life explaining insulin to these little idiots. Is she, like, kinda older than her age?
Courtney Yes, she is. She's wise. But we talk about it with kids like, "everybody has something." My dad has hearing aids because his ears need help hearing. The little girl who is in a wheelchair because her legs need support. The little boy who has alopecia. Our bodies all need different things. This is a five year old conversation we're having with five year olds, but kids are the best. They just accept it. You just have to tell them once, twice maybe, and then yeah. They're pretty good after that. And I also understand if she doesn't want everybody to be in her business too. So—I guess I'd like to understand a little better on the management side. You started off low carb. What was the a1c during low carb time?
Courtney I don't remember what it was at the beginning. We did it for a few months. Her a1c was 10-something when she was diagnosed. And it's not where—where I want her a1c right now is not where I want it to be. But I love our endocrinologist. She's like, "you're doing great. It'll get better. I'm not worried. You also have to prioritize your own mental health, your daughter's mental health, and this is a marathon, not a sprint." Do you know why she thinks it's going to get better?
Courtney I think the realities of eating and little kids—there's probably things we could be doing differently and better. But, you know, okay, bolus for pancakes, and then she decides she doesn't want pancakes. And then I'm like, "oh god." Just some of those things—the learning curve was so steep for us in understanding how all of the different things impact her blood sugar. You're still catching up, really. Yeah. Totally.
Scott Benner And so I'm assuming where the doctor imagines things are gonna get better is because as your understanding grows, you'll be able to implement those things easier. I think that's completely reasonable. You're educating yourself along the way and learning and you're having experiences that are probably making the next experience even easier. It takes time. It does take time. I remember being pretty upset couple months after diagnosis and calling a close friend. I was like, "I just can't do it. I can't get it right." And she was like, "oh, you haven't mastered diabetes in three months, Courtney? That's weird." I still feel like I should be further along. And—I love you, Scott, but I gotta—I take the Juice Box podcast in doses too. There's times where I'm like, "I need a diabetes break." I need to, like, not—not take a break from care, but from the social media stuff, the reading about it, learning about it. I just need to take a break. And then I feel better and throw myself back in it. But it can be a lot.
Scott Benner Yeah. Courtney's like, "listen. I don't know if you can hear it. I'm gonna cry." I'm in a unique position where all I can do is give it to you the way I see it. And then you're supposed to take from it what you want and what you have space for. And if you wanna come back and get a little more later, that's great. I think it would be wrong of me or anybody to come out and just say, like, "hey, here's some milk toast thing, and it's gonna leave your a1c in the eights, but you're doing great, don't worry about it." And then you might think that for the rest of your life. If you're not ready to do the things that lead to a six or a five—it doesn't even matter. At least you know what it is. And there are plenty of people who understand the concepts, don't have the headspace to implement all of them, but aren't overwhelmed by knowing there's more out there. Totally.
Scott Benner Maybe because you're an educator, you'll understand what I mean here. There's 20 people in a class—two kids are limited, five are average, five are a little above average, two are brilliant, one doesn't pay attention. I don't think we do anybody any good teaching to the lowest common denominator. I think you have to be aspirational when you teach. Agree. Absolutely. And I get—I'm not insulted by what you said at all. I completely understand looking at it and going, "I'm not ready for all this yet." When you're first diagnosed, you're drinking through a fire hose. Right? And you're still sort of mourning and dealing with the grief, but I am forever grateful to this podcast because I think I'd be lost without it. Well, tell me about that. If you're not really ready for all of it, but you're still really grateful for it, explain to me what it's doing at the moment for you, what you expect for it to do later.
Courtney Well, this is a silly example, but we're in the hospital and she's been diagnosed and they are saying, "okay, count up her carbs after she's eaten and give her a shot." And nobody told me that we should pre-bolus. Not a single person at our children's hospital told us that. I think there is so much—and it's not to be critical of the hospital because I think they're teaching you survival. They're not teaching you day to day management. They couldn't. You are so clearly a teacher because you're like, "listen. They're trying their best. I love my nurse." Now let me tell you something bad they do. You love them. Now tell me the bad part. Go ahead.
Courtney But that's my next undertaking—redoing the education that newly diagnosed parents get in the hospital because it was crap. How are you gonna make an impact on that? Well, my type one mom friends and I were like—you're getting diagnosis kids left and right. There's a way that we can provide education to families that also honors that they're in crisis right now. Good education is not handing parents a book and saying, "here's what you do. And here's insulin that your child needs to survive, but don't give them too much because they might die." I actually think the diabetes educators that I've worked with are wanting to improve the education that happens. And I think it would be wise to partner with people in education to say, "how do adults learn? How can we give them more information, but not just 'count up their carbs and give them a shot afterwards'?"
Scott Benner May I break your heart? I was speaking to a health care provider recently. And when I got finished, I thought, "oh my god, I understand this better than they do." And I checked myself—I went to a friend and I said, "is it possible that they maybe are just holding back what they really think, but are saying what is safe to say?" I just felt like I was getting a real vibe—they were saying one thing, and I was adding onto it by saying, "but you have to really consider this too." And then when they said, "oh, no, I agree," but then they went back to the more basic idea, I thought, "I don't feel like they're following me on the rest of this." And the person I spoke to again was like, "yeah, I think sometimes you meet people who really don't get the bigger picture about this at all." They were trained a certain way, and that's all they really know how to talk about, and they haven't dug into it any more than that. And then sometimes those people are in charge of how things get decided. That's scary.
Courtney Well, Maggie had a stomach virus last year, and we ended up in the ER. And the physician asked me when the last time I gave her her long acting insulin was. And I said, "oh, she's on Omnipod five. She's on a pump." And he was like, "yeah, no, I know. When did you give her her Lantus?" They don't know. Yeah. And you're like, "well, a couple years ago, I guess. It's been a while." And the fight of, "oh, take off her pod." No, you're not—over my dead body. You're not taking it off. That's what you're up against. A lot of personalities and understandings and understandings. I just think of it more as—some years you get a good one and sometimes you don't. You just have to bob and weave your way through it. Even when Arden got to high school—I look back now on this lovely thing that the nurse said to me when I was meeting the nurse for the first time: "oh, so Arden will come down and we'll work out her boluses before every meal." I was like, "Arden's never coming down to the nurse's office if we can help it." And she's like, "no, no. She'll come down. We'll be friends." And I'm like, my daughter doesn't need a 45 year old buddy at school. But also I see what she meant, and it was literally from a nice place. It was lovely. But then when I talked to her about diabetes, she really didn't understand it at all. So very quickly, she realized Arden wasn't—that's just where we kept the extra supplies, honestly. We weren't really looking for a lot of input. I wish I could talk to those people, but then you have to count on those people having a self awareness commiserate with the idea that they don't know what they're talking about either. It's a hard conversation to have.
Courtney But again, I think at the end of the day, we can trust that the people who live this experience twenty four hours a day, seven days a week, they're gonna be the experts. I'm never gonna understand spina bifida in the way that the family that's lived it does. I agree. You're doing a great job. Is there anything that we didn't talk about that we should have or anything we missed?
Courtney I don't think so. Again, a shout out to all the public school educators who are doing God's work. And don't be afraid to be, quote, "that parent." That's okay. Get in there and advocate for yourself. You might not come off great, but just try to stay balanced. Don't be the crazy person. That's always my message. Try not to be the crazy person. Not a sprint, a marathon. Absolutely. And if you get a bad one this year, you might get a better one next year. You can still work with the bad ones most of the time. If it's the nurse, if it's the teacher—I'm gonna request something different. I think you can always problem solve.
Scott Benner Can I tell you that I have two children? One has gone through school and then four years of college, and the other one is three and a half years in. I have seen them treated wonderfully by lovely people. I've seen them treated admirably by people who are solid workers—they're just, you know, they get in there and do the work job. And I would tell you that there have been teachers who just flat out do not like your kids. And there's no more high mindedness to it than that. Arden has had experiences where female teachers have said to her, "well, yeah, I'm sure you're used to things going your way because you're pretty." And—I don't know what meeting you're gonna get that all worked out in. So then you realize that's the person you're dealing with, and you try you just melt into the background and just try to get by. You stay out of—this is obviously not the rule, it was an outlier, but it happened. And I probably have about four examples of people being—forget that they're teachers, they're just terrible people. It's sad that kids have to learn that lesson as kids. We wanna protect them, but on the same hand, yeah, there's gonna be people that don't like you. That's a hard lesson. It doesn't always have to make sense either. Meanwhile, most of them are fine. Some of them are like you. You seem lovely. Are you still nervous? We're done.
Courtney I still am nervous. It's just literally a full circle moment in my life. Listen, you're on the short list. When the lady leaves me eventually, I'll throw your name out there—because you seem like you'd be impressed by whatever it is I do for a living. I'm sure that would wear off. I'm gonna need that help in the dating process is what I'm saying. Alright, Courtney, thank you so much.
Scott Benner The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year. One insertion every year? Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com. Arden has been getting her diabetes supplies from US Med for three years. You can as well. Usmed.com/juicebox or call (888) 721-1514. My thanks to US Med for sponsoring this episode. Thank you so much for listening. I'll be back very soon with another episode. 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 hit follow or subscribe. 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, oh, I'll probably send you a Christmas card.
Scott Benner If you've ever heard a diabetes term and thought, "okay, but what does that actually mean?" You need the defining diabetes series. Defining diabetes takes all those phrases and terms that you don't understand and makes them clear. Find out what bolus means, basal, insulin sensitivity, and all of the rest. Check it out now in your audio player or go to juiceboxpodcast.com. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Truth be told, I'm, like, 20% smarter when Rob edits me. He takes out all the gaps and when I go "um" and stuff like that. I hired Rob at wrongwayrecording.com.
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