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Episode 55- MORE 504 Planning: How, When, Why!? Featuring Taylor Inman, MD
339 Plays3 months ago
In this episode, we talk with Taylor Inman all about 504 planning! Taylor is a pediatrician in San Diego, lives with type 1 diabetes herself, AND has a young daughter living with type 1 diabetes. Join us in this conversation as we chat with Taylor all about her journey solidifying her daughter's 504 plan. She gives concrete examples of what specific wording is needed in order to keep our kids safe at school! Check out the resources below for further guidance. Thanks for being here!
Sample 504 plan: Section 504 Plan | ADA (diabetes.org)
Further detail and example orders and wording: Example CGM Remote Follow Orders for Healthcare Providers — Follow T1Ds
ADA CGM Guidance: https://diabetes.org/sites/default/files/2023-09/cgm-final-9-22-23.pdf
Instagram: https://www.instagram.com/typeonetogether/
Tiktok: https://www.tiktok.com/@typeonetogether
Website: www.typeonetogether.com
Team Together: https://www.typeonetogether.com/teamtogether
T1D Diagnosis: Made Simple (The Course): https://typeonetogether.thinkific.com/courses/t1ddiagnosismadesimple
T1D Babysitter List: https://stan.store/typeonetogether/p/t1d-babysitter-resource
Amazon Storefront: https://amzn.to/3VaKSD0
Super Parents Community: https://honeyhealth.app.link/28gQmJjyDsG
Facebook Group: https://www.facebook.com/groups/typeonetog
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Transcript
Introduction to Type 1 Diabetes and 504 Planning
00:00:23
amandacberg
Hey, everyone. Okay, so we are here today with a very inspiring person. Her name is Taylor Inman, and she is a pediatrician in San Diego, actually. And not only is she a pediatrician, but she has type one herself, and she just so happens to have a daughter who lives with type one.
00:00:41
Raquel
you
00:00:45
amandacberg
So today we're going to be discussing 504 planning, basic student rights, and just your journey and making sure that your child has everything she needs to stay safe at school and have, you know, um the same rights as every other student. So hi, Taylor. Welcome.
00:01:06
Taylor
Hi, good morning. Thanks for and inviting me to the podcast. This is a very near and dear subject for me. Growing up, going to school with Type 1 and then now having a child, um it's been a very eye-opening experience.
00:01:19
amandacberg
I know I cannot wait to dive into everything, especially because in a few weeks here, I'm going to have my very first meeting with the public school system that my child is going to. And I'm just trying to get as prepared as possible. um So I'm really looking forward to hearing all about your journey, but um how about we start off with you just introducing yourself. You can share whatever you want about yourself and then
Normalizing School Life Post-Diagnosis
00:01:48
amandacberg
telling us a little bit about your daughter who lives with type one.
00:01:52
Taylor
Awesome. Yeah. So I'm a pediatric pulmonologist for the Navy here in San Diego. and I'm the physician liaison for our child development centers and our aftercare programs. So I have a lot of experience working with ah the medical system and the school and aftercare settings. um I have type 1 diabetes. I was diagnosed when I was five and then about 18 months ago my daughter was diagnosed when she was six. It's been a very humbling and eye-opening experience to have a child with diabetes and it's so different from living with diabetes myself.
00:02:25
Taylor
um And even prior to my daughter's diagnosis of diabetes, I have always been a huge advocate for kids in schools and making sure that kids get what they need. And in the past, it's always been related to asthma things. And I always thought to myself, asthma is so much easier to treat than diabetes because it's just an inhaler. It's not like it's going to change every day. um And little did I know what I would be getting into and what what my future would hold. um and then for For our daughter, once she was diagnosed, our goal has always been to try to make school as normal as possible for her and make her day as normal as possible. I remember having to go to the nurse's office for everything, like missing out on parties and snacks and just being singled out for a lot of things. So my goal was to make things normal or try to keep her day as normal as possible.
00:03:12
Taylor
um And right before she was diagnosed with diabetes, we lost my older brother to suicide. And so that rocked her world. And then
Challenges and Advocacy in Schools
00:03:19
Taylor
shortly thereafter, she was diagnosed with diabetes. So now it's kind of like everything was turned upside down. So um that was our our goal was to not have her miss out on recess, snack time, special treats and parties, um and just try to keep things normal. But unfortunately, school has been the most challenging part of our transition to life with diabetes. So my goal today is to share all of the knowledge to try to help families so that they kind of know what they're getting into and when they hit roadblocks to know where to turn for help.
00:03:50
amandacberg
Wow. Okay. First of all, I just want to acknowledge and um just express how sorry we are. I did not know that about your brother. Thank you for sharing that. I'm sure that that'll touch a lot of people. That's incredibly hard. And does it not feel like when it rains, it pours?
00:04:13
Taylor
Yeah, it was a lot.
00:04:13
amandacberg
Yeah. Wow.
00:04:14
Taylor
um And then with diabetes initially, it's heartbreaking and I still thought, like it at least I know what I'm getting into. like This is awful, but I know how to do this and I very quickly realized I don't know how to do this. This is so different for a child. and so different to have, like, drop your child off at school and have someone else be responsible for them. um That's so hard because for me, if I'm low, I eat a snack. If I'm high, doing's like I can do everything in the moment. But when I'm managing the little person that's not with me, it's a whole different level of challenge.
00:04:47
Raquel
Do you remember much about what it was like managing when you were five in school? Like how did that all work?
00:04:52
Taylor
Well, we didn't have CGMs, didn't have pumps, so it was shots and finger
00:04:54
Raquel
you know
Medical Care Plans and School Communication
00:04:57
Taylor
sticks.
00:04:59
Taylor
And I remember going to the nurse when I was low. and My mom would buy me cans of orange juice that I still, to this day, like cannot drink. They're so disgusting. that and Peanut butter crackers.
00:05:09
Raquel
Oh, so many peanut butter crackers for me too.
00:05:09
Taylor
um Yes, and I remember I didn't like leaving class to go to the nurse So I remembered sitting in class feeling low and not wanting to leave to go to the nurse um Because I just I didn't want to stop what I was doing and I mean eventually I'd have to because I would drop low enough that it was really uncomfortable, but um
00:05:19
Raquel
Hmm.
00:05:29
Taylor
Yeah, it's I think it was different back then. ah And then school lunches were hard too. I had to eat a certain number of carbs, had to finish all my food, had to have snack at a certain time.
00:05:37
Raquel
Yeah.
00:05:38
Taylor
It was very regimented. And now diabetes doesn't have to be regimented. So um it's I think it's a lot better now than it was back then. I don't know. What was it like for you, Raquel?
00:05:50
Raquel
Same thing, I mean, it was like snack at this time, 15 carbs for snack, 45 carbs for a meal, and there was like no going outside of that. And so, yeah, I did have to finish all my food and it was just stressful.
00:06:02
amandacberg
And I don't, I don't know how you guys did that because seriously, like that's how it was presented to us when Hattie was diagnosed at two.
00:06:02
Taylor
Yeah.
00:06:09
amandacberg
And it, it was like less than three weeks where I was like, I'm not doing this. I'm just not like, I don't care if this is what I'm supposed to do. I'm not doing this. I am not forcing my child to eat 45 grams of carbs. It's wild.
00:06:24
Raquel
I don't know. I feel like there must have been less research at the time or just less resources out there to make it feel okay to go outside of that. Like, cause I imagine my mom didn't want to do that either, but I think it was just like the only option she was given.
00:06:33
amandacberg
Of course, yeah.
00:06:37
Raquel
I don't know. Yeah.
00:06:39
amandacberg
I remember thinking to myself, like, if if I'm giving her a certain amount of insulin and then she has to eat 45 grams of carbs, why can't I just give her less insulin and then she doesn't have to eat 45 grams of carbs?
00:06:49
Raquel
i mean
00:06:51
amandacberg
What is this crap?
00:06:53
Raquel
We were also mixing insulins at the time. I just was talking to my mom about this. So I had multiple types of insulin. I don't know if that was true for you, Taylor, but I don't know why.
00:07:00
Taylor
Yeah, it was regular and in pH is all that there was. And I remember we could change how much food I had to eat at meals and snacks. Like each time I went to my endo, they'd ask if I wanted more or less food. So we could change the amount, but I always had to eat the same amount. And I just remember bedtime snacks. I hated them. I never wanted a bedtime snack. I remember crying because I did not want a snack before bed and just being forced to eat food, which probably shot me up super high. So I didn't drop low overnight and just roller coaster.
00:07:27
Raquel
Mhmm.
00:07:28
amandacberg
god Okay, I that's a whole that's a whole that our topic tension, we could have you back on to just like discuss how awful it was and still is in its own right but
00:07:33
Raquel
Yeah.
00:07:41
amandacberg
um
00:07:41
Taylor
But this does relate to school because diabetes has changed over the last 10 years. And a lot of people who have been treating kids for diabetes for a long time at schools are used to that style of management, that kids get a certain amount of insulin, eat a certain amount of food, and they get their correction if they're elevated, and they come to us if they're low, and every kid gets 15 grams of carbohydrates. and It's changed a lot and that's not how diabetes is managed now.
00:08:05
Raquel
Thank
00:08:08
Taylor
So a lot of the school challenges is just educating and updating everyone on all that there is out there because kids with diabetes can be pretty normal. They can eat when they want, they can exercise when they want. You just got to make sure that they're not dropping low. And if they're super high, and you know, we may have to troubleshoot that as well.
Insulin Administration and School Policies
00:08:26
amandacberg
Yeah. Okay. So let's let's dive into this a little bit because you have been advocating, you know, kind of come hell or high water here for your daughter.
00:08:33
Raquel
you.
00:08:37
amandacberg
So um ah how do you how do you want to approach this subject?
00:08:39
Raquel
you
00:08:43
amandacberg
Like, do you want to start from the beginning and move forward? Or what do you want to do? I might just let you take it away.
00:08:48
Taylor
Yeah. So I think there's three main topics to cover um today. One is the orders that come from your doctor's office or your endocrinologist's office. The second part of it is you know what happens when the orders get to the school nurse there and what happens at school. And then the third part is the 504 or IEP that you need at school on the Americans with Disabilities Act and all the legal protections for your kids at school so they can have a normal school day.
00:09:20
Taylor
um So we can dive right into to how things work coming from your doctor's office. um And this is where i I'm used to this side of things with schools.
00:09:26
Raquel
Okay.
00:09:30
Taylor
I'm used to being the doctor, writing the orders, writing all the things down. But it's been eye opening to see how little I actually knew about what happened with the orders that I was writing.
00:09:41
amandacberg
Yeah, okay, so as you're discussing this with us, can you also pull in just like anecdotes from your time and your child's time because your daughter was already in school when she got diagnosed, right?
00:09:41
Taylor
but
00:09:55
Taylor
Yes, she was in the middle of her first grade year.
00:09:56
amandacberg
And yes, so you had to then immediately like once she was stable and feeling good again, like she's got to go back to school, right? So you then had to immediately figure out a medical care plan and a 504 and all of that. So let's, yeah, let's start with the medical care plan and and how you went about getting those so doctor's orders and everything.
00:10:15
Taylor
Yeah.
00:10:19
Taylor
We were still very much learning what she needed because we didn't know. It was so new. We caught it so early. She was definitely honeymooning.
00:10:27
amandacberg
Thank
00:10:28
Taylor
We were learning at the same time as the school. What I've learned over the last 18 months is that everything that's done at the school comes from your doctor's office.
00:10:33
amandacberg
you.
00:10:39
Taylor
Your doctor will write whatever medical needs your child has during the day, they give specific instructions on what to do. um And they usually doctors have a standard form that they use or there's different standard order sets that they can use. Most the orders include things like blood sugar levels that need intervention, which is low and high. um One anecdote here is that the forms that are included, they have like bare minimum stuff, but it doesn't it shouldn't restrict what your child has access to. So your doctor can always like write extra things in. If your child needs a blood sugar check at a certain time or you know right before they're going out for recess or PE or whatever, your doctor can write in whatever whatever your child needs.
00:11:23
Taylor
um and um And so one thing is that when you're going to your doctor's office for these orders, you need to have in your head an idea of what blood sugar levels require an intervention. And you might know that not know this right away, and it might be different every single day, but the school needs something concrete that they can follow. So think trying to think through all of the unlimited scenarios for your child and what number you want a low treat of that. i mean
00:11:55
Taylor
We treat at 70, below 70 definitely needs treatment. We've slowly upped that number now and we're treating at like 80 just so that she's not symptomatic before getting treatment and it's not an emergency before
Creating and Implementing 504 Plans
00:12:07
Taylor
we treat. um And then when they're low, how much do they need? Do they need 15 grams or are they fine with 4 grams and rechecking in 10 or 15 minutes? um So you kind of have to think through that in your head. And then also, before going out to recess or PE, we like watching her to be at least 100. We don't need it to be super high. But if she's below 100, then we have a pretty good chance of her continuing to drop further because our recess was before lunchtime.
00:12:35
Taylor
um And then other things like your insulin dosing, your ratios, corrections, um if you use a dose calculator or not, they still have to write in like ratios even if you're using your pump. um And then also if we change settings in our pump, we were fortunate that they just used the dose calculator so we weren't having to revise orders every time because they didn't know to go in and look for the all the settings that were in our pump. um And then for highs, you know, figuring out when your kid needs something done. And so we have blood sugars higher than 300 for two hours than we needed to check for ketones or troubleshoot or do something. But every day is going to be different. Like first day of school last year.
00:13:20
Taylor
got her spiked up to 300 just from the adrenaline and nerves and was super high and then did the exact same thing the next morning and she was low by 10 o'clock. So you're going to learn over time but kind of having some rough guardrails to keep your kids safe are a good starting point for um For your orders, and then um the other thing to include the backup plan, if pump or cgm falls off a lot of schools default to the child has to go home, or if the cgm comes off, we won't replace it.
00:13:47
Raquel
Good.
00:13:53
Taylor
And our school has a policy that says the same thing. um are and Ruby, our daughter needed to know that she could change her pump or she needed to. That was one of the things that like sometimes her pump just doesn't feel right. And I always try to teach her like, if it doesn't feel right, you know, your body rests best. If you think we need to change your pump, let's change it. And there'd be times where she'd knock it on something at school or get it caught in a fence. And she's like, it feels funny. I feel like the cannula's bent. I want to change it.
00:14:18
amandacberg
Mm hmm.
00:14:18
Taylor
And before she could change it at school, that meant me or dad having to go to school to change it for her, which was a lot of work. um And our school nurse doesn't have to help change insulin pumps. So we trained her eight-year-old brother to help with insulin pump changes.
00:14:30
amandacberg
Mm
00:14:31
Raquel
Mm.
00:14:31
Taylor
She just didn't have the fine motor skills to draw up insulin into the, like, hold the vial and pull it up to change her pod.
00:14:35
amandacberg
hmm.
00:14:38
Taylor
She could do everything else except for drop the insulin. um So he was able to help her, which was really nice, but not a great solution. I would love to have been able to teach an adult to help with that, but that was our way around that. And we did have to write, our I have our endocrinologist write that um older sibling can assist with influent pump and Dexcom changes.
00:14:58
amandacberg
Before we keep moving on, why was there pushback on an adult school nurse putting a pump on a child? Especially, is is Ruby, sorry, can we say her name?
00:15:12
Raquel
you
00:15:13
Taylor
Yes, yes, yes, yes.
00:15:14
amandacberg
Okay, she thinks, is she she's on Omnipod?
00:15:18
Taylor
Yes, yes.
00:15:19
amandacberg
Okay, like, that's a relatively easy pump to fill.
00:15:25
Taylor
Yes, you and I are on the same page here.
00:15:28
amandacberg
So why?
00:15:29
Taylor
um are so yeah Our school is amazing. um All the staff at our school was great. We have a health tech who's not a licensed trained person. Health tech was amazing. Like from day one was willing to give insulin, change pump, change death, whatever she needed.
00:15:42
Raquel
Thank
00:15:44
Taylor
um our Our nurse and is a nurse and she was great. I'm pretty sure Ruby was the first student with diabetes that she actually treated, which is fine. i feel like sometimes it's easier to teach somebody who has no experience with diabetes because all they know is Ruby. All they know is what's normal for her. So um it's kind of a blessing in disguise when you get someone like that. But from a school health setting, there are lots of rules and restrictions and policies. And our school district has a number of very restrictive policies that are very outdated.
00:16:11
Raquel
you.
00:16:15
Taylor
that we were up against. And you did I just had to pick what was important, which things were important to me to challenge, and which things I could find a solution to that worked. And I found a solution for that. as I trained a brother to help. um But really, it's it's not hard to change a pump. Kids need access to insulin at all times in school. um And then that's another thing. In our and our school district, um only nurses are allowed to give insulin. And we only have a nurse at school two days a week.
00:16:47
Taylor
It increased to three days a week.
00:16:47
Raquel
Okay.
00:16:49
Taylor
um Second year, we were there with diabetes. um And it varies by state. In California, there was some critical ruling in 2013 stating that unlicensed trained people can administer insulin. But our school, um medical advisor, believes that it's dangerous to have people who are not nurses give insulin. And so that was a big challenge as well.
00:17:14
amandacberg
So what happened because you're saying like it wasn't until her second year of having diabetes or second year yeah of having diabetes in school.
00:17:22
Taylor
but and even then our nurse was only there three days a week
00:17:25
Taylor
um we've taught
00:17:25
amandacberg
So what happened the days she wasn't?
00:17:28
Taylor
um In the beginning, things were really challenging. We had to modify our orders eight times in like the first six weeks that she had diabetes um because everything had to be anytime, anything changed, it had to be changed, treating lows. At one point, like it said that she needed um assistance with doing finger sticks because when she first got diabetes, she couldn't she didn't know how to do a finger stick. um And then she came home one day so the nurse wouldn't let me poke my finger. She was poking it because I have to change my orders to say that I need supervision and not assistance.
00:18:00
Taylor
And I'm like, oh my gosh, like this is absurd.
00:18:01
Raquel
Yeah.
00:18:04
Taylor
So there's a lot going on. So ah after the first six weeks, I got fed up and threw my hands up and said, I'm not dealing with you anymore, school. I'm going to do this myself. And I put her on loop pretty quickly because that's what I use. And there's a caregiver app so that I can administer all of her insulin remotely. And that's what we did. um For about six weeks or so, we had no involvement from the health office at school. I gave all her insulin remotely. If she was low, I texted her teacher and told her to eat something.
00:18:34
Taylor
And we just did it all ourselves because it was too hard to try to work through a solution with the school.
00:18:35
amandacberg
Mm-hmm Wow.
00:18:43
amandacberg
wow
00:18:43
Taylor
um Then got more challenging because school lunch was changing and she loves school lunch. And it's like an all you can eat self-serve salad bar and a main entree, which is a nightmare to begin with. Um, and there were days that the main entree would change and be like, like it supposed to be chicken leg one day, which is zero grams, and they'd serve a yogurt parfait, which is 30 grams and vice versa.
00:19:04
amandacberg
oh
00:19:05
Taylor
Like go ahead, instead of your parfait, it's a chicken leg. um So those are really big drastic changes. um And I asked the health office for help with just letting me know when the scheduled lunch was going to be different because I was giving lunch doses remotely. um And they were not able to do that. So at that point, I realized I needed help. I needed to go to our physician. We created orders stating everything that she needed um and then scheduled a meeting. It was spring break when we did all this and scheduled a meeting when we got back from spring break saying, look, we she needs help. um We need to count carbs. This is how things are going to be done. She's not going to be removed from her peers every time she's low and forced to sit in the nurse's office for 30 minutes because she was missing class.
00:19:50
Taylor
falling behind, lots and lots of things. So um we went through all of this process of going to the doctor, getting all the orders, um and then
Navigating School Lunches and Insulin Dosing
00:20:00
Taylor
you know what ensued after that. um And then we actually were able to get our health tech approved to administer, no, not administer, to supervise Ruby pushing the buttons on her insulin pump to give insulin. Because then she wasn't actually giving the insulin. It was our daughter. um And I also pushed to have our health tech approved to be able to push buttons and give insulin because sometimes six-year-olds are pricey and don't want to do it.
00:20:28
Taylor
And there were times there was like a party yet in their class and her health tech was like, yeah, she handed me her phone and ran off. I'm like, yeah, that sounds about right. She didn't want to push her buttons. She wanted to push buttons for her.
00:20:38
amandacberg
Yeah.
00:20:39
Taylor
um So we were able to get that approved. But as we'll get to later with 504 and Accommodations Americans with Disabilities Act, Everything that I went through advocating for my child only applies to my child. It doesn't apply to any other kids, which is so frustrating because these things are so easy and like I want diabetes to be easy for all kids and I just helped my kid. so
00:21:00
amandacberg
Oh my gosh. Okay. This is crazy. I'm like taking it all in. If you see me writing, it's because I'm taking notes for myself.
00:21:08
Raquel
All
00:21:10
amandacberg
So I'm like taking down a assistance versus supervision as like verbiage.
00:21:14
Taylor
yes versus independent and a lot of families will mark their child as independent very very young and we did that for for snacks we said she was independent because without that she'd have to have someone supervise her entering the button but and pushing buttons on her phone and that would take 10 minutes out of her recess or whatever time and it just we didn't want her to have to miss out so at seven we marked her as independent for snacks so that she could
00:21:16
amandacberg
That's crazy.
00:21:31
Raquel
right.
00:21:41
Taylor
dose for snacks in the classroom and not have to leave. um And as a secret, our teacher was amazing. And we kind of worked with her and we're like, she's going to tell you a random number, like she's going to say 10, and then she's going to say, oh, 0.65. If you just say OK to her, then good. And we had her pump settings constrained so that she couldn't give very much insulin. And the worst, worst case scenario for us is that she would forget to give insulin for a snack. Um, and run high and she's on loop. So it's constantly looping for her. So, um, that was our way around, which I mean, she wasn't independent at seven, but we marked that just to make her day easier, which is not right. But it's how we got around it.
00:22:23
amandacberg
Yeah, it is what it is.
00:22:23
Raquel
wow
00:22:25
amandacberg
Okay. Do you have a question, Raquel?
00:22:26
Taylor
Yeah. so
00:22:28
Raquel
No, it's just crazy.
00:22:28
amandacberg
No. Yeah, I know. Keep going, Taylor.
00:22:32
Taylor
um so So you get your orders, whatever your orders say. Our orders have 18 supplemental bullet points of everything that our child needed during the day. They're a little bit extreme. um But once you get your orders, you you give them to your school nurse. um Many school nurses have seen kids with diabetes and treated diabetes before. But like you were saying, the tech has changed so much in the last five to 10 years. um And plan on going in and meeting with your nurse and classroom teacher about your kid's specific needs. I know a lot of this like applies more to elementary school. It's harder when you get to middle school and high school. I haven't been there yet as a parent. So I ah can't even imagine all the challenges that goes into trying to train multiple teachers. um But as a parent, plan on meeting with teacher and the nurse to train them on your specific child and what your child needs.
00:23:25
Taylor
um And every kid is different. um A lot of times a school nurse will translate those physician's orders into a school health plan, which is like a school document that outlines how the diabetes will be treated during the day at school. And that's helpful. They can give it to other nurses or someone subbing or the health tech or you know classroom teachers. A lot of times are pretty detailed for classroom teachers, but it kind of translates everything. um When that happens make, you want to make sure that your school health plan doesn't unnecessarily restrict your child. Our school district um writes in on the school health plan that only an RN or LVN can give insulin, which restricts your child because I don't need someone that's train only trained.
Legal Protections and ADA Compliance
00:24:12
Taylor
um And to be clear, if there's not a nurse at school and the kid needs and child needs insulin at lunchtime, they will send a nurse or LVN to give the lunch insulin. um They claim that they'll send a nurse to give insulin for snacks and parties, but our experience was that that never happened. um So that's their solution around it, is to send someone random who's not familiar with your child to give your child their insulin. So they could get it at lunch, but it was challenging. um And then also, we found in our health plan that it said that the student will notify an adult for a CGM alarm.
00:24:48
Taylor
But all along, we've told our school a kid doesn't hear alarm. She's lived her whole life hearing my Dexcom alarm. So now that she has Dexcom alarms, she doesn't hear them.
00:24:55
Raquel
Yeah.
00:24:57
Taylor
She doesn't want to stop. We have her alert set to the crying baby. There's a crying baby on Dexcom for alerts.
00:25:02
amandacberg
Oh my gosh.
00:25:03
Taylor
I don't know if you're aware of this. ah She tunes it out.
00:25:05
amandacberg
No.
00:25:06
Taylor
like So she's watching TV. There's this baby crying. And she is just happy as a clam. student out doing her thing.
00:25:15
Taylor
And she's a kid and like every since she's not gonna stop playing and tell someone she's beeping like she's she's having fun.
00:25:19
amandacberg
Hmm.
00:25:21
Taylor
ah So our our health plan said that um it also said like indicated if your child can identify low and high blood sugars and um for the most part Ruby's not very good at identifying when she's low or high. um Yeah.
00:25:38
amandacberg
Okay, so as you're going through all this, my thought is like, how do we help parents get ahead of this so they don't have to like deal with this after the fact? And I think that something that is smart, not to pat myself on the back, but I'm going to do it anyway. that I've done is I asked them to print out their standard orders like six months ago. So I have physical access to the standard orders that they would print anyway.
00:26:08
amandacberg
And i'm I think I've mentioned this before on here, but I'm gonna go through it with a fine tooth comb before I go back to my daughter's endocrinologist and say, can we change this?
00:26:14
Raquel
Okay.
00:26:21
amandacberg
Can we add this? Is there any way to do XYZ, whatever, so that there's all these like addendums to the standard orders. And that's the first set of orders I plan on bringing with me to our 504 meeting, which happens the week before school starts.
00:26:36
Taylor
We're gonna go through it.
00:26:39
amandacberg
And then I place those orders down on the table, explain diabetes to the LVN, the school nurse, the principal, and her teacher, because that's how I'm going to request to be at the meeting with me. explain diabetes, Hattie's specific diabetes needs with those orders. And then based on our conversation with the the mother, um who was also a teacher, her name was Amy, she was on the podcast last week, that from there we go over 504 accommodations and theyre the school is supposed to type that stuff up.
00:27:13
amandacberg
So sorry if that's like jumping around a bit, but what do you think about that plan? And does that sound reasonable?
00:27:19
Taylor
Yeah. So you had your endocrinology office print up the standard endocrinology orders that they get to the school, or you had the school give you their standard diabetes endocrinologist.
00:27:26
amandacberg
Yes. Nope. The endocrinology.
00:27:32
Taylor
Yeah. Awesome. Good job. So then you at least kind of know what you're asking for. um One thing that is new for orders everywhere is that um but in June of 2024, the American Diabetes Association updated their CGM at school guidance. and Their policy used or their you know guidance used to say that CGM with remote follow can be used um if the child needs it to go through the 504 process to get that approved. We did that. It was very challenging. um and The ADA has now modified their CGM guidance to say that if a child's physician or medical provider determines that they need CGM with remote following and they write it in the orders, then the school must comply. um This has been evaluated at the Department of Justice level in Connecticut in 2020. They issued statements to four different school districts um for families who had requested CGM with remote follow and been denied. Department of Justice said this is a reasonable accommodation. You must provide this for
00:28:36
Taylor
For children and all the schools you know did and followed and now things are great in Connecticut, um but there are a lot of schools across the country that refuse to remote monitor. And as we just established children are not very reliable. um And then if kids are switching classes and young kids or adults or adults, high schoolers.
00:28:55
amandacberg
Yeah.
00:28:56
Taylor
um or kids at recess or the lunchroom and they're low, they may not realize it. And i myself as an adult, I feel like I'm good and I'm on top of it, but there's times where I'm low where I'm just not acting right. Like last weekend we were in Tahoe with family and I was low. My Dexcom was alarming. I had a bag of low snacks in my hand, but they were like, high chews, smarties, and starburst. And I didn't feel like any of those. And so I'm digging through my backpack because I wanted Sour Patch Kids, and my desk sounds alarming. And I have a cousin who's 18 who has type one, and his mom was there. And finally she was just like, what are you doing? Like, you are low. Why are you digging in your backpack? I'm yeah. like ah yeah
00:29:32
Taylor
I should just eat something that's in my hand because it was like a couple minutes of me digging and there were no sour patch in my bag.
00:29:34
amandacberg
Oh my gosh.
00:29:38
Taylor
I like hadn't packed them.
00:29:38
Raquel
Yeah.
00:29:39
Taylor
So I would never have found them. And I just like it just the dots weren't connecting. I was low. um So it's like even older kids could potentially need help. And and the whole point of CGM with remote follow is not to make you know more work for anyone. It's to identify one when a child needs medical attention. So Initially, we wanted our low alarm set at 65. So that's like, if nobody's treated an alarm and we get to 65, somebody needs to know somewhere that she's low. We had high alarms turned off. We had no data alarms turned on only because we would leave her phone places because she's seven and seven-year-olds do that.
00:30:15
amandacberg
Yeah.
00:30:16
Taylor
um And that only went off a few times that it was so helpful because they'd find her phone. She would leave her phone in the classroom when they were outside doing recess or doing stuff, leave it in the bathroom, leave it at PE. um and That's new technology. I think a lot of schools are get just scared of new technology when really remote following makes things easier. It gives the nurses or health professional or whoever is responsible for that child access to the information about their blood sugar numbers. If they need blood sugar check before recess in PE, you click on an iPad to see what the number is. so
00:30:50
Taylor
um It's a reasonable thing.
00:30:51
Raquel
Thanks.
00:30:52
Taylor
The American Diabetes Association now supports it. um It's on their most recent guidance ah released in June 2024, but there hasn't been a lot of um publicity about that yet. So if your child needs that, have your physician write for that in your school orders, and then the schools must comply because it's your physician's orders.
Diabetes Management Strategies in Schools
00:31:13
amandacberg
Yeah, yeah, it's interesting. So like along these lines, I'm curious, you know, obviously you can't speak for the LVNs and the school nurses and whatever, but one thing, so we just were i um friends for life, the conference in Orlando. And we were talking with the people who make Sugarpixel. And Sugarpixel, for those of you listening who don't know, it looks like an alarm clock. It connects to your child's Dexcom data, and it pulls in their current blood sugar number. It gives the trending arrow, and then it gives the ah rate of change right next to it. So 120, right arrow, down 2 from the last reading, right?
00:31:56
amandacberg
And so the Sugar Pixel people were telling us that a few school districts who stopped fighting against it started actually buying Sugar Pixels instead of relying just on like iPads and phones and follow-ups. And then they have a bunch of Sugar Pixels across the nurse's desk and above each number is the child's name. and like grade or whatever and that's how they monitor and it's like way safer because then if they see oh my goodness that child is 80 but down 35 then that nurse knows to like get up and walk into that kindergarteners classroom instead of waiting for the next number and hearing an alarm for 48
00:32:45
amandacberg
And then it's way too late, then it's like, it's like this doesn't I think what's frustrating is the the nurses and um LVNs and like whatever anyone who's pushing back on it and saying like that's too much work. They're not realizing that it's actually creating less work. And it's less scary work and it is so much safer for the kids. And at the end of the day, the kids need to be the number one priority here. And it's, it's like, it's going to protect them to like the nurses to actually follow and see these rates of changes and intervene early.
00:33:13
Taylor
Yes.
00:33:22
amandacberg
It will protect them, you know? And so I don't know, it's just a tangent, but yeah.
00:33:29
Taylor
You're preaching to the choir here, but I love that. That's an amazing solution. We just went with iPad solutions. It's what we knew how to how to do. We have a sugar pixel at home.
00:33:36
amandacberg
Yeah.
00:33:37
Taylor
Love it. It's amazing. um But we ultimately i went with iPad route. And once we had that in school, it was a night and day difference.
00:33:42
amandacberg
Yeah.
00:33:46
Taylor
for my ability to work at work and not be paying attention to every single alarm. Before we knew that someone was aware, we'd see that she was low. We'd have to call, wait on hold to talk to someone in the health office and hope that they could hope that they had treated her. Or if they weren't in the health office, it may be because they were out treating her and then nobody in the health office answers the phone. So then you're just lost. You're like, okay, my kid's 40. I don't know what's going on. Um, but once we, I knew that someone was aware when she was low, it was so nice because it, I just felt like she was safe at school.
00:34:18
Taylor
Finally.
00:34:18
amandacberg
Yeah, yeah, that's amazing.
00:34:21
amandacberg
So should we roll into like 504 plans then?
00:34:21
Taylor
Yeah.
00:34:25
amandacberg
Because I feel like we covered medical care plans. I think that the overall like consensus here is like First of all, our community, I feel like gets very, very anxious about the medical care plan side of it because every child is so unique. The main suggestion is to ask your endocrinology office for their standard set of orders as a step one so that you as the parent can go through with a fine-tooth comb and make adjustments as you see fit based on your child's unique needs, and then you go from there. right
00:35:00
amandacberg
So let's like put that aside and then it's a work in progress forever, but eventually you'll narrow it down.
00:35:00
Taylor
Yes.
00:35:07
Taylor
Yeah.
00:35:07
Taylor
And then also just knowing what your kid needs and at what point you want something done. And that'll change over time. So like what number you want lows treated at, what numbers you want highs treated at. If you go into your end of visit knowing that information, it's helpful. It took me a while to figure out that information and realize that that was very important.
00:35:07
amandacberg
and
00:35:24
amandacberg
Yes.
00:35:26
Taylor
And then your endocrinology your standard orders that your doctor uses, you're not confined by that order set. You can add anything and everything that you want to that, free text, like you're not confined by that, but knowing how to answer all those questions is helpful.
00:35:40
amandacberg
Yeah.
00:35:41
Taylor
And the other thing, for ketones, a lot of times like urine dipsticks are in there. We didn't want our child having to pee in a cup at the nurse's office because she hadn't really done that at home. and We just felt like that might be like weird or embarrassing. So we bought the blood ketone monitor. At first we said don't monitor for ketones, and then we ended up getting a blood ketone monitor that we used a couple times when she had super high blood sugar. One after she changed her pod herself, um and then was like 300 after lunch, so I was worried that her pod wasn't working correctly.
00:36:13
Taylor
And it was, but we checked the blood ketone and it was zero, so I felt good that she just was high, because it happens sometimes.
00:36:19
amandacberg
Yeah, yeah, exactly. Okay, so yeah, that's, it's so interesting just thinking about all the micro details, but I think that there's, there's nothing we can say to alleviate the anxiety for our listeners right now, other than, like I just said, Ask your endocrinologist office for it and go through it with a fine tooth comb and little by little get sorted out. The next suggestion I have, which I'm also going to do myself, is to reach out to the school before the school year starts or, you know, whatever, right, as your child's diagnosed.
00:36:54
amandacberg
and ask, when is recess?
00:36:55
Taylor
When is recess, when is once, when is staff, you know, like all those things, you know, when they're outside planning and see that kind of
00:36:57
amandacberg
When is lunch? When is snack? You know, like all those things so you know when they're outside playing and the exact times of everything.
Selecting Supportive School Districts
00:37:07
Taylor
thing.
00:37:07
amandacberg
So then you can like adjust your orders more accordingly.
00:37:08
Taylor
So then you can like adjust your orders more cold.
00:37:12
amandacberg
um I guess, I don't know.
00:37:14
Taylor
I guess, I don't know.
00:37:16
amandacberg
I'm just spitballing here. but
00:37:18
Taylor
Yeah, no, that's good.
00:37:19
amandacberg
so
00:37:19
Taylor
And then expect to make changes. Expect, you know as things as you identify problems in schools, expect a need to make changes.
00:37:21
amandacberg
Yeah.
00:37:26
Taylor
um Your endocrinologist is used to making changes. so um And you'll learn. Diabetes will show you what it needs. They will show you where the problems are.
00:37:33
amandacberg
Yeah.
00:37:34
Taylor
So you don't have to know everything going into school, um just making sure that set your kid is safe. The other part, um our school health plan said that like an adult will monitor for all, a trained adult will monitor for all audible alarms. But we discovered after a few months that most of the adults at school, other than our classroom teacher and PE teacher, teacher did not have any training about diabetes. And in second grade, they rotated classes, so there were multiple teachers.
00:37:57
Raquel
So.
00:38:02
Taylor
um So our our child was with a lot of adults that didn't have any training at all with diabetes. So finding out if you're your kid's ever going to be with a different person. And then um halfway through our second school year of diabetes, we had it added to our 504 plan. If there's going to be a substitute teacher, or a substitute school nurse and health tech that parents would be notified so that we knew there was someone not familiar with our child um at school that day.
00:38:25
amandacberg
Hmm.
00:38:31
Taylor
Because our teacher got really in tuned and was amazing, but if she wasn't there, then you have no idea who's going to be responsible for your kid. We had one substitute teacher who was like, oh yeah, I got the information that she has diabetes. So she'll she'll tell me if she needs something. And we're like, no, she will not tell you. like If you hear a beep, you need to tell someone. She is 100% not reliable. that is That is why we have all these things because she does not tell people.
00:38:57
amandacberg
That's so wild. So is that that whole thing about like, you know, you need to be notified if someone who's not your child standard teacher is going to be with them.
00:39:10
Raquel
you
00:39:10
amandacberg
Is that in the medical care plan or is that in the 504?
00:39:15
Taylor
That's in our 504. We can switch to 504 now, because yeah.
00:39:16
amandacberg
Can we dive in? Yes. Let's dive into that.
00:39:19
Taylor
Yeah, um so every kid needs a 504 plan or an IEP plan. IEP plan is um only for kids who have an educational disability, I believe. So our kids in typical class, she does not qualify for an IEP, she only qualifies for a 504, which is fine. um Both of these are legal documents that
Empowering Independence in Diabetic Children
00:39:43
Taylor
protect your child. They say what your child needs to have access to an equal education to their...
00:39:50
Taylor
peers um who don't have a disability. um So your kids are protected under the Americans with Disabilities Act. um This is a federal law, it's a civil rights law that protects people with disabilities from discrimination, protects anyone who has a disability. ah Growing up with diabetes, I like to think I do not have a disability, but under the Americans with Disabilities Act, type 1 diabetes is a disability because you have your endocrine system does not work, your pancreas does not work.
00:40:11
amandacberg
Mm
00:40:19
Taylor
um So the ADA applies to, there's a Title II part of the ADA that applies to state and local governments. So that's like public school districts, parks and rec stuff in your town. There's also Title III that applies to public accommodations, which are private establishments, like doctors' offices, hospitals, other things, camps.
00:40:37
amandacberg
-hmm.
00:40:38
Taylor
And so um there's there's a lot of different details that you can dig into, but basically it protects your kid. Your kid should have equal access to education as their as their peers. So um some of the examples of discrimination under the ADA are like denying your child opportunity to participate. So this can apply to aftercare programs at school, like your your child should be able to participate in any aftercare program at school.
00:41:01
amandacberg
Oh.
00:41:08
Taylor
It will take extra training for those people, but they can't deny your child from participating.
00:41:12
amandacberg
Hmm.
00:41:14
Taylor
um Or if your child's allowed to participate in whatever, in school, but in an unequal manner, that would be discrimination. And there's lots of other examples of discrimination. So the Americans with Disabilities Act requires that a reasonable modification um be made to practices, policies, and procedures unless it would fundamentally alter the services. So like if you sign your kid up for a soccer camp, you can't change it to an art camp. That's like where that statement comes from.
00:41:44
amandacberg
Mm.
00:41:47
Taylor
So in school, your child needs reasonable modifications to policies, practices, and procedures, and it has to be provided in an integrated setting. The reason that I like keep harping on that aspect of things, because a lot of schools and school districts have policies and procedures related to type 1 diabetes care that are restrictive. So our school has a policy that um they will not remotely follow CGMs. I thought for at least the first six months, I thought it was not possible to have my child's CGM remotely followed because there was a policy that said that this could not happen. It wasn't until I actually dove into all this ADA stuff and talked to other advocates and people in this area and said, no.
00:42:35
Taylor
The fact that there's a policy that discriminates you know against this and applies a blanket policy to students with disabilities is problematic. If your doctor determines that this is needed for your child and they ordered it, the school must comply even if they have a policy. um So it wasn't until I understood that that I challenged it and I was successful, but it was very painful getting it in.
00:42:51
amandacberg
Hmm.
00:42:58
Taylor
um And ah the other part of it is reasonable modifications for kids. um ah yeah Most of the diabetes stuff is a reasonable modification, um including following CGN. Or just one of the other things is we wanted diabetes care provided in the location that our child is at. We didn't want her removed from her peers for ah blood sugar checks or for low treatments. um So if you request a reasonable modification to your school, even if they have a policy against it, they must conduct an individualized assessment of your child and engage in an interactive process, talking to parents, teachers, physicians, caregivers um about what you're requesting for your child to evaluate if it's needed or not.
00:43:42
Taylor
Usually your physician is the best evidence of the child's needs so having things written in your orders are usually the most helpful, but schools are required to do an individual assessment and it's through this 504 IEP process that you get your individualized assessment done.
00:43:56
amandacberg
Mm hmm.
00:43:57
Taylor
um And the Americans with Disabilities Act is a federal law, so it supersedes all state laws and protects all kids in the country. um There are some states that have laws that do not allow Influent Administration to be delegated to unlicensed trained people. Which is fine, but if your child needs, ah kids need access to insulin at all times.
00:44:20
amandacberg
Mm hmm.
00:44:20
Taylor
ah So if there's not somebody to give insulin at all times, then maybe that means that your school needs to staff a nurse at school all the time. If they're not going to train someone or if they can't train someone because they're not allowed to. So the solution is not to you know, not give your child what they need. The solution is to work with the school to figure out what they need. And so if our school wasn't going to allow an unlicensed person to give insulin, like I can fight to get a nurse there all the time, or I can just teach my kid how to do it themselves for a young child or a of developmental delay, they may need a nurse there all the time if you can't train someone because you could need insulin at any time.
00:44:57
Taylor
um and Back to our school orders, we said, you know, Our daughter's blood sugar is greater than 300 for two hours. A correction needed to be administered within 30 minutes. um Or no, it may have said at the time that it's identified. And that was because our district said, we'll send a nurse to give insulin. It's like, well, if you're sending a nurse, she's already been higher than 300 for two hours. How long will that take? So we gave very concrete, specific things in our orders for that. That's a lot. That was a lot of words. Hopefully people are still awake after all that.
00:45:28
amandacberg
Yes. Yeah. No, i'm I mean, obviously I'm like fiercely taking notes over here. I think that what it comes down to is just understanding, everyone needs to understand that the ADA a is the federal law, right? And the federal law trumps all state laws. So if you are going to your child's school and your school is like, oh, well, we have a policy that says we don't have to do that, you can hold your ground and fight for your kid.
00:46:06
Taylor
Yes, so schools cannot say, we can't accommodate you because we have this policy. The whole point of the Americans with Disability Act is that schools need to modify their policies to provide reasonable individualized accommodations based on the disability, unless it alters the fundamental nature of the program. So treating a low in the classroom does not alter the fundamental nature of your school. It does create more work, but it's what your child needs so that they're not missing out on 20 minutes of class every time that they're low.
00:46:36
Taylor
And the other thing, too, is that a lot of the pushback is because it creates extra things create extra work for school.
00:46:37
Raquel
you
00:46:48
Taylor
And kids with diabetes, are they are extra work, um unfortunately. But most parents are trying to get, you they don't want their kid to need anything extra. It's like if they're low, they need a snack. We don't want the load to happen in the first place. So most families are really trying to work hard to not have all these things happen, to not need all those these extra things. But having the accommodations in this place really goes a long way. There are a lot of specific things to include um in the 504 as well, which we can go over.
00:47:20
Taylor
ah The American Diabetes Association has a really good standard 504 plan. It's like five pages long.
00:47:26
amandacberg
Mm-hmm.
00:47:26
Taylor
We went through and printed that out and just circled everything that our kid needed. I think there was only like one thing that we crossed out and it was um that the diabetes diagnosis be kept like confidential or like only shared with people who needed to know. And we were like, No, please tell everyone. We want every adult aware that she has diabetes. like The more people that know, the safer she is. So that was the only thing that we didn't want.
00:47:49
amandacberg
Yeah.
00:47:51
Taylor
um And we used that in our 504 meeting um when we were asking for things and we were getting pushback for ridiculous things, like a safe place to put our fanny pack at recess or just an adult to
Preparing Diabetic Children for School
00:48:02
Taylor
hold it. Our school really pushed back on that for a long time. um I don't know why, I still don't know why. And I had to point out that there were two different places in the American Diabetes Association 504 that referenced the student having a safe place to store supplies during recess and PE.
00:48:14
amandacberg
Okay.
00:48:20
Taylor
And then finally, we got that included. But there's a lot a lot of good stuff to include on there as well.
00:48:27
amandacberg
Okay, that's so helpful. We definitely will be linking that um because that's another thing. So I didn't even know about that. And like, honestly, I've really been, I've really been putting off a lot of this. I've like had those freaking doctor's orders and access to all these. all this information, but I think that's what is making it overwhelming for so many parents is like, there is so much, where do we even start? you know And so trying to like strip it all down and simplify it as much as possible. So this is another thing I will be doing is printing out what you just talked about, the American Diabetes Association 504, kind of like outline standardized plan.
00:49:10
amandacberg
And so with like my notes or my updated ah medical care plan from our endocrinologist office, plus this standardized 504 plan in our meeting one week before school, that's about as prepared as I can be before the meeting.
00:49:12
Taylor
I'm
00:49:30
amandacberg
And then you just adjust from there after the meeting. um Right?
00:49:34
Taylor
Yes.
00:49:35
amandacberg
Okay.
00:49:35
Taylor
Yes. Our and our first 504 plan was awful. It was like a month into diagnosis. We didn't know what she needed. Like I was overwhelmed. It had like five things on it. It was horrible. So it wasn't until a full year later that we actually updated our 504 and got it a lot more robust.
00:49:53
amandacberg
so Okay.
00:49:54
Taylor
And the first time I just I wanted her to have access to her phone at all times because it was her receiver for her pump.
00:49:56
amandacberg
Yep.
00:50:00
Taylor
It was my way of seeing what was going on. And our school has a no phone policy. So that was the one goal that I had of her initial 504 meeting was her having access to her phone at all times um and then like access to her diabetes supplies at all times. And um Like being able to poke her finger wherever because and our school did not initially they did not like that and she didn't even know how to poke her finger. So that was another challenge. But once she learned, I didn't want her to have to walk all the way across campus to the nurse's office when she felt like she needed to poke. And one thing that was really sad is we finally got that included in our doctors. are There's a lot of stuff going on.
00:50:39
Taylor
But the first time she wanted to check her blood sugar herself, we'd always told her, if if you feel funny, check. And she never wanted to check her blood sugar. And then one day she's like wanted to check it. And her classroom teacher, who is amazing, didn't know that she was allowed to check in the classroom. So she said, I need to check. And the teacher said, you have to go to the nurse. She's like, I don't want to go to the nurse. And just sat back down and then came home crying. She's like, I tried to check. I'm trying to do the right thing. And my teacher wouldn't let me.
00:51:01
amandacberg
Oh, it's so sad.
00:51:01
Taylor
And it just like broke my heart. And I'm like, oh.
00:51:05
amandacberg
That's so hard.
00:51:05
Taylor
So there's a nice and angry email over here.
00:51:08
amandacberg
Yeah, yeah.
00:51:08
Taylor
no
00:51:10
amandacberg
Cue mama bear unleashed.
00:51:12
Taylor
Yeah, yes.
00:51:13
amandacberg
um
00:51:13
Taylor
And then other stuff are like if you're absent or tardy do to diabetes that that's excused. um Kids being allowed to make up tests or work if the blood sugar is out of range.
00:51:23
amandacberg
Yeah.
00:51:24
Taylor
um Some, I know older kids will um write but their blood sugar number at the top of the test and if they score poorly have the opportunity to retake the test, which is good because I don't want my child to say, oh, you can't take to the test because your blood sugar is 205, it's above 200. But if they do poorly, because their blood sugar is 350, they should have the opportunity to redo
00:51:24
Raquel
Wow.
Advocacy and Collaboration for Diabetes Management
00:51:44
Taylor
it. We have that stuff included, even though it was second grade, and we found that that was important because we had standardized testing in second grade.
00:51:44
amandacberg
Seriously.
00:51:51
Taylor
So that was helpful and we already came into play. um and We also had she's allowed to communicate with parents via text or phone at any time for diabetes related concerns. um Initially, it said like blood sugar concerns, but then we changed it to diabetes concerns because one time she's texting me that like she thought she needed an overlay for her CGM. I was like, go to the nurse and she didn't want to. and I called the nurse and said, hey, go get her or tell her to come in. She needs an overlay. She's scared. She doesn't want to tell you. and then somehow it came up like that she was texting me about something and I'm like that's still that's not her blood sugar but that's diabetes like she needs to have somebody to advocate for her and um our principal was amazing when I finally asked like who can advocate for her when she doesn't feel like she can go to anyone at school and she got passes to be able to go to the school counselor or school nurse or assistant principal or principal at any time
00:52:43
Taylor
No questions asked, so that was that was helpful for her. I don't know that she used it, but she had these she had these passes. so she Someone wasn't listening to her. She needed something. She could just give it to the substitute teacher or someone who wasn't familiar with with what she needed. and um I have a friend who has a kindergartner in Maryland and he and was low and told us in music class and heard himself beep and told the sub he needed to go to the nurse. So he did and came back and he alarmed again. He said, I have to go to the nurse. And she said, no, you just went to the nurse. And he's like, okay. And then he kept beeping. So he told her and he got home and he was like, she wouldn't let me go. And I know that this is like a really important like life thing. And like, it just broke my heart because it's like,
00:53:24
Taylor
People just don't know diabetes. And so um any way that we can empower these kids it's is good. So our school is good. It's just so many challenges.
00:53:34
amandacberg
got a little kid saying, I know it's an important life life thing, like really triggers me. That's like the biggest the biggest thing right now is I'm trying to equal parts, help Hattie like understand diabetes, in in a way that she understands like how important it is to her life without burdening a four-year-old with like you have this disease that results in life or death based on a decision you or others make like that's so heavy that's so heavy for a child and it just like kills me that a little boy went home and said I know this is about my life it's like uh it's not
00:54:21
amandacberg
It's just too much for their little, their little hearts. So that drives me nuts.
00:54:26
Taylor
Yeah.
00:54:28
amandacberg
Okay. um
00:54:29
Taylor
And
Technology's Role in Diabetes Management
00:54:30
Taylor
it's like, it's never ending advocacy for kids too.
00:54:30
amandacberg
it was Yeah. yeah
00:54:33
Taylor
and We had a time during lunch, Ruby, I still don't know why, but she got super low. She put in her carbs. She'd been dropping. I guess going into lunch, but usually she spikes from school lunch. So she put in her carbs and only got like a 0.8 unit bolus and she should have had like two units. And then she just kept dropping and didn't start eating. And it got to the point that her blood sugar was low with double arrows down. And so the nurse went out there but by the time she got out there and that we already had the iPad in the office. So they got notified like when she was dropping. And by the time the nurse got out there, she was like crying. She was disoriented. Like she didn't want to eat because she was low. um She didn't want to eat anything.
00:55:13
Taylor
and they had glucagon out and it's like she was trying to check her blood sugar and Ruby didn't want somebody to check her blood sugar because she doesn't want someone poking her and she just was a mess because she was super low and it's like I don't, that fortunately scared people but at the same time it's like you don't want your kid to get in that situation and then at the same time I was trying to, after the fact, trying to stress like if my child is awake and alert and talking, I don't care what the number is. You know that she's low. Try to get anything into her. I don't care what you get into her, anything at all. And so we made sure that we had juice boxes. I don't think we had juice boxes at school before then. But if she's awake and alert, don't give glucagon. It's going to hurt very, very bad. Only give that if she is unconscious. But just try to get anything into her. Number doesn't matter. If she's 40 and talking or 60 and talking, you're still going to try and get food into her.
00:56:07
Taylor
It's just, its it's a lot and we can't be there with them all the time as much as we want to and um a lot of people don't understand the realities and the potential bad things that do happen with diabetes if kids are not cared for.
00:56:22
amandacberg
Yeah, that is that's another thing, kind of like a delicate balance that i'm I'm preparing myself for is as I go into the meeting, the the explanation that that gets across how serious it is while also empowering these people that like they can do it. you know So like it's very, very serious and I need you to do some thing some some things for her. But it's not it's not like the scariest thing in the world if you just do these things correctly when we're asking you to.
00:56:58
amandacberg
which
00:56:58
Taylor
Yeah, if you know that she's 70, you're probably not going to get to 30 and passed out and needing glucagon like we all don't want to go there.
00:56:58
amandacberg
and
00:57:06
amandacberg
yeah Yeah, exactly. um
00:57:08
Taylor
um And then wanna, speaking about lunch stuff, one of the other big things that we advocated for was for carb counting and lunch dosing to be done in the lunch room.
00:57:15
Raquel
Thank you.
00:57:19
Taylor
This made a huge difference. um Our nursing supervisor said that this can't happen because there's too many kids in the school, there wouldn't be coverage in the health office if they were at the lunch tables, that this just could not be done. ah But our amazing nurse and health tech and actually principal said, you know, You tell us what we can and can't do, but we decide how to implement things in our school. And they decided that they would be able to do that. And um so ah without that, they were saying that Ruby had to go get her school lunch, walk all the way to the nurse's office, count her carbs, get her insulin, carry this lunch all the way back to lunch, sit with her friends, but get there late, and eat her lunch, and then carry the tray back to the nurse's office to count, she doesn't finish her food, and it's a salad bar of like 100 grams of carbs.
00:58:04
Taylor
um And so we had her dose for half of what was on her tray before lunch. And then at the end, they would count up how much she ate and then touch it up if they needed to. And it was so far, our health tech was amazing. She, this is someone who has no medical training and she learned how to carb count. She knew what our kid liked to eat. She made little index cards with what she would eat each day and the carb counts for everything. So it was really fast. She'd go out there, look at her tray and you know say, okay, that's 68 grams. You're going to put in, she'd do exactly half of 68. So she'd put in 34 before and then after go out and count everything up. And that's because Ruby's good. She knows carb counts, but she can't do double digit math and she can't divide by two and she can't estimate. So those are the things that she needed help with. And this just made
00:58:49
Taylor
a huge difference for our child. So she she wasn't missing out on tons of extra stuff. And and so that that was awesome. And then I offered to train anyone how to count carbs. I told them, I don't care who is supervising the carb counting, whatever we need to put in her order so that she can type things and take the liability away from whoever adds up the numbers. I don't care who it is. ah And I honestly thought about having one of her her best friends in fifth grade, and she's so responsible and amazing. And I thought about having her help, but it's like I shouldn't have to make this other child also take on the burden of diabetes.
00:59:23
amandacberg
No.
00:59:25
Taylor
She would do it for her friend in her heartbeat. She would love it. She would be awesome at it. But um our our health office and nurse were amazing and made it happen. um And then we had another student diagnosed with type one after Ruby, who was in kindergarten and did not speak English. And he did not have all the same things that Ruby had. He did get his insulin in the lunchroom, I think I want to say. um But it was just so enlightening to see how different it was for another child who didn't have all the advocating.
00:59:59
amandacberg
It's so wild. we have been um we We are going to need to wrap up soon with us so much information, but as like a side like tangent here, we've been trying to buy a house. Our family has been trying to buy a house for four years and so many people have been telling us, why don't you just move to a different neighborhood? Why are you so set on this neighborhood? Even agents in different like open houses and stuff because we we are committed to one neighborhood, the neighborhood that we currently rent in.
01:00:20
Taylor
And I would just like to look at how she and stuff, we are committed to working with her. And I would just like, why, why, why?
01:00:28
amandacberg
And ah they've been saying like, why, why, why? And we're like, because this neighborhood is one of the best school districts in San Diego County.
01:00:32
Taylor
I mean, like, in the past, this neighborhood is going to invest in us.
01:00:38
amandacberg
And when you are in one of the best school districts, you have higher funding.
01:00:39
Taylor
Our team is going to invest all districts to hire funding.
01:00:44
amandacberg
And the higher funding allows for higher quality nurses, more nurses, more days, like, you know, just more wiggle room.
01:00:45
Taylor
And the hiring funding allows for hiring
01:00:53
amandacberg
And we were unwilling to budge. And so. It took four years, dang it, but we finally got our house.
01:00:59
Taylor
Congratulations.
01:01:01
amandacberg
And so we're, thanks, that was not like a yay, we got a house, but more so like a, I just feel so vindicated in our decision to like stay put and be obnoxious about like how stubborn we were being.
01:01:07
Taylor
Yeah.
01:01:17
amandacberg
after hearing all of these things because a I have a good feeling so far based on the multiple conversations and in-person interactions I've had at so far two public schools because I've called around, had lots of chats and stuff. so um But wow.
01:01:33
Taylor
Well, I hope that it's better for you. I hope that what I'm doing at least is rocking the boat and making things easier for other people. Because it has not been easy being the first one going through all this. And it's been so frustrating that we're leaving. We're going to private school next year just because I'm tired of changing orders. And we're at the point where yeah Ruby does just need supervision for things. But for the school to supervise, it's so much extra paperwork.
01:01:53
amandacberg
Yeah.
01:01:56
Taylor
We just need an adult aware. And so we just need flexibility.
01:01:58
amandacberg
yeah
01:02:00
Taylor
So we're switching. um And then the last thing that I wanted to mention was just plug for if families are having trouble and they want their child to have CGM with remote follow, there's an amazing group. It's followt1ds.org and they have information and resources for families who need assistance and support. And if your school has a policy that's problematic, you can anonymously submit your policy there. And then um but I know their school district's doing a great job. So I want to celebrate all the the amazing nurses out there who are caring for our kids with type 1s. I know there's a lot of amazing people who are helping keep our kids safe and keep their day normal. And archie and the teachers we've had have been amazing. And I always tell them we're like so thankful for everything they do because we know that it's a lot. It's a lot of extra stuff for a teacher to be responsible for on top of actually teaching our kid.
01:02:54
Taylor
So we appreciate all the teachers and educators out there.
01:02:59
Raquel
I also want to encourage everyone listening. like I feel like this was so much information and for me sitting here and listening to it all, I'm just like, this sounds horrible and I've had so many flashbacks to my time when I was young that I like had forgotten about just listening to you. But once I did get a pump and I was like eight or nine and I was able to take on so much more of that responsibility on my own, like I think I'm going to go talk to my mom about this after, but I think that it was a lot easier for me and the school and everyone involved.
01:03:22
amandacberg
Thank
01:03:22
Taylor
but I think it was a lot easier for me and the school and everyone involved, and I was also at the school because of KID, but I feel like there's this period of a few years that I really want to get through if you have a little worm, and I do think of all the technology, like even though there might be more teachers in middle school and stuff, once your kid's able to take on more about care, as much as that's annoying, it also kind of nice as the child because
01:03:26
Raquel
and I was also a private school because of diabetes, but I feel like there's this this period of a few years that are really hard to get through if you have a little one.
01:03:27
amandacberg
you.
01:03:35
Raquel
and I do think with all the technology, like even though there might be more teachers in middle school and stuff, once your kid's able to take on more of that care, as much as that's annoying, it also is kind of nice as the child because you're not singled out as much and you can kind of just take care of things on your own.
01:03:47
Taylor
you're not tangled out as much, and you can kind of just take care of things on your own.
01:03:51
Raquel
um And then it's also just easier for your parents and you can text them, and you know, like make those calculations, draw the insulin if you need to change your site, all of those things.
01:03:51
Taylor
And then it's also just easier for your parents, and you can text them, you know, like, make those populations stop, and some communities decide all those things.
01:03:58
Raquel
So it seems really overwhelming, but I also hope that it's not for too long for all of you listening.
01:03:59
Taylor
So, the teams are overwhelming, but I also hope that it's not for too long for all of you listening.
01:04:04
amandacberg
Yeah, thank you for that point.
01:04:05
Taylor
Yeah, thank you for that point, because I think about that often, especially as time is showing more and more interest,
01:04:06
amandacberg
recall i I think about that often, especially as Hattie is showing more and more interest and an inclination and as she is becoming more in tune with her body because there have been quite a few times recently where I've said You're dropping. It seems like you're low. Let's catch it before I actually dip." And she'll say, the Dexcom is wrong. And I'm like, I don't think it is, honey. Like this trend is making sense. And she goes, you're wrong. Dexcom's wrong. Prick my finger. And the most recent was she was like 72 down 10.
01:04:36
Taylor
She was like 72 down 10, and I was just like, I'm gonna catch this before I leave.
01:04:40
amandacberg
And I just was like, I'm going to catch this before, you know, we hit 60s, 50s. And she really didn't want a bedtime snack. And she was like, fingerprint, I swear to you, I'm not, I'm not low.
01:04:48
Taylor
She was like, I think it's like, I swear to you, I'm not well.
01:04:52
amandacberg
And she was 95 and like the Dexcom refigured it out the next reading.
01:04:54
Taylor
And like the next one, when you figured it out, the next reading, and then she sat between then five and one side of the aside.
01:04:56
amandacberg
And then she sat between 95 and 110 the rest of the night with no, I was like, Oh my God, life, life is going to get easier eventually.
01:05:02
Raquel
One more.
01:05:06
amandacberg
Like it will, you know?
01:05:08
Taylor
See, I like overestimated Ruby, her first summer of diabetes. I was like, she was going to camp and I was like, you know, if you need something treat, we still told the counselors what to do. And she would come home, she would eat a whole 10 pack of orange glucose taps. And she'd be like, I was low. I'm like, how many times? She's like, oh, I got low a lot of times. I'm like, you are not low ever. She's like, oh, because because I poked my finger. I'm like, I looked at your meter, there was no low. So she just she was anxious about going low, so she would just like eat her glucose tabs.
01:05:34
amandacberg
Oh my gosh.
01:05:35
Taylor
And I got to the point where I was like putting in gross orange glucose tabs. She loved them. She'd eat through all of them. She didn't spike up super high. So in hindsight, I think she was correct.
01:05:44
amandacberg
Yeah.
01:05:45
Taylor
But it's funny for the schoolteacher, she's like, what if she eats too much when she's low? She wanted to get everything right. um And I'm like, you know what? As long as she's not eating 10 glucose tabs and we're doing better than what we did over the summer.
01:05:56
Taylor
So I just set the bar real low. And then at school, I always tell people, like, we expect mistakes. We make mistakes. Like, mistakes will happen. Don't be scared to make mistakes because we do them all the time, myself included, trying to give my kid 10 units instead of 10 grams of carbs.
01:05:56
amandacberg
That's so funny.
01:06:09
amandacberg
Yeah.
01:06:10
Taylor
So.
01:06:10
amandacberg
yeah
01:06:11
Taylor
Sun.
01:06:11
amandacberg
Classic. Classic. We've all been there.
01:06:13
Taylor
Yes.
01:06:14
amandacberg
Okay. Well, Taylor, this was incredibly informational and so helpful.
01:06:14
Taylor
Yeah.
01:06:19
amandacberg
I cannot wait for this episode to come out. um This will drop hopefully before most people are in school. It'll come out the end of July. um So yeah, we will be sure to link everything that was discussed in the show notes and um thank you.
01:06:28
Raquel
Thank you.
01:06:36
amandacberg
Gosh, thank you so much for your insight and your advocacy and Ruby is incredibly lucky to call you mom.
01:06:37
Raquel
yeah thank you so much
01:06:38
Taylor
yeah
01:06:43
Taylor
Thank you, happy to share all this information.
01:06:43
Raquel
yeah
01:06:45
Taylor
And there's a Dexcom guide for school too, to include um the Dexcom release with suggestions about things to think about when you're doing CGM at school stuff too. So another resource for you.
01:06:55
amandacberg
Okay. Perfect. That will also be in the show notes. All right, everybody. Should we do, let's do a um blood sugar roll call.
01:07:03
Raquel
Yeah, thank you so much.
01:07:05
amandacberg
We like to share our blood sugars at the very end of the episode and then we'll hop off.
01:07:05
Taylor
Oh.
01:07:09
Raquel
I'm
01:07:11
amandacberg
Howdy's at 178.
01:07:11
Taylor
Awesome.
01:07:15
Raquel
124.
01:07:16
amandacberg
Woo.
01:07:17
Taylor
I'm 136 and Ruby is at 90 and at diabetes camp right now.
01:07:22
amandacberg
Sweet.
01:07:22
Taylor
Day camp, having fun.
01:07:22
Raquel
So far.
01:07:24
Raquel
Love it.
01:07:24
amandacberg
Everyone's doing doing great.
01:07:24
Taylor
She's doing good.
01:07:27
amandacberg
All right, everyone.
01:07:28
Taylor
Yeah.
01:07:28
amandacberg
We will catch you on the next episode.
01:07:30
Raquel
Bye.
01:07:32
amandacberg
Bye.
01:07:33
Taylor
Bye.