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Episode 61- Amanda's Fight To Get Her Daughter's CGM Remotely Followed
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In this episode, Amanda discusses everything that has happened since enrolling her 4 year old type 1 diabetic daughter in public school. San Diego Unified School District currently refuses to allow access to remote monitoring AND alarms in the health office. This is not the safest practice- and Amanda is DETERMINED to make policy change in San Diego Unified to reflect the most up to date and safest guidelines as outlined by the ADA. Join us for a step by step chat that details every single thing Amanda and her husband have done to escalate this issue.
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Transcript
Introduction: Amanda's Journey
00:00:23
Speaker
All right, everybody. It's a solo episode. It is Amanda here today. I am going to use this episode and this time to take you through every single step that my husband and I have had to go through to get our four-year-old Type 1 diabetic daughter the care that she needs at public school.
Understanding the UTK Program
00:00:46
Speaker
So to start us off, I'm going to explain why a four year old is in public school because a lot of people online, especially tick tock for some reason, are very up in arms that a four year old is in public school like she should still be home.
00:01:02
Speaker
And the thing is that in California we have something called UTK universal transition kindergarten, and it was California's effort to um provide ah some type of free preschool.
00:01:20
Speaker
And it's really amazing, like it's part of the the public education system, you know, they implemented classes into um elementary schools across
Preparing for School Transition
00:01:31
Speaker
the state. I know that a lot of other states have something similar to this and it's just really great because it helps kids catch up so that when they enter kindergarten they're all kind of on the same level playing field because before what was happening since preschool is so expensive and there was no access to you know like free preschools a lot of parents were stuck keeping their kids at home um and that's great but at the end of the day like
00:02:04
Speaker
even though it's our responsibility as parents to teach our kids as much as we can, most of us aren't preschool teachers. We're not sitting here like teaching the alphabet and math and whatever and so some kids were entering kindergarten really advanced and other kids were entering kindergarten way behind. So the UTK program is awesome and we do ah love it so far, all diabetes related issues aside. um She's learning so many things, she's so happy, she's thriving, and it's what's best for her and it's what works
Challenges with Medical Orders
00:02:39
Speaker
for our family. So I know most of you are super supportive of it, but just wanted to get that out there as an explanation for those of you who
00:02:47
Speaker
Seem to think we're making a poor parenting decision sending our four almost five year old to school. Anyway, so we're gonna now talk about the step by step process of what I have been doing to get prepared.
00:03:03
Speaker
So the first thing that I did was I asked our endocrinologist in the middle of last year for her to please print out the standard orders that our endo office has for students that go to school.
00:03:23
Speaker
Because there's like one set of standard orders that like basically apply to all type one diabetic children, right? And it's kind of like, in theory, if you follow these super standard set of orders, then the kids will be quote unquote safe, ultimately.
00:03:41
Speaker
But I asked for that and then I took the time to go through it um before school started and kind of crossed out anything that didn't make sense or added stuff that made more sense. so One of those things is um you know treat with 15 grams if under 70. Well, we all know that you get sent home from the hospital with that instruction and it doesn't always work like that. right so Some kids only need five grams,
00:04:10
Speaker
some kids need to be treated at 85 instead, you know, there's just like different approaches. So I was kind of like going through those kind of orders and adjusting them as I saw fit that would keep our daughter the safest.
School Zoning Changes and Care Concerns
00:04:26
Speaker
um And so I then had asked the week before school started, I had asked the endocrinology team to please update the orders based on the changes that I made. I didn't hear back from them. I sent them three messages and we called
00:04:47
Speaker
twice, I think, and didn't hear back from them until the second day of school, which was a huge bummer and a big issue. But either way, if you're on here listening, trying to figure out what's the first step, that's a great first step is to ask them for standard orders so that you can start working on more tailored orders to your child.
00:05:13
Speaker
These orders, these doctors orders, excuse me, are considered a DMMP, a Diabetes Medical Management Plan. So you will often, when you're starting school, hear people talk about the DMMP following the DMMP. That is just your doctor's orders, standard doctor's orders.
00:05:38
Speaker
So um what ended up happening was about a week and a half before the school year actually started, we were originally zoned to go to a different elementary school, you know, like a mile away from where we currently rent. But we are in escrow on a house that is in the same neighborhood we rent.
00:06:02
Speaker
but it is zoned for a different elementary school. So I had called the elementary school that we will be zoned for you know with the house that we actually own and they said oh yeah we can take your escrow paperwork and we'll get you started at our elementary school. So I only had a week and a half of um notice that we were going to that elementary school right and so when I had called them a couple times just to kind of figure out how does this work, what's different between your ah elementary school versus the one we were going to. I was talking to the front desk and I you know obviously explained that my daughter is a type one diabetic and she's only four years old and do you guys have experience with that and do you know if the school follows her CGM? Does the school follow blood sugars?
00:06:54
Speaker
And at the front desk person said, oh my gosh, yes, you know, we have tons of experience with this. And um we had a little boy who just graduated a couple of years ago. He had diabetes. He was diagnosed in kindergarten. We all help. We all um just make sure that he's okay and you know whatever and so we're kind of thinking or at least i'm thinking like oh they've really got it covered especially because uh the the same day that i talked to the front desk person for the very first time
00:07:29
Speaker
The nurse at that school emailed me and asked to have a meeting to discuss my daughter and her needs before school started. So I was like, oh my gosh, this is perfect. You guys are so on top of it. So I was incredibly blindsided when I went to that meeting, which was the Thursday before school started. So like four or five days before school.
00:07:52
Speaker
And I showed up with a Sugar Pixel because we already had purchased two Sugar Pixels. For those of you who do not know what that is, it looks like an alarm clock. You can connect your child's remote CGM data to it. Like if your child wears a Dexcom, you put in um in the Sugar Pixel app the Dexcom login and password, and then it pulls in that information. So you see your child's blood sugar, you see the trending arrow, and you see the difference in blood sugar from the last reading. So let's say it says 100, right arrow, down two. So you know that your child is nice and steady around the 100 mark. It's a brilliant a piece of the electronic device. I don't know. Okay. Anyway,
00:08:41
Speaker
So we had a couple of those because we purchased them for her private preschool that she was at the last couple of years. And I brought it in just thinking, oh, I'll be helpful. I'm not sure if they have an iPad set up or whatever, but they follow. So this shouldn't be a problem. And so bring it in and I kind of teach the school nurse a little bit about type one. She does seem to understand it and, you know, knows it.
00:09:06
Speaker
She pulls in my daughter's teacher who happened to be setting up her classroom and she, the school nurse says, do you want to, to me, mom, do you want to explain diabetes to the teacher? So then I'm, you know, teaching her the basics of diabetes and I have the box full of supplies and then I plug in the sugar pixel and and get it all set up. And the nurse at this point starts hesitating. And she's like, i I'm not sure if this is allowed. I'm like, oh, why? And she's like, ah we're not supposed to have electronics that followed follow kids' devices. And I was like, i thought I thought you do follow blood sugar. And she was like, no, we're not allowed to. And I was like,
00:09:52
Speaker
Okay, well, I'm going to set this up anyway.
Issues with Medical Care Implementation
00:09:55
Speaker
And she's like, yeah, go ahead and set it up anyway. And I'll ask our cluster nurse. And I was like, okay. And I set it up. And it's like, it's impressive. You know, you're sitting at the nurse's desk and you just look over and glance at a four year old's blood sugar.
00:10:08
Speaker
Oh, she was 130 down 10. Okay, she's good, but let's keep an eye on it because if she starts dropping by 10, 15, 20, we are going to want to give her something before she actually hits that 70 or 80 mark, right? That's what makes the most sense.
00:10:24
Speaker
Anyway, so that'll happen Thursday. And then Thursday afternoon, I get a text from that school nurse who says, Hi, I heard back from the cluster nurse, the cluster nurse oversees tons and tons of schools within our small little district that all feed into the local high school.
00:10:45
Speaker
And ah she goes, we are not allowed to have any electronics that remotely monitor children's blood sugar. With your daughter learning to listen to her own alarms and tell an adult, everything's going to be good. It's going to be a couple weeks of everyone learning, but she's going to be safe and have a great year.
00:11:06
Speaker
And I was like, can I please have the contact information of the cluster nurse? Because I'm incredibly uncomfortable with that. And she did not respond. So I did my own digging. I just started searching cluster nurse for the elementary school that we go to and um at this point I email this cluster nurse and I don't hear back from her. She instead calls me
00:11:42
Speaker
And then we have a phone conversation. I want to believe that she called because it was easier to just have a person to person heart to heart. My belief now after being, you know, in this district for four weeks is that they don't want too many paper trails.
00:12:04
Speaker
So she starts talking and she says, oh, no, well, adults will listen out for the alarms. And I'm like, how does that work? How does that work? School is loud. um Recess and PE are when she is most likely to drop significantly.
00:12:21
Speaker
If she's wearing her phone that has alarms on, how is the adult who's also in charge of 20 other four-year-olds supposed to hear that alarm and intervene? Also, why does my kid have to be the kid forced to endure alarms, alarms, alarms. Why does she have to be the weird kid? Like if you're listening to this and you don't have a type one child, imagine telling your four-year-old, you have to hold on to something that alarms all the time. And when it alarms, the whole class stops and looks at you. They have to stop what they're doing. It interrupts everything. And then you are the source of the change. Like that's not fun. That is a psychosocial
00:13:11
Speaker
impact on these children, right? So I'll get off my soapbox for a second here. Anyway, so this was all happening kind of right as school was starting. And I felt really blindsided by this. And I immediately started searching for more than just the cluster nurse, who's the director of nursing, who is the doctor, whoever sees the district, like who can I get in touch with?
00:13:37
Speaker
and sent an email to the Director of Nursing for this district and said, just so you're aware, the DOJ, the Department of Justice, has found that remotely monitoring children at school is considered a reasonable accommodation. We want the sugar pixel with the alarms on in the health office as backup.
00:14:02
Speaker
and she flat out said we have no legal obligation to put alarms in the health office and our policy clearly states that remote CGM monitoring will not be in the nurse's office. Their claim is that if the adults who are with the child assume that the nursing staff has heard the alarm, then that creates a false sense of security and more mistakes are made. Oh, I'm so sorry. The teacher who is teaching who is not trained in healthcare care is expecting that the nurse who is trained in healthcare is the one to respond to the health issue. Good. Okay. Make that make sense.
00:14:51
Speaker
Alrighty, so moving on, this school in particular then said we need your doctor's orders and because your doctor is not getting back to you with the more specific orders that you want, we just have to follow the standard ones. so So they started the first couple days following the standard orders. First day, first recess, they missed a low because no one heard the alarm and my kid got down to the low 60s. They only knew about it because I was able to remotely monitor and call the school nurse.
00:15:26
Speaker
the school nurse would have known about it if she had access to my daughter's numbers and alarms on in her office or on an iPad that traveled with her, right? No. Okay, so this school in particular wants to have an ISHP. That stands for an Individualized Student Health Plan. What the Individualized Student Health Plan is, is essentially they take the doctor's orders, the DMMP,
00:16:01
Speaker
And the school nurse writes up an individualized student health plan. The school is claiming that this is a legally binding document. I'm not positive it is. I have heard from so many sources that it's really not. It doesn't hold much weight in terms of legality.
00:16:24
Speaker
The school nurse explained it as this is supposed to be a very simple explanation style document that we can hand to various teachers and staff members so that they understand type 1 diabetes and they understand what the doctor's orders are calling for.
00:16:45
Speaker
That's fine, that's great. It took three weeks for the ISHP to even be drafted and we refused to sign it because it does not actually follow our doctor's orders. Let me explain this.
00:17:06
Speaker
Our doctor after my child's second or third day of school finally got back to us and said, I'm so sorry, we have been swamped. Every single change that you are asking for is granted. Here is the addendum orders. So she sent orders that fixed the parts of the standard orders, right? And this addendum to my daughter's medical orders are now the orders that should be followed. They looked like if under 80 treat with five grams, if under 75 treat with 10 grams or something like that, you know, it's stuff like that.
00:17:45
Speaker
These orders also stated remote monitoring of this child's CGM is medically necessary for her health and safety. The alarms should not be put on this child to respond to. It's not developmentally appropriate and it also said refer to the Americans with disability with sorry the American Diabetes Association associations Safe at School guidance dated June 2024 for further information. The addendum orders also said, you know, give X amount of
00:18:26
Speaker
carbs or treat high blood sugar with this amount of insulin, unless otherwise instructed by parents. Parents can call and request various changes be made or something like that.
00:18:41
Speaker
I did not know that for three full weeks, these addendum orders, not a single one of them was being followed. Because per the cluster nurse, the any part of the order that stated that parents can make changes, parents can ask for something else,
00:19:03
Speaker
they legally cannot take that order. And so it made the entire addendum null and void. That means that for three full weeks when I thought they were treating, if she was under 80, they weren't because that entire order was null and void. So they were just falling back onto the standard orders and the standard orders state treat under 70. So my daughter has had a low blood sugar to the 50s or 60s at least every other day since school started.
Securing a 504 Plan
00:19:38
Speaker
This blood sugar could have been prevented, which is my request. Let's work on preventative therapy, not reactive therapy for diabetes management here.
00:19:53
Speaker
So the ISHP is again in the works. We have now completed our fourth week of school. It is in the works because the cluster nurse week three ended up having a meeting with us and saying, I hear that you're really uncomfortable. I hear that you don't like this stuff. We can't follow the addendum orders. Let's find different orders that we can follow that like fit into our policy.
00:20:23
Speaker
I'm sort of stuck here you know like if I refuse this then the issue is they just keep following the standard orders and my kid has a subpar experience at school and an unsafe experience at school quite frankly and so I'm saying okay let's try and figure this out and she's telling me you go ahead and think of orders that make sense to you. So if your child is under 120 and playing, may treat with three to 20 grams, like give us a wide range. So then if you do call and say, I think my daughter needs 15 grams, we can do that. It's not technically taking your order. It's following the doctor's order, right? So that all feels like a really big headache to me, but
00:21:12
Speaker
whatever, that is the ISHP for now. It is still not complete and I don't really even know what exactly they're following. The next thing, I started asking for the 504 plan the Friday before school started.
00:21:36
Speaker
that's' Scratch that. The very first time I was talking to the front desk person, I said, when do we create our 504 plan? And she said, you wait until so school starts because the school counselor is in charge of that and she doesn't start work until the very first day of school. That I am now learning is should be illegal. Apparently it's not, but it is a load of crap.
00:22:06
Speaker
The Friday before school started, it was like a welcome, come meet your teacher kind of day. And so I went, ended up meeting the school counselor and verbalized, hey, just so you know, I'm going to be emailing you on Monday because apparently that's your first day back ah to set up the 504 meeting. And she goes, no.
00:22:28
Speaker
I don't you don't need a 504. 504 is for educational ah safeties and measurements and you know your daughter's four and in TK I've never heard of that and they said we're absolutely entitled to a 504 and she goes well we need school to start and a couple weeks to go by to then be able to evaluate whether or not certain protections are actually needed and I said They are needed. I know they are needed and she goes like what and I'm like like simple stuff like bathroom access and Water access and a lot more and she goes. Oh, well that stuff will all be in the ISHP I'm sorry the ISHP that is still not signed by the parents because we do not Believe that that ISHP adequately cares for our child good
00:23:17
Speaker
A 504 plan, for those of you who do not know, is a legally binding contract. It is afforded to Americans with disabilities under the Americans with Disabilities Act. You technically have to, quote unquote, qualify for a 504 plan.
00:23:33
Speaker
For simplistic purposes, just so everyone's aware, if you have type 1 diabetes, you automatically qualify for a 504 plan because it inhibits the endocrine system and it affects learning and how your body feels and different functions and all of these things. so like The four boxes that you have to be checked off to be like, yes, the student,
00:24:02
Speaker
is approved for a 504 plan, diabetes in general immediately checks those four boxes. So if your schools are pushing back on the 504 plan, they are wrong. It should just be immediately set up as a meeting, but instead it took us five times of asking twice in person, three times via email for a date.
00:24:27
Speaker
after the fifth time we were eventually given a date for this week, just yesterday, September 5th, school started August 22nd. And the meeting initially started out as a discussion about her eligibility. So 30 minutes were spent going through the check boxes of why a 504 is technically approved for this four-year-old type 1 diabetic. It was the biggest waste of time. And then we started getting into what we actually wanted in the plan.
00:25:06
Speaker
What my husband and I did is we created our own list of requests. i will be making a masterclass that will be free to this community. And that masterclass is gonna be even more detailed in the exact steps that I took. I won't spend as much time talking about like the headaches we encountered, but the actual steps that need to be taken. And it will include links to any and every resource I could possibly find and have for you, including a list of our 504 requests. Some of them I'll list out for you now.
00:25:44
Speaker
um One thing is that the student will not walk to the nurse's office when experiencing a low blood sugar that if she is experiencing a low blood sugar somebody will go to her to treat it. I did say if it is one of those low blood sugars that is taking a long time and the nursing staff has assessed that they have given her her initial treatment but they need to watch her, monitor her for a long time if it's a tough flow.
00:26:17
Speaker
I do understand, like i'm I'm willing to work with the school a little bit. I do understand obviously that the there's only one school nurse and sometimes it's a lot of times actually it's just the health tech and she needs to get back to the actual nursing office. In that case, bring Hattie back with you if it is appropriate at that time, right? So that's one of the things. um And then another thing is like,
00:26:47
Speaker
My daughter will always be accompanied to the nurse's office. Day four, she said, I walked to the nurse's office by myself, and that was to go get dosed. When she's a little older, that's fine. Day four, at an elementary school with 500 students for a four-year-old to walk literally full across campus because her classroom is actually the furthest classroom from the nurse's office on campus by herself. That's crazy. That is insane to me. Whatever. So that's one of the things, unlimited access to bathroom, water, cell phone.
00:27:24
Speaker
She won't be responsible for bringing her pump phone with carb counts to the nurse's office before school starts. That's one of the things they wanted was for me to drop her off at the kindergarten gate. She walks through the entire elementary school when all 500 students are arriving at the same time, drops it off in the nurse's office by herself and then gets back to line in a matter of two minutes. It's just unrealistic and it's putting adult responsibility onto a four-year-old.
00:27:53
Speaker
um I put in there like the teacher is allowed to give the snack. So the health office can radio and the teacher can give the snack. I am okay with that if the teacher is okay with that. um And then some other stuff like she won't spend extra time in the nurse's office if it's not needed.
00:28:15
Speaker
The nursing staff needs to have her ah schedule immediately available at all times. written And then an unfortunate thing is should an emergency occur like a yeah lockdown for an active shooter.
00:28:31
Speaker
that all alarms go off, that the adult holds on to Hattie's Dexcom phone, that the they give her 10 to 15 grams of carbs just to prevent any potential lows. I'd rather her be high during a couple hours of a lockdown.
00:28:51
Speaker
And um that the the adult holding the phone routinely checks the blood sugar by visually looking at it, not relying on the alarms that was given to us. So those are just some examples. We went through all of these and we were met with so much pushback. It wasn't even and funny. We were met with pushback on stuff like well unlimited access to the bathrooms in the ISHP and I said I want it in the 504 I want it legally protected and they would give me pushback and then eventually they would resign it was a wild meeting so that's the 504 plan some people suggested that we get an in of ah individualized education plan an IEP
00:29:37
Speaker
This, my understanding is that this holds even more legal weight and then a 504 plan and it focuses way more on educational needs. I didn't even broach this subject because they are clearly not willing to work with us and She is for it's not about like test taking and writing essays and stuff yet. So I just didn't push that. But for those of you with older kids, you might want to look into what an IEP is and the qualifications and whether or not your child is eligible for that.
00:30:17
Speaker
So as all of this is happening, these are the things that my husband and I have done to kind of flag the attention of higher ups and to get a process going to hopefully change San Diego Unified's policies.
Advocacy and Policy Challenges
00:30:36
Speaker
The first thing we did is we filed a complaint with the Department of Justice. I did this by going on to FollowT1D's website. FollowT1D's is this amazing organization that is working their butt off to change legislation across the country so that all public schools are legally obligated to remotely monitor children's blood sugars.
00:31:03
Speaker
um It's a slow but steady process. It's tough work, but their website will be linked down below. So if you also are battling this and you want to file a DOJ complaint, go to their website. They have a tab that says like file a d DOJ complaint or something like that. And the DOJ complaint, I wish it was easier and online because that's how the world works, but it um you They basically the follow T1D's page basically has kind of like an outline and what's expected is that you type up your complaint and you make your case and then you print it out and literally mail it to Washington DC. So we did that.
00:31:52
Speaker
using the template that they provided, more information is better. So even if you don't have the legalese, if you feel like, oh, I don't know what I'm doing, do it anyway and put as much information as possible. And then um the other thing we did is we mailed a copy to our local Southern California DOJ district.
00:32:18
Speaker
Um, you will not, you shouldn't expect confirmation of receipt. They just kind of take it and do what they will with it, I guess. So we did that. I also filed a complaint with the office of civil rights. So the way I did this being in San Diego is I typed in Google Office of Civil Rights complaint, San Diego, California. And California's website came up and I just clicked around until I saw, like, file a complaint with the Office of Civil Rights if you feel like an injustice has been done. And I kind of read through everything to make sure, like, this is the right route and it absolutely is.
00:33:05
Speaker
And that was easy because that's all online. You type in the offender, in this case, the school district, and um kind of explain exactly what happened. And I did. And then I got an email the next day from the person who receives all of those complaints saying,
00:33:25
Speaker
I got all this. Do you have any other evidence? And I have been saving every single email coordination, screenshotting any text messages. um And also, you know,
00:33:40
Speaker
looking up the cases that have been ah closed and through follow-to-UNDs like linked that over so they could see that the the Department of Justice did say that the um that following remotely monitoring students is considered a reasonable accommodation under the Americans with Disabilities Act.
00:34:05
Speaker
Um, and so that was a couple of weeks ago. Haven't heard anything since then, but you know, they received complaints, I'm sure every single day. The other thing that I did is I emailed our district superintendent. um I have not heard back, but we are also in a weird place where she's currently the acting superintendent because just a few days ago or maybe last week, um the actual superintendent stepped down because of allegations that were found to be true of
00:34:39
Speaker
workplace sexual harassment, so that's great. um But I am hoping this new acting superintendent takes things pretty seriously considering there's a microscope on this district right now.
00:34:55
Speaker
I also um scheduled a meeting with the board president of our subdistricts. So San Diego Unified is a big giant district and there's multiple subdistricts within the district. We are in a certain subdistrict and I um made an online appointment to have a Zoom call with that woman and that'll be next week.
00:35:18
Speaker
Now, the other thing we're doing is we will be attending the ah board meetings for the district they happen every second and fourth Tuesday, and at 5pm is when it's open for public comment.
00:35:35
Speaker
I will be typing something out because I am not a great public speaker. um I get really nervous. My voice shakes. I cry. The whole thing when people are looking at me and obviously this is just such a heightened state. So that's the that's the next thing I'm doing. We also reached out to Dexcom because Dexcom is a San Diego based company and we shared our story with four or five people from their legal team and like people who work with government affairs and things like that and they took it very seriously and they immediately kind of brought up like
00:36:16
Speaker
Oh, it seems like legislation might need to be introduced here. And so they are currently working on the back end right now, um trying to figure out who, who is best to talk to next and that they will be keeping us like our family in their back pocket as like a family's experience. It was also helpful because the main guy who was leading the charge was like all I can think about is my four-year-old daughter who does not have diabetes but if she did I would be losing my mind. So it's just helpful when like people do dip into humanity a little bit.
00:36:53
Speaker
um So that is everything that we've done. I also actually did reach out to the American Diabetes Association and asked for um an advocate to join us at our 504 meeting. They took down our story. I spoke with someone on the phone. She sent me confirmation that you know the story was in their system or whatever, but we never heard anything back.
00:37:19
Speaker
I also contacted JDRF and it's it's all just a very slow moving process. I'm sorry, not JDRF, breakthrough diabetes.
00:37:30
Speaker
um Breakthrough T1D, formerly JDRF. So it's just everything's slow moving because it's tough, right? Like there's You can't change policy overnight. I would love to type up a new policy send it to the board members of San Diego unified and have them sign off on it and then by Monday morning, my daughter is being remotely monitored as she should be.
00:37:56
Speaker
um But no, that's not how it works. So I'm just going to keep up the fight. I'm also reaching out to news outlets um little by little and sharing my story, kind of calling around. The other thing I've done for those of you who follow on Instagram is I have asked um on stories for anyone who is in a district that does follow or remotely monitor uh cgms to drop the district name into the question box and so far i've got 63 but so many more came in overnight so i'm i'm guessing there's more like 100 i will have that with me as well at the board meeting to just say like because the the director of nursing in our district tried to tell me at our 504 meeting that no schools do this hardly any maybe a few here and there
00:38:49
Speaker
and i looked her dead in the eye and I said, you're wrong. And I also like, I do want to say like, I am not shying away from the the inhumanity is outrageous. Like most of these people I'm dealing with have children. And so I'm trying to be like, tap in for a second.
00:39:10
Speaker
imagine this is your four-year-old, four. This is not an outrageous thing that I'm asking. And they kind of just go quiet a little bit.
Critique and Solutions for Blood Sugar Monitoring
00:39:22
Speaker
And this is the worst thing in the world, but it's like it sometimes it takes your child being diagnosed to truly understand the gravity and the severity and to stop taking it so lightly. The other thing that was said to me was I've been doing this 26 years and it's been a-okay all this time basically and I straight up looked at her and said that is my least favorite argument.
00:39:49
Speaker
because that's not an argument. 26 years ago, so much management of so many different disease processes was completely different. Just because it worked at the time doesn't mean it's what's best practice now. My whole thing here is if you are a nurse or a doctor or somebody in charge of public education for children, you have taken an oath to do what is the most right for these children, for your patients. And to have the awareness, to have the understanding that there is an option that keeps them safer and that offers preventative care rather than reactive care.
00:40:39
Speaker
And to turn an eye to that, something is wrong with you as a human. So that's my other soapbox, I guess. I am currently watching my daughter's blood sugar and ah she got down to 61.
00:40:58
Speaker
What is happening right now is they said yes to the sugar pixel in the classroom and I think they want me to be so grateful for that, which I am absolutely not grateful for because the sugar pixel is so loud it sounds like this.
00:41:14
Speaker
ah ah ah ah So it disrupts the entire class. It is so loud, it shines a light on the fact that she's different. Something is wrong with her, quote unquote, right?
00:41:29
Speaker
And then it's like the alarm goes off and the teacher says my child's name and she either has to go to the nurse or someone comes to her. And that is not best practice. That is not looking out for the child. That is not offering a child the same educational experience as his or her peers.
00:41:54
Speaker
So in my opinion, that's going against ADA policy. So whatever, but this is what we have to do right now, right? Like I've got to keep her safe. The sugar pixel is currently set to alarm if my daughter goes under 80.
00:42:13
Speaker
This is a problem for me because she's under 80 a lot, but she is not always under 80 and in need of a low snack, but it is the only way I can think of to attempt to get them to start paying attention to numbers and to the fact that she might be dropping and intervene before she's actually under 70.
00:42:41
Speaker
The other thing is her phone is around her waist. The school is saying that when she's out of the classroom that they have her take her phone off from around her waist and hand it to whatever adult. So hand it to the random parent who happens to be monitoring recess that day.
00:43:04
Speaker
And that person, when they hear the alarm on her phone, then radios the nurse's office and says, this phone is alarming. And then the nurse gets up and walks over to my daughter and gives her something. But for the most part, I think has been taking her back to the nurse's office. So now she's missing out on recess and playtime. She's just in the nurse's office.
00:43:33
Speaker
Tell me how that makes sense. How does that make sense instead of the nurse having an iPad with access to my daughter's blood sugar and the other type 1 diabetic child who's at the school, his blood sugar, and setting the alarm on that iPad for let's say 100?
00:43:51
Speaker
So I'm not asking for the nurse or the health tech to stare at the iPad the entire day, but let's say she sets it to 100. She hears a beep and she goes, Oh, I wonder which one of them is under a hundred. Oh, it looks like this child, the four year old is under a hundred. Okay. But she's 93.
00:44:12
Speaker
I'm going to start paying attention. Oh, her next one was 78. I'm definitely going to radio to the teacher right now and say, Hey, drop in quickly. Can you please give a bag of gummies or a juice box or whatever else she wants and I'll continue to monitor from here.
00:44:28
Speaker
Like, that makes so much more sense to me than adult after adult handing off a phone, having no idea what the actual number is, what the trend is, listening to the alarm, then calling the nurse's office, then the nurse coming out to check the number at that point on the phone, but not check the rate of change. No, no, no.
Reflections and Call for Support
00:44:52
Speaker
just check the number and if it's under 70 treat but if it's not do nothing like what is happening make it all make sense it's not making sense anyway i hope this was helpful i'm sorry i just talked for 45 minutes about everything but Essentially, that is everything we have done and that is the stuff that we will be doing moving forward. If any of you listening are in San Diego Unified, please reach out to us. I would love to form a group of parents who are unsatisfied with San Diego Unified's policies.
00:45:31
Speaker
so um Thank you all so much. And I hope very few of you are experiencing what I am. But unfortunately, we know that's not the reality. And for those of you who have schools that remotely monitor, I am so incredibly happy for you. I really am. They are doing the right thing. um And kudos to kudos to them. All right. Thanks, guys. We will talk to you later.
00:45:59
Speaker
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