Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Episode 53- T1D Mama + Teacher Talks 504 Plans
273 Plays4 months ago
In this episode, Raquel and Amanda discuss 504 planning and Medical Care Plans with Aimee. Aimee is a mom to a type 1 diabetic 6 year old AND she is a middle school teacher herself. She answers all our questions about what a 504 plan/medical care plan looks like, who creates them, and the specifics of what they should include.
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
Recommended
Transcript
Introductions and Personal Perspectives with Type One Diabetes
00:00:00
amanda
Hello and welcome to the 108 podcast. I'm Amanda and we're the type one together girls.
00:00:03
amandacberg
And I'm Raquel. We are stripping down life with type one diabetes from two people who live different versions of it every single day. Please remember type one together does not give medical advice. We're only sharing from personal experience. And I am in a contact contracted agreement with tandem right now. I have to disclose.
Balancing Teacher and Parent Roles for Children with Diabetes
00:00:21
amandacberg
Um, and today we have a very special guest, Amy, welcome to the show.
00:00:25
Aimee
Okay.
00:00:27
amanda
We're so happy to have you on.
00:00:27
amandacberg
We,
00:00:30
amanda
So Amy is a mom of a little girl who lives with type one. She's six years old and she's also a teacher. So today's episode is all about like 504 planning. So we can dive into like the teacher perspective before you had a daughter living with type one and then the mom perspective and how they've interacted. and intersected at any points. And yeah, just all these parents are going to love and greatly appreciate some of the guidance that we know you have to offer us. So.
00:01:03
Aimee
You guys are good, but I want to kind of touch a little bit on like health plans just because that place is rolling in and the connection between the health plan and the 504s.
00:01:08
amanda
Yes.
00:01:13
amanda
Yes, that is definitely what we need to dive into because I think there's so much confusion surrounding all of
00:01:13
amandacberg
Mm hmm.
Understanding 504 Plans and Health Plans
00:01:21
amanda
it.
00:01:21
amanda
Whereas like to me it kind of sort of feels like the 504 is just the umbrella legal thing that's like, hey, my kid deserves to have certain accommodations so that they get the same exact opportunities and that's like essentially all it says and then the health plan is like when my kid is dropping by greater than eight points every five minutes then this much like that is what where the details lie so um yeah but what oh my gosh I've been doing that a lot lately Rick
00:01:33
Aimee
Yeah. Yeah.
00:01:55
Aimee
Words are hard.
00:01:56
Aimee
I always say words are hard.
00:01:58
amanda
I'm also just like, it's summertime and I'm with my children a lot more than usual and my brain feels scrambled, but let's start with an intro.
Challenges of Daycare Accommodations for Diabetic Children
00:02:09
amanda
So Amy, if you want to go ahead and introduce yourself, we'd love to hear from you.
00:02:13
Aimee
Yeah, so I'm Amy. I have a six-year-old who just finished kindergarten.
00:02:17
amandacberg
I
00:02:19
Aimee
And so she was diagnosed in January of 2022.
00:02:21
amandacberg
do.
00:02:24
Aimee
And I've been teaching for 15 years. I do middle school science and that's where I've spent all of my time is in middle school. So my perspective as a teacher is a little bit different than what we've experienced this last year, going through kindergarten with type one. Yeah. I teach science, so I have kind of that science brain also, which I feel like has been helpful because it's very analytical. But it's definitely been an interesting year, to say the least.
00:02:58
amanda
I bet. No, it was your daughter in preschool before, um, Lauren?
00:03:04
Aimee
Yeah, so when she was diagnosed, she was in a full-time daycare. So, um, she would go, I would drop her, I had to be at work at seven o'clock and I work a half an hour away. Um, so I would drop her off at six 30 in the morning and she would have breakfast and all of her meals and snacks and everything. And then I would pick her up at like four 30 in the afternoon. Um, and so when she was diagnosed That was, you know, with the barrage of information that
Transitioning from Daycare to Kindergarten
00:03:32
Aimee
you get. That was probably one of the hardest things that I heard was our CDE telling us, oh, and by the way, you might you're you're because you go to a private daycare.
00:03:41
Aimee
They might say that they can't accommodate her anymore. I was like, you can't tell me I'm going to lose my daycare on top of all of this.
00:03:47
amanda
Mmhmm.
00:03:47
Aimee
But fortunately, her daycare was amazing. And we called them. pretty much right away after we got out of the hospital and said hey this is what's going on we're going to keep her home for a little while but we need to come in and talk to you about all the things and how
00:03:56
amandacberg
you
00:04:02
Aimee
how you can manage this and they were like whatever you need us to do will do and it's been amazing the whole time. We have had a little bit of a transition this year because she's in kindergarten now she still goes there for before and after school care and so that it's been a little bit different that looks a little different and then she had like new New to us teacher for that as well who had a little anxiety around the diabetes So that's been an interesting piece of it all as well Trying to like manage all the things all the time Yeah She's at daycare
00:04:36
amanda
Yeah. Yeah. Like literally all the time, every waking second. When you're saying the before and after care, is she at the public school? Oh, daycare.
00:04:50
Aimee
the same daycare that she went to before. So she had been going there for three years. And I think by the time when she was diagnosed, she had been there for almost two years. And so she goes to before and after school care there as well. And then they take her to kindergarten for us.
Daycare Health Plans and Medical Device Decisions
00:05:10
amanda
Wow.
00:05:11
Aimee
Yeah, so they bus her for us as well, which also became an interesting piece of the health plan in 504 and all that kind of stuff as well.
00:05:19
amandacberg
So before we go into like how you created all the plans and everything, what is your general management style right now with her being in school or daycare? Are you texting with the teachers or is there a nurse? How does that all work?
00:05:30
Aimee
Yeah. So, um, so when she's at daycare, they have an app that we communicate through. Um, and so they don't do anything without my permission at this point. When she was in there, um, before kindergarten, they got to the point, the people that were, her teachers there were at the point where they felt comfortable enough to like make the decisions for a lot of things.
00:05:41
amandacberg
Thank
00:05:51
Aimee
Um, right now they're not there just because they haven't seen her.
00:05:55
amandacberg
you.
00:05:56
Aimee
throughout the school year. So she's there for two days a week in the summer. So they text me for every decision and then let me know like she's on MDI. Also, we've chosen not to go with the pump and she wears the Um, so they'll just let me know all of the things that they're doing throughout the day, which can become kind of cumbersome, but it's only two days a week and it gives me that break from her and vice versa. And then, um, she gets that socialization also cause she's an only child. So, you know, getting that peace out there in the summertime.
00:06:31
amanda
Yeah. Yeah. Okay. So this is the, so this daycare specifically, she's at the same daycare, but with new teachers is what you're saying. Okay. Okay.
00:06:44
amanda
Gotcha. And she was there all through her kindergarten year too for before then
Requesting and Implementing a 504 Plan
00:06:49
amanda
she got bused to kindergarten and then she would get bused from kindergarten back to the after school.
00:06:56
amanda
Okay. Okay. Wow. That's a lot of moving pieces. I am anxious just hearing it.
00:07:03
Aimee
Like I said, the daycare has been great, and so she pretty much has a core of people that know how to help her and how to manage big chunks of things. So I'm fine with it, but it is a lot of moving pieces though, yeah.
00:07:22
amanda
Wow, my mind is like blown.
00:07:25
Aimee
Oh, it's gonna get even better.
00:07:26
amandacberg
Ha ha ha.
00:07:28
amanda
Tell us, tell us, what?
00:07:30
Aimee
So if we want to get into all the things with kindergarten, right? Because I know Amanda, you're going through this and getting ready for it. So when we registered her for kindergarten, obviously we said, you know, she has type 1 diabetes.
00:07:42
Aimee
The nurse called me last spring. and just said, we noticed that your daughter has type one. So these are kind of some of the things that are going to happen.
00:07:50
amandacberg
Yeah,
00:07:51
Aimee
And I was like, great, I'm familiar with a lot of those things because I'm a teacher.
00:07:55
amandacberg
take it away.
00:07:56
Aimee
And then I let her know that I wanted to meet in August before school started so
Evaluating Eligibility for a 504 Plan
00:08:01
Aimee
that we could kind of have a plan in place, which it's required.
00:08:04
amanda
Mm hmm.
00:08:05
Aimee
And I think most schools are this way. It's required that the health plan be in place before the student attends school, right?
00:08:09
amanda
Mm hmm.
00:08:11
Aimee
It's only just makes sense. In addition to that, though, I also wanted a 504, which is where we encountered some issues.
00:08:20
amanda
Mm hmm.
00:08:21
Aimee
And part of primary reason why I wanted to come onto your podcast was because I felt like some of the things that we were being told were not correct. And I want parents to know what their rights are, because if you don't know your, like, if we didn't know our rights, we were told no at one point, and I would have left it at that if I didn't know my rights. So I just, like, that's my big thing. So we met with the nurse in August. Um, they did this whole like kindergarten ready program. So about two weeks before school starts, the kindergartners going for like three hours a day for four days. Um, and so we had to have a plan in place before she did that. So they sent us like a very generic plan encompassed a lot of the things without, um,
00:09:07
Aimee
necessarily being specific to her because they didn't know how we managed at the time. And all of it was based off the diabetes order from her endo.
00:09:11
amanda
Mm
00:09:15
Aimee
So you're going to get that from your endocrinologist and send it into the school and they're going to use that as the base, right?
00:09:16
amanda
hmm.
00:09:24
Aimee
So I also let the nurse know in August that we were interested in a 504. So I verbalized that. looking back i should have known better put everything in an email put absolutely everything in an email so you have that trace um according to 504 law if parents request a 504 that starts at ticking time and they have to do certain things in a certain amount of time it's really challenging to find
00:09:58
Aimee
that timeline anywhere because section 504 can really go different ways depending on the school district.
00:10:04
amanda
Mm.
00:10:05
Aimee
So in the district, I work in a different district
00:10:07
amandacberg
Thank
Parental Involvement in 504 Planning
00:10:07
Aimee
than my daughter attends.
00:10:09
Aimee
And in the district that I work in, we are very clear there's a 25 day timeline school days.
00:10:10
amandacberg
you.
00:10:14
Aimee
So when a parent says, I want a 504, we have 25 days to assemble the team, which a team typically is minimum three people, which typically includes teacher, Counselor, a psych can sometimes be involved. With type one though, that's not typical for the psych to be involved. If you had something more like an ADHD diagnosis, that's where you would see a psych joining in. There's gonna be some kind of building leadership, so admin of some sort, and then parents. So at minimum, you have to have three of those, but you're typically gonna have at least four members of the team. And they,
00:10:58
Aimee
Um, the, as parents, I like the, another big thing I want it to be clear is that you are a part of the team. You have a stay in everything that happens, right? So,
Legal Rights and Approval Challenges for 504 Plans
00:11:13
Aimee
um, we struggled. to get that first initial 504 meeting to occur. And what ended up happening, because the teacher and I had, sorry, I've kind of gone off on a tangent here.
00:11:20
amanda
Yeah.
00:11:26
amandacberg
No, this is good info. Thank you.
00:11:28
Aimee
The teacher and I had a really good relationship at this point. She gave me her phone number so I could text her when things were happening and she could give her, we use jelly beans to treat lows. So she could give her jelly beans or Ritz crackers is the other thing that we use a lot. And so we were texting pretty much daily at this point, and she and I had already built a really good relationship. And so she was telling me some of the things that were happening on her end that I was unaware of. And one of those was they met, so principal, counselor and teacher met without parents being there. And so I had sent an email to admin and counselor and
00:12:06
Aimee
nurse and basically said, was this a 504 meeting? If it was, you need to make sure that we're being included in anything 504. And they basically sent a response back that said, no, that wasn't a 504 meeting, but we've decided that your old communication needs to go through this person going forward and we're not going to do this. That was my interpretation of the email.
00:12:27
Aimee
And this is where I'm saying that if I didn't know my rights, I would have been like, okay, they're saying she doesn't qualify for a 504. And the reality was she does, right? So according to Section 504 law, it says that 504 covers qualified students with disabilities who attend schools that receive federal financial assistance. And they have to qualify under a certain thing. So having a physical or mental impairment substantially limiting one or more life activities
00:12:27
amanda
What?
00:13:00
Aimee
which the definition of that includes the endocrine system. So she automatically qualifies.
00:13:05
amanda
Hmm.
00:13:05
Aimee
However, just because the student qualifies does not mean that they actually need the 504, right? So you can look at your health plan and see it covers all the things that we need where we don't feel like we need the 504 at this time. I personally, however, was like, you're gonna tell me no, I'm gonna teach you that that's not right. And so we went ahead with it and got her the 504 in the end. I know that was a lot and I'm sure you have questions.
00:13:33
amandacberg
Mm.
00:13:33
amanda
Yeah. I do, but do you, I want you to finish your thought before I have.
00:13:38
Aimee
I mean, I could go on. So I feel like my talking is going to be very all over the place.
00:13:38
amanda
No.
00:13:40
amanda
Okay.
00:13:45
Aimee
So if you have questions, it might just be a little bit better because then you can guide where I do.
00:13:48
amanda
Sure. Yes. Okay. No, this is, this is picture perfect because I feel like what we need as a community of type one parents is to be given all of the information and then for people to sift through it and only bring up in very, very clear defined explanations of like what you need to know like step one, step two, step three and like so you have the background but really everything's narrowed down so with what you've just explained as I'm going through this
00:14:13
Aimee
Yeah.
00:14:23
amanda
We, you're talking right now about the 504 plan it sort of felt like we'll get more into like the the nitty gritty of like the medical care plan because I understand that is obviously how the diabetes is actually managed minute by minute while your daughter's under the care of somebody else but 504 specifically, I totally agree that parents need to be involved and part of the team. That makes perfect sense to me. I love that you explained it the way that you did. I feel like that'll give a lot of parents who might be on the more timid side the oomph they need to say, no, I'm going to be part of these meetings.
00:14:55
Aimee
Mm hmm.
00:14:59
amanda
But my question is,
00:14:59
Aimee
Yeah.
00:15:02
amanda
What about the 504 plan specifically? Like, first of all, it's a document that you can type up, correct?
00:15:12
Aimee
It's so you don't necessarily type it up. Someone at the school will. You can give recommendations for what accommodations you would like to see in it, and then they do it and it's a legal binding document.
00:15:22
amanda
Yes.
00:15:23
Aimee
provided by the school, you sign it, they sign it, and then everybody involved in your child's education is responsible for following it.
00:15:31
amanda
Okay, so 504 plan specifically is step one, email the principal, the nurse, the teacher, whoever you have the access to at the beginning of this whole process, you email them and say, I would love for the teacher to be looped in on this, the nurse, the nursing staff, whatever, myself.
00:15:41
Aimee
Yes.
00:15:53
amanda
And then you have a meeting scheduled.
00:15:55
Aimee
You want to make sure you request a 504.
00:16:00
amanda
you request the 504 at the meeting or in the email.
00:16:04
Aimee
In the email, because then that's going to prompt the process to actually get a 504 plan set in place.
District Variations in 504 Plan Management
00:16:10
amanda
Got it. Okay, so you do all of this. I am actually planning on drafting that email relatively soon because I know the first week of August is when they have already shared with me, like when I was turning in paperwork, I had kind of had this discussion. And they're like, the first week of August, we will have you guys come in, we'll sit down for a meeting and we'll go from there. So, okay, when I'm at that meeting, then when, you know, whatever you're sitting down, you're saying this, we're going to figure out what our 504 plan looks like.
00:16:45
amanda
From there, Amy, can you explain what concrete details should be in a 504 plan for most kids with type 1 diabetes and why it's different from medical care?
00:16:53
amandacberg
you
00:17:00
Aimee
Right, so another distinction to be made is Districts have flexibility in how they do this process.
00:17:08
amanda
Okay.
00:17:09
Aimee
And so the way that my district does it is different from the way my daughter's district does it. And when we initially met with just the counselor, because she's like, I want to give you all of the information, she showed us a handbook, which I then proceeded to go home and read from cover to cover to make sure that I understood their process because it was different from what I've ever experienced. So some districts will do 504 plan and they're just kind of an umbrella of 504. It doesn't matter what the diagnosis is, it doesn't matter what the qualifier is, they'll just do 504 plans.
00:17:39
amandacberg
you
00:17:40
Aimee
And the counselors, especially in elementary school, the counselors are typically the ones that manage those.
00:17:45
amanda
Hmm.
00:17:45
Aimee
Some districts, like my daughters, will do, they have academic 504s that are managed by counselors and then they have separately medical 504 plans that are managed by nurses and that's again different from your health plan. So once you're in, they're typically, once you request the 504, then typically there's some sort of like initial meeting. And this is where you could bring in like a diagnosis. Again, a doctor's note with a diagnosis does not guarantee you anything, but it can be taken into consideration, right?
Examples of 504 Plan Accommodations
00:18:24
Aimee
So going in there with a 504, with a doctor's note that says,
00:18:30
Aimee
This student has type 1 diabetes, and I am recommending them for a 504. That doesn't guarantee it, but as the team can take that into consideration. So you'll typically have that type of meeting. We had that just with the counselor at my school district. They do it with the whole team, essentially. And that just determines whether we want to go forward with evaluation for a 504 or not.
00:18:50
amanda
Mm hmm.
00:18:56
Aimee
um and typically if you have a diagnosis a lot of places will be like yeah no problem let's go ahead and go forward with the 504 um If you're following and this is where it gets kind of dicey and this was part of the problem that we had in my daughter's district was they were trying to follow the academic plan and she didn't qualify for academic reasons. I said, if you were to test her for academic anything, she's going to be on par. She's not going to qualify. She doesn't have behavioral issues. She's not behind in academically.
00:19:28
Aimee
We need this in place for medical reasons. And a lot of the accommodations that I would have requested in a 504 were already covered in her health plan, which made that
00:19:38
amanda
Mm.
00:19:39
Aimee
We'd be a little bit more creative in the in the things that we were asking for. So, for example, one of the accommodations that she has is that during an assembly, she has to be located close to the teacher so that the teacher can hear if her alarm goes off or not rather than being like in the crowd. Right. Her nurse, the health room assistant, also has the follow-up on a phone, so they have access to that as well, but it's a lot faster if the teacher hears it, right? Versus something like she has unlimited access to the restroom, she has unlimited access to water, she can carry her phone as her medical device, that's all covered in her health plan. If it's not in the health plan, then you wanna make sure it's covered in the 504.
00:20:29
amanda
Okay, I just had like a very visceral emotional reaction when you were talking about the assembly thing.
00:20:37
Aimee
Yeah It wasn't it honestly like
00:20:38
amandacberg
Thank
00:20:39
amanda
Because I'm not thinking about that stuff yet, because I don't know.
00:20:45
Aimee
there were things that I hadn't thought about.
00:20:45
amandacberg
you.
00:20:48
Aimee
And it's again, cause I'm a teacher, I like, right. Why had I not thought about that? But again, it's, I teach at a very different level. When I get kids and I have had students in my class that have type one, they are pretty much self-managing, right? And so this is a very different ballgame when you've got a little or a kindergartner coming in or somebody who's just newly diagnosed and they're learning how to manage.
00:21:03
amanda
Yeah.
00:21:12
Aimee
It's a very different ballgame.
00:21:17
amanda
I feel like our 504 plan is going to be constantly. Like updated then because.
00:21:27
amanda
Right.
00:21:28
Aimee
So with a 504 plan, you're meeting once a year. So it can change constantly because the things that I would expect to be in a 504 plan at kindergarten are not the same things that I would expect to see in a 504 plan for a middle schooler.
00:21:42
amanda
Mhmm.
Adapting 504 Plans for Older Students
00:21:45
Aimee
So a middle schooler is going to have something more like, again, if it's not in their health plan, they might have something more like movement breaks. So if their blood sugar is high, then they can have a movement break and walk around the back of the class or get a pass to like walk the halls or something like that. Um, and that's like my daughter also, again, her teacher was amazing this year and literally had a trampoline in the back of her class. And they're like, Josie's high, go put her on the trampoline for 20 minutes, you know?
00:22:10
amandacberg
Haha
00:22:13
amanda
Oh my gosh, hilarious.
00:22:14
Aimee
Um, and then, but also like once they're older, keeping in mind that if you want it in their 504 plan it's if their blood sugar is low or their blood sugar is high they don't necessarily have to take the test right then or they can pause the test and come back to it because like my daughter is asymptomatic for both high and low currently but we don't know what that's going to look like when she's in middle school and she might just have that complete brain fog right so
00:22:37
amanda
Mhm. Mhm.
00:22:41
Aimee
It's keeping those things and it's like that safeguard for what you might need, which also was a problem that we came across because they were like, well, we don't plan. We don't make five of our plans for the future. And I'm like, right. But we're doing it for things that we know could happen, even though we haven't seen them happen yet because of this diagnosis.
00:22:58
amandacberg
Mm
Addressing Safety Concerns and Bathroom Breaks
00:23:01
amanda
Okay. I, so I don't, obviously I don't know what I don't know, but like one of my major thoughts is. Do kids in TK and kindergarten go to the bathroom by themselves?
00:23:18
Aimee
Kindergarten, yes, they do.
00:23:21
amanda
Okay. That feels very young to me.
00:23:22
amandacberg
hmm.
00:23:24
amanda
Um, not, not for help with wiping, but just for like safety reasons, right? Like.
00:23:28
Aimee
Well, it depends on the setup of your school, right?
00:23:29
amandacberg
Yeah.
00:23:31
Aimee
And all of these things are so dependent on the school and the district and all that kind of stuff. Um, for my daughter's classroom, it was a whole kindergarten wing. And so her classroom was at the end of the wing and there's a, there's a restroom in that hall.
00:23:42
amanda
Hmm. Mm-hmm.
00:23:48
Aimee
So they're not going very far. Um, the teacher that she had for kindergarten used to be out in a portable and she like, that was a big concern was safety issue. And she had walkie talkies that she would make the kids take to the restroom.
00:24:04
Aimee
So yeah.
00:24:05
amandacberg
Wow.
00:24:06
Aimee
They are going by themselves. I think depending on kind of how it is too, it's like, Oh, we're going to go here. Does anybody have to go to the bathroom? So there's like a group of them going at the same time. Um, but yeah, they are going to the restroom by themselves.
00:24:16
amanda
Yeah.
00:24:20
amandacberg
It's interesting because of littles, I feel like you kind of have to single them out so much more.
00:24:20
amanda
Okay.
00:24:24
amandacberg
But as they get older, like I was able to just take care, like the teachers just had this understanding that if I had to leave the room, go pee, go eat something, whatever, like I just would do it. And that felt a lot better because it wasn't like, I have diabetes, I need to go do this thing, you know?
00:24:38
Aimee
Right.
00:24:40
amanda
Yeah, it's very, this is very overwhelming because Hadi already voices fairly often, like, I don't want to talk about it. You know, sometimes she'll be all in and ready to discuss diabetes. And other times she's like, turn those alarms off. I do not want to eat. Don't make me stop playing. And then when I, you know, like, of course, in like a little kid way. And then when we debrief at the end of the day, she can vocalize and verbalize to me like, It is embarrassing. I don't want to be different. I hate the alarms and like I then have to prioritize for mental health. I have to choose the rest of her life to deal with this. And so it's such a balance here. And that's one of the things that I'm the most nervous for creating this going forward is like,
00:25:27
amanda
being her biggest advocate while also keeping her safe. And if the school is like, well, we just want the alarms on. It's like, well, not at the expense of my daughter's emotional mental wellbeing. Like, so I just.
00:25:40
Aimee
Right. That's a fine line to follow, too, because it's going to depend on.
Role of School Nurses in Diabetes Management
00:25:47
Aimee
on the nurse, as well as whoever, so like at my daughter's school, the nurse is shared.
00:25:52
Aimee
The nurse is not there all the time. They call it a PDA, Parent Designated Adult, which is the health room assistant who's trained in Type 1, and that's her go-to person that's there all the time.
00:26:00
amanda
you
00:26:04
Aimee
She has a phone that she uses the follow-up on, so she can see that. I know I've heard of some school districts that like don't have that and parents are being asked to provide either a iPad or a phone for that purpose. So I think it's going to depend too on what the school has already in place for the type ones or the district.
00:26:28
amanda
Okay, so this will be, yeah, this is going to be interesting because I'm going to be going from, you know, just my experience and asking questions based on what I've experienced so far, which is very little, and it might be totally different for everyone else listening. So I just want to acknowledge that.
00:26:43
Aimee
Right.
00:26:44
amanda
I established the relationship with the school nurse and just the school in general in November of 2023. So like almost an entire year before she would have started TK at this local public school.
Building Relationships with School Nurses
00:26:59
amanda
And we also have a nurse that goes between three different schools throughout the week, but then there's a health tech. I think she might be an LVN and she's there every single day.
00:27:08
Aimee
Yep.
00:27:11
amanda
And so when I went to turn in paperwork, I had already had a full-on phone conversation with the actual school nurse and had an email chain started where she looped in this LVN onto the email chain.
00:27:24
amandacberg
you
00:27:25
amanda
So when I turned in paperwork, I would ask the front desk, can I go meet the LVN? My daughter has type 1 diabetes. They allowed me to go do that. I went to go say hi to her, kind of checked out where the nurse's station was versus where my daughter's classroom is going to be. And it's a bit of a distance, so I sort of brought that up. And, you know, she's like, oh, well, she would come here for lows and she wouldn't be able to go back until she's above
00:27:51
Aimee
Yeah.
Managing Low Blood Sugar Episodes at School
00:27:51
amanda
her target.
00:27:52
amanda
And I'm like, I don't love that when she's low. Like, if she continues to walk, she's going to tank faster. And she she was like, well, I could.
00:28:01
Aimee
problem.
00:28:01
amanda
Yeah. And in that moment, she goes, oh, I could walk to her. I'm like, that is better. You know, and then I asked, like, do you guys have phones or whatever and or ipads and she was like I have my personal cell phone and I will have the follow-up on my personal cell phone so I already have that expectation going in I also have this idea that I'm gonna bring a sugar pixel for both the nurses station and Hattie's classroom
00:28:17
Aimee
Mhm. Mhm.
00:28:31
amanda
We're in a unique situation because Hattie will be the only type 1 diabetic at her elementary school, which is crazy to me.
00:28:40
amanda
But I would expect there to be others. But apparently, there's not one other.
00:28:42
Aimee
Yeah There's only one that I know of but yeah, but I mean that's also a Legal thing they can't disclose that so even if they're like they can't really tell you Yeah, Yeah, and I only know
00:28:52
amanda
Yes.
00:28:54
amanda
OK, that's true.
00:28:54
amandacberg
Hmm.
00:28:56
amanda
Yeah, yeah.
00:28:58
Aimee
go pick up her supplies at the end of the year. And she was like, Oh, that's not hers. This is for her. And I saw like the humalog pen that we don't use.
00:29:08
amanda
Yeah. Yeah. Okay. Interesting. God, that's funny.
Being the Only Type 1 Diabetic in School
00:29:13
amanda
Yeah. Okay. So yeah, that's kind of my plan is to like have all these things where I acknowledge, like when we all have the meeting and we're all trying to get on the same page, I will acknowledge to the teacher, you have so many other children. I do not expect you to completely manage this. my only ask is that, and they won't, I know they won't. Yeah, but my only ask is, can you leave this little thing somewhere in your classroom?
00:29:45
amanda
And if you happen to see that she is 48, and the health pack isn't coming into the classroom, can you handle her an applesauce?
00:29:56
Aimee
Yeah.
00:29:57
amanda
Is that
00:29:57
Aimee
So another thing, so when you were talking something that you said, I wanted to point out, so with the lows, right? And then the health room tech said that she would come.
00:30:04
amanda
Yeah.
00:30:09
Aimee
So that was something that we talked about and that's in her health plan. Um, and they originally were saying, Oh, we'll have another kindergartner bring her down. And I was like, that's not a good idea. Do not have another five-year-old bring a low diabetic five-year-old to the health room.
00:30:23
amanda
Yep.
00:30:26
Aimee
Like you need an adult do that part of the process. And I don't care if it's an IA, a pair, the nurse, I don't care who it is. It needs to be an adult. That's not safe because if something were to happen in transition from the classroom to the health room, that other five-year-old is not going to know what to do.
00:30:44
amandacberg
I actually did do that in kindergarten.
00:30:44
Aimee
That's not a
00:30:45
amandacberg
I'm having flashbacks. There would always be like, who wants to walk or come to the nurse?
00:30:50
amandacberg
And we would go together. Yeah.
00:30:52
Aimee
You're okay with that. That's their decision, right? Like that's a choice that every family needs to make. That was not a decision I was okay with.
00:31:00
Aimee
Um, so that's, yeah, like, and at this point, um, the other thing that we've done, because we had, even though she was in full day daycare and it resembled school in a lot of ways, like preschool, um,
00:31:03
amanda
Mm hmm.
Routine Adjustments for Better Diabetes Management
00:31:15
Aimee
everything was different about kindergarten. Things that I would expect to see in in the year before like none of the things were the same or she would have a really bad week and there was one week in particular where she went low every single day and they didn't catch it soon enough and then she missed like two hours of class that week. And because again a lot of schools their policy is going to be that if they are below 70 They have to be in the health room and they have to stay in the health room until they're above 70 again So they do a lot more fingerpokes than we do at home because they're checking when she gets to the health room where what her current blood sugar is knowing that there's like a delay between the blood sugar and her Dexcom and Then they're checking it again before she goes back to the classroom to ensure that she actually is above 70
00:32:08
Aimee
So, um, so what we've done, and this really made a huge difference is I set my alarms and the, um, health room person set the alarms on her phone to 90.
00:32:11
amanda
you
00:32:22
Aimee
And when she hit 90, she would get like crackers or we found these, um, like little wafers that were like six carbs at Costco and those would like slowly bring her back up. Um, rather than like the, you know, the fast acting sugar that would cause her to have go up really rapidly and then come back down. And so with that, we were able to keep her above 70 and then keep her in the classroom longer because we are comfortable with her being like 80 normal, right? That's totally fine for us. But for them, they're like, it's too close to 70 or she could go down to 72 quick and then she's losing more time from the classroom.
00:33:05
amanda
So in that scenario, would she, let's say she's at 105, 195, 90.
00:33:13
Aimee
Yeah, I would say give her two crackers.
00:33:14
amanda
Okay.
00:33:18
amanda
So she would stay in the classroom and get to eat while in the classroom.
00:33:20
Aimee
Yeah. Yes.
00:33:22
amanda
Okay. Okay.
00:33:22
Aimee
And that was another thing too. Like we had to get that written into the health plan because that written into the health plan.
00:33:28
amanda
That's the health plan. That was my next question.
00:33:32
Aimee
Um, because this is a really unfortunate piece of it is that like, there was one time, a couple of times where she went low pretty quick and I just sent a text message to the teacher and said, She needs some jelly beans and she gave her the jelly beans before the health room person was
Teacher's Role in Immediate Diabetes Care
00:33:47
Aimee
able to get down there. And they, like the teacher felt like she got scolded for giving her jelly beans. And I'm like, this is not okay. You cannot treat the teacher this way because she's doing specifically what I asked in a situation where my daughter's health is at risk.
00:33:59
amanda
Mm.
00:34:02
Aimee
You like, and they were treating the jelly beans like a medication rather than sugar. Right.
00:34:09
amandacberg
Yeah.
Parental Input and Health Plan Rigidity
00:34:09
Aimee
So the one of the things that like also with the health plan that I found challenging, I think to understand. And once somebody else broke it down for me, I was like, okay, that makes sense. It was, again, the health plan is a legal document, right? And they have to follow that to the T. So if it's not in the health plan, it's not gonna happen or it's not gonna happen the way that you want, right? So there are some things about it that I don't like. Like they take everything from, like I said, the endo from their diabetes order.
00:34:51
Aimee
And our endo made her target like 150. No, thank you. That's way too high for me.
00:34:57
amanda
Mm hmm.
00:34:58
Aimee
Right. And the nurse, I said, I would prefer that it's closer to a hundred and that gives us some wiggle room. Right. And the nurse said, I can only change it by 20%. So we had to go with 120. Like that was our compromise. Knowing that now when I tell, and I, try explaining this to the nurse multiple times at her school. All those numbers that are in the diabetes order, we tell her endo. Those numbers come from us.
00:35:22
amanda
Mhm.
00:35:23
Aimee
They don't come from the doctor, and she's like, but the doctor, what would you do if this were the situation? What would the doctor say? And I'm like, the doctor doesn't have a clue what's going on in her day-to-day life. I do. I'm the one that's making these decisions.
00:35:33
amanda
Yep.
00:35:34
Aimee
I'm the one that's determining what her carb ratio is. I'm the one that's determining what the target is that we're aiming for, not her endo.
00:35:42
amandacberg
Yeah.
00:35:44
Aimee
Her school, and I'm sure most schools have this policy or districts have this policy, is that whatever the number is, they can only change it 20 percent, whether that's the target, whether that's the carb ratio.
Legal Constraints on Health Plan Changes
00:35:57
Aimee
And if it's a change more than 20 percent, they have to contact the endo if you have an ROI. And so there was one time where she was continuously going high.
00:36:07
Aimee
And I said, we need to change her carb ratio, which then again creates a change in her health plan. And the change that I was suggesting was more than 20%. And the nurse ultimately said, I agree with you. I think that's what the change needs to be. And then went and called her endo, which pissed off my husband.
00:36:28
amanda
So is there a way, because this is something I think I'm going to ask for, just kind of explore, is is there a way to basically write into the health plan that you and your husband have full access to change carb ratios and correction factors as you see fit and then get that signed by the endo?
Parent Involvement in Health Metrics Adjustments
00:36:55
Aimee
Um, the endo doesn't actually sign the health plan. They have nothing to do with the health plan. Um, other than, Oh, really?
00:37:01
amanda
Oh, ours does.
00:37:04
Aimee
Well, they write the order.
00:37:05
amanda
Well, yeah, yeah, yeah, that's what I meant in the order.
00:37:09
Aimee
So what I would suggest is, um, whatever, like giving yourself grace and wiggle room, like give the endo the numbers that you think are going to work the best. Right. But ultimately like the endo doesn't have. anything to do with the school side of anything. They just give the order and then the nurse turns the order into a health plan.
00:37:32
amanda
Mm.
00:37:33
Aimee
And so ours does, I want to say like it's hard because her health plan is also 10 pages. It's very lengthy. And I want to say there is something in there about like parents have final say on things. However, like they're not going to break the three hour rule. They're not going to do a drastic change to her carb ratio. Like there are certain things that they are just not going to do because the reality of it too is that like the nurse is the one that's responsible.
00:38:06
Aimee
And if she does something and something happens, she could lose her license. Right.
00:38:11
amanda
Mm hmm.
00:38:11
Aimee
And so they're going to like the three hour rule is so incredibly frustrating when you're looking at the blood sugars and they're above 300 and they're refusing to give them a shot.
00:38:23
amanda
Yep.
00:38:23
Aimee
But there's nothing I can do about that when it's gonna take me an hour to get out of my classroom, make sure somebody's covering my class, and then get there.
00:38:31
amandacberg
you
00:38:33
Aimee
And by that point, the three hours are close to up, if not up, and they're gonna give her another shot.
00:38:35
amanda
Mm
00:38:38
Aimee
So there are pieces of it all that are just infuriating, and there's like nothing you can do about it.
00:38:38
amanda
hmm.
00:38:45
Aimee
You just kinda gotta go with it and build that relationship with your nurse to try and make it a little bit better.
00:38:53
amanda
Yeah, and it kind of seems a little bit like to me, at least my brain, like I start to get heated and having like, you know, some, some physical reactions over here, but then I'm like, yeah, but then I'm like,
00:39:04
Aimee
Yes, I've been there.
00:39:10
amanda
Hattie is already so advanced for her age and understanding like what is going on in her body, what is required. She is slowly showing interest in like learning how to dose herself and count carbs and all these things. So I keep telling myself, get through like four years, five years of this, and then it will become more, I don't know,
Future Expectations for Diabetes Management
00:39:34
Aimee
I think once they're, and obviously I don't have experience with this, but I think once they're more in the upper elementary, then that's when they kind of will, I'm hoping relinquish a little bit of the control. Um, and then by the time they're in middle school, I've had, I mean, in my 15 years, I've only had, I want to say three kids with type one come through my classes and I've had thousands of students, right? Cause I have 150 kids every year. Um, And I mean, one, I barely even knew she had it. The only reason I could tell was because I could see her pumped.
00:39:34
amanda
second nature.
00:40:12
Aimee
Another one, the parents were very involved, met with us before the school year, made sure that we knew how to use the glucagon and all that kind of stuff. And another one, I worked at a charter school in LA and we didn't have a nurse and mom came in every day to give her a shot at lunch and there was a snack bag for her lows in the office and that was about it. So you get a whole range of this coming through your doors every year too.
00:40:39
amanda
I'm stressed.
00:40:41
amandacberg
I'll be okay.
00:40:43
Aimee
It's going to be fine.
00:40:47
amanda
I'm looking through, I've been putting this off you guys. I had our endocrinologist in like back in February. When was this? Yeah. I was like, can you please print out whatever standard school, uh, like orders that you would typically hand to a parent to then turn into their public school.
00:41:08
amanda
And so she printed them all out and it's like electronically signed has had his name on it. So I technically could just hand this thing. Over to the school and I'm looking through it and I'm like yes this no that yes this absolutely no what the fuck like and so I have had it and I've been sitting on it and I have not gone through it yet because the idea of sitting here and like going through five of these pages of the fine tooth comb and is just knowing it's just the tip of the iceberg because then I have to ask our endo to sign all these like orders that I've just changed and then actually create a healthcare plan.
00:41:17
Aimee
Yeah.
00:41:24
Aimee
Yeah.
00:41:28
amandacberg
you.
00:41:48
amanda
It's a lot. Okay.
00:41:50
Aimee
Yeah, so the nurse will create the plan and they'll send it to you for review. Honestly, ours wasn't like, we don't start school until after Labor Day. And her IHP, her health plan was not like fully finalized. until like the end of October. And I mean, that's like all of the, that was all of the like, oh, this happened.
00:42:13
amanda
Okay.
00:42:16
Aimee
We need to change that in the plan. Oh, this happened. We need to change that in the plan. Oh, your emergency staff still says that she's on a pump. FYI, she's never been on a pump. We've asked you to change that three times. So just, here's what I'm gonna say about like the health plan.
00:42:32
amandacberg
Well.
00:42:36
Aimee
Have patience because again, the things that you are used to seeing. I don't know what it is. school changes all of that nothing was like the norm and once we figured out her norm for school then we were like okay and it and when we when i was at like my most frustrated with this whole process i got on a phone call with the district nurse so the head nurse at the district and i was like putting out all of my complaints and saying this is why i'm so frustrated and these are the things that i don't understand
00:43:12
Aimee
she broke a lot of things down that i was like okay why did nobody tell me this in august this would have been so helpful and some of the things that she said were there is something about school it doesn't go the way that you think it's going to go and it does typically take through october to like really get it all figured out and i'm hoping that now that we have that figured out from kindergarten First grade will be a whole lot easier, right?
00:43:36
amandacberg
Mm
00:43:37
Aimee
Just understanding that, like, the nurse has things that she has to follow, otherwise her job's in jeopardy, right?
00:43:42
amanda
Mmhmm.
00:43:45
Aimee
And as frustrating as it's gonna be, looking at your child's number, be 300 300-something. They can't give them a shot. You are welcome to go into the school and pull your child out and give them a shot. You can do that. That's your right as a parent.
00:44:01
amandacberg
hmm.
Iterative Process of Revising Health Plans
00:44:02
Aimee
Unfortunately, both my husband and I work far enough away that we can't do that in a timely manner. Right. Yeah. And so you're going to go through multiple iterations of a health plan until you get it figured out. And it's a lot, and it's a lot every single time you have to look at it. And we finally got to the point where like, can you just highlight the part that you changed this time? Because we don't know exactly what you changed. And if you change more than one thing, like I said, her health plan is 10 pages. I don't want to be sitting reading 10 pages every time we have to change something. And so that made a big difference once they finally started doing that as well. And then once we got that, like, I don't think she's ever really had, she does have a 504 plan.
00:44:43
Aimee
I don't think she's ever had to utilize any of the accommodations that are on it other than like obviously one is being sit next to the teacher during the assemblies. But we have it, right? And it's going to be something that we can use because if you're unaware also 504s are with people for life. So anybody with type one is protected under the 504 Protection Act.
Benefits and Protections of a 504 Plan
00:45:06
Aimee
for life. So if she goes into a job that says you can't have like, she's in retail or something and they tell her she can't have her phone on the floor, she has the right to have her phone on the floor because of her disability, right? And going into college, having access to the refrigerator in her dorm to store her insulin, or again, like we said, that high for a test taking, they can go to their professor and that doesn't count against them. So,
00:45:35
Aimee
I know there are people that choose not to have a 504 and that's absolutely you're right. There are also reasons to have it.
00:45:44
amanda
Someone mentioned to me like, um, days missed like school days miss can't count against you if yeah and like tardy like any apps or yeah tardies or whatever.
00:45:49
Aimee
Yeah. Yeah.
00:46:00
Aimee
And I think I'd have to go back and double check. So don't quote me on this. That's just kind of like already covered under 504.
00:46:04
amandacberg
Mm hmm.
00:46:08
Aimee
That's not necessarily something that needs to be like specified within a plan of some kind. We, in her health plan, like I said, she has a lot of those things kind of covered in there already. So she can't, yeah, school is not, like if she has an end to appointment or if she's got continuing symptoms of something from her diabetes. We took her to the emergency room almost exactly a year ago because her blood sugar was low and we couldn't keep anything down. If that was something that happened during the school year, that can't count against her.
00:46:45
Aimee
There's other things too. Um, which I feel like, again, depending on how the district or the school does it, like that's going to be already in the health plan. Or if it's not, that's where you get the 504. And I think a lot of the things when you just kind of look at like, I don't know, like JDRF or, um, the ADA and you look up like 504 stuff. When I've done that in the past, a lot of those to me are not necessarily 504 accommodations. Those are like rights that they should already have, one.
00:47:16
Aimee
But it's like, as a teacher, I'm looking at accommodations more as what are the things that are gonna give her the same education as everyone else, right?
00:47:27
amanda
hmm.
Extended Time on Exams Due to Diabetes
00:47:28
Aimee
And so that's where you don't really have some of the same accommodations that you might see for other things. She can get extended time. Another one that you would think about would be like when they get older is like extended time on assignments because if she's having something relating to diabetes happening outside of school and they're not able to get the assignment done for whatever reason, then they have extended time for that purpose.
00:47:39
amanda
Mm hmm.
00:47:52
Aimee
Right. But it's not like all the things. It's not like, oh, I didn't do my work and now I need extended time.
00:47:55
amanda
Right.
00:47:55
amandacberg
Yeah.
00:47:59
Aimee
It's specific to her diabetes.
00:48:02
amanda
Yeah, one thing that I'm also going to do just for anyone listening is whenever I draft this email to first request a meeting for all of us before school even starts, I am simultaneously going to ask if they already know this scheduled breakdown for the TK class so that I can have a generalized understanding of when she is sitting in a classroom and when she is playing outside and when she might be playing in a classroom. Because...
00:48:33
Aimee
Yeah, and they should work for you.
00:48:34
amanda
Yeah, I think that they will. It seemed like last year's TK class schedule was already online for people to see. And then the other thing that we're running out of time here, but I think it's important, is safety. We live in America, everyone, so our kids do shooter drills, which sucks, but it's the reality. I think that's just we don't necessarily have to get into that topic right now, but that is something that I'm also thinking about is like what needs to be in the classroom if she's ever trapped in a classroom.
00:49:10
Aimee
Yeah.
Concerns During Emergencies at School
00:49:12
amandacberg
And what alarms need to be turned off because that is always keeping and the clicking and things that can make sense.
00:49:14
Aimee
Yes.
00:49:15
amanda
Yeah.
00:49:15
Aimee
Yeah.
00:49:18
amanda
Yeah.
00:49:19
Aimee
Yeah. So and I know I know everybody does this different. We had we had we got I got them from like staples or something like that. And they were just like pencil pouches essentially. But they were a harder plastic and they had zippers rather than the like clicky clothes thing. And we, I just put emergency low snacks in all of those and gave one to each of her specialists as well. So every day she went to a different class for specialists.
00:49:46
amanda
Mm.
00:49:48
Aimee
So she had PE one day, art, STEM, music, library. They all got one as well in case something happened and she was with them when it happened. And then the classroom itself had a bigger, um,
00:50:02
Aimee
a bigger supply.
Emergency Training for Teachers
00:50:04
Aimee
And the other thing that we did that I was really thankful for, and obviously we didn't have to use, which I'm even more thankful for is we asked specifically that her teacher be trained on vaccinee.
00:50:09
amandacberg
Thank you.
00:50:14
Aimee
Um, typically only the nurse is trained or the health room tech. Um, but I'm like, if there's truly an emergency though, I don't want them having to run down here with the vaccinee. So we asked specifically that her teacher be trained on that. And she was, and so then she had one in her classroom as well.
00:50:33
amanda
That's a fantastic idea. I'm like already thinking about, okay, if she goes to different rooms for science or computer, whatever, I don't know.
00:50:39
Aimee
Yeah.
00:50:41
amanda
I guess, I'm guessing TK is not that advanced, but I don't know.
00:50:42
Aimee
Right.
00:50:45
Aimee
Right.
00:50:46
amanda
Um, but regardless, moving forward, like I'm immediately picturing I'm going to have a pouch that is very clearly labeled happy emergency supplies, and it'll have low stuff and it'll have glucagon.
00:50:53
Aimee
Yep. Mm-hmm. Yeah.
00:50:56
amandacberg
Thanks.
00:51:00
Aimee
Yeah. Well, we only, yeah, we only had the back.
00:51:01
amanda
At the very least.
00:51:04
Aimee
See me in her teacher's classroom. So we didn't have that in all of the specialists.
00:51:06
amanda
Okay.
00:51:09
Aimee
Um, that is an option getting them all in all of the meetings though, to get them trained on that is another thing.
00:51:17
Aimee
Um, I never met with, I only met with her PE teacher because her obvious for obviously reasons, right? Like for PE and our teacher wanted to make sure she understood.
00:51:17
amanda
Yeah.
00:51:27
Aimee
certain aspects of it all, which was phenomenal. And we met with her the first week of school or something like that.
00:51:35
amanda
Oh my god, I'm tired.
00:51:38
amandacberg
Well, Amy, thank you for providing specific information because I think a lot of the stuff out there is a little bit more vague and I feel like this was really helpful and will be helpful for parents.
00:51:50
amanda
Yeah, it's wildly helpful. It's like we all have to stick together as parents because regardless of if people are like in the space and know about it, like if people, you know, are teachers or CDEs or whatever, it nothing helps quite like a parent literally going through it.
00:52:05
Aimee
Mhm.
00:52:12
amanda
And that that's where like the super valuable stuff lies.
00:52:13
Aimee
Yeah.
00:52:16
Aimee
Mhm.
00:52:16
amanda
So thank you so much.
00:52:20
amandacberg
Yeah. All right.
00:52:21
amandacberg
Well.
00:52:22
amanda
Yeah, your daughter's so lucky to have you.
00:52:24
amanda
Should we do a... What's it called?
00:52:26
amandacberg
Oh, roll call. Do we want to do a big roll call?
00:52:27
amanda
Yeah.
00:52:30
amandacberg
I'm 116 right now.
00:52:32
amanda
Hattie's 96.
00:52:34
Aimee
Let's see if I can pull hers up.
00:52:38
Aimee
It's on my phone, right? Let's see. And I've been charging my watch. So see if it pulls it up.
00:52:45
amanda
Watch her be like out on the...
00:52:45
amandacberg
It'll be interesting.
00:52:46
Aimee
She's 81 and she's about to launch.
00:52:48
amanda
What is she?
00:52:50
Aimee
81.
00:52:51
amanda
Nice.
00:52:52
amandacberg
Perfect.
00:52:53
amanda
Amazing. Well, again, thank you so, so much. And we will definitely be staying in touch. And I may or may not be calling, texting, emailing you with questions in a month or two.
00:53:08
amandacberg
Thank you, Amy. We'll talk to you soon.
00:53:10
Aimee
Thanks.
00:53:11
amandacberg
Bye
00:53:12
Aimee
Bye.