"I Tell Them I'm a Cyborg" - Talking To My 15-Year-Old Son About Type 1 Diabetes

In-depth with a teenager who lives with type 1. Stacey interviews her son Benny, who was diagnosed just before he turned two. They talk about Control IQ, explaining what diabetes is to people who don't know and what he does these days for sports and other activities.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Benny answers listener questions and looks back on 13 years of T1D.

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Episode transcription:

Stacey Simms 0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:20

This is Diabetes Connections with Stacey Simms

Stacey Simms 0:26

this week in depth with a teenager who lives with type one, okay, it's my son Benny. We covered a lot of ground here answering your questions including sports, what he tell his teammates when they travel for sports and stay overnight.

Benny 0:41

I tell them that nasal spray thing - Baqsimi if I don't wake up or if I pass out, do that and then go get coach.

Stacey Simms 0:47

We talked about feeling self conscious about diabetes gear, what he remembers about being a little kid with type one and his feelings about the new Control IQ system. I think this interview was a good idea?

Tell me something good graduation news two popular diabetes books get updates and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I am so glad to have you along we aim to educate and inspire about type 1 diabetes by sharing stories of connection. If you are new Welcome, my name is Stacey Simms. I am your host, my son Benny, who you will hear this week was diagnosed right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have diabetes at all. But I have a background in broadcasting and local radio and television and that is how you get the podcast.

Before we get to Benny and oh my goodness. Like I've already said I'm hoping this was a good idea. I think he has good information to share. It's a little odd to interview your own son. But before we get to him, I have some great news of my own to share the world. First diabetes mom, my book that's been out for a couple of weeks now won an award, my publisher sent me an email. And by now I've probably shared it over social media, as you're listening to this spark publications announces that the world's worst diabetes mom has won an award of distinction as part of the 2020 communicator awards. This is part of the Academy of Interactive and visual arts. I'm really excited about this.

Of course, it's not just about the writing, but about the design of the book. And we work really carefully on that the cover alone, we went back and forth quite a bit, but then inside to make it really easy to read. And a nice experience. I mean, oh, my goodness, I was who knew so much went into things like this. I mean, when you think about it for more than a minute you get it. But Wow. If you've ever been involved in any kind of book publishing, there's a lot of steps to it. So it's very exciting to see all of our hard work rewarded with this award. So thanks for indulging me and letting me talk about it a little bit. The book has really been an incredible excuse. For me, and I hope if you've read it, you've enjoyed it. I hope if you haven't read it, you'll consider giving it a chance. You can always learn more, of course at the website Diabetes connections.com. But the book is for sale on Amazon paperback ebook, you know, Kindle and audiobook which I married.

And if you're listening to this episode as it first airs on Tuesday, the 26th of May, then tomorrow night I'm actually doing a world worse diabetes mom event with jdrf a couple of the southeast chapters got together we're doing a zoom presentation all about it, sharing our mistakes and mishaps what we learned from them and why they're just the best way to go right? You got to make all the mistakes when it comes to diabetes or parenting in general. And I'll put more information about that in the Facebook group and on social media. I'd love to have you join us.

All right, my conversation with Benny in just a moment but first Diabetes Connections is brought to you by One Drop. Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance about what they say you need and what you really need. Make it easy With One Drop, they offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop leaves with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes- connections.com and click on the One Drop logo.

My guest this week was pretty easy to book because I know his schedule. He lives in my house. He is my 15 year old son. And if you've listened to the show for a long time, you know I really try to balance how much I share about Benny's experience with type one. It's a balance of, you know not oversharing to compromise his privacy, but also sharing them To help people, he's always been a really good sport about it. And we've really weighed and measured over his entire life because he was diagnosed at 23 months, how much to talk about him. I mean, even really before that, because I was on the radio when he was born. I mean, both of my kids, I was a local TV reporter when I was pregnant with Lea, my daughter, and I was in radio, I was at WBT where I worked for a decade doing the morning show there. I think I was there for a year before I got pregnant with Benny. And so my listeners went through that process with me. You know, they saw me out at events and it was a whole big deal about, you know, how much are we going to talk about how much are we going to share, and when he was diagnosed with type one, and my listeners wanted to learn more, we had to go through it all over again.

So I err on the side of sharing less, which may strike you as bananas because I just talked to my book where we talk about all our stories and our family stuff. But I really do I mean, if you look at a lot of the mom bloggers out there, and especially the Instagram people, you know, I really don't share our day to day. I don't think that's fair to him. I'm saying all this I'm sorry for the big lead up. Because it's hard for me to interview Benny, it's hard for me to kind of push and probe for more. He's funny, as always, he gives great information, I think, of course, he is 15 years old.

A couple of quick notes to that. 15 years old, and really goofing around on the microphone. There's probably more editing than usual in this episode. So please forgive us if parts of it sound a little choppy, although I'm sure my editor john, you can smooth most of that out. But really, there were times where I really I just, we were goofing around so much, I had to cut it out. And there's a little bit at the end to give you a taste of that. And I mean, the very end of the show, I included it's not really a blooper, but it's just oh my god, what he was doing with the microphone.

Also, he does say this is the only correction I'll make. We talked about Control IQ and he says he's in range 80% of the time. I wish. It's still excellent. It's closer to 70% of the time, which is wonderful and it's certainly a lot less work. We talk about that a little bit too. But I have to correct that he is not in range 80% of the time. And the only other thing is listening back to this. I don't want anybody to misunderstand. We are mean to each other. I mean, I call him a couple of mean names. It's just our relationship. I mean, it's kind of the way we pick on each other. If you don't know us, too well, I'm just a little worried that you might think we're really mean to each other. I think you can hear that. It's all in good fun. We are so fortunate to have a great relationship. But it's been a while since I had him on the show. And you all had a bunch of questions for him. So I asked, he answered. Here's my conversation with Benny.

Stacey

So how are you holding up? I'm good. All right. Well, we got lots of questions for you. From listeners and the Facebook group, you started on Control IQ at the end of January. And we were well past three months now. Use any perspective Any comments? What do you think Vinnie? You'd

Benny 7:55

No, it's much better than it was before cuz I'm in range. Like 80% of the day?

Unknown Speaker 8:02

Yeah, it's wild. What have you noticed in terms of me?

Benny 8:06

I'm curious if you're much more now you like, Is it working? Is it working? Is it working? No, I'm not.

Stacey Simms 8:15

Any tips or tricks? You don't bolus when you're on the higher side, right? Because we found that that kind of

Benny 8:21

plummets you. Yeah. Don't do to see but in Control IQ, it won't bring you up from lows.

Stacey Simms 8:27

But you still do to receive and Control IQ

Benny 8:29

because I like juice.

Stacey Simms 8:31

Cuz you like juice? Yeah. You're an idiot. What?

Alright, so you use Control IQ, and you still take a daily shot after Seba, even though your insulin needs have gone way down. Why do you continue doing that your Seba?

Benny 8:47

I don't know.

Stacey Simms 8:48

Well, you know your mother mentioned you might want to stop and you said no, I thought you had a reason less insulin usage. You mean like in the pump, you don't use the cartridge. You should try it. You're not really using balance. Well, now we have to talk to the endo again and okay. Would you think of the telehealth visit that we did by the way? That was rough.

Benny 9:08

It was rough about it. You guys couldn't find any. Oh, yeah, we had probably his first one.

Stacey Simms 9:14

And he didn't have clarity and he didn't have to connect up even though the office said that they did. So it was a little weird, but were you okay with just talking to him that way? Well, yeah, I mean,

Benny 9:22

it's better in person. Because that our interests are pretty cool guy. Let's get to the questions

Stacey Simms 9:29

in the Facebook group, Rodney Miller. Hi, Rodney, who runs bolus and barbells he said Why am I Benny's favorite? strong man diabetic.

Benny 9:38

My favorite strong man diabetic actually for your information? Cuz I'm the best Oh, you're those favorite strong man. Oh, all right. Well, we'll see you guys in competition. Maybe I can guide when armwrestling contest. I don't know man. my biceps are massive friends for

Stacey Simms 9:52

life. 2021 showdown. Rod me and Betty. Okay. Ronnie says does he feel does Betty feel like having Such a strong advocate for a mom has provided him unique opportunities to connect to the diabetic community.

Benny 10:06

Yes, would have never met Rodney. Ernie almost got the chance to meet the rock was very close to that. Brick bassinger those people are pretty cool friends for life is a lot of fun. Justin Thomas, Jeffrey, those guys are pretty cool, too. I don't think I would have really met them without mom. You know, no one's putting us in trials. So you know, is that

Stacey Simms 10:30

isn't that funny that we can't get you into a clinical trial?

Benny 10:33

I think they it's obvious that they know we're just too cool. They don't they don't want to risk something not working on people that are just so awesome.

Stacey Simms 10:41

But we'll keep trying. All right. Shelby wanted to know, when you were younger, what did you say when other kids asked about your pump or CGM? How did you handle the curiosity of other kids

Benny 10:52

said I'm a robot. I still say I'm a robot and then I actually explained it. I remember one time a gorgeous went What's this and ripped up my pump? Wow, that was Fine. I don't really remember anything. Besides that.

Stacey Simms 11:02

I remember when you were, and this might be the same story when you were in preschool. They told me that you were all kind of like lining up to go to the bathroom or something. And the kid behind you said, Hey, what's that and started to pull on it, and you turned around, and you were like, three? And you're like, that's my diabetes. And you were very straightforward. Like, don't mess around with that. Don't touch that. That's mine. Or I guess, like, touch my diabetes. You're like, but you were always we're very lucky because you were always very straightforward about it very open about it. And you never have seemed to minded

Benny 11:36

Well, yeah, no, I don't care. Like if you don't like me, because I have diabetes go away. You suck by God, what am I gonna say? Like, Oh, no, darn.

Stacey Simms 11:45

Well, you know, you're not self conscious about it, which I think is, is wonderful and made it easier for us. But I don't know how you teach that to somebody, right? You just have always been that way.

Benny 11:55

I just kind of like I need it. Don't touch it.

Stacey Simms 11:58

So I guess the answer is you've been very straightforward about it little humor, but mostly not hiding it and saying here it is.

Benny 12:03

Sometimes I trick my friends into thinking they're giving me insulin, I disconnect my pump and I give them the pump and they still think it's connecting. They go, can I kill you? I say yes. And then I let them give me like six units, and they think that I'm gonna die. And it's really funny. Why would you tell me that? Because it's funny.

Stacey Simms 12:20

Why that is terrible that your pumps all messed up, especially with Control IQ. We think I don't

Benny 12:25

do that much anymore. Okay. So like, once, once, once every other month. This is more like a fifth grade thing. Yeah. Please tell me you don't do that anymore. I do it like once. Maybe I did it once with Jackson.

Stacey Simms 12:37

I'm gonna kill you. Okay. Let's see. Dee writes as a teen athlete. What are your best tips to manage on your own during a sports event or overnight sports trips. We have a lot of those this year.

Benny 12:49

We have but I wasn't

Stacey Simms 12:50

competing. I know which is why I wasn't which is why it was very easy for me

Benny 12:55

to let you go. I don't think it's very smart to be on your own with anything. ports, you should have at least one person with you that knows what's going on. Just you know, just in case but like, if you are alone, which is again, not smart,

Stacey Simms 13:08

she means on your own without your mom or dad, because you're on a trip is not going to be like the coach is going to be there. The team is going to be there. So why don't you talk a little bit about what you told the kids when

Benny 13:18

I first joined the team coach made us all sit down and made me tell everyone what was up. Basically all I told them was I have diabetes. It sucks. If I faint there's a thing in the in the pouch that you stick up my nose or you go to coach or the athletic trainer. Don't let me die.

Stacey Simms 13:39

Well and when you go on overnights you're not alone in the room, but there's not an adult anymore. Yeah. So what do you tell the kids that are with you?

Benny 13:48

I tell them the thing like the the nasal spray thing. So like see me if I don't wake up or if I pass out, do that and then go get coach.

Stacey Simms 13:57

What do they say? Are they like okay, yeah, they don't Nobody seems freaked out in there.

Benny 14:02

I mean, a bunch of them are scared of needles and it's fun to mess around with them but

Stacey Simms 14:07

and I do send you you know you have a kit, we make sure that there's lots of food and drinks and all that stuff. And you have your snacks and your your Welch's fruit snacks. That's one thing that made it easier in a way last year you weren't competing because you had your knee injury. So I wasn't too worried about the ups and downs this coming year, assuming all goes well and you wrestle again. I'm not exactly sure what I'm going to do for those first couple of overnights. Well, you said it like I was gonna ask you what to do. I'm not I'm either going to come near and stay nearby. Oh, no, dad,

Benny 14:43

if anyone's coming is that

Stacey Simms 14:44

that's a great idea your father can go. I don't think I would like I'm not gonna make you stay in the hotel room with me. You can still say with your friends, but especially with wrestling until we kind of figure out what your body's doing. I think it's really important to get a baseline and then get some protocols and figured out out from there, but I don't I don't intend to sit on You don't worry. I like this one. Kristen says, Is it true that Benny has the best mom ever?

Benny 15:08

No. Oh, you're off the show. No one has the best mom ever. It's literally not possible. There's like a couple billion moms. You know, Mother's Day is just passed.

Stacey Simms 15:20

But that was a missed opportunity, my friend.

Unknown Speaker 15:22

Um,

Benny 15:26

I mean, she's pretty good, but

not the best missed opportunity.

Stacey Simms 15:31

Best you ever had. Okay.

Right back to our conversation. And the next question is going to be advice. What would Benny tell his younger self? We'll get to that in just a minute. First, diabetes Connections is brought to you by Real Good Foods. And on their website. They have real reviews from real people, which makes sense because you know, this is all about real food. You feel real good about eating. And what's nice is with the record As you can see, it's not just people who eat super low carb or who eat keto. There are people who have celiac who can't eat grain. There are people who just love the way the food tastes right? There are people who talk about the airfryer, which is a great way to make so much of their food. It is delicious. We are big fans of their they can put this in the airfryer we're big fans of their new ice cream. And we really love the cauliflower crust pizzas as well, which do really well. In the airfryer find out more, just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my talk with Benny asking him your questions.

Mary says what advice would he tell a younger version of himself about being a teenager with diabetes? So I guess she means what would you say to yourself back

Benny 16:52

then? Keep doing what you're doing. You'll be fine.

Stacey Simms 16:56

I think that's an excellent advice.

Benny 16:57

Yeah, I was a pretty good child. Questions like, Oh, I wish I had depression. No, I was the best.

Stacey Simms 17:04

I think the only advice that you should give your younger self is, if you take your pump off to play football in the neighborhood. You might want to put it someplace smart like a mailbox, just because I lost it a couple of times worse,

Benny 17:17

just because I lost it a couple times. It doesn't mean you have to bring it up again. We always found it. Yeah, I'm pretty good. You're pretty good. Yeah. Your mother had to go your mother. Who is that? Oh,

Laura says does he have any good one liners when people ask about his tech? I'm a cyborg. You have so bad. And people believe me and it's really funny.

Stacey Simms 17:39

Okay, so here's an example. We'll go to someplace brand new and you make friends everywhere you go, which is

Benny 17:43

amazing. I'm kind of jealous of that. So we'll go to the beach where a smile. Yeah, we're just I just wear a smile, where it doesn't have to be real. Where I

Stacey Simms 17:52

smile. We'll go to the beach. And you will, you'll make friends but you have your shirt off your decks calm with the beginning. Put thing on, you know, either on your arm or your stomach. Do people ask about that? And they want to

Benny 18:04

tell him I'm a cyborg.

Stacey Simms 18:06

I'm so serious. And then do you kind of go into any more detail? Not if they don't ask. They just leave it at that. Most of them most of the time. They just leave it at that. That's funny. Okay, so this the next couple of questions came from a different Facebook groups. So while I know a lot of people in the podcast group, these came from a different on a group of moms with elementary school aged children, you know, saying this just as much for the listeners as I am for you. smart alec. has been he ever been bullied over having diabetes. So

Benny 18:36

let's talk about that. Then. No. Okay, unless I don't remember.

Stacey Simms 18:40

No, no. Let's talk about why you think you haven't been bullied about diabetes or picked on? I think part of that is because you were always a bigger kid. Right? So nobody was mad. No. As you listen, I've been trying to edit out that I'm saying And he keeps saying it so now we just have to leave it but but you were you were a bigger kid and you were a nice and fun kid. So nobody ever picked on you for much of anything. Right? I mean, I think the only time that we were in a quote bullying situation was when you were in like fifth grade and a little kid was so trying to pick on you. And you he was like it was like poking the bear with a stick. Luckily, you didn't you didn't take the bait. But I think one of the reasons why nobody picked on you is because nobody picked on you anyway. But also, you were so upfront about it. Yeah, that there was what are they gonna pick on you about

Benny 19:38

how your pancreas doesn't work? What if What a nerd

Unknown Speaker 19:42

but you were always there first to tell people about it and to explain and I was also like, the most popular kid in my elementary school. So

Benny 19:52

there's that too modest to ah, am I wrong?

No, I remember explaining At least there was a time where we were in the gym, and I was running around giving everybody high fives. And they were all chanting my name.

Stacey Simms 20:08

Well, that was I don't want to burst your bubble. There's fifth grade. Well, yeah, but it was also like a jdrf event.

Unknown Speaker 20:13

Oh, that was that school?

Stacey Simms 20:15

Oh, really? Yes. It was gonna be like one of the beam team. No, that that was

Benny 20:19

that was beam team at school.

Unknown Speaker 20:20

frayed right. I'm saying it was a purpose. Yeah, but I'm okay.

Stacey Simms 20:25

But that's a perfect example of how a diabetes thing made you feel great. Yes. And it's hard because I think some kids don't embrace it naturally, which I understand everybody's personality is different. I don't understand it. Well, you will when you grow up. But like, you know, your sister has a completely different personality. She's very introverted. She would not have enjoyed that. And I think she wouldn't have had the same experience you did. So as I'm talking as you're listening, I'm not talking to Betty right now as you're listening. I think it's harder for kids who are Shire, and I don't have that kind of advice so much because Benny's not that way.

Unknown Speaker 20:57

Some of the best. Well, you think you're the

Stacey Simms 20:58

best and as I said, And modest rude, but I think it's okay if your kid isn't out there saying I'm a cyborg and yeah, diabetes and get well not you never said da da da da let's rephrase, yay, beam team and jdrf and all that kind of good stuff when you were younger. I think it's okay if that doesn't happen. But I think that can also the more you keep it into yourself, the harder it can be when other people ask about it, and I think that can kind of lend itself to some difficult situations. Let's put it that way.

Benny 21:27

The lesson from all this tell everyone you have diabetes so you can't get bullied.

Stacey Simms 21:31

Well, I think it helps to be upfront about it. But you know, it's it's not my lessons. Your lessons better also be a big dude. always have a smile on your face. And I hate that you're thinking I'm talking about when you were like six or seven years I was still chunky.

Benny 21:47

I was cute though.

Stacey Simms 21:49

Hey, let's talk for a second because you're bringing it up. Let's talk about your

Benny 21:54

weight loss lost 50 pounds since the summer 50

Stacey Simms 21:56

pounds which is bananas.

Benny 22:00

Turn on, keep going.

Stacey Simms 22:01

Okay, that's fine. But can you talk about how you've done it a little bit only because as your mother, I was really worried when you start it, our dog is going crazy. I was really worried when you started because between diabetes and just body image and eating disorders and all this stuff, I was really concerned, but you seem to have done it in a really great way.

Benny 22:19

I'm gonna be so honest, I've absolutely no idea like how to describe what I did. I ate when I was hungry, but just enough, and then I drink a lot of water and Gatorade.

Stacey Simms 22:27

I can also chime in on just a little bit of what I observed. Because I was, you know, you know, I was making sure you were eating, you know, I was worried.

Benny 22:33

Yeah,

Stacey Simms 22:34

um, you seem to really just cut out empty calorie stacking. We never had a lot of junk food in the house, but you know, no crackers or you know, or things like that. And you stopped eating dessert. Not, not all the time, right. You do have dessert sometimes. But you really stopped eating when you're on the computer. Yeah. Because I think our house helped to now we didn't move until the beginning of March so you were already losing weight. The reason I bring up the new house is because In the old house, the playroom where you had your computer and stuff is right next to the kitchen. Yeah. So obviously it's really easy to snack. Yeah, but you get a lot of willpower and you stop that. But then we moved here. You have been away. The playroom is upstairs and the farthest corner of the house which is, which is great, because we have to hear you screaming. So do I know. But when you play Xbox, you're so loud and I don't really hear you until the hall has this quiet, dude, just don't scream. No, you

Benny 23:26

don't understand. Screaming it's part of the enjoyment.

Stacey Simms 23:28

But the point is, you've you've been able to have a lot of willpower. And also it's helped that you are farther away, but you eat dinner. You know, you eat breakfast, you eat food. It's really been amazing to see I would never have said you had 50 pounds to lose. So, you know, to me, you look you look really thin. Are you okay? I mean,

Benny 23:48

he's kilo. 15 pounds to lose.

Stacey Simms 23:49

Yeah, well, we're gonna talk about that off the year. With wrestling. We'll see

Benny 23:53

17 actually. All right.

Stacey Simms 23:54

The idea here is to be safe and be smart and get where you want to go without the interoceptive Okay, all right, you know, I'm right. We're gonna talk about that off the air. But, you know, the other things that comes with weight loss is you know, you're using a lot less insulin to, which has been really interesting to say, but you're doing great. Okay, and you need some new clothes.

Benny 24:13

Just an entire new wardrobe. I mean, we can't go shopping because of the quarantine stuff. So it's been wild.

Stacey Simms 24:20

I'm not taking you shopping. Okay, this is an interesting question. Elaine says, When did he start total self care, and then separately waking to CGM alarm. I don't wake up to CGM alarms.

Benny 24:32

Okay, I woke up to my blood sugar.

Stacey Simms 24:33

Oh, I was gonna say I know that. I was gonna say it wasn't true because I know you treat overnight and stuff so you feel that you wake up to your body. Yeah, I

Benny 24:39

never once woke up to an alarm. I'm a deep sleeper. When

Stacey Simms 24:45

I don't know because I'm not in your face all the time. But it seems to me that I've seen you go low and I know you treat and then you go back up. So you're waiting on wake up to alarm you're waking up because your body is alright. I've never woken up to an alarm. I will as the mom We'll let you say that I'm going to slightly disagree all

Benny 25:04

tell me about what happens if you wake up and you're filled up. And I'm sweaty. And I'm like this does not feel right. And then I stumble out of bed and if there's low stuff in my room, I take it and if not, I go downstairs and get juice and sit down there until my blood sugar goes back up.

When the dog comes, visits me, Oh, that's nice. When the dog comes as it comes visits,

Stacey Simms 25:25

that's nice when the dog comes to visit. I said I said, to answer the question here, too, we still use Dexcom. Share. We got the Dexcom when you were nine. We started share two years later when it came out. But we spent the first seven years of diabetes with no CGM.

Benny 25:41

That was scary. wasn't scary how we did it.

Stacey Simms 25:44

Well, you really you think that was scary?

Unknown Speaker 25:46

No, you don't remember it? Yeah.

Stacey Simms 25:48

How did we do it? We did it and it was a lot of blood sugar checks. We'll do a show on that sometime. Or at least a discussion of like the olden days, but I'll tell you what, I never really remember being scared. Well, that's not true. There was one time when you were low and you would not come up. That's when I was scared. But I knew you were low. Oh, well, it happened at home and then you threw up and you were fine. You just need to throw up and then retreated. And you were great. I don't know what that was all about. Well, you're gonna say,

Benny 26:15

so I had a counselor at a CCT diabetes camp. Yeah, name, Chris. And the entire week his blood sugar was just like 60 I remember that. He was not like a big dude. Like he was a tiny scrawny little dude. And he ate so much food. And his blood sugar just didn't go up.

Stacey Simms 26:35

Now. I remember he telling me about that. It's crazy. Maybe he needed to throw up

Benny 26:40

there, but it was the entire week. It's crazy. Like I had never seen a person eat so much food. And his blood sugar just didn't go up.

Stacey Simms 26:48

But it didn't go down. Right? It just

Benny 26:50

it was just 60 it was like 60 to 65 the entire week.

Stacey Simms 26:55

Well, the thing I was getting to with CGM is that I used to check You overnight when you were very little. And then as you got a little older, we would only check you overnight if we'd had a weird day, like we just knew something was going on, or you know you were very active. But I also went to work at 330 in the morning, so I would check you at 3am. When I got up, it was kind of easy. That was I wouldn't in my head. That wasn't an overnight check, because I was getting up to go to work. But obviously it was an overnight check. So when you got to CGM, and now that we have share, you might not wake up to the alarms, but I do so I mean, with Control IQ. And with our living situation with you upstairs here. I think I've treated one overnight low. And it was a compression though, right? You were laying on your CGM and I came upstairs and just enrolled you over and went from there. But to answer Elaine's question for real is he hasn't started total self care. No, no. Well, I don't think it's appropriate. You're 15 years old, and you're wonderful, you're independent. I could send you away for a week with anybody and you'd be fine. But in terms of real true self care, we're saving that minute do that it can you do that? A Ken Coleman right. But we're saving self care really here at home until your senior year of high school to give you a year at least maybe. Well, that isn't always talking about that's nice that he thinks that was that really threw dead under the bus. Yeah, well, that's what I do. I were thinking senior year, you're only a freshman. You're finishing your freshman year here. So we're we're still working on it. But I think senior year is good. And yeah, you do total self care when you go to camp Coleman, which is your regular month long camp.

Benny 28:30

The stories I could tell about the nurses. Well, some interesting ones. There's

Stacey Simms 28:35

a medical staff there but not a diabetes staff. So

Benny 28:38

there's a couple that are very good, though. Yes, that's a story for another But no, she only has to stay for two weeks.

Stacey Simms 28:43

We love Karen. Okay, so the best

Benny 28:45

she's the only Karen I like

Stacey Simms 28:46

no that's me. Like how can my best friend grant was a Karen weird name. All right. What were the most helpful accommodations for us school asks Heidi, I'm going to be very interested in what you say here. Repeat. What were the most helpful accommodate for you at school,

Benny 29:01

What was her name Miss? Oh, Miss Hyman Simon?

Stacey Simms 29:05

Yeah. Okay, so Miss Iman was absolutely. I guess the school called her a floater. She was a teaching assistant, who in kindergarten would come in and help you know, she was like the our elementary school always had a teacher and a teacher's assistant for kindergarten, but in first grade they did not have that. Your first grade teacher though, who was a take charge and take care of business lady. Oh, Harrigan, Miss Harrigan? Yeah, she was like, we are not fooling around with this. We need more help. So she got permission to have this time and float in and out and do and help you with your blood sugar checks. And then by the end of first grade, there was another kid by the beginning of second grade, there were four kids in elementary school and Miss Hyman was like the diabetes lady. And she would just help. That's so nice that you remember that?

Benny 29:51

I remember. Like I was with her all the way to like third grade.

Stacey Simms 29:55

Yeah, well, she left the school it was in

Benny 29:57

first grade to third grade.

Stacey Simms 29:58

Yeah. And then you Didn't you really didn't need any of the diabetic nurse? Oh, Julie, who has diabetes? Yeah, she was on the islet cell thing, right? Yes. She had an islet cell transplant. She's been on the show before. So as you listen, yeah, she told all about her islet cell transplant. And yeah, she's a really interesting story. So we'll, I'll link that up in the show notes. You can go back and listen to that past episode. Like Kumbaya,

Unknown Speaker 30:21

like if I Oh, yeah.

Benny 30:24

Um, do you have merge? conflict? The merge?

Stacey Simms 30:26

I don't have any marks. Yeah, one of these days I have my book. The thing that's nice about my book,

Benny 30:31

Lincoln bio,

Stacey Simms 30:33

Instagram, it's audio.

Um, but I would say for accommodations, we had a very, very light 504 plan. And our 504 plan revolved almost all about testing. Because in our school district, unlike many school districts, we actually had a written out diabetes management plan, and every child with diabetes whether you're on a pump or shots or whatever you would Have a de m MP diabetes medical management plan. And you had to fill that out. So that was kind of like your 504.

Benny 31:06

I have a question. Yes, of course, if like, let's say my 504 says I have to have my phone with me, right? Yes. And a teacher takes my phone.

Stacey Simms 31:13

Yes. What do you do? That's a great question. If you felt that your health is at immediate risk, I would excuse yourself and go to the administration office and call me. If you felt your test was at risk. I would take the test. And then upon completion, I would like does that teacher get in trouble? Like what happens? Oh, it depends on the school district. If it was a mistake, it depends on the parent. Okay, so let's say that happened to you. And you were like, I took the test anyway. Okay, and you got a 95 on the test. Okay. I would go into school. And I would say or call the school and I would say, Hey, I understand there's a misunderstanding. Let's talk about it. Let's talk through it. And I would escalate if she was like, if she was great and said, Oh, my God, I'm so sorry. I didn't realize that's one thing. She says. That's outrageous. You couldn't possibly then I escalate, right? We go to the next person, we go to the next person and this person, let's say you take the test, you get to 65. I would lobby for that score to be thrown out. And you could retake the test. We've never had to do that. Because everybody's good. Yeah, everybody's been very cooperative and accommodating. But I'm all for fighting for you. But I wouldn't start out with a fight. Yeah, I would start out with a Hey, what happened? and go from there. But I don't think it's fair to make you totally advocate for yourself.

Benny 32:29

I would hope you would. I mean, oh, yeah. No, if I knew something was wrong, I would leave the class I'd be like, ministration something's wrong.

Unknown Speaker 32:37

Right. me right.

Stacey Simms 32:38

Like if your blood sugar was high, and they wouldn't let you see the nerve. Here's a really good example. And let's not name the teacher. You used to have migraines. Oh my God, when you were growing up.

Unknown Speaker 32:50

Your teacher didn't believe you.

Benny 32:52

Even after I threw up right in front of her.

Stacey Simms 32:53

Well, I think that was that was the action I was gonna say. What do you think you did that made her listen a little throw up right in front of her threw up in the classroom. I'm right in front of her all over the books. Now, if you were not in the what was that fourth grade? Okay, so let's say you were a freshman in high school, you probably would have left a classroom and vomited in the bathroom and then gone to the nurse. But because you were in fourth grade, and you were probably really nervous to leave, or, you know, there's all these things going on. It's really unfortunate that had to happen. But, you know, it's good to talk about, but back to accommodations, because we have the diabetes medical management plan, which spells out how diabetes was treated, and also said things like, you know, you have to leave the classroom to the bathroom, you're not limited to water, how much water you can drink, all that kind of stuff that was laid out our school district, which is a huge one in the Charlotte area is wonderful about that. So our 504 was all about how he's going to take tests. And we started it in. I had a 504 plan, but we never really used it because of the testing situations. Don't ever use it. Well. Yes, you do. It didn't come into play until third grade finals, right into grade. So in third grade, we started kind of testing at different ways. Big to take tests, the beginning of grade tests. So we decided for For Benny, he wouldn't do anything differently except he's allowed to have his phone with him. He doesn't need his phone right now, really, because your pump has everything on it. But you still take it in, I assume you lay it on the desk at the front of the classroom, sometimes you'll keep it your pocket. Well, so

Benny 34:13

normal testing, like not finals and stuff. It's just in my pocket. But teachers are like, just don't cheat, but during and agree, like finals and stuff when like they like go and collect your phone. I just like, it depends on who's there. Sometimes it's just don't cheat, or sometimes I'll keep it at the front of the class. And if it buzzes, I'll tell you.

Stacey Simms 34:31

Yeah, I think for us, we're gonna find out this year about accommodations for the AC T and the SA T, and things like that. And that'll be an interesting thing to go through as well. If your child is diagnosed younger, this is really easy. Because you you figure it out as they get older. Right. And by the time they're in middle school, I think High School is when testing really starts counting. But I mean, it counts in middle school too. But by the time they're old enough to take these tests that really matter. Yeah, you're understanding what they need because some kids need a lot more money. than you do, your blood sugar doesn't skyrocket because of test stress. We have friends who they walk into their final exam and their blood sugar goes to 300. Really? Yeah. But I think right in terms of most important accommodation, I would say it's actually on the parents side. And that is being able to work with the school as a team, being able to go into those meetings and say, I want to be I want to work as a team. I want to see how this goes like let's work together, which sounds very Kumbaya and woowoo. But it really helps it helps me rather than going in and saying, I'm gonna fight for my kids rights. Like there are a lot of situations, unfortunately, where you do have to fight. But you know, going in without guns blazing is very dark principles.

Benny 35:37

Cool.

Stacey Simms 35:38

Well, your elementary school principal was he loved you.

Benny 35:41

I was his favorite. I don't know he was he didn't name favorites, but I was

Stacey Simms 35:44

he was fascinated with diabetes. He was really interesting. I mean, he wasn't he wasn't fascinated, in a weird way. But he just he admired the kids with type one. He really did. I was his favorite. Well.

Benny 35:55

He didn't say

Stacey Simms 35:56

he really admired what you guys were doing. It was interesting. School. Yes, your school counselor was great. He was a good guy. He and he did our 504 plans, we would meet with him to go to the fiber floors and he was he was very nice.

Benny 36:09

He was the guy that like if you got to go into his office, you were one of the cool kids.

Stacey Simms 36:15

We were very lucky to have a great Elementary School. Okay, and has been principal

Benny 36:19

had a lifted red Jeep. Like how much cooler does it get than that? I guess cool was an elementary school. Principal is the eye of the beholder.

Stacey Simms 36:29

has been he had burnout. If So when did he have it? How long did it last? And how did he deal with it?

Benny 36:33

Yes, yes.

Stacey Simms 36:34

Yes. Ever? Yes. So explain.

Benny 36:37

I don't want to do diabetes. Too much work.

Unknown Speaker 36:39

You get that often.

Benny 36:41

Yes. But how do you deal with it? video games?

Unknown Speaker 36:44

Do you just change the subject? Yeah.

Benny 36:46

I find that most of the time I just go Oh, well. It is what it is.

Stacey Simms 36:50

Well, I find it interesting cuz I wouldn't have said you've reached a lot of burnout.

Benny 36:53

Like I have my own opinions about that. I have been able to shoulder shrug a lot of things

Stacey Simms 36:59

like kind of compartmentalize. I don't know what that means, like, put it in the back of your brain and move on with your life. Yeah. So what helps you should play video games? Is that also like, just you're with your friends? Yeah. Do you ever talk to people from Camp or no? Well, you mentioned Justin and Jeffrey early on, is it? Like knowing that they're there? You'd have to call them?

Benny 37:18

I mean, I guess but like, I've never been the kid that's like, and life is terrible. I gotta just like, yeah, it is what it is.

Stacey Simms 37:27

All right, I have two examples that I want to bring up and see how you react. And we don't have to share these two examples. The first is when you were about 10. And you want them to take a pump break. Do you remember that at all? Yeah. What was going on? Like, can you share anything about that?

Benny 37:41

I remember talking to Michael. And like, the pens just seemed a lot easier. But then I was like, wait, there's too much math.

Stacey Simms 37:49

Well, your pump requested about three days, but that's when you started because

Benny 37:51

I was like, wait, there's too much math.

Stacey Simms 37:52

Yeah. And that's when you started giving yourself your own injections. Because you had only used us we don't use syringes. Remember before that, I don't

Benny 37:59

ya Yeah, I remember when I was like four.

Stacey Simms 38:04

And so to switch to an insulin pen seems really scary to you, but you did it, which was awesome. And it's helped us a lot since then there's too much math. Yeah. And there's also too many shots because you'd eat breakfast, then you'd get in the car and want an apple. You'd be like, what I do another shot. But then the other time, I wouldn't call it burnout. But we had I actually wrote about this in the in the book, you had a really bad night, you had a night where everything hurt, your inset hurt your Dexcom hurt. I think you had to do the same night. You're doing both and it was tough. You were really upset about it. And those things happen. I think it's important to ac