#1349 Cross That Bridge
Scott Benner
Becky is the mom of a 21 year old type 1 who also has high functioning autism.
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Scott Benner 0:00
We're back together, friends. This is the next episode of The juicebox podcast.
Becky is 53 she's the mother of a 21 year old, type one, who also has high functioning autism. Her daughter was diagnosed in 2023 the education they got at the hospital wasn't great, and the way they found the podcast is a story in and of itself. Nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget, if you're a US resident who has type one or is the caregiver of someone with type one, visit T 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward, it will cost you nothing to help to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40 percent@cozyearth.com if you're looking for community around type one diabetes, check out the juicebox podcast, private, Facebook group juicebox podcast, type one diabetes.
This episode of The juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom g7 dexcom.com/juicebox gets started today using this link. The episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touched by type one.org
Becky 2:05
Hi. My name's Becky, and I have a 21 year old daughter named Kara, who was diagnosed July 5 of 2023
Scott Benner 2:14
July 5 2023 Oh, my goodness, just about a year ago. Yeah, almost a year okay, and she's 21 now she's 21 now she was 20 at the time. So I'm not going to stretch this part out too long. You don't usually get a mom on to talk about their adult child, but there's a reason for this, right?
Becky 2:32
Yes. Okay, so my daughter is on the autism spectrum. She's high functioning, yeah, when you say adult, she's definitely adult by age, but not quite there where she can really be by herself at this point. Still needs a lot of guidance,
Scott Benner 2:47
okay? And what made you want to come on the podcast? I just kind
Becky 2:51
of wanted to talk a little bit about, you know, when you're diagnosed as an adult, even if you don't have, you know, any kind of other issue or disability. It's not really always, you know, they treat you like an adult at 18, but at 18 or 20, or however old you are, you still need to learn about this disease. I mean, it's or this diabetes. It's very confusing. And I think if you are not mentally or mature enough, I think that you need a lot of support, and you don't get that in the hospital. And we found that out being diagnosed as an adult, even with her being on the spectrum, it was, it was a nightmare, really.
Scott Benner 3:34
I think that one of the reasons that people like the podcast or the way I talk about diabetes is because the way I talk about it is set up so that Arden can understand it without understanding it correct. Because she's like, she's 20, and Arden's a bright, thoughtful person, etc. But if you really pin her down about diabetes, she's like, I don't know, like, you know, and she manages a low six, A, 1c, at college by herself. That's amazing, yeah, and it's all just because I don't know, I've t shirt slogan her life, the way I've done the podcast. I'm like, you know, like, you know, pre bolus, and don't get high, you know. Like, well, how do I not get high? I'm like, just don't get high. Like, bolus, see, you don't get high. And if you get high, bring it back down real quick, and, and, but don't get too low. So you have to stop it before it gets back down. Like it's not there's nothing technical about it. I think that works really well for her. And then somehow it translates well out to people that I I'm speaking to that can't hear me, but I take your point, like they just sort of blurt the stuff out to you, and then that's it. They're like, Well, we said it now, so go ahead, right?
Becky 4:41
Yeah. And if you're like my daughter, you know, she's very black and white. She doesn't read between the lines on anything. And you know, she takes everything. What you said is what is to be done, right? I mean, I guess in one on one hand, that's a good thing, because she likes she's a rule follower. So, you know, she will follow. The rules, but yeah, she needs to know step by step. It's not like, Oh, do this or here, don't do that. It's, she's more rigid, I guess she should say,
Scott Benner 5:09
So, once you've got it set up, she's okay, yeah,
Becky 5:13
once you've got it set up, she's okay. Like, she's doing really well. Now she she counts her carbs and she well, okay, for first, let me just say we're on the Dexcom seven, so we've been manual and the OmniPod five. So we've been manual since she got a pump, because they don't talk to each other yet, right? So we've learned how to do everything manually, and that's how she knows how to do it right now, until, until the two of them are, you know, interfaced together, I guess. So she's good about, you know, counting carbs, putting it in the PDM is still getting the point where, if she starts heading up, you know, we still have to step in and go, Hey, you know you're getting up, you probably should give yourself some more insulin, catch it before it gets too high. And she's getting better about that, I think a little bit in her mind. She says, Okay, I gave my insulin for this amount of carbs, this is what I gave. I'm good. She expects it to work, right? Yeah, she she did the work. She did what she was supposed to do. So it's all of that, you know, hey, it's heading up, and she is getting better about that now, like, I give her props. Like, pretty much during the day, we don't really bother her. You know, she handles it all during the day pretty good, unless she stayed high for a while, then we might say, hey, you've been high for a while, like, you probably need to, you know, give yourself some insulin, and she'll be she'll usually say, Hey, I've already done it. It's just not coming down. I'm not sure why. So, yeah, for for us to be just a year in and her to be on the spectrum. She's doing amazing. I think,
Scott Benner 6:42
yeah, no, she it sounds, it sounds like, it like, so what happened in the very beginning that made you feel like, oh gosh, here, here are the problems. What was happening that made you go, there's insufficiencies in what we're doing. The Dexcom g7 is sponsoring this episode of The juicebox podcast, and it features a lightning fast 30 minute warm up time that's right from the time you put on the Dexcom g7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable and light. These things, in my opinion, make the Dexcom g7 a no brainer. The Dexcom g7 comes with way more than just this, up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances. And this might be the best part. It might be the best part, alerts and alarms that are customizable, so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox, links in the show notes, links at juicebox podcast.com, to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. I was looking for a way that we could all get nice and tanned and meet each other and spend some time talking about diabetes. How are we going to do that on a juice cruise, juice cruise 2025 departs Galveston, Texas on Monday, June 23 2025 it's a five night trip through the Western Caribbean, visiting, of course, Galveston, Costa, Maya and cozmel. I'm going to be there. Erica is going to be there, and we're working on some other special guests. Now. Why do we need to be there? Because during the days at sea, we're going to be holding conferences, you can get involved in these talks around type one diabetes, and they're going to be Q and A's plenty of time for everyone to get to talk, ask their questions and get their questions answered. So if you're looking for a nice adult or family vacation, you want to meet your favorite podcast host, but you can't figure out where Jason Bateman lives, so you'll settle for me. If you want to talk about diabetes, or, you know what? Maybe you want to meet some people living with type one, or just get a tan with a bunch of cool people. You can do that on juice cruise 2025. Space is limited. Head now to juicebox podcast.com and click on that banner, you can find out all about the different cabins that are available to you. And register today. Links, the show notes, links at juicebox podcast.com, I hope to see you on board.
Becky 9:27
Well, I mean, I think it just started with the whole hospital setting, you know, we went, we went into the hospital. So I'll give you a little backstory. So she, she had been complaining of, you know, and I don't, I didn't know much about diabetes. I do have a girlfriend whose son was diagnosed when he was 12, and I just vaguely remember her saying that he was he drank a lot of water, and that he was fatigued a lot when they had found out. So that kind of somewhere in the back of my mind. But she had been complaining of stomach ache for like, three months. She complained that her stomach hurting, and she had ran in. Only thrown up a couple times, but she had just started working at my husband's company, and she was working in the warehouse, and it's hot, you know, it's, we live in Florida, so it's very hot. Yeah, she was drinking tons of water. She was coming home fatigued, she was losing weight, but to be honest, I was contributing all of that to her being in the warehouse, you know, because she went from this kind of sedentary, didn't do a lot, to being in this hot warehouse. So I was just kind of attributing it all to that. So finally, I took her to the pediatrician, and I was like, you know, she's playing on her stomach hurting. It's been going on for a while. I don't know what's going on. They were just kind of like, well, oh. And so backstory, my daughter is deathly afraid of needles, like we couldn't even prick her finger, like when she would go for the like, for her normal, you know, checkups, trying to give her a vaccine or any kind of shot. I mean, got, I mean, holding her down, screaming, craziness, right? It was just crazy. Okay, so when we went to the doctor, she didn't prick her finger or anything. She just said, Oh, she probably has acid reflux. And so she gave her a prescription for acid reflux medicine. And then she said, and I said, Well, anyway, we can get her blood work done. You know, she hasn't had it done since she was little, because she refuses to, you know, go around any needles, yeah, so she gave us blood work to get done. And I kept telling Kara, well, she we got the prescription filled. She took that a couple times. She said, That's not helping. That's making it worse. And I said, Well, you need to go get your blood work done. And she's like, No, I'm not doing it like she refused, refused to go get it done. So three months goes by. That was in April, in June, we went to we went on a cruise. While we were on the cruise, she was sleeping constantly. She was eating like crazy, drinking tons of water. We were with another couple family friend of ours, and I said to them, you know, if I didn't know any better, I would think she has diabetes. And we all went, oh god. Wouldn't that be awful, considering how much she hates needles, right? We were like, oh god. So we just kind of put that out of our mind and went on whatever that was. In June we got home, July 4, we had went to a cookout at some friend's house, and we came back home and she laid on on the couch. She's like my stomach hurts. Of course. She had macaroni and cheese and bread and all this stuff. So I said, Kara, I don't know what to tell you. You know, you won't go get your blood work done. I don't, I don't know what to tell you. You know, I was getting, actually getting a little frustrated with her. I'm kind of, I feel bad now, but I was, like, frustrated with her because, like, I can't help you if you don't want to do what the doctor says. So the next day, July 5, she was still complaining of her stomach hurting. So I said, Okay, I'm just taking her to the emergency room, because I know my kid. I knew that they were going to have to, if they, if they took her in, they were going to put an IV in. And I thought, we can get all the tests done after they get that IV did anything that might be going on, I won't have to, you know, keep taking her back and forth to get blood work done. And so I took her to the ER and told them what was going on. And they were like, she looks fine. And I'm like, Yeah, well, she's been complaining of stomach hurting. And I told the doctor. I said, if I didn't know any better, I would think she was diabetic. They just kind of gave me the stare, like, whatever they went to put an IV in. Of course, my daughter freaked out. Said 20. So acts like a toddler when it comes to, you know, any kind of needles. So we kept telling them, like, Hey, you probably need to give, like, give her a valium or something to calm her down. You need to, like, give her nummy medicine on her arm, like anything that you think might help, because she's going to give you trouble to get the IV in, right? And they finally did. They finally did. It took like, three nurses to hold her down to get it in. So finally get the IV in, and then the doctor comes back, like 45 minutes later, after making the blood work, and says, Oh yeah, she's diabetic. She's in DKA, and were sent her to the ICU. And I was like, what?
Scott Benner 13:43
So they took you seriously when you said that, yeah, they
Becky 13:47
took you seriously. But then, well, sort of, she kind of looked at me, like, okay, whatever. And then when she came back, then she was like, oh gosh, you know, you were right, and sent us to the ICU. So anyway, needless to say, while we were in the ICU, it was a nightmare, just because of, you know, all the shots, you know, them coming in and pricking her finger and every hour on the hour, and all the different IDs they had to put in. It was a nightmare. But I kept saying, hey, like, we don't know anything about diabetes. Like, is there, like, an endocrinologist that we can talk to? Is somebody going to come in and talk to us about this? You know, are we going to get any education? And they kept saying, yeah, yeah, somebody will come in, yeah, we'll send in a nutritionist. And finally, a couple days later, they sent in a nutritionist, and then she sat us down, and we were like, she told us, like, she can't have canned vegetables anymore. She can't have this. She can't have that. She was just going. They were candid.
Unknown Speaker 14:41
Yeah,
Unknown Speaker 14:42
actually, vegetables. Becky, can
Scott Benner 14:44
you give me a second here?
Unknown Speaker 14:45
Sure.
Scott Benner 14:45
I'm gonna ask a question. Don't be insulted. Okay, no, are you? Are you nervous
Speaker 1 14:51
a little bit? Do you have ADHD? I do not. Okay,
Scott Benner 14:56
I'm gonna tell you. Why
Unknown Speaker 14:59
am I speaking? Really fast.
Scott Benner 15:00
I don't know what the we're talking about. Gosh, that does not happen to me that often you're doing that thing that. Have you ever seen Donald Trump's speeches in writing? No, he starts and stops and starts and stops and starts and stops like, he'll go like, I don't know exactly what I'll say, but he'll be like, I'm here today to talk about this dog actually, you know my wife, she had a cat and like, and then you're like, we love pets. When I say we, I mean my husband, I'm like, and I'm like, What the was the first thing he was gonna say and then, but when you hear it, it sounds right, like, I know that's a weird thing. Like, when you I'm using is a bombastic example, but when you listen to him, you go, like, I know what he's saying. Like, like, I understand what he's trying to say. But if you look at it in writing, it's disheveled at best, and I feel like you're jumping around like that. I feel like we're on a roller coaster and watching Pulp Fiction at the same time. And Vincent Vega is alive. He's dead, he's alive, he's dead, he's alive, he's dead. I don't like if I asked you one question, yep, I asked you, what has happened that made you feel like what you were doing is insufficient? Do you think we've answered that question?
Becky 16:10
I guess not. What I mean, not so much, what I'm doing is insufficient. I think the education that we received, or the lack of education that we received when we were in the hospital because she was diagnosed as an adult, right? You know, I hear on your podcast a lot that people that you know, the kids that are diagnosed younger, they're at these children's hospitals, and, you know, they get all this education, or a lot more education. I
Scott Benner 16:34
see what you're saying. So, because she was an adult, yeah, because she was an adult, but she doesn't absorb things like an adult, correct? She got that crappy adult hospital education that we hear about so much they're talking to her, but the truth is, is you basically are the one that's gonna have to still understand it, and it's very incomplete, and then you go home. Okay, correct? I'm happy to go back to that. We are so far into what I think is her diagnosis story that I want to keep going with it anyway, but I want to get you
Becky 17:06
back. Sorry. Yeah, so I guess my guess, what I was trying to get to is, while we were in the hospital, we kept asking for education, and we and they knew that my daughter was on the spectrum, and we kept saying, you know, we need to know what to do when we get home, you know, and but they kept speaking to her, obviously, because she was 20, and even though we have her sign a paper saying that, you know, we have, you know, rights to help her medically,
Scott Benner 17:34
yeah, that's what I'm wondering. Like no one ever just was like, hey, like, pulled you aside and said, Look, are we talking to you? Are we talking to her? No, no.
Becky 17:42
And so we kept saying, my husband and I kept telling them, like, hey, like we don't know anything about diabetes. Like, we don't, you know. We know you guys are coming in, they're pricking her finger, they're, you know, coming in and giving her insulin shots. But nobody was really explaining, like, I had no idea that, you know, it was a carb count. I had no idea that, you know, even what a what the normal range of blood sugar was supposed to be. So when we were discharged from the hospital, the only person who had come in to talk to us was that nutritionist.
Scott Benner 18:15
No canned vegetables,
Becky 18:16
no canned vegetables. Like I was like, what, you know, I to be honest with you, I just kind of ignored what she said, because I was like, she's not being very helpful. I don't even know what she's talking about. You know? I said, well, is anybody else going to come in and show us how to administer this shot prick her finger? Nobody ever came in and showed us how to do any of it until an hour before we were being discharged, I said we're not leaving until somebody shows me how to do like I don't know what I'm doing. I mean, luckily I have a little bit of a medical background, so I did know how to draw up, you know, insulin into a syringe. You know, I didn't draw up insulin at work, but I would draw up saline and things like that. So I knew how to draw things
Scott Benner 18:59
up, but I didn't really know you never stuck in anybody's arm or anything.
Becky 19:03
I never, I never knew how you know. I didn't know how much to give her. I didn't know what the fingerprint numbers meant. We didn't know any of that. And so it was just really, I guess, just really frustrated that there's not some sort of, I don't know, just a better practice around you know, younger kids, even though they're considered adults, 18 to whatever that they I'm
Scott Benner 19:28
gonna break some news to you here. There's not so I found that out. I found that that does not exist for reasons that I've belabored over and over again. I just did a grand rounds episode yesterday. I recorded one with, like, this fantastic person and, and I was like, so how do we fix this? She's like, I don't know. And she was like, really dedicated. Had type one understood honestly, like I was talking to the right persons. Like, what's the fix for this? No one ever knows. Yeah, I think there's a number of. Reasons for it. I do sometimes try to look at it from their perspective. Like, what if I had this conversation with the nurse who helped you, would she be like, Oh my god, there was a 21 year old girl, oh my god. She had autism, and she was like, screaming. We tried to take her blood and everything, and I didn't know what to tell her. Like, do you ever think it would be like, You know what I mean? Like, from that perspective, like, what do you do? Like, what do you do when someone comes in with a 14, A, 1c, and you're like, Listen, are you bolusing for meals? And they're like, Nah, not usually. Like, where do you start? You know what I mean. So I try to put myself in their perspective, but at the same time, they're not always talking to people who aren't going to listen. I think what ends up going wrong is that there's no there's no checklist for them to go through. It's almost like you get the information as they think, to have it fall out of their head while they're working. Does that make sense? Yeah,
Becky 20:52
that makes sense. Yeah, I did get a hold of, you know, I did do like, a big complaint the hospital, just because I I actually worked for that hospital for 15 years, so I knew a lot of, I knew a lot of you know. So I was very frustrated, very frustrated. And so, you know, I did end up going up the ladder a little bit. And somebody actually did come to my house and brought a diabetes book that they were supposed to give us in hospital that talked about diabetes. It talked about all kinds of different, you know, different food options, different different things. And she, she came to my house personally, and she was like, I'm very sorry about, you know, your experience at the hospital, you know, this book they should have given to you while you were there. She said, I went in, I talked, you know, we obviously dropped protocol. I mean, nobody even knew where these books were. She said, when they went into, when she went in to talk to them, nobody even knew about these books. Nobody knew where they were. I mean, not that the book is going to tell me everything, everything, but at least I would have felt like, okay, they're trying to educate me a little bit, you know, here's this, this book that's going to help Right, right? And she said, You know, I she, I just told her. I said, Look, I just, I don't, I don't want this to happen to anybody else. I want, you know, there to be, be a better way to go about this. I said, because our experience here was terrible between, you know, and we kept telling, you know, our child's on the spectrum. She needs different. You know, the normal way of doing things isn't going to work for her. You know, you need to listen to what we're trying to tell you, because we can make it easier for you. You know, if you just listen to us,
Scott Benner 22:28
yeah, we understand the bigger picture here that you don't get right, right?
Becky 22:31
So I do have to say that they, they did, at least, you know, they did, at least, personally contact us the hospital and try to, you know, you know, told us that because of our our experience there, they were working on, you know, a better protocol, how to a better way to do things, yeah, sure. I
Scott Benner 22:52
hear there's not gonna be war in the Middle East soon too. They're getting it all worked out. Don't worry, right? It's all happening. It's yeah, it made me feel
Becky 23:01
better. I know that. You know reality, it was. They were just trying to appease me, but it did make me feel better. I said, you know, I just don't want anybody else that comes in there to have to go through we because when we got discharged, they gave us, and I don't know how it works for Children's Hospital, Children's Hospital, but we left with no nothing. We just left with prescriptions to go get insulin, prescriptions to go get a meter, prescriptions for, you know, test strips, that kind of stuff. And before we left, I told my husband, I said, you know, before we leave, let me just call and make sure the pharmacy even has. I had to call four different pharmacies before I even found the insulin in stock. So they were going to send us home with no insulin, and I couldn't even find it at first. You know what I mean? I was like, I don't know. I just felt like just everything was so crazy and so confusing. So we had said, is there an endocrinologist that we can see? And they're like, No, there's no endocrinologist on site. I go, you're telling me there's no endocrinologist throughout your whole system that can come and talk to us. No, they don't do they don't do that. You have to make an appointment one night, when my husband was leaving and I was staying with Kara, he came, came upon an endocrinologist that was in the same building that we were in. And so he walked over there and he told him, you know the situation, what was going on? And they were, they were kind enough to give us because we said they were able to make us an appointment for a few days after we got out of the hospital, but they were kind enough to give my husband the blood work that they would actually have us draw so they were able to do it in the hospital, so we wouldn't have to go take her again for another blood Draw after we got out of the hospital to answer, you know, whatever the endocrinologist wanted to look at. So we did bring that back to the the doctor, and, you know, they were at least willing to do that while we were in the hospital. So that saved us a, you know, a blood draw you've had
Scott Benner 24:55
this experience, okay? And it's, it's impacted you, obviously, yeah. And you've had time to think about it, and now you know more about diabetes, so I'm going to turn it around on you and say, What could they have done that would have made this better for you? Well,
Becky 25:10
I think just a little bit more education in general. Tell us why. You know, they just said keeper between this number and this number, but they didn't really give us the reasons why? Why do we need to keep her between this number and this number? You know, you know, if she goes below this number, this is going to happen, or if she goes over this number, you know, you're looking at, you know, long term effects. You know, if you stay high for too long, or, I don't know, I just think a little bit more of the reasoning behind why they were doing what they were doing. And why does she get this much insulin for this much you know, I don't know. Just
Scott Benner 25:46
Can I play devil's advocate for a second? I know you will in that moment, if they would have dumped all that on you. Do you think you're on here a year from now going? They really panicked me. They told me that if her blood sugar got too low, she could have a seizure and die, and if her blood sugar got too high, she could have things like neuropathy and maybe lose her feet one day. Like, if they would have hit you with all that, don't you think you would have been like, why'd you tell me all that I was day one. I just was figuring this out. Like, my question is, is it possible that there's no way to make it good on that day? And maybe,
Becky 26:16
maybe you're right, but I feel like, because I have a little bit of a medical background. I think more that way. I think in those terms, more, you know. So I think I would have been okay with it. Maybe my husband wouldn't have been okay with it at the time. I don't know, but I like to rather know the fact, you know what I mean, like, this is why, this is what we're doing, that this is why this happens. You know, at least I'd like to think that maybe you're right, maybe, maybe I would have felt way overwhelmed if they had to throw all that you know more on me, but I don't think so. Knowing my personality, I think I would have felt better knowing the reasons why
Scott Benner 26:49
you would have been okay. Yeah, can you imagine there are people who wouldn't have been Yes, how do they know who's
Becky 26:56
I guess they don't know that. I guess you're right. They don't know that. That's
Scott Benner 26:59
the part that I think we we miss all the time. I'm guilty of it as well, because in my hindsight, I'm like, Oh, my God, you should have just told me this. You should have told me that. You should have told me this. But those are things that I even know, that I should know now because of what I went through. And I think given the totality of the situation, meaning that often those nurses are new, right? There's not a lot of like, 10 year ER nurses, right? That's a pretty, like, high impact burnout job, right? So people go in, they do it for a while, and then they're out of it. Go meet an ER nurse that's had a job for five years, and they're going to be talking about, like, I'd like to get a nice job at a pharma company, pretty much what you'll hear them say, right? I want to move some paperwork around for the FDA. Like, that's, you know, that kind of thing. So you have newer people. They don't have diabetes. Their training doesn't teach them anything about diabetes. The stuff they're telling you, if you really think about it, is just the stuff they know. Like, I know. You want to keep it between these numbers. You're like, tell me why. They don't know why, right?
Becky 27:59
Yeah, no, well, I'm learning that now. Yeah, I didn't know that then, you know, I didn't, I didn't realize that they weren't, you know, educated enough to know the whys right, you know, I just assumed they did, and we just weren't being told. I mean, I know that now, mainly just from listening to your podcast. I mean, really, we've learned everything that we know from your podcast. Well, that's very luckily enough, we found it very quickly. And that was a weird little story. The day we got home from the hospital, my husband and I were like, Okay, we just need to get out of the house for a minute. We just need a break. And so we were going around our neighborhood.
Scott Benner 28:37
Wait, hold on, how many kids do you have? Three? Three,
Becky 28:40
but she, she's our youngest. She's
Scott Benner 28:42
youngest, okay, youngest, and you've been raising her for 20 some years. Is there any chance that, like you're she's never going to not need you? No, I think at
Becky 28:53
some point she'll be able to, she'll be on her own. I mean, she works and drives and all that. So it's just maturity level, you know, she's got to get to a higher maturity level. Me too. Becca,
Scott Benner 29:03
I'm still waiting for it to happen, but, but, I mean, when you guys are like, let's get out of the house, were you like, was there? Do you ever have been
Becky 29:12
in the hospital? Yeah, been sitting in the hospital and then with, you know, it was just so crazy the whole time we were in there because of just her freaking out over everything. And we were like, Okay, we just need quiet. Like, just peace and quiet for a minute. We're gonna just go outside. And we were going around our neighborhood, and this lady was outside in her car, hood was up, and my husband's like, oh, you need help. And she's like, Oh, my battery went dead. And so my husband went and got his truck, he was gonna jump start her. And he ended I stayed home, and he ended up telling her, why, why? You know that our daughter had just got diagnosed, and their babysitter happened to be 19 and had had diabetes, and my husband said, Oh, do you think she would come over and talk to our daughter? And so the next day, the girl came over, and she's the one who told us. About your podcast. Oh, no kidding. So yeah, so we knew about your podcast within a couple days of being out of the hospital. That's crazy. So I started, you know, just binging, you know, your Pro Tip series, and just trying to listen to all of that. And that worked. And yeah, our first, it worked. Our first. I mean, we knew nothing about pre bolusing. And to listen to that, you know, we weren't told about pre bolusing. I wasn't told about, you know, not to let it get try not to let it get over too high. You know, the hospital was like 200 something in the two hundreds, keep it below that. And so after listening to your podcast, our first three month blood work draw her a 1c we had her a 1c to 5.1 Okay, wow, good for you, yeah. And so she's, she's had three a 1c blood draws since she's been diagnosed, and they've been 5.1 was the first one. 4.9 was the second one, and we're at 5.3 now,
Unknown Speaker 30:56
how are you doing that? So
Becky 30:57
listening to what you I mean, we're being bold with insulin.
Scott Benner 31:03
Can I get a Christmas card or something? I mean, I'm not giving you my address, but, like, you know what, I mean, scan it and put it online or something, that'd be nice. So listen, it's crazy, because I expect that, and yet, when you say it, I'm like, Oh, my God, it really worked. Yeah.
Becky 31:17
And we, you know, we were MDI at first, which, you know, was a nightmare because of her. You know, by the time she got home in the hospital, she was very angry. There were, there was, at one point we had to sit on her to give her a shot because she did not. She was like, I'd rather die. I don't want to do this. I just rather die. She really say that. She said that. She said I'd rather die than give myself than have to have shots. And we were like, well, Kara, you know, there's a pump. There's, you know, and she would not even think about the pump that point. She was too scared. She would not even think about it. So we were MDI for the first three months we were we finally were able to get her to get, get the Dexcom on after about a month, maybe, maybe three weeks, my husband had to put one on and wear it first to show her like it's not that bad. And finally, we were able to get her get that on her once we got that honor. Obviously that helped, because we could see where her numbers were without having to prick her finger all the time, because she would fight us on pricking her finger. So yeah, we could we just listen to your podcast and listen to the Pro Tip series, and I don't know I learned so I learned so much now she won't listen to him. I'm always like, here, Kara, will you here? Listen to this one. Sounds really good. This will tell you No, she won't listen to him, but I do, and so I'm trying to teach her, what
Scott Benner 32:36
else is she resistant about? And is it something that you're able to get past or does it pretty much stick,
Becky 32:42
really? She's resistant to too many other things. She just is just like I said, very black and white. So reasoning skills are very, you know, her reasoning skills are difficult because she, she doesn't like to reason. You know, if you, if you say the sky is blue and she thinks it's green, she's gonna say it's green. You know, she's just very black and white. She does pretty well with most things. It was really the needle thing. That's, I mean, when she was younger, there were more things she didn't like certain smells, she didn't like certain sounds, she didn't like, but she's kind of outgrown all of that and moved past all that. It just was the needle thing. Was a big, big, big, big. That was the biggest hurdle we needed to overcome as she's gotten older, because she wouldn't get any blood work done. She wouldn't get she didn't want to get vaccines. She didn't want to, you know, all of that was hard. That's working, okay? I mean, she's now. I mean, it's like I said, come such a long way. I mean, now she puts her own pot on, she puts her own Dexcom on. She will prick her finger if she needs to. Amazed, amazed at how far she's come from us, holding her down, you know, but I think she just had to realize that it wasn't going away. This is part of your life now. It's not going away, and there's nothing else. This is it, you know, there's no other options.
Scott Benner 34:06
I hear you. So can you talk about it from your perspective for a minute? Because when you said you went outside, I imagine you guys going outside and just like, banging your head against a tree for a couple of minutes. What is it like? Like, you know, what's the last 20 some years been like, yeah,
Becky 34:20
like, you know, we have three daughters. She's our youngest of three. And so I knew something was a little bit different when she was probably about three years old. My son's off, and I just used to think she had OCD because, like, if I, if I were to get her dressed, she would shut you she wouldn't let me get her dressed until the drawers were shut or, you know, just really little weird OCD type thing. So when we found out she had autism, you know, it didn't surprise me, like I knew something was a little bit off for me, because I was the one who dealt with all the school and I dealt with all the doctors and the hole in her down every time we had to do something, and I felt like, Oh my god. Why? Why is this diagnosis of diabetes happening to her? Like she's been through enough, and I don't think I can take anymore, right? Because all of her life, I've had to be an advocate for her, you know, advocate with the school, advocate for with the doctors, advocate with everything. So when this diagnosis came along, I just thought, Oh, my God, you know, like, what more? One, can this poor kid be dealt and two, I don't know how much more you know, because I knew the majority of it was going to fall on me. I mean, I'm I'm home now, I don't work anymore, and my husband, you know, works. And so I knew that I was going to be the one doing most of the research. Are you
Scott Benner 35:39
an older parent? How old are you? Yeah,
Becky 35:41
I'll be 53 next week. Okay, so not really an older parent. My first child is 28 so I started at 24 so we have a 28 year old, a 24 year old, and then she just turned 21 in April, you know, not, not an older parent, per se. But for her, she was, you know, something,
Scott Benner 35:59
3031, something, when you had her, yeah, okay, yeah.
Becky 36:02
Her whole wife growing up, I've just had to be an advocate for her, and I've had to deal with her, you know, little eccentricities, here and there, etc, yeah. I just when this diagnosis came, I was just thinking, Oh my gosh. Like, well, we were finally at a point where we, my husband and I could leave, we could go away for the weekend. We could do, you know, and she could be here home by herself, because our other two daughters are, they don't live at home anymore, and so we could go and leave her. And then when this came along, I thought to myself, Oh my gosh, you know, I'm
Scott Benner 36:33
never getting out of this house. We're
Becky 36:34
never getting, yeah, we're never gonna do anything because, you know. But again, it's been a year. She does great. She handles everything by herself during the day and just occasional prompting here and there, but it's the night time that we we have issues with. I think she shuts down at night. I think she deals with it all day long, and then when she goes to bed at night, I think she just kind of shuts down. She doesn't wake up to the alarm. She doesn't want to deal with it, right? And so we have a garage apartment. So she lives in the garage apartment, okay? And we specifically built that knowing that she would probably live with us for a while, but we wanted her to have her own, you know, kind of her own space, and feel a little bit independent before she actually ever does get out on her own, and so, you know, she doesn't wake up. One of us has to truck up outside, up the stage, you know, wake her up, or just grab the PDM and give her, you know, insulin, or wake her up, tell her to drink a juice or whatever, because she's 21 and she's on the spectrum, and mainly because of her age, she you know, we tell her don't eat till late at night, or don't eat something so fattening, because it's going to hit you in the middle of the night, you know. But she's 21 she wants to eat Chick fil A, she wants to eat Chipotle, you know. And that's where we're having most of our issues. Is the night time. This
Scott Benner 37:56
reminds me of that line in the first Jurassic Park film, when the guy running the park asks, uh, Sam Jackson, how it's going, and he says, we have all the problems of a theme park and a zoo. I don't know what that exact line is, but, uh, that's how I feel, like that's the situation you're in. You're like, we have, like, a set of problems from this perspective, and we have a set of problems from this perspective, and her bedroom isn't down the hall or upstairs, it's outside and then in another structure. Oh, and we can't go out. And how you and your husband, okay? Are you? Like, like, POWs, like, just like, keep your head down.
Becky 38:35
You know, we, we did really good for a while. We went through a little rough, a rough patch through through this year, I won't lie, and we're fine now. But, you know, it was, it was a lot. It was a lot thrown on us. And I felt like, you know, for a while I felt like I was the only one. He's always been very involved with our kids. He's always been a good dad. Like, I think, because he knows I'm home, I have more time to listen to the podcast and to, you know, research and do stuff. So, um, oh, wow, I felt like, oh, maybe I'm the only one that cares about whether or not she's high or low. But no, he's, he's really stepped up to the plate, and he he does as much as I do, I would say, with the getting up, even though he has to work, you know, we'll take turns. If one night, if she goes high, I'll get up or goes low, I'll get up the next night. He'll do it. So we work pretty good as a team.
Scott Benner 39:24
What conversations do you have with her that are productive? Like, have you found a way to talk to her about stuff that ends well, I just think
Becky 39:32
a lot of it is just, you know, constant reminder, you know, like, when I when she's high, and we'll say, Kara, you know, the reason why we're on you about getting your blood sugar down is this is going to affect you later in life. You know, this can affect your heart. It can affect your eyes. And she already has eye, you know, some eye problems. So I'm like, this could affect your eyes. Could affect your kidneys, you know, just trying to get her to realize the whys, because she, I think, does better when she knows the whys. Mm. Hmm, but it really is just repetitive, I think, with her, yeah, reminding her why, you know, why you have to do this. Do you ever
Scott Benner 40:09
get something to the point where you think, oh my, this is done. She gets it, and then you wake up a year, a month later, and it's back to the way it was? Or once she gets it, does she have?
Becky 40:20
I feel like, once she gets it, she's pretty good about it, like she, yeah, I feel like, once she gets it, she's got it. And, like I said, with the with the daytime, now she's pretty much got it, you know, she, she handles it during the day. I don't really have to, you know, say too much to her during the day. And if I do, usually she's already on top of it. It's just It hasn't kicked in yet, or insulin hasn't kicked in, or whatever. But for some reason, at night, she hasn't gotten How does she
Scott Benner 40:50
handle being low?
Becky 40:52
She handles it pretty good. I mean, she gets she gets shaky, her hands start shaking, and she doesn't really get too stressed out. In the beginning, I used to stress her out, because if she got to a certain number, I was freaking out, you know, I was like, Oh my God, you know, Here, drink this, do this, because I was so afraid she was going to have like, a seizure or something. Then I was overcorrecting, and then she would shoot high. And I was like, oh god. So I think, in the beginning, I think I stressed her out more than she needed to be stressed, yeah, but now, you know, we're pretty good. If she gets, you know, she gets below 70 or below 55 really is when we really start to get more, you know, worried about it. If she's like, at 70 or whatever, like, I drink a juice, she drinks a juice, it still might go low a little bit, but we know that juice is going to kick in and she'll be fine.
Scott Benner 41:41
Has she ever had a situation where she couldn't respond in that low No,
Becky 41:45
no, not yet. We've gotten down to about 43 is about the lowest we've gotten. Okay? We haven't, you know, we haven't had any issues. Knock on wood. So far.
Scott Benner 41:56
What happens to her when she's lower like, like, as far as personality or ability to break reason. What do you see happen?
Becky 42:04
I feel like it's more when she's high that she doesn't have she gets really a she gets mean, almost like, mean, you know, when she's high, I don't when she's low. I just noticed she gets fatigued a little bit easier. She kind of like gets where she wants to nap more after a low, she's She doesn't seem to get too, you know, strange or anything. But with a high, she gets real like, mean, almost like, and when you tell her, like, Hey, you're high, oh, I don't care, you know, whatever, she just, she gets just real ornery. Yeah, when she's high,
Scott Benner 42:35
I think that's pretty common. I was just, yeah, it's interesting. Does she work? I'm sorry, did you say she
Becky 42:41
does work? She does work after, after the the diagnosis, they took her out of the warehouse and they put her in a on a desk job, so she's she does data entry right now, you know, being out in the heat and all that, we just didn't want her after she first got diagnosed. We were like, Yeah, we don't want her in that environment, just because we didn't know at that point how to handle anything, you know, we we were still trying to figure everything out. And, um, so she just, she just fine. Just fine. Working.
Scott Benner 43:11
What about wearing devices? So does she have any, like, tactile issues with those things
Becky 43:17
in the beginning, like I said, she would not. I mean, it was, it was the nightmare, trying to get her to try the g7 trying to get it on her. It's just a for her, she is. So we have to use, like, in the beginning, we had to use numbing cream for everything we did. Like, if she, if we, you know, had to not pricking her finger. We finally got to a point where we could prick her finger without doing anything. But we had to get, you know, when we got onto the devices. We had to do numbing cream for everything, and then, so then you it would take, you know, an hour to do a change, because we would put the numbing cream on, and we'd have to wait 30 minutes for the numbing cream to even take effect. And that was all really, I think, just a mental thing for her. I think she thought if she had the NAMI cream, it would just not hurt as much. So in the beginning it was just a mental thing. Now she does it all without numbing cream, like we've graduated, you know, but, yeah, in the beginning it was like it was this, itches this, you know, our she still says it itches. So we'll use, like, the nasal spray that people say to use. We'll put that underneath her pod before we put it on, and that seems to work for her. And again, I don't know if it's just a mental thing for her, thinking that she has the nasal spray, it works and it doesn't, you know, doesn't itch, or if it's just kind of like the numbing cream was that made her feel better to know she had it on, yeah,
Scott Benner 44:35
who cares? As long as she's happy, who cares? Yeah,
Becky 44:37
that's what said. Who Cares she's and like I said, She's pod changing on herself. Now she puts the Dexcom on by herself. Now, you know, if she, if she's putting it somewhere, she could do it. She still can't put it on her arm by herself for whatever reason, but she'll put it on her leg or whatever else. So, yeah, like, I mean, I guess my point is, you know, we, we went from not knowing anything to finding your. Podcast now feeling like we're, we're still learning. We still, I mean, we did, we did we do see Jenny, which we found through you guys, oh, cool, or through you. So we've been working with Jenny for the past three months, just to kind of learn some of the things that we we just couldn't seem to get control of, like the fat, protein rises, and, you know, things like that. She's been a big help for any other moms out there that have kids that are on the spectrum. You know, the spectrum such a wide, you know, there's such a wide variety of of where kid falls on the spectrum. You know, we're blessed enough that she's high functioning. Now, I just feel for any other moms that are going through this, because if they have a child that's not as high functioning, I can't even imagine how they're dealing with it. What
Scott Benner 45:49
happens, you know? Yeah, yeah. I mean, have you even been able to wrap your head around like I asked you before? Do you think she'll be okay on her own one day? But do you think she'll be okay on her own one day with Aya babies?
Becky 45:59
Um, it's definitely thrown a brunch into the, you know, where I thought we were going to be. I do think she'll be able to be on her own someday and be able to control the diabetes. I mean, the first step is handling it during the day, and she's got that down, you know, she's, she's pretty good at that, if we can just get her through the night to realize that, you know, and it doesn't happen every night, you know. Luckily enough, we don't have to get up every night with her, but on the nights that we do, you know, if we can just get her to the point of of self care in the night, then I don't think she'll be too far off from living on her own, you know, with the room, maybe with a roommate or something. I mean, I think totally alone. But don't
Scott Benner 46:39
let this scare you. But last night, I got into bed and like, an hour and a half later, Arden's blood sugar was going up, and I'm like, what is happening? And she's home for for school right now. And I looked and I'm like, why? This doesn't make any sense. Like, the I can see the algorithm, like, pumping insulin. I'm like, what's happening? So I look a little deeper, and this pump is, like, been expired for four hours, and it's getting ready to shut off, like, four more hours from now, right? I go in a room and I wake her up. I'm like, Hey, and she goes, what? I'm like, you're at the bed with a pump that's almost dead. And she went, Oh,
Unknown Speaker 47:09
I said, so that's what you have to worry
Scott Benner 47:11
about, right? I mean, so good luck is what I'm saying.
Becky 47:16
I know, I know. I maybe it's wishful thinking on my part, but I do think someday, I do, I do hope someday she will be able to live on her own.
Scott Benner 47:26
Do you guys feel an immense amount of pressure about saving money, like, for after you're gone and stuff like that?
Becky 47:32
Oh yeah, oh yeah. Like, we've already, you know, we've already set up a whole thing of, like, in case she doesn't have insurance, you know, we need to have money set aside to cover all of her diabetes supplies. And, yeah, yeah, that's been a real concern. And, you know, she has two older sisters who, you know, to be honest with you, they don't really care to learn about they're not in the house. They're not around it, you know, so, and they shouldn't have to be the ones to take care of her. Something happens to us, right? I mean, so yeah, we do have, we do have a system set up in our will that sets aside money specifically for diabetes supplies and her future, you know, health, in case she's not working or doesn't have a job with insurance or whatever. But, yeah, that's scary, because, you know, you got to have enough to last something. We just
Scott Benner 48:23
started looking to the idea of setting up a medical trust. And I don't know how much money we'll be able to get into it, but at least maybe it would be something, you know, and that's, I mean, I find that frightening, and an Arden is not, you know, doesn't have autism. So exactly, what about other autoimmune in your family? Is there any I have?
Becky 48:44
Hashimotos dad had thyroid issues, and like, rheumatoid arthritis runs in my family a lot. I don't have it. And as far as I know, Kara doesn't have any other autoimmune so far, thank God, but yeah, and I'm the only one with autoimmune in our family. My other two girls don't have anything, and my husband doesn't have anything, so she's probably got it from me, I guess, interesting. Yeah,
Scott Benner 49:09
do you feel better?
Becky 49:10
I mean, I do feel better. I guess I do feel better a little bit. Hopefully, I didn't just rant
Scott Benner 49:15
No, no. I mean, I mean, no, no, you were fine. Don't worry. Trust me, you're fine. I stopped you before it got away from you. Don't worry about it. I let you go a little bit in the beginning, because I thought your stream of consciousness was the interesting. I just thought that if I didn't, like make you aware of it, that we'd still be in it, like a half an hour later. Yeah, and
Becky 49:33
you're probably right, yeah. I think that was nerves in the beginning, though, and
Scott Benner 49:37
it's unfair, because people are nervous and when they come on at first and stuff like that. I can also see where, if I'm in your situation, this would feel like calling a friend with coffee and being like, can I just tell you what's going on? And you don't realize that a half an hour later, your friend's like, just going, Uh huh, yeah, right,
Unknown Speaker 49:54
yeah. Like,
Scott Benner 49:55
oh God, but not even listening to you anymore, because you're like, you have to get it out. And they know. You need to get it out everything. But I wanted you to be able to get some out. But then I wanted to ask you some specific questions as well. And we're not done yet. I just wanted to make sure that you were okay. Yeah, okay, I'm good. Do you or your husband go to therapy? No. Do you think you should? Maybe
Becky 50:14
I do. I don't know if he needs to. You mean as a couple, or do you think as like individuals? I
Scott Benner 50:19
don't know. Becky this whole thing,
Becky 50:22
we're good couple wise, we're good individually. Maybe I could probably use it, even Kara could probably use it. But no, we haven't gone
Scott Benner 50:29
more so since the diabetes. Or equally, equally, I think equally, because as she gets older, am I right? It seems to me like you're in this weird paradox where you're having a an adult child relationship and an adult, adult relationship at the same time. And then how do you exactly right, right, right? And then, good, yeah,
Becky 50:51
I just gonna say it's, you know, it's she, she, you know, wants to be treated as an adult. She thinks she's an adult because of the number of her age, right? So she wants to be treated like an adult, but, you know, she's just, she's just not there yet. So there's still just so many, you know, so many things I still have to just kind of step in and help with. How
Scott Benner 51:11
will you know when she's there?
Becky 51:13
I don't know. To be honest with you, I don't know. Is there
Scott Benner 51:16
a fear that she'll get there and you won't know how to, like, let go?
Becky 51:21
Yes, yes, because I am kind of an A type personality. Get
Scott Benner 51:26
out of here, seriously.
Becky 51:29
So, yeah, that could be, that could happen, for sure. I mean, because she'll always say, I got it, I got it, you know, if I'm saying something, I got it like, but I, you know, I'm like, you know, little, you know, I'm gonna make sure she's got it, you know, instead of just letting her do
Scott Benner 51:46
it, it seems to me that the worst mistake you could make is pushing to the point where it ruins your communication relationship. Yes, like, we want to do that, yeah, where she just writes you off, and then legally, can go do whatever she wants.
Becky 52:00
That is a fear like I've talked to my husband about before. I'm like, you know, she doesn't, she hasn't quite realized yet that she could just go and say, Oh, after you I'm leaving. You know, I don't have to listen to this, or you can't tell me what to do. You know, she hasn't quite figured that out yet. So I'm lucky enough that she still, you know, still kind of listens, but yeah, there's a real scare that one day she might go, What
Scott Benner 52:26
about like, real adult things, like, like, drugs and alcohol? How do you manage that stuff? Okay,
Becky 52:32
so she's never, you know, drugs has never been an issue that I'm aware of with any of my girls. We went. Her birthday was April 21 and we went to Nashville for a birthday. She loves music. She wanted to go to Nashville. She wanted to drink. And we're like, oh, gosh, you know, how do we handle this now? Because we didn't really even know it was
Scott Benner 52:51
in her mind, alcohol, yeah, what would affect anything? Oh, I see, okay, yeah. Like, we didn't know we wanted
Becky 52:57
her to be able to have a drink. I mean, she's 21 we wanted to be able to be able to have a drink, but we also didn't know how it was going to affect your blood sugar. So I'm looking through your, you know, your podcast, trying to listen to, you know, alcohol related podcasts, so I knew what to look for. Luckily enough, she's not a spritzer kind of drinker, you know, you know, what are those? Seltzer? Seltzer? Yeah, the
Scott Benner 53:19
thing in the can they look horrible. Not
Becky 53:22
much in there. That's really all she drank while we were there. So that was easy enough to handle, like, and she hasn't really wanted to try anything else. So, so far, you know, we've been okay. But I did talk, I did have a talk with her about alcohol and how it, you know, can affect her sugar and how can make you low in the middle of the night. You know, later down the road in the night, if you're sleeping, it can make you sleeping, it can make you, you know, get low, right? So, you know, we've had to talk with her. She, she says, okay, you know, that's, that's all I know, you know. But
Scott Benner 53:51
she has money, right? Yeah, she has money. She drives, she has autonomy, and she's aware alcohol exists. Yes, this is an interesting question. I think, what are the largest gaps of time where you're unaware of her location?
Becky 54:05
Not too much. There's not to me, I usually know where she's at. Most
Scott Benner 54:08
of the time, okay, she doesn't, like, leave work and then show up two hours later and you're like, Hey, where were you? And she goes nowhere. Well, yeah, sometimes,
Becky 54:14
like, she'll leave and I'll be like, Where were you? I went to Target, you know? But I do, I do have a tracking app on my phone so I can look to see where she's at if I really wanted to. But usually she'll tell me, hey after work, I'm going to target or hey after work, I'm going she has a boyfriend. I'm going over to boyfriend tunnels. Oh,
Scott Benner 54:31
whatever. Oh, my God. And even think about that, there's a boy.
Becky 54:34
Yeah, there's a boy. So how'd you let
Scott Benner 54:36
that happen? Becky, geez,
Becky 54:39
I know, right? I have to say, though he's been great with the diabetes, like he has learned all about it, he makes sure when they go somewhere, she's got her bag packed with her low supplies. You know, he follows her on the on the follow app. He's in a little group text with us, and so if she's low, he'll text. Say, Hey, she's good. She just drank a juice or something like, they're both very good about keeping us, you know, does he have autism? Important? I would say there's something I don't know if that's if that's been a diagnosis 100%
Scott Benner 55:14
is it a weird thing to ask? It's not a weird thing to ask, Oh, because I had a hard time asking if you had ADHD. I was like, Oh, I don't want to make her upset.
Becky 55:23
Okay? No, no, no, no, no, probably I would say he probably does. I don't know 100%
Scott Benner 55:28
if he does or not. Do you think there's a moment when you look at him and go, I
Becky 55:31
just know he likes all the weird things that she likes. Just to see,
Scott Benner 55:35
wait, what are some weird things that she likes?
Becky 55:38
She's just really into, you know, like she loves the Comic Con stuff, the dress, you know, anything that she can dress up. You know, she's, she was a Harry Potter freak. She was Disney freak, universal freak. You know, we live near the theme parks, so, you know, she's got passes and he, you know, and she loves music and Taylor Swift, and like things that she just takes him to the extreme. You know, where
Scott Benner 56:00
is there a world where you imagined getting him in a corner one day and looking at him going, so what's going on here? Or do you or do you like? Don't think you will I asked, I
Becky 56:09
did ask him one day if he was on the spectrum, and he told me that he was okay. But then the way he said, it made me I was kind of confused, because he said, Yes, I was on this spectrum when I was younger. But I'm like, you don't just go off of it, you know what I mean, like, you either have it or you don't, interesting. So, and I didn't, I didn't, like, keep prying. Of course,
Scott Benner 56:32
it feels delicate to me, you know, yeah, like, I
Becky 56:35
just kind of assumed he, he probably is high functioning, like she is okay, would be my guess. But they both work, they both drive. They both, you know, did you have
Scott Benner 56:45
to have a sex talk with her? Yes, how was that? Course, I did have a good time with that one.
Becky 56:50
What, you know, what? Because she doesn't, her social cues are off. You know, she doesn't really read social cues very well, and so she's being very black and white. I can have those conversations with her and be very open and very black and white about it. And she's good. Oh, interesting, yeah, much easier than having them with my other teachers. They're like, Ah, my god,
Scott Benner 57:11
shut up, lady, yeah. Like, really,
Becky 57:14
you know, but, like, but hers, I can pretty much talk to her about anything. She's pretty she just kind of, she doesn't have a filter, you know, she has no filter. So you can pretty much talk to her about anything that
Scott Benner 57:25
sounds kind of nice, actually,
Becky 57:27
that part of it, it could definitely have its moments where it's easier, right? The no filter thing, though, can also, yeah,
Scott Benner 57:35
I wonder, Oh my God, you listen now, you're making me want to, like, interview, like somebody like your daughter. And I just want to know what foreplay looks like. Is it like a contract? Is it like real black and white? You know what I mean, be super interesting. I could tell you that part. No, I don't think she was, you know what I mean, like, is it like, Hey, do you think we should have sex at 1030 right? And it might be sure that sounds reasonable. Scheduled in, yeah. I mean, if we're done with television, like, you know what I mean, like, because instead of like, actually, I gotta tell you something that sounds much better to me. Like, all the other stuff that happens and you're like, signaling, and signals get missed, or they get ignored, or vice versa. Like, ah, actually, I think it sounds nicer that way. Yeah, it might be. It might be, I don't want you to think about that though. Make you upset, yeah? So I tried. My husband's
Becky 58:27
like, oh, I don't want to talk about that. He didn't want to think about that with any of his daughters. So,
Scott Benner 58:33
so you have to talk about birth control with her. Yeah, she's
Becky 58:35
on birth control. She's on birth control. Yep. Now she was on birth control before, like, from the time she was like 16, but I'm sorry, but from the time she was like 13, because she had just horrible periods, or real heavy, heavy periods, so she was on birth control for a long time. But yeah, now we did have to, have to talk about, you know, how important it is now that you don't miss one, right?
Scott Benner 58:58
Yeah, a lot of things we can forget, not this. Yeah. Do you think she has PCOS?
Becky 59:04
No, she does not. Okay. No, I used to do ultrasound for a living. That was my job. Yeah, she's been checked out. Gotcha?
Scott Benner 59:13
Yeah, I would imagine, once the heavy periods come, you probably looked Yeah. Okay, all right, so Becky, is there anything we haven't talked about that we should have. I don't think
Becky 59:22
so. I guess I just want to say thank you for your podcast. Because really, I don't think we'd be where we're at without it. I mean, we even did a six week diabetes class with a diabetes diabetes educator right after she got diagnosed, and we came out of there still not knowing anything. And everything was so old school. You know, everything was the just like we didn't have any technology. And I was like, I learned absolutely nothing from this six week class, really. And, yeah, I didn't learn anything, but your podcast has been a lifesaver for us. Yes, I mean I literally, or I say we have learned everything that we need to, even the endocrinologist has been no help. But your podcast has, I mean, thank you for doing it. Because, I mean, we obviously wouldn't be in five, you know, five, a one, Zs for sure on the Plus, you know, not being a year out, I would have known nothing about pre bolusing. I would have known nothing about where good range is. Yeah, we just left. We just left the hospital so uneducated, and even the endocrinology office just uneducated, like we just, we didn't, we didn't know anything.
Scott Benner 1:00:36
Are you near Orlando? I am. I'm speaking in Orlando this year. Oh, are you? Yeah, touch by type one.org. Go there. Look at their programs tab. It's free, okay, yeah, if you want, if you're interested in a day of like, that kind of stuff, if you think maybe that would get her interested in something like sitting and listening to somebody talk if she was interested or not. But
Becky 1:00:56
touched by type one, yeah. I've
Scott Benner 1:00:58
heard you talk about that, yeah. So, so seriously. Like, thank you. It's very it's lovely to hear. And I'm, I'm super happy it worked for you. Like, I really am, like, I'm sure there are people who listen or, like, I listen and nothing happened. So I'm,
Becky 1:01:11
I'm telling you, if you follow, if you thought, you know in your and I think the thing, you know, you're bold with insulin. You know, when you say that, you know people are scared. Like, I still get nervous. Sometimes I'm like, I know she needs more, but I'm afraid to give it to her, right? Like, I don't know why I get nervous about it, but as we go along, the more we're getting more. Like, yeah, she needs more. She needs more. Just give it to her. You know. Why are we afraid to give it to her? You know? Just do it. It works.
Scott Benner 1:01:37
I hear you. It's hard. Listen. It's hard for everybody, not just you, it's me, it's everyone, you know. Like, you start looking, and you're like, wow, there's OmniPod more in, you know? And, yeah, you start going through those variables in your head. Like, well, what if the site's bad, like, Am I really even putting it in? Or, like, what if it's like, Is it food? Is it did I miscount a carb? Like, there's so many things that run through your head, and when there's all those variables, you freeze up because, yeah, it's just what happens. So because,
Becky 1:02:05
if you know, we just give her, you know, and she's a high carb eater, you know, we haven't gotten her to where she you know, every once while, she'll have a chicken Caesar's salad, but she's pretty high carb eater. So her bolus is, she's a 5.5 ratio right now, so she gets a lot of insulin. Wow. And you know, when you've just given her, you know, 12 units of insulin, and you know, she's still going up an hour and a half later, you're like, dang, I gotta give more insulin, you know, or she needs to give herself more. How's
Scott Benner 1:02:34
her variability? How's her what variability? Like highs and lows?
Becky 1:02:38
She always seems to go high after eating, and when I say hi, seems like she always gets up to around 180 and then she'll come back down if we've done it correctly, right? There's a lot of times she's sitting at the 180 mark, 180 you know, 185 and we cannot get her down. And we're like, what did we do wrong? You know? Like, what have we done wrong, and we don't know yet. You know, we're still we're still learning. We're still learning. I would love to keep her one below 150 like never go above 150 would be my idea. But we haven't reached that, reach that mark yet. We're still trying to figure out the whole food thing. But I think a lot of her stuff ends up being the fat and protein prizes that we get later. And
Scott Benner 1:03:22
the last thing I wanted to ask you, I'm so sorry, is that like your g7 and OmniPod five, but you're OmniPod five and manual? Because at the moment, OmniPod five doesn't work with g7 but are you going into automation once it does?
Becky 1:03:33
I mean, I we would like to, but now I'm kind of nervous about it, because we have such tight control with our a 1c right now, the way we're doing things, yeah, like, I'm almost a little nervous about going into automation, because I have heard that it's, it's harder to keep, you know, as tight of control, not as aggressive as you're being, yeah, because we're pretty aggressive. I don't know. I mean, maybe for night time, it might be good, but during the day, maybe she'd stay, man, I don't know, interesting.
Unknown Speaker 1:04:01
Yeah, well, I
Becky 1:04:02
can't wait to cross that bridge when it gets there. I
Scott Benner 1:04:04
bet your whole life is we'll cross that bridge when we get there,
Becky 1:04:06
pretty much, pretty much. But, yeah, I just wanted to, I just wanted to rant a little bit about, you know, not get enough education as an adult. And even though they're adults, they're still kids. In my mind, at 18, you know, 19, they still need a lot of listen guidance. Autism
Scott Benner 1:04:21
or not, 21 not exactly the pinnacle of common sense and rock solid thought. You know what I mean. So it's, it's a tough situation, whether, no matter your situation, yours obviously more so. But listen, my son's 24 and the other day he was like, very like, honestly, looked at me. He goes, dude, in my head, I'm like, 14, just so, you know? And I was like, Oh, I was like, well, if we're being honest, I'm like, 15 of mine, so don't worry about it. I
Becky 1:04:46
know I still feel like I'm in that, you know, like I'm in my 30s when I, you know, I know I'm think of yourself, but I'm like, yeah, yeah, when I think of myself, I'm like, Ah, you know,
Scott Benner 1:04:55
we had this conversation last night, and Arden's like, How old am I? In your mind? And and I said, Oh, you're like, your current age. And she goes, How about Cole? And I said, I think of Cole more like 17 or 18. Is that just because it's a boy? No, not because of how he acts. I don't even know. I think it's because he's so stark he looks so he's like such a man now, like he looks so starkly different, that the bulk of my time with him was when he was younger. So if I just think of him my head, He looks younger in my head. And I'm sure that five or six years from now, after spending more time with him as an adult, when I think of him as an adult, he'll be there like that. But Arden, I don't know like I don't I honestly don't know why it happens like that. I
Becky 1:05:38
know like my daughter, my oldest daughter is 28 and I still, I It's still hard for me to think of her as 28 almost 30, you know, almost 30, right?
Scott Benner 1:05:47
Yeah, by the way, she's three years shy of the last baby you had age. You know what I mean, right? Yeah, right,
Becky 1:05:53
yeah. She's, she's, she wants no children, so I'm not worried about that. With her, she's stuck to that. But, yeah, in my mind, she's still, you know, she's still just my little kid, you
Scott Benner 1:06:05
know, all right, okay, well, Becky,
Unknown Speaker 1:06:07
you appreciate your time.
Scott Benner 1:06:08
I appreciate it.
Becky 1:06:10
Thank you. Thank you for the podcast and for all the info you put out there. It's very much needed.
Scott Benner 1:06:16
Oh, it's a pleasure, and I it's very kind you to thank me, but it's not necessary, but I will absolutely accept it and let it bleed my my whole day will be higher because of this. I have a lot of sit here, boring work to do for the rest of today, and if I get upset, I'm gonna think there's a 21 year old girl out there who has autism and type one diabetes. She's got a great a 1c and you did it, Scott, that's right. And I'm just gonna make myself feel better also, by the way, you guys obviously did all the hard work. I just made the podcast, but, well,
Becky 1:06:44
seriously, that was the hard work. The podcast is the hard work, you know, listen, implementing it is, you know, just what you got to do. I
Scott Benner 1:06:51
think what you did was the hard work. I think probably the reason why I have so much trouble taking the compliment is because it's like, I showed you a map, but you still had to climb up a mountain like it's hard for me to take like credit for that, you know what I mean? Well, you should, you should I understand what you're saying? I'm fantastic. All right, now, all right. Well, you were delightful. I thank you for coming on. Thanks. Have a great day. You too. Hold on one second. You
a huge thanks to touched by type one for sponsoring this episode of The juicebox podcast. Check them out on their website, touched by type one.org, or on Facebook and Instagram. You can use the same continuous glucose monitor that Arden uses. All you have to do is go to dexcom.com/juice, box, and get started today. That's right. The Dexcom g7 is sponsoring this episode of The juicebox podcast. Tickets for the 2025 juice cruise are limited. I'm not just saying that they actually are limited. We have a certain window to sell them in, and then that's it. Juicebox podcast.com, scroll down to the juice cruise banner. Click on it. Find a cabin that works for you and register right now. You are absolutely limited by time on this one. I'm so sorry to say that it sounds pushy, but it's the absolute truth. Juice cruise 2025 I hope to see you there. We're gonna get a tan, talk about diabetes and meet a ton of great people who are living with diabetes, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the juicebox podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player. Or you can go to juicebox podcast.com and click on bold beginnings in the menu. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The juicebox podcast. The episode you just heard was professionally edited by wrong way recording. Wrongwayrecording.com. You.
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