#952 Type 1 and Down Syndrome

July 14, 2023Scott Benner

Johanna's daughter has type 1 diabetes and Down Syndrome.

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Scott Benner 0:00
Hello friends, and welcome to episode 952 of the Juicebox Podcast.

Today on the podcast I'll be speaking with a mom of a 12 year old with type one diabetes and Down syndrome. While you're listening, please remember that 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. Or becoming bold with insulin a few quick things, join the Facebook group Juicebox Podcast type one diabetes to meet 40,000 other people who are living with diabetes. It's a private group. I think you're gonna love it. There's something there for everyone. Juicebox Podcast type one diabetes on Facebook doesn't matter what kind of diabetes you have. You're welcome in that group. Other quick stuff, save 35% off your entire order at cozy earth.com When you use the offer code juicebox get 10% off your first month of therapy@betterhelp.com forward slash juice box and to get five free travel packs and a year supply of vitamin D with your first order. Drink ag one.com forward slash juice box

this show is sponsored today by the glucagon that my daughter carries. G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox.

Johanna 1:45
My name is Joanna. I have three daughters, my oldest of which is 12. And she is the one who has type one diabetic. And I live in Canada.

Scott Benner 1:56
Okay, your 12 year olds a T one just for context. How old are your other kids?

Johanna 2:01
They are eight so have eight year old identical twins. A 12 year old

Scott Benner 2:05
did that? Um I don't know. I don't know what phrasing I was just about to use. But my brain was like Don't say it that way. Was that from IVF or luck?

Johanna 2:18
We did have helped. So we did actually IUI and Clomid to get pregnant with the twins. But they are identical twins are spontaneous. And so it was a surprise. We actually were pregnant with triplets at the beginning. So it looks like the third one was fraternal, but we'll never know passed away and then ended up with identical twins. However, I'm an identical twin myself. So there's no real data about whether identical twins run in families or not. Usually it's fraternal twins. But it's certainly possible. And that's just the way it turned out in our family. I'm an identical twin and I have identical twins.

Scott Benner 3:00
My neighbors have two sets of fraternal twins. Wow, that's interesting. So they had babies twice and ended up with four kids, which is the way I think of it. But you for one discount? Exactly. Yes. Six more responsibility. Yeah. Okay. So we're here to talk about your 12 year old obviously, yes, we're not going to use her name. So I'm saying that out loud. So everybody knows we're talking around that a little bit and so that we remind each other of the same thing. So how do you want to how do you want to refer to her as P? Okay.

Johanna 3:37
So, P has Down syndrome. So she was diagnosed at birth with Down syndrome. And people down syndrome tend to have a lot of autoimmune conditions. So even though she's been really healthy throughout her whole life, she has sort of developed autoimmune conditions along the way. So at one years old, she developed alopecia. So her all her hair fell out, and it hasn't really ever grown back. At four, she developed hypothyroidism. And so we've been treating her with Synthroid since then. And then she developed diabetes in January of 2022.

Scott Benner 4:11
Oh, that's so recently. Hey, The Hypothyroidism is that Hashimotos.

Johanna 4:17
They've never called it Hashimotos. But it is autoimmune. So we, we did see an endocrinologist. They ran the autoimmune panel. They said, yes, it's autoimmune, but they've never actually called it pescados. So

Scott Benner 4:30
unless I'm wrong, that's Hashimotos. Okay, so hey, well Google it later. Okay, so but the diabetes came up. Oh my gosh, like not even 10 months ago.

Johanna 4:43
Yeah, so we I feel like the triggering event was we went to we had a big family gathering at Christmas. My nephew was sick, picked it up. And so she got quite sick with it. Nothing. I mean, she we managed her at home, but she was on She was sick for two weeks. And then shortly after that, she started drinking lots of water. And so I had known what the what drinking lots of water meant. I knew it was a risk factor for diabetes. And eventually it went on long enough that I thought I like I need to look into this. So I called the pediatrician. He said, Yeah, we'll order bloodwork. So we did blood work on a Friday. He called me at home at night, that night and and said, You need to go to the hospital. Her blood sugar's really high. So we packed up, went to the hospital, and then we were diagnosed like, that was a Friday night, on Saturday. With diabetes.

Scott Benner 5:40
Yeah, it's not a hard and fast rule. But if your doctor calls you at night to tell you something. Bad sign Yeah, prepare yourself. It's like we cannot wait till morning. Not not a good. Not a good sign at all. No.

Johanna 5:54
So they tested us, we walked right in into the hospital into an intake room. They tested her blood sugar right there. And it read high. So I didn't actually knew I didn't know what that meant. At the time. I was like, Oh, that's weird. It's high. I didn't know what meant it. So high can't read it. And so they ended up getting they did the bloodwork. Her blood sugar was 36. A diagnosis, which is 648. They did the conversion for you. Thank you. And her agency was 13.8. So chi, but she was not in DKA. It was there just she just wasn't that sick. It was just the drink in the urination. Or the drinking in the urination that was happening at that point. But they did admit us. Because it was a weekend. None of the courses started until Monday. And then we got into the diabetes clinic right away on Monday.

Scott Benner 6:48
Wow. I wonder if we'll never know. I'm just like thinking out loud. But I wonder if the illness also had her blood sugar driven up as well? Because it's a short amount of time, right? It was

Johanna 7:00
Yeah. Yeah. But her the thirst really increased really quickly to a point where I just couldn't ignore it. Like, you know, for a day or two, I just thought I'd like the can't be diabetes can't be diabetes. And then after a day or two, and it continues, you're like, kids diabetes? Yeah.

Scott Benner 7:16
Did you have did you have, I hope not list in the back of your head of things that might happen to her as she got older.

Johanna 7:24
Yes. And that was definitely one of them. So I know of a couple of, of children in the Down Syndrome community that have type one diabetes, we don't have anyone in our community group that has it. But I know someone online whose son has a type one diabetes and celiac. And then I know of a couple other families through social media who have it. And so definitely, that was one of it. One of the things that I was desperately hoping that she would not get, but here we are.

Scott Benner 7:54
Yeah, wow. The twins have any issues at all.

Johanna 7:58
ADHD. So they all actually have ADHD. And so they had me to thank for that. And I was only diagnosed with ADHD, after all three of them were and, and then it finally occurred to me, oh, my gosh, they're just like me. And so I went through the diagnosis process with psychiatrist and sure enough, I have ADHD as

Scott Benner 8:19
well, how does that impact them and you?

Johanna 8:24
For the twins and myself, it's emotional regulation. And so for them and myself, we we just have tantrums far longer than is really typical for children. And so they're eight years old and regularly have tantrums. Where they just cannot, you know, control their emotions. And for when you look at size of the problem, it's really quite out of out of range for the size of the problem of what we're, Oh, I see what the denied request is,

Scott Benner 8:58
I want this soon. You wanted that spoon and four hours later, we're arguing about itself kind of thing.

Johanna 9:03
Something like that. Yeah. Mostly two denied requests. So can I go to the park? No. And then it's a massive meltdown. And, you know, for students and for children in grade four? Like, that's a pretty big reaction for Yeah, how does that know?

Scott Benner 9:16
How does that look in your life?

Johanna 9:18
For me? So I've had all kinds of issues with emotional regulation growing up, and I, by the time I was in my early 20s, I had a diagnosis of major depressive disorder. So what happens is when you don't treat emotional dysregulation, when you're young, it just turns into something else. So for me, it was anxiety and depression, which has stuck with me throughout my whole life. And so I'm on medication. Now. I have been for years and years, I do much better on the medication, and being on the medication helps control my ADHD symptoms.

Scott Benner 9:53
Well, you know what you need your kid with Down Syndrome and type one diabetes, right? That's perfect. Are you

Johanna 10:00
right? So actually having Kipper Down Syndrome has been sort of probably the most transformative thing experience of my life. So it was the very first thing in my life that a challenge and an issue that I have had that I had faced that I couldn't change. So if I, you know, had a job, I didn't like I could change it. If I didn't like what I was taking in school, I could change it. If I didn't like where I was living, I could move, you can't change Down syndrome, you cannot take chromosomes out with people. And so I had so much work to do on my thinking about disability and Down Syndrome and cognitive disabilities, that I was forced to take on when my daughter was born. And I did take it on, and I worked through it with a counselor, and then just, you know, by myself eventually, and it was very freeing. So it was very freeing to just be able to let go of my judgments of things all the time. And to really accept my daughter for who she was and where she was at and really celebrate every single milestone that she went through, for and without comparing her to other children. And so I did some work with mindfulness, mindfulness is when you, you sort of just you pay attention without judging what what you're seeing. So I could really pay attention to where she was at the milestone that she was working on, and then really celebrating when she got past it, or when she met the goal that she was working on. And I still do that to this day. And it really allows me to see her for her without comparing her to other children or her sisters. Or, you know, her peers in her classroom.

Scott Benner 11:45
Right. What seems like a wonderful gift actually.

Johanna 11:48
It really was. Yeah,

Scott Benner 11:51
yeah. Wow. Okay, so my last question before I move back to P is, are there other autoimmune issues in your family? Line?

Johanna 12:02
Yeah. So there's no, there's no type one diabetes? My grandmother had hypothyroidism. And I think she had I forget what it's called. But when you lack B vitamins, pernicious anemia. And that's it, as far as I know. So it was out of the ordinary Oh, my husband's side, they have lots of hypothyroidism and high blood pressure. I don't know if that's family has it.

Scott Benner 12:32
You just get it when you get it when you get your license

Johanna 12:35
breaks? No, they're polish. And so I think it's actually very, very common in the Polish community.

Scott Benner 12:42
Yeah, that's interesting. Okay, so I'd like to take a little time to understand what it's like to raise a child is it is Down syndrome, like, I don't know, the phrasing, like I want to say downs, but I don't know if that's okay. So,

Johanna 12:57
in North America, it's down. And so in Europe, they say downs, but in North America, it's Down Down syndrome. You can also refer to it as teach you one or Trisomy 21.

Scott Benner 13:14
For me, that's not known as fine. Yeah. Okay. Sit down. Okay. But Down syndrome is okay, as well. Oh, yeah. Got it. Okay. So is this something you know, in utero? Or do you learn at birth,

Johanna 13:32
it can be both. So we did do. So the triple screen at around 12 weeks, and our chances of Down syndrome are higher. So it was one in 17, which is about a 6% chance. And at that time, we just thought we'll just wait and see what happens at the 20 week ultrasound, see what we can see. Because oftentimes Down Syndrome comes with heart defects or other kinds of differences in utero. And so we thought we'll just deal with it when if we see something different. So we get to the 20 week ultrasound, everything's perfect. She measures perfect. She's good size, there's like absolutely no differences. So we really just, you know, push it to the back of our heads. This isn't happening. She's not gonna have Down syndrome or she's perfect. And so my Waterbrook early, around 36 weeks, we went in, had her she loved muscle tone when she was born. And they immediately suspected Down syndrome. So we just went through the whole diagnosis process. She needed a little bit of extra help when she was born with the eat six, eat, suck, swallow. And so she wasn't NICU for a couple of days and then was really stressed after that, where we went through genetics and then we got connected to something called the Down Syndrome clinic, what was in our area, and we started receiving therapies right away. So we've got PT, OT and speech therapy, which is really for eating at that time, and then connected to other families as well, who had children right around the same age as us. So we have, you know, four or five families that we're quite close with that have 12 year olds with Down syndrome now,

Scott Benner 15:16
right? Are you able to? I don't know if he can think back that far. But are you able to? You're able to absorb it when you're learning it? Or is there so much to do that? You go on autopilot and follow what you're told?

Johanna 15:38
That's hard to say. I mean, it's 12 years. Yeah. So there was a time when I just had to wait and let my baby be a baby. For the first couple months before I was ready to jump into the Down Syndrome clinic and start with the therapies. It was a hard time. Yeah, for us. But once once I got going, and once I realized, this is what I need to do for my child, to give her the best chance, then I just did it.

Scott Benner 16:12
I want to I want to ask, but I don't want to infer, but is that a? Is it a? Is it a feeling of being let down? Is that shock? Like? How does it? Like? Do you know what I mean? Like what's the core value when when something this unexpected happens?

Johanna 16:32
I think there's something different when you know, right from birth, that your child is disabled, and that their life is going to look very different from your life. And so I really had to work through that, and what it meant to me, and then what it meant to her experience in the world. And it took a while. But what I came to is that it's okay to have different experiences in the world. And that, just because her experience will be different than mine, it doesn't make it less valid. And it doesn't make it something sad or a tragedy, she can have value and worth and that her value and worth doesn't come from her intelligence, or her lack of disability,

Scott Benner 17:20
or the way you expect life to go. Or your expectation on it. So what is that experience? I'd like to break it down a little bit like what does that experience look like? As an infant? How does it How does it differ from what you saw with your twins,

Johanna 17:34
right? So everything was just slower. So it's a slower pace of meeting milestones. She had difficulty with feeding right right from the beginning. It took her longer to, you know, sit up, to crawl to walk. But you know, she was my first and so I just wanted her to get to reach those milestones, and to, you know, to beat the ideas of what it means to have Down syndrome and that you're always going to be developmentally delayed. And then when I had the twins and everything was so fast with them, I really could look back and and feel happy for the slowness of the pace of what happened with her. That, you know, it was okay for children to take their time. Like, when you look back on your child, your child's growing up, like that period of baby and toddler hood is so fast now that they're eight years old. And you know, it's like the majority of their life is going to be as adults, and as these, you know, amazing little independent beings. And so to have like a really slow period at the beginning. I think it's okay.

Scott Benner 18:46
Did it feel a little like you got to enjoy it more?

Johanna 18:50
I did, except yes and no. So I looking back, I enjoy looking back on it, but during the time that that I was still going through that intense period of adjustment, so that I probably didn't enjoy it as much as I could have had I had a little bit more perspective.

Scott Benner 19:05
Yeah, I would imagine. I I don't think this is obviously an apples to apples comparison. But I find myself I get I get upset with myself if I'm in a in a regular interaction with my family, and I don't look them in the face. Like you know, when you're doing something else and talking to somebody, I find in hindsight, I look back and I think you know that he's not gonna live here one day, and I and I had that conversation with him. I wasn't looking at him. It makes me I don't know, it makes me I try. I guess that's what people talk about being present maybe. But I just tried to, to remember that, like, we can stop and do this thing right now. Like, you know, the other day I had some work to do. It was for you guys. And I realized my son was downstairs watching a baseball game, and I just I just stopped what I was doing and went downstairs and watch the game. with him, and we talked and watch the game and stuff and, and I just thought like, I don't know, like this moment only it's only here one time, you know. So that's what I meant by like, enjoy it.

Johanna 20:12
You know? Yeah, it's time you don't get back.

Scott Benner 20:14
Yeah, it's I don't know you don't realize it till until you get older and they get older, usually. So okay, so. So that's her like in that kind of infant experience is that everything developmentally happens a little slower. But what happens when you get to the next leap? When you're four years old and you're expecting? You know, like most kids are getting ready to go to school and things like that. Is that thing happening for pee as well or?

Johanna 20:41
Yeah, yeah, so we have early intervention preschools here. And she did two years of an early intervention preschool, so half days, and then during that time, her sisters were born. And then half day kindergarten, and then regular school. And so we have a really, really wonderful school board that my daughter goes to, and it's fully inclusive. And so when you have full inclusive school boards, it means that they have more money to spend on EAS to help kids in their regular classroom. And so that may not work for some families that really works well for ours. And P has always had an EAA with her in the classroom. So from kindergarten up to grade seven, now, she has an EN in the school, or one of a couple of different EAS during the day.

Scott Benner 21:36
Education Assistant education assistant Yeah, yeah, I was guessing. But I wanted to be sure that's fine. Yeah.

Johanna 21:43
And so and that person helps her with adaptive curriculum that can help her with daily living tasks. So taking her to the bathroom and back, helping her open her lunch kit and whatnot, she can do that by herself now, but her fine motor skills are quite delayed, and so even been able to open her lunch kit or the packages by herself, she would need help, potentially. And so that person would do that for her, and then help her with her death score,

Scott Benner 22:12
because well, her I'm sorry, less

Johanna 22:15
adapted schoolwork. Okay, so her schoolwork looks a little bit different than her peers that she's working on a couple of years behind them. But she, which is fine. She's working at her level, and then she still gets exposure to the other ideas and the discussions that are happening in the classroom, which I think is to her benefit, whether she can express, you know, her understanding of those ideas or not.

Scott Benner 22:38
So when does it speaking come into play?

Johanna 22:43
She starts around between two and three, really talking. And before that, we did a lot of signing with her. And so she learned, you know, she had well over 100 signs that she knew and that we did with her, and that she brought with her to preschool. And so the signing was really a bridge to her talking. And then really helped with the articulation or understanding because her articulation is quite impacted in her speech. So you know, she could say more, or help, please. And from time to time, I still am in science now. And she will still find like sorry, on her chest if she sorry for something because she has a hard time saying it out loud. But it was really quite a nice bridge for all of us.

Scott Benner 23:31
Okay. All right. So your expectations are, you're trying to get her to what like, I mean, if I if I send my son off to high school, my expectation is he's gonna learn a bunch of stuff and either go to college or trade school or something like that, and then he's gonna leave here and ruin some other girl's life the way I ruined his mother's like, you know, like, that whole thing is gonna happen. Yeah, so, but what what are your expectations for pain and your goals,

Johanna 24:00
that's to gain as much independence as possible. So to be able to, you know, bring up a reading level, she's, she can read around a grade two, three level right now, which actually isn't terrible. So if we could bring that up to maybe grade four, or five before she leaves school, that would be amazing. I mean, that's the reading level of, you know, the lower, like the sun kind of, say, newspaper, if anyone reads newspapers anymore. So to bring up her reading level, to be able to do you know, a little bit of math and to bring up her independence level, so that she can reach as much independence as she can. As as a young adult, and you know, part of that independence is her diabetes management. And so we do have her involved in her diabetes management, so she has her own phone. She can look at her number on the phone and she can tell us if it's a good or bad number, so she knows that you know about eight is a bad number. And then below 3.9 is a bad number as well. And the rest of them are good numbers. And definitely those colors on the Dexcom app help, right?

Scott Benner 25:11
Well, I have an idea for you. Actually. I'm going to tell you in a second, but I want you to tell me, are you thumping your foot or tapping while you're thinking or is that coming from somewhere else in the house? Because I think you're making points and tapping something.

Johanna 25:24
Oh, I was tapping my hand. Yeah. Sorry. Sorry.

Scott Benner 25:27
I have to stop Jenny from doing it too, by the way. Okay. She gets it back. And I'm like, stop striking the desk. We're recording this. You've been doing this for years. So what I was going to tell you is that just over the weekend. When you have diabetes and use insulin, low blood sugar can happen when you don't expect it. G voc hypo Penn is a ready to use glucagon option that can treat very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to G voc glucagon.com. Forward slash juicebox. G voc shouldn't be used in patients with pheochromocytoma or insulinoma. Visit G voc glucagon.com/risk. Are you looking for the diabetes Pro Tip series the bold beginning series asks Gatan Jenny algorithm pumping mental wellness defining thyroid defining diabetes all of the series within the Juicebox Podcast Well, if you're looking for them, I can tell you where to find them. If you're in the private Facebook group, they're all listed in the featured tab of the group. Or you can go to juicebox podcast.com. And go up to the menu at the top. And you will find links to all of them, you'll get lists of the episodes that include the episode number, and you just have to go back into your player, find your episode, and you're on your way. You can also listen to Juicebox Podcast DICOM if you don't want to be bothered with all that player stuff, though, honestly, that is the best way to listen to a podcast. That's pretty much it. Everybody, I appreciate you listening. I'm gonna get you right back at Joanna, a lot of podcast left for you today. I hope you're enjoying it. I'll see you soon.

Just over the weekend, I had an interaction with a gentleman, I think his name is Kevin. And he invented something called glucose. And Jenny told me about Chase like, Hey, I gotta glucose. Have you ever tried this? And I was like, Jenny, I don't know what you're talking about. And she goes, Well, I heard about it in your group. And I was like, Oh, hold on a second, I do know what you're talking about. So it's this little kind of light. That's a, I'm holding my hands up, like maybe it's a softball size I'm imagining and, and it through your Dexcom. I'm assuming she has Dexcom he has that right through your Dexcom credentials, you log into it, it goes on Wi Fi, and you assign colors to number ranges. And it just changes slowly. As you and I was thinking maybe that would be that might be great for her actually. You know, it definitely could be Yeah, just as you were describing, like we because you've taught her like, you're you're basically teaching her ranges by showing her like here, come to me, I'm assuming if this number is in the space, is that how you've set it up with her?

Johanna 28:26
I'm just more we have her check regularly, and then tell us what the number is and tell if it's good or bad. Okay, and so if it is, I mean, we know when it's bad because the alarm goes off. And she knows what the alarm means.

Scott Benner 28:38
But you're also trying to teach her for I mean, yeah, I just wanna I hate to say this, but like, is everything in your life the focus of when I die? Because that's how it would feel to me, like, how was this gonna work when I'm not here anymore? Would be every one of my concerns. I feel like,

Johanna 28:52
yeah. I mean, no, that's not the focus of my life.

Scott Benner 28:56
I might have overstated that, but you don't I mean, like, it's got to be the back your head on some things, right?

Johanna 29:01
Yeah. Yeah. So I mean, I can't tell the future. But people with Down syndrome tend to not live as long as you know, the typical population. And so, you know, my hope is, is that she has a really happy life until it ends and that I'm still here. And, you know, if not, her sisters will be here. And we live in a place where she would receive funding for like a staff member to live with her. Or she could live in a group setting with staff. So I know that she will be taken care of once we're gone. It's just how that looks that we don't know.

Scott Benner 29:39
So I'm looking here is the is the is the average age for a person with Down 47. Is that right? Yeah, yeah, that sounds right. What what is the what's the physical thing that causes that Do you know?

Johanna 29:56
Well, so it's hard to say because really It's only people with Down Syndrome have only been treated well, for the last 30 or 40 years. And so, you know, oftentimes before that families were told to put their children in institutions where they were mistreated terribly, or their medical concerns were not treated ethically, or the way that you would treat a typical person. And so even in 1980, there was a case where a baby was denied. A newborn was denied medical treatment on the recommendation of the doctor. And the parents took that recommendation. They went, I think, to the Supreme Court, and they allowed the baby to die. So in today's day, that would never happen. But there was a lot of medical ableism against children with Down syndrome. And people with Down syndrome. They wouldn't treat the hypothyroidism they wouldn't treat birth defects like the heart conditions, and then they were allowed to die

Scott Benner 30:59
or even like you're describing like, like not a not a natural desire to eat like those those physical functions like sucking and like that stuff, too. Oh, that's crazy. Hey, sit on your hands for me. Pick up your pick up your thighs and stick your hands on it. Okay, tap on your thigh while we're doing it, it's fine. You know, you just use the word that I'm a little aware of. Medical. I'll be using our bliss. Oh, ableism ableism. Sorry, I see that word. And I every time I see it, I'm like, I look it up. And I'm trying to make sure I remember but discrimination in favor of able bodied people.

Johanna 31:41
Or non disabled people? What

Scott Benner 31:42
does that? What does that look like in like real world? Like function? Like how can i How could that happen?

Johanna 31:51
So a friend of mine went to the doctor because her daughter's her daughter is Down Down Syndrome her I was turning in. And so when regular kids have their eye turn in, they see an ophthalmologist, they get treatment for it, you can have surgery for it. And the first doctor that they went to, well, we don't even know she's using that idol to see because she has Down syndrome.

Scott Benner 32:17
You probably need your I forget it. Oh, I get it. Okay. All right. All right. All right. So I'm sorry, how does that look in, in the zeitgeist in when people do something that's not so material to you, like a doctor who can actually say, No, I'm not going to give you care? Because you have Down syndrome, and you're probably not using your right. Like, how does that work with just? Do you know what I'm saying? Like, where does that term? I'm not asking this question, right? Hold on a second. I didn't sleep much less like I have a daughter with diabetes. So give me a second. How could I do something insensitive as a person who doesn't have actual agency over your daughter? Like, what would that look like? You know what I mean? Like, what do people do around you that falls into that category? Is it? Is that possible?

Johanna 33:16
Um, no, but like, for me, personally, I while I would always, I would always challenge someone who chose, you know, said I wasn't I'm not going to cheat them because of Down syndrome. Or I'm only going to look at this because yeah, I don't see that happening around me personally.

Scott Benner 33:36
Okay, so I'm now remembering the context I saw somebody talking about they had a spouse who was having border like they, I think they thought of, maybe they had borderline personality disorder. And they started talking about the spouses. I don't know overall behavior, and set and attaching it to the idea of the of the borderline personality disorder, and a third person came into the conversation and said, Be careful not to be and they use this word, which Why can I not pronounce it? Say it again? For me? Medical ableism No, no. Why can't I say A B? L e is what is that's ableism ableism. Why am I not saying oh, it's the way it's split up in front of me. Okay, so somebody came in and said, Hey, make sure not to be like, you know, ableist because, and then I couldn't figure out what they were saying. And so I guess what they were saying was don't just blindly attribute the behavior to the disorder. Is that what a disability Do you think that's what I as I take you way down the path, it has nothing to do with your story, but I just You caught me thinking about it and you caught me on four hours sleep so so I might, I might have ADHD at this point in the morning. The two of us together are going to be terrific. Okay, all right, well,

Johanna 35:04
so, like a parallel example would be, you know, going in and, and saying, you know, sorry, P is doing this behavior, and someone says, oh, that's just Down syndrome, or you know, has a symptom or it's just down syndrome. without really looking into it. That's ablest.

Scott Benner 35:19
Okay, just disregarding other operating options, because you have this thing and just saying, Oh, it's definitely that. Okay. Yeah. Thank you. I appreciate that. I hope everyone listening appreciate it. But I appreciate it. I always like why you're like, Well, I never quite understand when that you that words being used in a No, I do so great. Okay, so and I caught you saying her names, and I already wrote it down. So I'll take it out for you. Don't worry. Okay, so you wanted to be I wanted to go back to something I have one last thought, right. You mentioned that she can even have trouble opening her lunch kit or opening her food is that still at 12 years old an issue?

Johanna 36:05
Not so much. So she has developed some skills around that. So she's a highly picky eater. I call her a restrict highly restrictive eater. There's only about four or five foods that she'll actually eat. And one of those is goldfish crackers. So we got the small the individual packs of them because we can you know how many carbs are in them. And she can't open them by herself with her fingers. But she can get a pair of scissors and cut open the top and dump it into a ball. So she has learned some coping skills around that about how to do things or how to get things done work around her. Her poor find muscle control.

Scott Benner 36:46
What are the other foods that she'll eat?

Johanna 36:49
Right now, hotdogs, cooks carrots, goldfish, and ice cream sandwiches?

Scott Benner 36:56
How do you? How do you get nutrition to her then does she can she take? Like, supplements? Or what do you do?

Johanna 37:05
I'd like to she would take a supplement, there are no children's vitamins that she will agree to eat, so she won't eat gummies and then she won't eat any of the fruity jewels. Cuz she doesn't like the taste of candy. Okay, so she, we have had, like, it's sorry, my hands again.

Scott Benner 37:23
I've been doing it your whole time, John, I just see you. Even when you thought you weren't doing it, you were doing it. I used to and by now we're all we're all on board with what's happening so I can feel I can feel your anger, your anger. You do a great job. Like just so you know. At the moment, I can see Joanna but she can't see me and she just she's answering her questions so thoroughly. But she sort of disappears a little bit in the back of her head while she's answering them. Like your head goes back a little you're looking up a little and you're just you're doing a terrific job. By the way, if I if I gotta if I gotta live with you tapping on something, don't worry, I will. And I don't want you to feel uncomfortable, although, so far you don't appear to be aware of it. So I don't think you're uncomfortable. But but don't don't think about it twice. Please. Except sit on your hands. Don't do it again. No, I'm teasing it. Okay. So there are only a few few foods actually. And so textures are a problem tastes are a problem. And it's not possible to negotiate with her.

Johanna 38:25
No, we just, we just cannot get her to eat foods that she will not eat and just she just will not do it. And if we get into any of those really negative battles where we're trying to force her to eat, it really just makes her mistrust of us in a food worse. And so we don't do it. We don't get into Excuse me. Battles about food. Okay, I'm

Scott Benner 38:50
sorry, I got coughing I know you do your let me ask you while you're taking care of that is have Have there been foods that she would eat that she will no longer eat?

Johanna 39:00
There happen. So we've had a it's been a really difficult year this year. So she was she was diagnosed with diabetes. Three months later, she got COVID She became dehydrated, she had a stroke. And after her stroke her her eating and drinking was impacted. And so she was fully to bed for quite a while while we worked on getting her eating and drinking skills back. And during that time, her food restrictions became worse. So she used to eat a variety of different proteins before so she didn't any different kind of protein. She'd eat, like pasta with meat sauce, and we could chop up sort of small vegetables in there. And now she won't eat many of those things since that time. And so it really has impacted her in her picky eating with the stroke and then having to go to the feeding tube. So she still has an NG tube. So she's a tube that goes through her nose and then We will be moving to a G tube. So that's a tube that is on her belly that connects right to her stomach, this is more of a permanent route that we're gonna have to take. And so we have to do that for two reasons. So one is because her picky eating is so much that she does not take in enough nutrients to sustain herself. So previously, she was she always took in enough nutrients and enough calories to, for her to learn and grow. And we had seen an eating clinic previously. And they said, Really, we just recommend that she get a multivitamin, if you can get one in her butt, but they didn't recommend supplement, or supplementing up until we had the stroke. And we had to. And then the second reason we need the feeding tube is because we we need to manage her fluid levels. And so they said that the dehydration is really what caused her stroke. And she's not taking in enough liquid now by mouth to manage your fluid levels. So we have to keep the to bed,

Scott Benner 41:03
did the stroke have any long term effects

Johanna 41:06
just with eating and drinking. So those are the big ones, it was a right sided stroke. And she did regain all of the her muscle control and function from the stroke eventually. So it came back within about three months. It was pretty much back to normal, except for the eating and drinking.

Scott Benner 41:25
How do you so what I'm hearing is that she has a choice and she doesn't like the choice. It's a no. But now but now we're talking about things that I assume she wouldn't agree to like a feeding tube or something like that. So how, how is it? How do you get to those things?

Johanna 41:41
It's really hard. And so we throat you know the whole experience, we perpetrate medical trauma on her. And so it started with the diabetes. So with the second day we had to hold her down to do finger pokes. And even to this day, she doesn't allow us to do finger pokes, we do toe pokes. That's the only thing that she will allow us to do. And even then it stopped setting for her. So we did get on the CGM. Within three days of her being diagnosed with diabetes, they got us on a CGM right away so that we didn't have to poke her as much. But we were put on a lever to and with a lever to you're still supposed to poke to confirm those. And so we were poking her multiple times a day, depending on what the sensor was doing, which was terrible. Like it was really, it was not good. And it was causing her quite a bit of distress, which is why we did eventually move to the Dexcom which is significantly reduced the amount of pokes that we have to do for her. Yeah,

Scott Benner 42:47
even and then even the CGM honor. Like

Johanna 42:50
she's not bad with a CGM. She's okay with that. Just one poke. And then it's done.

Scott Benner 42:55
But it's not. It's not like a it's not a thing where you say to her, hey, you know, we're poking your toes and you hate that if we use this less toes, like do you? Can you go through that? You do?

Johanna 43:05
Yes. Yeah, definitely. Yeah, this is a we don't have to poke you as much.

Scott Benner 43:09
And she's she's got she'll be like, alright, yeah, yeah, so

Johanna 43:13
she's good with the CGM. She finds we are in a pump now. And so we did jumps through hoops to get the pump early. So we had the pump within three months of diagnosis, which is very unusual in our province. They asked you to wait a year, but I was really getting hold of our first appointment. So what do I have to do to get to, you know, to get the pump, I did all of the pre work that you had to do. I watched the, you know, the video that I need to watch. And then while we were hospitalized for the stroke, they agreed to put us on the pump while we were there, John,

Scott Benner 43:44
I don't know anybody who would have the heart to tell, you know, to something you said that would help your life be easier or your daughter's life easier. I'd be like, let that lady have what she wants. And but Yeah, no kidding. Yeah.

Johanna 43:55
So they really worked with me I was I was really happy with it. But still, she doesn't like the pope from the pump. And she gets she finds it really upsetting. Last week, we were going through a pump change, I taken it off, and we were just getting ready to put it on. And she said to me, you say sorry for the Poke mom, you say sorry for the Poke. And she said it over and over and maybe apologize to her over and over. And I did obviously because I don't like having to do things to my child that she is not okay with and then hurt her body. But we have to, right. So I have to, you know, create medical trauma for her she has to live through medical trauma, because this is the only way that we can manage your diabetes.

Scott Benner 44:36
Well, I you know, I have to say, I, I've been through that. I think a lot of people have been through that. But the difference for us is that it was going to stop at some point that my daughter was going to understand or you know, create an understanding for yourself. And I mean, you know, I think we've all chased our kids with a needle in our hand. But, you know, the idea that one day, this would become normal. We won't do this anymore. You're stuck in a? Yeah. I mean, now, yeah. For now, do you think it makes you make sure? So what do you do? Like, I'm assuming you go to her care team and the people that help her and say, look, here's one of her struggles. How do we get past this? Is it something they work on? Or is it just you just kind of hope?

Johanna 45:19
No. And it's not anything I brought to her care team, either. It's just something that we work through at home with her, and that it just takes longer for her to process and for her to develop understandings about things. And so you know, even the other day, it seems off topic, but it's not. She said to me, you know, I really miss my, I miss grandma, and I want her back. And grandma died five years ago. And Phoenix was, you know, seven when grandma died, but it still comes up for her. That is something that she's processing five years later. And of course, I'm still processing five years later, too. But that, you know, this understanding of grief and loss takes longer to work through. And I think that there is grief and loss with diabetes in terms of, you know, your understanding of what life was like before and what life is like now with diabetes.

Scott Benner 46:18
Wow, that's a powerful actually the that came up for like the Wow, okay. Or, I mean, it's been 45 minutes, and I, I stopped myself every 35 seconds from asking you if you're okay. You know, I'm fine. I assume you are, you wouldn't be talking to you about it, but it's still Mike, are you okay? Are you okay? Because, I mean, you live in a frozen hellscape. In Canada, I don't know exactly where I'm you know, whatever. But you say that,

Johanna 46:53
but we have had the nicest fall that in, you know, in like living memory. It is 2122 degrees every day for the last six weeks since summer ended? Which I know what's the conversion for that? 40 like 70 something.

Scott Benner 47:10
Okay. All right. Well, don't ruin my by ruin my misunderstanding of Canada, please. I just wanted to say do you run out in the snow often and scream into a pile of it? Like how do you like, like, when you when you have that thing? Where, you know, you feel like you're not just feel like but you are clearly creating medical trauma out of need? Like, do not like you don't look like you're drunk while I'm talking to you. I don't see. Oh, I don't see any heroin needles behind you. I don't know why, but like, what do you what do you do for yourself in that situation? Or do you not stop to think about that?

Johanna 47:49
I try not to stop to think about it. Like I just have to the only way passes through.

Scott Benner 47:55
Okay. I understand. I guess it makes the eight year olds ADHD seem like nothing, huh? No, no, no, no. So so then you said then that I'm kind of trying to lead to a question when you have a child who has this much need. And I want to understand like in a 24 hour period, how much time do you think you give to pee? How do you get to something else when other people have needs as well?

Johanna 48:22
Yeah, there's lots of downtime in between when we're doing diabetes tasks and not. And so there's lots of time to spend with the other two, we have a really nice bedtime routine that I spend time cuddling with the twins right before bed. So we do they each get 15 minutes, and then we switch. Then iPads are off or lights are off and then gets sorry, pee gets cuddled to sleep. And the other two go to sleep by themselves, because she doesn't pee doesn't get cut off time. Before lights are off. So it's just a nice balance. We do I will spend one on one time with with each of the twins, I'll take them out on an errand, or we will do mommy daughter dates. And I tend to do those with the twins and not with P because P does get a lot of our time and attention.

Scott Benner 49:14
Okay, is that what so this peanut get cuddle time because she doesn't do well with it or because you want the other kids to see that she doesn't get everything. I'm trying to figure out where your thoughts goes

Johanna 49:26
that she doesn't get it. She doesn't get everything. And she mostly likes just to be cuddled to sleep. She doesn't care if she gets the cuddle time before. Gotcha. Yeah, so it's just meeting each kid's needs in a way that works for them.

Scott Benner 49:41
I would take her cuddle by the way if you were around like a very empathetic lady. I think it would be nice speaking out keep that in mind. Yeah, well listen, my wife got sick on a business trip. I might be in the in the market for a wage earner around my age anytime now because she's coughing and holding her chest and I'm like, Oh, this is it. I told the kids already has like, you know, do you want me to try a blonde next time? Or what do you want to do? But my daughter, of course, if you heard her on the podcast doesn't trust Angular job blonde with. I don't know if you heard her say that. But she's like blonde ladies with real Angular faces. I don't trust them.

Johanna 50:25
I missed that part. But I did listen to both of her episodes. I really enjoyed them.

Scott Benner 50:29
Or maybe this is something she's only shared with me that I'm assuming she said on the podcast. Anyway, she, I'm glad you enjoyed them. i Wow. My next question was about your husband. He's a saint, or he's chained to something, what's going on?

Johanna 50:48
She's neither. So he's involved in in almost as much of the Tata diabetes and feeding tasks as I am. He, as I'd say, his management of her diabetes is equally as good as mine. And it took them a little while to get around to we really need to keep her blood sugar's quite low. And he's there now. And so he does a really good job of managing them in my absence, or when it's sort of his turn to do it. So we, we have some really great a onesies. So our a onesie at diagnosis was 13.82 months later was 8.0. And five months later is 5.1. Okay, yeah. That's amazing. It was amazing. Yeah, yeah. So one of the benefits of her being a picky eater, is that you really get to know the foods that she eats. Yeah. And I really know how to dose the foods and she eats. So we do a really good job of keeping her blood sugar's in range. And when they're not in range, it means that she's gotten up earlier than I have, and she started eating, or that her pumps gone, and that we need to replace the pump. Yep, so either of those two things.

Scott Benner 52:02
She doesn't do anything with any fat or protein that would drive up blood sugars later.

Johanna 52:07
She does. Yeah, so the hotdogs and the ice cream sandwiches, typically cause a spike later on. And then that's mostly at night. And so we really see between sort of nine and midnight, her blood sugar spikes, so I'm, I'm really trying to work with her Basal rate at that time. So I've just increased it the other night. And then it went up a little bit last night. So I corrected and I might try and increase tonight. It's hard, though, because sometimes she doesn't get the rise. And then that Basal rate is too high. So oftentimes, we just correct, but we're, I'm quite on it with the correcting. So we'll start at like seven correcting

Scott Benner 52:45
earlier, I was just teasing you because I assumed he would run away, but he sounds like a good guy. So

Johanna 52:50
no, he's a really good guy. You know, he, he adjusted much better than I did with her down syndrome diagnosis, and he was really a rock at that time. And his perspective was always like, she's fine. She's perfect. It'll be fine. Yeah, that was, you know, and

Scott Benner 53:07
I just assumed that every time you left to go to the store or something I think by that said, She's not coming back. Every time I say goodbye to you, it'd be like the last time I went by John, I love you. It's been great. I know you're not coming back.

Johanna 53:22
There's something about being a mom that there are you want to do that, right? Yeah, you just do it.

Scott Benner 53:27
Yeah, that's something it really is cool. So the diabetes stuff. You know, I'm learning that when people say they're on a pump, and don't say it's an omni pod, they're trying to save my feelings somehow, which is not necessary. But what

Johanna 53:39
knows? It is an AMI py. So she's on an heiress. And one of the things I disliked about it is that it's because it's the like that first iteration, where you have to use the buttons all the time, and it's not a touchscreen. And so I really feel like if we're going to move down the path of, of her creating, learning more independence with her diabetes, she has to be able to use the pump by herself and she can't with the

Scott Benner 54:08
arrows because the old PDM still,

Johanna 54:11
that's the only one that's funded with my potential program right now. That's fine. So it would be far too expensive to do it on our own.

Scott Benner 54:18
So I blame Canada. Yeah, for sure. Absolutely. Well, and is that another song in South Park? Sure. Is. Yeah, I just thought I didn't make those words. I've heard those before. So yeah, so I blame Canada so you would prefer to be on the dash or the five? Probably the dash.

Johanna 54:37
I, you know, I don't know about the five with the target blood blood sugar being sort of higher. I mean, what's amazing is that, you know, our our ability to manage her insulin and hurry when z is you know, at the level of the LP five or exceeded. And so I don't know. And I have considered looping. I'm not quite there yet with, you know, building the app myself, although we do have a Mac that I could build it on. And I'm just anyway, I'm still just mulling it over to see if that will work for us. It will work for us in terms of getting her overnight level really dialed in. But there's a lot of work on my part to get it up and running.

Scott Benner 55:28
That's exactly what I was hearing. I was like, when are you going to do that? Exactly. Right. Yeah, exactly. And learn a new system and everything else. Yeah, yeah,

Johanna 55:37
yeah. But I do think, you know, something to, that I would like to look at is, is the, you know, the new, even, you know, the Dexcom or the Opie five, how user friendly? Is it for people with disabilities? Like how user friendly? Would it be for someone who doesn't have fine, great fine motor control? Is there a way that it could be adapted, so that to make the screens really simple, or make the app really simple for someone with intellectual disability so that they could, you know, just, you know, put in their carbs? And, you know, press go and be able to do their own insulin?

Scott Benner 56:11
I have to tell you, I don't think the loop app would be friendly for her. No, yeah, that would be because there's a lot of like, fine. There's a lot of fine touching, even like changing. Like, as I'm thinking about it, like if you put in a Bolus for a meal and decide later, oh, I wish that I wish I would have told it. It was 35 carbs, not 30 carbs. Just touching that, like there's double tapping involved in to highlight things. And if that would be, that might be difficult, honestly. Yeah. Oh, son. I wonder if another glad. So no, no, you need somebody to design a simpler screening system for it.

Johanna 56:47
Exactly. Like I think that would be a great way. I would a great sort of side project for someone to take on.

Scott Benner 56:55
Yeah, even older people, it would be valuable there too. Yeah, yeah.

Johanna 57:00
Can we do an adopted app for people with disabilities?

Scott Benner 57:03
By the way, I had to close the browser in front of me, because now I look at the word ableism. And I think how the hell were you mispronouncing that, you idiot. I just kept looking at it thinking like, how did you? What were you doing? Oh, my goodness. All right. Your. Your you said you take medication for depression, anxiety? Yeah. Okay. And that's working for you? Oh, yeah. Yeah, I mean, because you're in a weird situation where you don't have the, you don't have the benefit of being able to like fall apart. And yet you're, you have a thing that if you were to have a crisis, it's not like something you could just like, willfully stop. So has that happened?

Johanna 57:56
Have I had periods of time that I have been unable to cope? Yes, for sure I have. And, you know, I'm in a really fortunate position, that I have quite a bit of sick leave that I could take from work, which I have done in the past. And, you know, all I really need is a doctor's note to do that. And then it kicks in, I still get paid. And then I go back when I'm feeling better after I work with my doctor. And so that's been really helpful. The fact that I've had that, as you know, as something I can do, where I can really focus on my family. So when P was had her stroke, by took a month off, and then went back after that, and everyone was really understanding. So I work in the education system. And really, there's a, you know, a belief that you really do need to focus on your family first, because that is what's important, and that the work will be there when you get back and it was

Scott Benner 58:55
Does your husband kind of like step it up then at that point?

Johanna 58:59
A little bit. Yeah. Yeah. He

Scott Benner 59:00
has a job I imagine too, right. So

Johanna 59:03
he does. Yeah, so we work opposite schedules. So I work during the day I get home, he goes to work and works in the evening. Okay, so we have some crossover on the weekend. But we do work in some ways. It's like passing ships in the night.

Scott Benner 59:17
Is that something you set up because of P situation?

Johanna 59:21
No, not necessarily for p but for the twins as well. And not and not wanting to pay for childcare? Because there's two of them. So it's more expensive. Yeah. And so we the Pete, the twins have never been in childcare they've never had before and aftercare. We have had a long term aide that works with our family who's been incredible. She started with us when the twins were like three or four months old. And she's been with us ever since. And they're eight now. So we do have in home support. And it's for everybody. It's not just for Pete, that she spends a lot of time with the twins, working with them as well.

Scott Benner 1:00:00
You know, you've highlighted something today that I want to, like, just shine a light on for a little longer. I was interviewing somebody recently, who was having a lot of anxiety around keeping their kids blood sugar kind of perfect. And I said, Well, I mean, that's not what we do. And I started talking about art and going to college and the food changing and how that's impacted her blood sugar's and she's like, well, you're okay with her blood sugar being, you know, when she just said a number. And I was like, I mean, I'm not okay with it. But that's the situation. And, and the sooner you I don't know what it is, I don't know if it's an expectation of perfection that we have, or if that's just people's goal for everything to be beautiful, and easy and well funded. And, you know, everything right, there should be bird singing and music playing wherever I walk. And once you can let go of that, and not do what you were talking about earlier, like, not judge a person against another person or a person against the situation. Excuse me, everything just gets so much better. And, and, and I think what she was saying to me was, but a higher blood sugar could cause problems. And I said, Well, yeah, that's, that's true. But you have diabetes, like, you didn't get the same, you didn't get the same role that other people get, you know what I mean? And, and also not for nothing, but how many things in life are damaging you hurting you are setting you up for some sort of a problem in the future that you're unaware of, that you ignore to or that you're aware of, and you ignore one or the other. So I don't know that a 140 blood sugar after a meal is any different than somebody I see walking, I'm thinking of a person I know right now must drink six Coca Cola a day. But, you know, but doesn't have diet doesn't have diabetes, so they don't think anything of it. And I don't know that there's a difference, if that makes sense. You know what I mean? And and you've been able to? And I know, you said it very simply like, well, this is what had to happen. Right? Like I had to see the world this way, which I think you're right. I think that is what you had to do. But it doesn't mean you were going to be able to do it. Right. You know, and that's really cool. It's cool that you did that. Yeah, it was a lot of work to get there. Yeah, I would imagine, like because, because I don't know how you don't say why me? Or why her or why us? You know, and I did yeah,

Johanna 1:02:30
yeah, for sure. I did. But I did get to the point where it didn't matter why. Because what I came to is that these things happen in nature. Like, that's just what happens is that sometimes, you know, you get extra chromosomes, sometimes tentative things happen, like these things happen. And it happened to me in my body. And it happened to her just like the diabetes did, and but I did with all the work that I did, because of her down syndrome. When the diabetes came, it wasn't that hard for me to accept, it was harder for my husband to accept. But for me, it's like, Okay, I've been down this road before, like I you know, I can't bang my head against the wall because it won't change anything. She has diabetes, let's just go with, right.

Scott Benner 1:03:18
I asked this question a lot in these scenarios, and I'm frequently surprised by the answer. So I'm gonna ask it here. Magic Wand, something can go away. What do you pick?

Johanna 1:03:31
Down syndrome? Yeah, seems Yeah, that's what I because it because it created all the other things, right. So it created the alopecia created the hypothyroidism, it created the diabetes, it created her brain condition that caused the stroke. So for sure, I would take away the Down Syndrome.

Scott Benner 1:03:49
It's the founder of the face in this situation in not a positive way. I mean, I thought, like I said, seems obvious. But the amount of people I've asked questions to where I thought the answers to those questions were obvious. They say something different. Like sometimes people say neither. But I'm, like, fascinated by him. Like you can't even in a in a make pretend way. Pick one. And they're like, No, that's like, okay, where they pick, you know, keeping diabetes over something you would think you wouldn't choose vice versa. So it's interesting to ask the question, is there anything that I haven't asked you that I should have or anything that we've missed?

Johanna 1:04:28
No, I think we covered everything was pretty good.

Scott Benner 1:04:32
Are you saying I did a good job? Is that what you're saying?

Johanna 1:04:34
I am saying you did a good job.

Scott Benner 1:04:37
Because I already earlier said you did a good job and you did not reciprocate so I wasn't sure. Oh,

Unknown Speaker 1:04:42
I'm sorry. No, I'm

Scott Benner 1:04:43
teasing you i God my God. I don't mean that. How many people do you think heard that are like ah, so insecure? Really was just joking. Okay, so how much pressure do you feel in this conference? ation right now not to misrepresent Down syndrome for the people who might hear it or for who? Or for the people who are going to be learning about it. Does that feel like a responsibility? Or have you not thought about that?

Johanna 1:05:14
It feels like a background responsibility. It's a responsibility I always have. When I'm talking about my daughter, and really, I'm talking about one person with Down syndrome, and her experience of what Down syndrome is like, in our experience of what Down syndrome is like, and she's an amazing child. She's easiest of all my children. She's very easygoing. She's, you know, happy and she just loves being with her mom and dad and her sisters. Like, she's really a great part of our family. And so I think it's easy to, to represent her positively. Because our experience of her is very positive. I mean, all the other conditions up until diabetes and then the stroke have been very manageable. And haven't really impacted her life so much. I mean, for sure, the alopecia does, because she doesn't have hair, and she would really like her. And it's one of the first things that you notice about her when you see her. So whether it's Down syndrome, or or the alopecia first sort of, you know, up in the air, which one it is. And so that's been quite impactful. But in terms of, you know, her day to day health has been super good. She's never been hospitalized until this year with the diabetes. And she's such a great part of our family. Yeah,

Scott Benner 1:06:38
that's cool. I see. It's funny, because when when I looked at the list, I thought, well, alopecia that sucks, but great opportunity to wear a bunch of hats. But she can't. That's not the process. Her mind goes through it, right. She doesn't like yeah, it's just this thing's gone now. And it's either a problem for or it's not, and it ended up being a problem for I see. I tell you having more kids, ballsy as hell, you're reading the bravest lady I know. Or were you were high as a kite. I don't know what it was exactly. But I don't know how you made I couldn't, we couldn't even make the decision to have a third kid after the diabetes. Like I that's really, that's really something

Johanna 1:07:22
want p to be alone in the world after my Can I work on? So I really felt like it was important to have siblings. I felt like having my twin. And growing up with siblings was a really wonderful part of my life. And I'm still very close to my twin. And I wanted that for her. Yeah. And, and the twins are amazing. Like, but definitely, you know, a very different experience than having P just twins in general.

Scott Benner 1:07:54
Does your twin have any of the medical issues that you have? No, no,

Johanna 1:08:00
no, no, her kids don't have Down syndrome. They're, you know, totally healthy.

Scott Benner 1:08:05
Her name is lucky because that we call her

Johanna 1:08:10
her name is Meghan. Okay.

Scott Benner 1:08:11
Every time you see her, do you look at it go you mother. Okay, all right. Fair enough. You seem like a decent person. That's what I would do. I'd walk right. And I'd be like, Oh, there's the one that just didn't get any of the stuff. No, no, that's, again, almost mostly joking. Okay, so I feel like we're done. Let me let me tell you right now, because I know you're you're very concerned about I've made a note every time you use PS real name. Every time you cursed. You know you said once once. That's right. You did. I was I was like, Oh, she is Canadian. As soon as that happened, and use your husband's name, do you want that out? Or is that okay? Oh, that's okay. Okay, great. I can't thank you enough for doing this. It's my pleasure. And thank you. Yeah. Do you actually listen to the podcast? Or are you just doing this?

Johanna 1:09:08
I do. So strangely enough, I did not listen to podcasts until he got diabetes. And then I found your podcast within days of her diagnosis. And I listened to obsessively and it's the only podcast I listened to. So I probably listened to hundreds of them now, but I really do find value. I love both. I love both listening to people with diabetes and their lived experience. And I really enjoyed listening to the parents as well. So I liked that you have both on there because I think they're both valid experiences. But yeah, I really enjoy it.

Scott Benner 1:09:46
Isn't it a strange strange thing that the sentiment I can't it's lovely if you to have parents and adults with type one diabetes on the same type one diabetes podcast. Isn't it odd that that's just obvious to me? People sometimes, you know, like or, like, you know, I, somebody's only type two once and I got a note, never have people with type two on again. I was like why this is a podcast or type bonds? I was like, No, that's not what

Johanna 1:10:15
your podcasts you can do whatever you want well,

Scott Benner 1:10:16
so I can pretty much do whatever I like. Yeah. And by the way, I always think this too, it's free Shut up. Just Just so everyone knows, any of your feedback that comes in my first thought is, hey, it's free, shut up. And then I go to your actual the substance of what you've said. But you so i, and this podcast brought you into the world of podcasts. You did not listen to any and now you listened to many.

Johanna 1:10:44
Well, I listened to yours. Listen to any other.

Scott Benner 1:10:49
When you said hundreds you might you've listened to hundreds of mine. Yes, hundreds of years. So I thought well, that's better than what I thought I thought you might you're listening to other podcasts and I was like, No way from the time you can listen to mine. So I'm not thrilled about that. But

Johanna 1:11:02
no, no, I listen to your episodes. Okay. Yeah.

Scott Benner 1:11:05
Well, then that's the review I want from you on Canadian Apple Music, the only podcast I listened to.

Johanna 1:11:12
I didn't review at one point. I don't remember what I said.

Scott Benner 1:11:15
Oh, that's very nice. I am going to turn it into a t shirt and consulted people the only podcast. Anyway, thank you so much for doing this. Would you hold on for one second for me? Sure. Thanks.

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