#1567 Everyone is from Regina
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Leah, a Manitoba social worker, navigates her son's type 1 diabetes amid a family history of autoimmune and allergies.
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Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.
Leah 0:15
Hi there. I'm Leah. We have two boys, a 13 year old and a seven year old and our 13 year old boy was diagnosed with type one diabetes in 2013
Scott Benner 0:34
if your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one you can start your journey informed and empowered with the Juicebox Podcast, the bold beginning series and all of the collections in the Juicebox Podcast are available in your audio app and at Juicebox podcast.com in the menu. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. The episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem Moby features tandems newest algorithm control, iq plus technology, it's designed for greater discretion, more freedom and improved time and range. Learn more and get started today at tandem diabetes.com/juicebox us med is sponsoring this episode of The Juicebox Podcast, and we've been getting our diabetes supplies from us med for years. You can as well us. Med, com, slash, Juicebox, or call 888-721-1514, use the link or the number. Get your free benefits, check and get started today with us. Med,
Leah 2:15
Hi there. I'm Leah, my husband and I and our two kids live in Brandon Manitoba, which is in the prairies of Canada. We have two boys, a 13 year old and a seven year old. And our 13 year old boy was diagnosed with type one diabetes in 2013 Nope. That is not right. That's not right. Yeah, no. 2023
Scott Benner 2:48
sorry. You know, you took me by surprise, because I thought, I actually thought that their child was diagnosed more recently, and then I thought, oh, maybe not. So, no, no, wrong year. Okay, that's okay. So tell me again. How old is is his son?
Leah 3:02
Our oldest Cohen is 13. Okay, so he was 11 when he was diagnosed.
Scott Benner 3:08
Okay, so just two years ago, is there type one or other autoimmune in your family?
Leah 3:13
No, there's some type one far enough back that I don't know that it counts for anything in my mom's family, she had a cousin. That cousin son had it okay, my dad had type two, which I know is not related, but there is autoimmune for sure, and particularly from my mom's side of the family. And I struggle with some of that 10 Cohen had before he was diagnosed with type one also. So it's definitely right in my family, we all kind of struggle with some of the same things and some different things.
Scott Benner 3:55
Well, what did Cohen have before his diagnosis? What else did he have going on?
Leah 4:00
As far as autoimmune he had other diagnoses beyond that. He was followed by a allergist for about three years. He had viral induced asthma. It started about when he was three, I think, and the allergist had said that often kids do tend to grow out of that type, and he did eventually grow out of that type. He also has some eczema and psoriasis, so he's also followed by dermatology, which has been kind of that's been ongoing for Cohen. What about you? Well, I have a Fibromyalgia diagnosis that kind of been queried by other physicians, but it is what it is. So I deal with some chronic pain, but I also have some dermatitis type issues. I. I was diagnosed with an eye condition at the age of 20 called posterior scleritis, at which time the ophthalmologist had told me that that's often associated with autoimmune disease. But other than what I've got, I haven't developed anything new as of late.
Scott Benner 5:21
Okay, and then you said there's other stuff, like on your mom's side of the family too. What else?
Leah 5:26
There's thyroid. My sister has thyroid. Both my mom and I and my sister have psoriatic arthritis, and my mom had a cousin with rheumatoid arthritis.
Scott Benner 5:38
Well, guess what? Leah, I'm counting the cousins daughters type one as part of your family line, because that's a fair amount of autoimmune dripped in there. I think. Yeah, anything on your husband's side? No,
Leah 5:52
not that we know of Scott is pretty healthy. He was actually adopted at birth, so we, as we were preparing to get married, had looked into getting some of the medical documentation from his birth, and there was nothing noteworthy in there about anything autoimmune wise.
Scott Benner 6:18
Yeah. How about your other kid? Do your younger one. Did they have anything
Leah 6:22
so far? Just the viral induced asthma. He's got that
Scott Benner 6:26
too. Okay, interesting. So they both have it. And you live pretty rurally. Well, we're
Leah 6:33
in a city. It's the second biggest city in Manitoba, Winnipeg, I want to see it has about 750,000 and Brandon, where we live, has about 45,000
Scott Benner 6:45
so a lot of people I just meant, like, because you called it the prairie, so I wasn't certain if that meant,
Leah 6:50
like, oh yeah, no, there's lots of farmland around here. And you know, we're kind of the armpit of Canada, so to speak.
Scott Benner 7:00
Why are you the armpit of Canada? I don't understand.
Leah 7:04
Well, we're probably the least desired place to come and visit, because I think we're just seen as you know, a lot of snow, cold. We do have beautiful lakes and stuff like that. We really do. And we get hot, hot summers, but comparatively to places like Toronto and Vancouver and all of BC, really, even Alberta and then the east coast were just not the top I got you tourism destination.
Scott Benner 7:34
So it's May. It's beginning of May right now is it still cold there?
Leah 7:38
It's kind of an odd time, because you'll wake up and it'll be like, and I don't know, I only know the Celsius system, but it would be like plus three or four here in the morning right now. But then today, it's supposed to get up, I think, to around 19 degrees so, and then by Sunday, it's supposed to be 30, but we could still see snow at the same time. Okay,
Scott Benner 8:06
so, so for people like it, like a four degree Celsius is like 39 here. So for us, that's about six degrees above freezing, five, six or six, seven degrees above so above freezing, but not a lot. I would call that cold. And it can go to 30 then,
Leah 8:24
well, on Sunday, yeah, it's supposed to be 30 degrees Celsius, okay, but, but we are not unknown to have like, a big snow storm in the middle of in the middle of summer, yeah, in the middle of May. It's not unusual if that happens,
Scott Benner 8:40
wow. So it can go from, like, for people listening, like, from like 36 degrees to like 86 degrees, which is such a huge swing, oh my gosh.
Leah 8:49
All right, and then the other way, we can go, like, to minus 40 degrees Celsius, which is nasty.
Scott Benner 8:58
And tell me why you don't leave.
Leah 9:01
I ask myself that every winter, I guess, because our family is here, and I see myself as a snowbird, once we retire, is
Scott Benner 9:15
your family that great? You need to be that near to them. It's really cold.
Leah 9:19
Well, yeah, it is, I know. And actually, like, one of the biggest things of why we have stayed because I grew up in Saskatchewan, which is the next province over, which is similar to Manitoba, and I had kind of always thought we'd go back there eventually. That's where my family is, and I again, Cohen had some other diagnoses, cognitively and developmentally related as a preschooler. And I'm a social worker, and I'd worked for in the disability field, well at that time, probably for four or five. Five years, I closed that season out, actually, after Cohen got diagnosed in 2011 but because of that, I kind of knew who the players were, as far as supports in the community of where Cohen would need, and who those people were, and so it was a comfortable place for us to be initially. Then he moved over to the school system, and I don't know it's a Brandon is kind of a neat little place. It's like a big, small town, really is what it is. But all right,
Scott Benner 10:41
you like it there? It's fine. I hear you. I'm not gonna argue there. It just sounds very cold to me. It is, yeah, tell me a little bit about your son's diagnosis. How did it come on, and what did you notice first
Leah 10:51
April, I guess, April of 2023, where there was he had shown a symptom, but I didn't, neither Scott or I connected it back to diabetes like it wasn't even on the radar. But we had taken him. We'd gotten a call from the school that Cohen was really complaining that his calves were sore, and so we picked him up and took him to walk in, and, you know, they sent him for an x ray, but thought it's likely just growing pains, that's normal, and so that's where it was led. The X ray was normal, and we didn't think much of it. And then about three weeks later, it was a weekend, and Cohen was and he was playing spring hockey at the time. It was a weekend, and they weren't playing weekends at the time, so we had friends sleep over, and I took them to the movies and the Friday night, and Cohen, partway through the movie, asked me if he could go get a refill on his pop, which is really unusual for him. But I was like, I did again. I didn't think a lot of it. I was like, Sure, go for it. And then he told me when we left the theater he felt just like a little bit funny, but he couldn't really verbalize what that meant, yeah, yes, and probably having more context and maybe some of his other cognitive stuff will help with this at some point, but the next day, like he kind of bounced back that night, his friends left over, went home, he had other friends come. Wanted to go for a bike ride, so he went along. But we were just getting separate ready, and Scott noticed out the front window that Cohen was walking his bike home, and looked wind dead, and so when he got in the house, he was not feeling great. He didn't feel like eating. He was presenting like he had the flu, very tired. And then on the Sunday, we woke him up and we're gonna go to church, and he was like, Mom, I'm just so tired. And so I was like, that's okay, you sleep. We'll just leave you. So we did that. And then I did notice that day that he was going to the bathroom a lot, and but again, I didn't know much about type one diabetes, so I wasn't thinking about thinking, Yeah, I like Scott. And I had already talked about, like, I don't think he's going to school tomorrow, so, but I, you know, we
Scott Benner 13:33
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Leah 16:07
Yeah, and we did decide that we take him to walk in on the following day, the Monday, and that because this was kind of just coming out of COVID and everything. So he neither him or his younger brother had had physicals in the last couple of years. So I said, I think we should get some blood work done, though. And just like, insist for it. Yeah. So we did, and we got a call about 530 that day from the walk in that saw colon. And he just said, You guys gotta get to emerge right away, and the pediatrician is there waiting for you, so, you know. And he said something about his blood sugars being very high. And so, yeah, I kind of panicked, but we got ourselves ready to go to the hospital, and I contacted my sister. She works for two physicians in Saskatchewan, and one of them is a pediatrician. So you know, she had already kind of gotten her in the role of things, of what we should be expecting with this and initially and and thankfully, it was actually Cohen's pediatrician on Call of that night, which was really helpful for him. And I just for comfort, yeah, Brandon, like, they'll do some minor stuff with kids, but they don't like to touch much when it comes to anything complex. So I could tell that they were, I think actually, Dr Nomani had already indicated that she'd been on the phone with the Winnipeg endocrinology department for peds, and they did some blood work, that kind of stuff. And the initial message was that we were gonna have to go by ambulance that night, run home and get your stuff and come back here. So I was gonna do that. And then in the meantime, of course, like Gray was only about four, which wouldn't have probably been a great scene, having to be there with us all week. So my sister in Regina was working in the backgrounds to help find care for him, and they actually drove out here in the end, and but Scott had called me while I was home grabbing stuff to pack, and said they have decided that they think he needs to be airlifted and so you need to get back here like now. Yeah,
Scott Benner 18:39
can I take a moment to thank Canada for naming a place something that sounds like vagina? I think that's really fantastic. And by the way, I'm one Saskatchewan away from my bingo card being filled up on my my my Canadian Provence bingo card for today. You're like, Brandon Saskatchewan, vagina. Oh, my God, we're all over the place. This is awesome. Yeah,
Leah 19:02
yeah, I'm a Regina. And there's lots of good names and not so good names. You just kind of take them in. I don't
Scott Benner 19:13
know why we wouldn't just call this episode Regina in, because that was that, is that? Oh, what are you called? If you're from there, what is
Leah 19:19
it? Say it Say it again? Oh, usually they see, oh, you're from vagina. Yeah, we all are technically, yeah, fair enough. Everyone.
Scott Benner 19:32
Sorry, your your poor son is very sick. Did you take him back to the house when they said, Go grab your stuff? No, no, he stayed at the hospital.
Leah 19:40
He stayed right. Yeah, right. My husband stayed and Gray came back for with me like we still thought we were taking him to Winnipeg at the time, gotcha,
Scott Benner 19:49
passed the other kid off to your sister. You gathered some things, went back to meet them at the hospital.
Leah 19:55
Yes, awesome. So Scott drove into Winnipeg. It's about two hours from here. And I went on the plane with Cohen. And did you say a plane? Yes, they ended up airlifting him because they felt Leah, it
Scott Benner 20:09
was a plane with little pontoons on it that lands in the water. Also,
Leah 20:13
I don't think it was that fancy. It didn't have seats. It had one seat beside the person you like, for one parent or loved one to sit beside. You know, where your child is laying in a steel kind of I
Scott Benner 20:34
yearn for a simpler life where pontoons on a prop plane is considered fancy. I think that's what I want. I'm gonna, I'm moving back to vagina. What do you think of that?
Leah 20:44
It's not so bad. You have some perks here in this area,
Scott Benner 20:48
has a lot of perks, but it also has a lot of downside. So
Leah 20:53
true Winnipeg probably is more. But anyways, we won't, you know, waste our time on that. They're kind of always in rivalry of who has the least murders, who is the least per capita in the air.
Scott Benner 21:07
You always, you always want to strive for, strive for better. Yeah. So wait, so you flew on how? How long were you on the plane? I
Leah 21:15
think it was about like 40 minutes. Tops 35 maybe interesting. I mean, you kind of get lost in time, sure, probably from, like, flying out and then, because an ambulance actually took us to the airport where we took this medical airplane, so probably 40 minutes leaving, like, taking off and landing, and then
Scott Benner 21:40
it, Where's your head? Then at that point, Leo, like, you just went from I think my kid has flu like symptoms, to I'm on an airplane, like, what are you thinking about at that point?
Leah 21:50
Well, I was thinking he was gonna die. And what I understood when the pediatrician talked to me at the hospital was, I thought they were saying that he was had diabetes, type DKA, that's what my understanding of. Okay, yeah, so I was like, but I also wasn't pulling out my phone at that point googling. I was just worried. And it was scary. It was how quickly he got sick and wondering, like, were there other things that we missed in the past? And, like, there probably was, but I think yeah, for us. And it's funny, because, like, the night before, I was Googling on different things, this could be, I said to Scott that type one diabetes came up that I really wasn't thinking, that's what this was.
Scott Benner 22:45
Is chaotic affair. Statement, yeah, yeah. Can you look back on it and tell me, is that someone's fault on the hospital side for not for not sharing it clearly, or were you just so like bumfuzzled that you couldn't hear anything that was happening.
Leah 23:02
I think it was probably a little bit of both. I think in Brandon, they were panicked, just because, again, when you know any child has anything too serious happening, they want to ship them off to Winnipeg right away.
Scott Benner 23:17
So their hustle was, let's get them the hell out of here. Yeah, okay, all right, okay,
Leah 23:22
you know, you're not thinking that at the time. It was like, I think I could have, like, remained, probably not very calm, but a little bit, if they just continued us on the path of the ambulance. But that's not what happened. So were
Scott Benner 23:37
you panicking? Like, outwardly, would people look at you and go, This lady is in a
Leah 23:42
panic. Oh yeah, I was
Scott Benner 23:46
tell me, like, looking backwards. How would you have handled it differently if you got another I don't want you to get another shot at this, but if you get another shot, if you got another shot at this, what would you do differently?
Leah 23:56
Do you think for yourself? I don't even know. Because, like, I guess when you don't have enough information class, you know, like, it's probably, probably also, again, I acknowledged partly it would have been me and my level of understanding around what some of these terms were, and I was just jumbling them all up together. And,
Scott Benner 24:18
yeah, is this common for you. Leah, like were, did the situation knock you off kilter, or would you describe yourself as having trouble in situations like this? Generally, that makes sense.
Leah 24:29
I would Pro I do, but not ever like this before. Like our healthcare system, as you know, runs a little bit differently. And what the one thing I can say in all of this is that experiencing the world of pediatric care for type one diabetes in Canada, or at least in Manitoba, has been amazing, but it's very different navigating our system as an. Adult, and you know, you wait in the hospital or in the emergency room for 20 hours, they they miss lots of things because they're understaffed, and so it is a very broken system, but not for kids. Okay, so I think more my fear around like emergency rooms is some of my own past situations that have happened that I just hate having to be
Scott Benner 25:27
there. Okay, so hospitals in general are not a good place for you, not really, okay. Okay, that makes sense. No, I'm just trying to understand, like the whole pathway, because, you know, most of your and my communication when this was first happening, you would write me very long emails. I'm sorry. Okay, don't be sorry. You're not the only one that does it. So don't worry. Like, I understand what happens when you get into a panic, but your emails are so, like, long and involved. I will tell you something I don't think I've ever I've probably never said this aloud on the podcast before in the last couple of years. When I get emails like that, I actually feed them into a large language model, and I say, what is this person asking me? Because often it becomes like a stream of consciousness, and sometimes people get lost in what they're saying, or they give you so much information, it's like a book report. And when I sit down to do my my email, I'm already answering hundreds of emails, so, like, when I get to one, I'm like, I don't want to miss anything here, and sometimes I don't have the bandwidth for it either. Like, so, but can you tell me what, like, what prompted those emails? Like, were you scared or trying to figure things out? Like, what place were you in at that time? Well,
Leah 26:43
I would say, like, you have some comrades standing beside you with who teased me about my writing and that I could work a little bit on
Scott Benner 26:54
condensing. Are you talking about your husband? Actually,
Leah 26:57
more so my work like I've had for close to 12 years. And he jokes with me about it a lot, but I and I am actively working on it, because I do go back and see sometimes I'm like, okay, Leah, I wasn't at that time, though, definitely
Scott Benner 27:15
Oh no, no, no. You weren't like, like, I 1,000,000% like, if you made me bet as to whether or not, you were mentally ill or not? I would have gone, yes at first. And then I realized you weren't, like the first one. I was like, oh. But then I realized you were just overwhelmed and trying to figure a lot out. Was it all on you? Like, did it feel like I have to get this all figured out
Leah 27:35
now? No, like, Scott, you know, right in the beginning was a part of things. And we, like, we spent almost a week in Winnipeg. They spent about two and a half days, I think, just getting Cohen's body, like, nourished with whatever nutrients that had lost and hydrated. And then, you know, they take you into the three days. We call it like diabetes school. And so we did that. And yeah, both of us, from the beginning, were really committed to doing Yeah, yeah. And I think too, like another aspect of with Cohen that is challenging for us is, you know, he's he's had some hard things like thrown at him through life, through, you know, just since he was a little guy, if you saw him, you wouldn't think he's different, but you can kind of tell once You start talking, he struggles. He's not autistic, but he has like, and actually, there's a psychologist through the diabetes clinic in Winnipeg that we had connected with when we had some behaviors like, I don't know, the first six months to a year with Cohen after diagnosis, and she's been there like we always say, she's the silver lining of all of this, because she's just an amazing human. And I think it's so cool that there are psychologists that specialize not just in like looking at brain and cognitive function, but paired with chronic illness, okay? And so we just feel super blessed, because from the moment she met Cohen, you know, she knew we like, we weren't just dealing like with a kid that was having behaviors, because he was 11, and it's a hard, you know, everybody could argue that when their child got diagnosed is the hardest time, but
Scott Benner 29:45
she saw something about him that was a little deeper. Yeah,
Leah 29:49
she really wanted to understand like because he'd had a couple of psychologists psychological assessments done through the school prior to that he had when I. Honestly, one done in Winnipeg. He was in grade one, and then he had another one in, I think at the end of grade five. I mean, those really look at a lot of the same things, but of course, they're gathering that information to understand corn better from an academic perspective, whereas, like, Dr Jen came in and was also like, she could see and understand all that information. And, you know, she worked with Scott and I for a while to start, and had given us some tips, and we are trialing some things, and we were getting a little bit of success, but it was a lot of so she finally, like a lot of back and forth, and not great strides. And so the last, well, not the last session we had with her, but the one that kind of rounded up that stream of virtual meetings with her counseling Scott and I, she had just said to us, you know, Cohen had a lot more balls in here to juggle than other kids his age, prior to type one, and then he got thrown type one, and now he has more balls to juggle. And she's like, simply put, he's just not coping with it. And so she had, at that time, said, like, I feel like we really understand poem well from a cognitive and academic sense side of things. But she said it would, I would really like to try and understand better how he interacts with his world, how his problem solving is, what his social skills look like, that kind of thing.
Scott Benner 31:42
What is her estimation of his situation? Like you said, like he's he doesn't have autism, but he's struggling a lot. Like, are they giving you some sort of a diagnosis or an understanding of what might be happening to him?
Leah 31:52
Like, when he was a preschooler, he was diagnosed with what they call Global Developmental Delay, which is basically, like, there's five areas of core development that developmental pediatricians and such look at as far as where kids fall. And so he was, if I think, if you fall under, like under the whatever is average on three or more, then that's as a preschooler, the diagnosis you would get. And he is also diagnosed with something called dyspraxia of speech, which is, it's not muscle weakness thing, it's more so like how the brain sends the messages to the mouth to move the muscles at the proper times, if that makes sense. So, like, you know, I remember when he was like, four, we'd go to speech therapy, and she would, and she would do lots of, like, oral strengthening stuff. But you know, she would, if we started with the word pop, and you know, she would be, like, really pronunciating that. And, you know, and, and she would then say pop. And then she'd say, can you say it back to me, Cohen? And he'd be like, ah. And then he keep looking at you, like, I did it, like, can you quit asking me, I'm saying it. How many
Scott Benner 33:17
times can I say pop before you people say it's okay, yeah,
Leah 33:21
and he's grown in all of that like but as they get older, you know, they still kind of follow what's going on for them as far as the outcomes, you know, through school. And we delayed his school entry by a year so he had he didn't start Kinder until six, because you get, I would say, much more frequent and thorough supports through therapy and those different kinds of specialists when they're preschoolers. So we just thought he could benefit from that extra
Scott Benner 34:00
year, did it end up helping? Yeah, okay, yeah, it did,
Leah 34:05
for sure. And of course, when they're little like and he was quiet and shy, I would say even up until grade four or five, he had some stress. Most of his struggles are with ELA, like his language arts and reading and writing and being able to pull information,
Scott Benner 34:27
and are those still a
Leah 34:28
struggle they are. So he like this. Dr, Jen, he does still have a speech therapist involved through the school, and she had done this a speech assessment about three years ago. So Dr Jen repeated that one and he there weren't a lot of changes. There were a few improvements, but he doesn't meet criteria for a language communication disorder, but he's borderline, so his two big. Biggest things are that, like, he has slow processing speed. So you know, the best way to give an example of that is, like, if you're talking to him and you're on sentence three, coin still back on sentence one, figuring out and processing what you're saying from there. I think trying to draw language out, especially spontaneously, for him, is really hard. Again, it would be because of the processing speed, partially and then just, you know, I'm not exactly sure of all the science of it, but no, you know. So now social skills are starting to be like, impacted as he gets older, because it's easier when you're a little kid than you look like you're, you know, but he's starting to like, just make, not intentionally, like, you know, or even the way he communicates with his friends. Sometimes
Scott Benner 36:00
they're moving more quickly than he is. Yeah, is that a thing? Have you seen this with anybody else in your extended family? Or is this completely new for your family?
Leah 36:09
This is new for our family. I just have a sister, and she has four girls, and they're all bright, and Cohen had gone two weeks over term before he came out by C section and there was meconium in his amniotic fluid. Oh, I see which can sometimes they say, I don't know if it's because they might swallow it or what that looks like that can impact be a factor, but they don't know for sure. Can I
Scott Benner 36:44
pivot for a second here and ask you a question? I hope you take this the right way. I really do okay, you speak slowly, like you have a very slow, specific speaking style, and but you write prolifically. And so I want to know, like those long emails. Do they take you long to write? Sometimes, sometimes like I was trying to decide, do you write like that? Because it's a freer way of expression for you,
Leah 37:10
I do write better than I speak. I can speak and but I
Scott Benner 37:18
want to be clear with there's nothing wrong with what you're saying. You're methodical. When you speak like you're slow, you think about your words like that kind of stuff. Like, there's no doubt that if you asked me to retell the same story you were telling, I could get it out in like 45 seconds. And no, no, no, don't apologize. No, no, I'm trying to figure the whole thing out. Hold on a second. No, don't there's nothing to apologize for. There's nothing wrong with speaking slower or faster, or anything like that. I'm just wondering if you're prolific when you write because it felt better for you as a better way of communicating. But that's not the case. You feel completely comfortable in both ways. Is that right?
Leah 37:51
I feel pretty comfortable speaking. I think I'm not always as effective in speaking as I am in writing.
Scott Benner 37:59
That really feels like your genre, then for communication. In a
Leah 38:03
way, writing is kind of like therapeutic for me, to be honest, how so I think it's a way for me to get my thoughts out and process them. You know, I do a lot of that at night, and I suppose I would say it's my way of journaling. I often send them as emails, but I don't send them well, I'm learning, I'm learning that art that's my been my goal of 2025, and I'm doing very well at it.
Scott Benner 38:32
It's awesome. That's really cool. So you're finding a way to, like, get through your thoughts by just writing them down. Do you email them to yourself?
Leah 38:39
Yeah, or I just save them to my draft, because I'm not really a journaler. By, you know, like, that's not my jam. I wish I liked to read more than I do. I used to bet I don't enjoy
Scott Benner 38:52
the reading anymore. Is it because you're busy or because you stopped enjoying it?
Leah 38:56
I think, yeah, it's because I'm busier. And I used to, you know, pre kids, like, get through a book in two days, and now I pick one up and I'm like, What did I even read in this book the last time? I hope to get back to it? Wendy, I
Scott Benner 39:13
lie to myself and say that I hope to read, but I really don't. I don't hope to do it at all. I it's too slow for me, like, as a way to, like, ingest things. Yeah, for sure, I am working more towards, like, books on tape and stuff like that, because it seems like a quicker way for me to get it. But I like that you found a way. What do you end up journaling about personal that you don't want to share? Is it about diabetes or how do you what do you use
Leah 39:34
it for? I think different things. Sometimes it is about advocating for Cohen in the school system could be anything related to just like getting my thoughts out, if it was a difficult day at work, or if it was a difficult day with the kids, just to kind of be able to process through it and put it to bed.
Scott Benner 39:56
It's a great idea. Did you come up? Come up with that? You're on your own. You heard about it so. Where did you come up with doing that?
Leah 40:01
No, I kind of came up with it on my own. I I didn't call it journaling at the time. It was, yeah, I see a counselor, and it was her that was like, well, that's kind of is journaling. Leah, like, you know, if you're not sending it, especially
Scott Benner 40:19
Call it what you want, but you're right. Yeah, right, right. When did you begin seeing the counselor?
Leah 40:23
Just before colon got diagnosed, actually, like a couple of months before. What got you there? Difficult work that I worked for the like a government department called the Department of Families, and I was a social worker in the children's Disability Services Program. And, you know, it just evolved as governments changed and it was, there was toxicity, and it was quite stressful, and I live with some chronic pain, which I managed fairly well, but I probably, if I'm gonna let myself fall apart a little bit, it's gonna be at home. Was just feeling like life was and I was noticing that I was more anxious, and I didn't know why. There wasn't really anything about it that made sense. And so I just decided, and it's not the first time. You know, my doctor said, Well, maybe you should see a counselor. But you know, when you're a social worker, you're like, Well, I know what they're gonna tell me. I I know. I already know what they're gonna ask and what answers they're looking for, so you kind of fight against it, but totally been a
Scott Benner 41:39
blessing. Yeah, is that a interesting situation to be in? Like, professionally, you can assess yourself and say, Oh, I know what my problem is. But personally, that doesn't mean that you'll tackle it. Is that right?
Leah 41:51
Yeah, yeah. And I think the best thing about her has been she just challenges my ways of thinking in very kind ways. That's where it's been most helpful for me, because sometimes we have these notions or beliefs that have followed us since we were really young, and so then sometimes our thoughts and or our behaviors and patterns and habits come from that that's where it's been the most helpful is just her pointing that out to me in a very kind and gentle way. But it's been a really good thing. And I I've said to myself even like when I think I don't need one anymore, I'm just gonna keep going. I'm gonna keep going for life, yeah.
Scott Benner 42:42
What would you tell people, right? Like, you know, if you if you're battling something from your past, it could creep back at you if you don't keep talking about it, right?
Leah 42:51
Yeah, for sure. And I think we think sometimes, as adults, stuff that happened very, very long ago, or whatever, we can bury it in the hatchet, but it's not even necessarily the events, but sometimes the way we respond to things is out of an adopted idea from when we were kids. That's not accurate.
Scott Benner 43:15
Also, if it's something to do with a parent or something like that, like I mean, you have to forgive and let go. But if they don't, it can be hard to completely disconnect from the feeling like, if some you don't mean, like everybody needs to come together, and that can be difficult to get somebody to do. They might not even see it. They're not doing the work you're doing it therapy. Like, you know what I mean? Like, all those things are problems. Yeah, right. I hear what you're saying, alcoholic, no, no, something else you want to tell me or no you don't have to
Leah 43:44
No, no. I actually grew up in a Christian home,
Scott Benner 43:49
a little a little too Christian. What are we saying? Leah, well,
Leah 43:52
I would say middle of the road. I think partially what made my home a little bit more tight around what we were allowed to do as kids is my dad was also in policing. Oh, so he had an overprotectiveness of my sister and I, yeah, yeah. So, I mean, we weren't, but you know, we weren't. Are you
Scott Benner 44:14
afraid? A lot like do things? Does everything scare you? No, I don't
Leah 44:19
think so. I think more it used to more than it does now.
Scott Benner 44:25
It's interesting. It's really interesting because it's, you know, you just get a couple of things piled up on top of each other, and they create a way of life. And you don't know how it's going to impact everybody. It's, it's,
Leah 44:37
yeah, and probably, I think that's, you know, in a way too, with Cohen and me just having started, you know, having a couple months in with her was just so timely, because I honestly that was kind of my tipping point of coping, and I knew something needed to change. And I. She really helped.
Scott Benner 45:01
You're saying it's lucky you got started before the diagnosis.
Leah 45:05
Yeah, I, I'm I feel really blessed about that, because I was still working at my same job. And you know, when you're in the government, you're, it's like, I'm gonna have a pension. And I, I've probably been there around 17 years, and there was a point seven position at a personal care home here, and really that's kind of one of the things that her and I had determined, is that me working less would allow more time to look after myself, but also be more present, you know, and available, especially with new expectations and the responsibility, yeah, with the diabetes. So I never, ever thought that I could do an interview. Yeah, I was, like, my resume was last updated in like, 2007 so, you know, it was on a floppy disk, so, but I, I did it. And for you, my dad is probably rolling over in his grave that I walked from my pension. But at the same time, I, I have too many years put in to, you know, be miserable at a
Scott Benner 46:19
job. Yeah, no, I hear you like, how do you find the podcast?
Leah 46:23
We love it like, and I believe it was off of one of the Facebook groups that I saw it. And then we just tried listening to it on one of our drives somewhere, and very quickly got drawn in, and there's just so much good stuff in it, and I just hope that I can get through it all one day, because it, you know, really, actually for us thought like, I mean, you say it in your own way, and I think A lot of your like parents that you interview from listening to you also have their own way of saying it, but our endos and stuff are helpful on some level. But I think just candidly, like hearing you have these conversations and like talking about doing what makes sense instead of, I guess, getting these guidelines of what you're they want you to do, and not feeling good about it, but not feeling, I think you gave us the confidence to kind of step out more and, you know, with insulin, and we're still working on that Cohen's MDI, which is not where our hope is, city lands forever. We really would love for him to get on a pump, and I believe he'll get there, but that that's part of who Cohen is, too. He when we started the Dexcom. We had about six months of him ripping them off and just really struggling with that. We really felt, though, that that was so imperative to not only just us being able to follow him somewhat like, not somewhat but with him being somewhat vulnerable, and not, you know. And I would still say Cohen's understanding of diabetes is, you know, it's what he understands. And that's where Dr Jen really guides us on that, you know. And at the time, just before he got diagnosed, that we were at the dentist, and they are like, okay, he needs braces, and we had put that off for over a year just based on Dr Jen's recommendation of the he's got way too much going on, and so we did that. He's six months in. I do have faith that he is going to get to the pump. He is going to go to a de camp this summer. We did a family one last year. Okay, so he's going to go to that one that's affiliated with the Manitoba kids, yeah, and I think that will be amazing for him, because it will just be, you know, a place where it's just all kids doing the same thing, but a better than family camp at that age, because he gets to be there without his parents.
Scott Benner 49:34
Yeah, yeah. I know how old he's 13, right? Yes, he's
Leah 49:38
13, and they're in the space socially around 10. Yeah. Dr, Jen, he, he, she's like, honestly, there he is one of the like. She's like, he's my most favorite kid that I've ever assessed and spent time with. And she's like, but he's a really tricky kid, because he doesn't really fall. Into one box. You know, he he has a little bit of the like stuff going on around, like, some rigidity and sensory stuff, but I don't know. These days, they all say we have a bit of the autism in us. So who knows? Everybody's got a little, yeah, but he's like, he's got so much empathy and can be interactive. Where he's going to struggle is socially, because he just coming up with spontaneous conversation and friend groups is just takes him more time, but he's working with him on trying to give Cohen different options. And obviously, our world is completely language based, so for kids like Cohen, it's not the best, but you know, she's trying to because I think it gets him very stressed out. And for example, like he had a medic bracelet, and I bought him, like, one that I thought was the most discreet, like just a silicone band, and he had stopped wearing it. I don't know when, but when we noticed, we talked to him about it, and he freaked out. And he's like, You guys don't understand. Like, I just get asked too many questions, and so we kind of left it, and I talked to Dr Jen about it, and from there, is like he just needs the adult helpers in his life to give him some of the responses that he can give to that and know that he also doesn't have to answer if he doesn't want to, I'm finding a way of saying that you know part of the hard you know, because I would say, Well, you got to read your audience because he thinks it's always coming from a negative place, and reading his audience isn't easy for him. Yeah. What's
Scott Benner 52:00
your assessment of him? Like, you know, you said the, you know, in the beginning, you're like, they it's not autism. It's a little, maybe it is a little like, what do you think is going on? Like, do you have a feeling is there like, something in your mom gut that's telling you is happening?
Leah 52:15
He has, like, he has a like out of the assessments that they do that the school when they come up with their IQ, like, all of the testing put together, and I want to say an average IQ is 100 and Cohen's is about 83 Okay, So he's not super low. Like, you know, he's low enough to have deficits in some of his executive functioning skills. He's is doing regular, like a regular mainstream school programming, but he has adaptations to his plan so things like, you know, he has to do the same outcomes and show that he can do the work that you know. He gets certain exceptions, like, he, you know, getting more time, you know, having the teacher check in more frequently, and breaking down the instructions for him less, questions, that kind of thing. Yeah, yeah. So, you know, we're not too sure. Scott and I try not to go too far ahead in the future, because all of it put together, you know, not sure what that's going to look like. And is he capable of I could totally see him being a kid that you know could go to a trades College, potentially, if he had some help with the school room work type parts of it is he a university kid? No, I already know that. And I think though there's some other things that are just where his friends would be, for example, money, like, you know, coincident allowance, forever and he never asked for it, which is not typical for a 13 year old. It's not that he doesn't want it. I he's just not been motivated, or, I guess, fully understood the value of what it can do for him. He has, like, some really scattered skills, which is what makes him really kind of tricky. But Dr Jen is going to reassess him next year, like before he goes to high school, because she's just feeling like even an update once he's more into pure puberty and just having activity information going to high schools, because it looks so different I see.
Scott Benner 54:51
So you think he'll have he'll have challenges along the way, for sure, you're not certain how they're going to impact him as an adult, and he does seem like maybe he could do a trick. A at some point. Yeah, yeah. And your other child doesn't have any of these issues. Is that, right? Except for the allergy thing, the viral asthma, okay, he's totally opposite. Gotcha? Well, it's a lot to deal with Leah. It just, it really is, you know, it's a lot. Are you getting help, like, beyond, like your cell phone? It sounds like your husband's very involved too, which is awesome. But do you have other support?
Leah 55:24
Well, I would definitely say Dr Jen is our main support through, you know, the diabetes clinic, and we'll have her till he's 18. And of course, like family, my family is in Regina. My husband has just his dad, and he's a couple of hours away, so we have limited natural supports. Yeah, we also have lots of people that love us and love our kids and show up at times where we really need it. Just, we need it. That's awesome. Yeah,
Scott Benner 56:02
that's terrific. I'm happy about that for you, definitely necessary, you know, yeah, yeah, and you find the online thing supportive as well,
Leah 56:10
yes, like, like, your Yeah, work, and absolutely, yeah, we, we both do, and we both listen to a lot of your podcast, and Cohen has heard, heard you many times, and he had said to me a couple of weeks ago that he had Googled you so that he would for sure know what you looked like when he meets you.
Scott Benner 56:37
Helen, I'm much more handsome in person, so it's going to be awesome. He'll be super excited. Yeah, no,
Leah 56:44
that's awesome. But no, the work you're doing is incredible. And thank you. I know that things are different from country to country, but really, like, we're a big community at the end of the day and what supports are available to us, from province to province and state to state may be different, but I really believe that it's the people that have lived this disease that are the ones that know the most. For the most part, I'm not going to say all, because we have some pretty like skilled and gifted physicians and specialists out there, but you know, most people don't know that, and I know that you probably don't live with this as much because, you know, Arden's on a pump and she's older, but Cohen has as many highs as he has lows, and so We're probably at four times a week in the night to for lows, usually to give him what his body needs to get him out of there. And we're
Scott Benner 57:51
just trying to keep up at this point, right? Yes, yeah, yeah. So is your knowledge of diabetes growing, or is there so much else going on that it's hard for you to put the the effort into that completely?
Leah 58:05
No, I think both Scotts and mine continue to grow and we there. There are always times where you feel like you're weighing it and it's like, well, you know, like, I still don't know how to dose for fast acting sugar stuff, so that is, like a hard one for me, and I just take a guess. And now that we're almost two years in, we don't get as stressed about it, like, if we're wrong, yeah, we're wrong, and we really hold on to your motto of like it is so much easier
Scott Benner 58:42
to stop a lower falling blood sugar than to than to beat up a high one.
Leah 58:48
Yeah, yeah, yeah. And some people don't understand that, especially in the pediatric world, they want to keep the number higher, just because it makes them feel safer. But I also think our endos recommend that a lot.
Scott Benner 59:04
Yeah, yeah, I hear what you're saying. I think they do too. It makes it harder when you're talking to them right, because they feel like you're going against their good counsel sometimes. Yeah, have you found that? Have you run into that problem?
Leah 59:18
Yeah, we have it. Initially, we had a nurse educator with us, and there was some things that she would recommend to us that we just didn't feel right about, and there's things we have. Well, one thing we have a regret over is that she thought it would be easy enough to just do the Dexcom training virtually, which for maybe most kids would have been, I don't think it was the right thing to do for Cohen, not her fault. But, you know, looking back, those are some of the things it's like, well, we'll know for next time and be a little bit more careful about and I think that's. Too. Like, we've learned so much about Cohen through all of this. And you know, Dr Jen is really talked to us about, like, it's really important how you use language. Because quick example, I know we probably have to wrap up soon, but he in the beginning, was like, because he comes home after school, and neither of us are home, and we have just said, like, if you want to have a snack, just give us a call and because we need to figure out the insulin. And he was like, I didn't realize this for a long time, but I think he was taking that as I need to phone and ask permission for a snack when it wasn't, it was more like he just doesn't know how to do the carb ratios.
Scott Benner 1:00:48
Oh yeah, you wanted to help him with the buttons, and he thought he was asking for permission just to eat. Yes. Okay, yeah.
Leah 1:00:55
And so when those moments kind of hit you, you're, you know, and I can see how he wasn't completely wrong in those situations. So we're more watchful. And having said that, he's like, entering puberty, and no matter what we say some days, he's
Scott Benner 1:01:13
Yeah, despite all of his problems you can he's still a boy. Is that what you're trying to tell me, yes.
Leah 1:01:18
And Nobody says that. They get, like, super grouchy when they had puberty.
Scott Benner 1:01:24
Nobody told you that one. No. How many things have you learned that if you knew, in hindsight, you might not have had kids, because I have a pretty long list at this point in my life. You know? I'll tell you what. It doesn't stop either, like they'll get older, and you know what I mean, there's still more to do and more to help with, and being a parent is no joke. I'll tell you that much.
Leah 1:01:43
No, and you never really stop, nor do you ever really stop being a kid, right?
Scott Benner 1:01:48
Yeah, no, it's interesting. That's a hell of an insight. You're right. It has been a little bit over an hour now, and I am getting texts from Arden, who is telling me that we have to get moving because I have plans with her this afternoon. So let me just ask if there's anything left that you didn't say that you wanted to say, I don't want to get you out of here without you getting anything out that you that was important to
Leah 1:02:08
No, I just wanted to thank you for the opportunity to come on. And it truly is an honor. Like I tell everybody, you're the guru of type one diabetes podcast, and I don't think I've listened to anything really captivating that you know, from east to west really, as far as different topics you cover, and I think they speak a lot to us in different ways, and so we're grateful that we learned of the resource. And I do apologize about my extremely long text or emails, rather sorry
Scott Benner 1:02:52
emails, direct messages at one point, yeah, like, no, no, it's fine. Don't worry again. I'm being serious when I say this to you, like you're not the only one. Like, it happens. People get overwhelmed. Do you know what I mean? Like, they just do, like, this happens. And and then, you know, at some point you say, you know, I'm on an island here by myself. I, you know, for you and ice float, I don't know what to do. And you feel like, like, oh, this person might know, and it, you know, it's a resource. And you I don't know how you're supposed to stop yourself from asking. I'm glad that people ask. You know, I'm a person too, and like, sometimes, you know, when you start getting into the 1,000th word of something, I'm like, I don't know what's happening anymore.
Leah 1:03:29
No, no, I I know. And you know, probably not every parent looks at it this way, and it's the last thing I'll say, Scott. But you know, for me, and I still sometimes feel like this, that like, essentially, type one diabetes is also it's like organ failure, and that's what people that don't know about it or don't live with it don't understand. Tell me how you mean, I think how intensive the management of various you know, one of the endos said to us early on in the in the journey to us that it's a micromanage disease, and the hope is, is that one day that micromanagement is transferred from the parent to the child. That felt very true for us, just because of the age that Cohen got it, but we know we're not going to be in this place forever, and things that, you know, we've grown in some areas, and it's just one of those non linear things that
Scott Benner 1:04:35
it's an incredibly slow process. It just really, it just really is, and I've seen it move more quickly for some people than for others. It's just not the point, like you have to have these experiences over and over and over again, and then eventually they just start to make sense. And before you know it, you know, you look back one day and you wonder, like, I guess you don't recognize yourself one day. You know, one day you're just like, by. I've got this. I don't know how I got here. I don't know why it is that I feel comfortable all of a sudden. But my opinion is, is that it just it takes however long it takes to go through those experiences until, instead of being surprised by them, you see them coming. I think that's the Yeah. You know what? I mean?
Leah 1:05:17
Yeah. I totally get that. That is such a good way of working. Thank
Scott Benner 1:05:21
you. I have a podcast, so I'm good at talking about stuff like this. Yeah, you were really fantastic. I genuinely appreciate you doing this with me. I've been looking forward to talking to you, actually, for a while because I thought, like, like, what a great opportunity to you know, you have a lot to say, and obviously there's something going on in your life that I think would be really valuable for you to share with others, and I appreciate you
Leah 1:05:42
doing that today. Well, thank you so much. I was pretty certain I was in your grave box or whatever, or maybe it's going to be really entertaining.
Scott Benner 1:05:56
Yeah, no. Leah, you too. You're too Canadian. Because once I was like, at some point I was like, Hey, this is really long. I can't really answer this, and he just synopsize it. You were understanding. Like, it wasn't like, you were like, oh, leave me. Like, what do you mean? Like, you're like, No, I get what you're saying. Like, no, you you're great, you're Don't worry about your fav, you're fantastic. And I love this. I really appreciate your time.
Leah 1:06:14
Thank you Well, and I appreciate you giving me the opportunity. And, yeah, just keep doing what you're doing. Scott is touching families and individuals and research companies all over the world. Oh, you're very kind beyond that. Yeah, you're really
Scott Benner 1:06:31
kind. Thank you so much. All right, hold on one second for me. Okay, okay.
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