It didn't take long after my son was diagnosed for someone to tell us, "Kid first, diabetes second." Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community.
I get it. We shouldn't take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make.
But the more I think about it, more I think that phrase misses the mark.
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Episode Transcription:
Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available at Amazon as a paperback eBook and audiobook. Learn more at Diabetes connections.com
Announcer
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:26
Welcome to a mini episode of the show. I'm your host, Stacey Simms, and I'm really glad that you joined me for this now these episodes I do occasionally are more. I'd call them more editorials. I do interview shows week by week if you're a longtime listener, you know that but this year I added in these mini episodes these minisodes just me, I am not a medical expert. This is more mom to mom advice. Just from my experience as a longtime parent of a child with type 1 diabetes, what I've learned and what I think can help. My son was diagnosed with type one when he was 23 months old.
Stacey Simms 1:00
that was back in 2006. He is now 15 and a sophomore in high school. Oh, my goodness, he is he's very comfortable with diabetes is very confident. He's very independent. And while we are far from perfect, we are doing a great job according to our endocrinologist, and that's all I really need to hear.
This subject has been on my mind for a while. So let's just get into it. I want to talk about the saying, kid first, diabetes. Second. It's been around our community for a very long time, probably longer than I've been a part of the community almost 14 years now. But I just don't think it works. It doesn't work for me. I don't think it works for anybody. So let's talk about it. What is kid first diabetes second all about? I think we know what it's supposed to be right? You hear this most often right after diagnosis. And it means that you know, your life shouldn't change that much.
Stacey Simms 2:00
From what it was before, or you know, you shouldn't take away all the fun things that make childhood childhood. And we don't want diabetes to be the first thing people think about when they consider our children. And we don't want diabetes to dictate every decision that we make. Now for some people, kid first diabetes second means letting them have a giant Sundae, or go to a pizza party. Now it doesn't have to be all about food. I did say it to myself years ago when I let my son go to regular sleepaway camp, not diabetes camp for two weeks when he was eight, and he has gone a month every year since then. So I've said that to myself, right kid first, diabetes, second, let's do this. But the more I think about it, the more I think it misses the mark. Kid first diabetes second, isn't right. It seeks to separate the diabetes from the kid, which is impossible to do. Or maybe it's not impossible, but it doesn't sit right with me.
Stacey Simms 3:00
Here's why implies that you're sort of cheating on diabetes. We're going to put diabetes aside, we're going to put it second. So we can do this other thing that every child should be able to do. Put the kid first, what we're saying is that kids with diabetes, shouldn't be able to do that shouldn't be allowed to do that. You're just letting this be a special case, because it's fun. And it's about being a kid. It's as though we're saying diabetes can't be part of a real childhood, a good fun, a wonderful childhood. take it one step further. And we're actually implying that diabetes can't be part of a good fun, wonderful child, or ultimately a person. It sounds dramatic. I know. But I really don't think it is. Looking at this a slightly different way. I talked about it just a bit in my book, the world's worst diabetes Mom, I use the analogy of the Hulk there. Alright, so when Benny was very young and ready
Stacey Simms 4:00
He was diagnosed just before he turned two. We couldn't explain to him exactly what was going on, you know, you know, when your blood sugar is high, you can be so grumpy, you can be unreasonable not that a three year old is always reasonable to begin with. But it was so hard to explain to him what was going on. And it wasn't until, I mean, really till about age four or five, that we were able to start working on a few strategies to help and one of the best involve the Hulk. We started telling Benny that he was a lot like the Hulk. I don't have to explain to the Hulk is right, the Marvel superhero, big green guy, comic book, TV show, movies, that whole thing. Okay, so we started telling Vinny that he was a lot like the Hulk when his blood sugar was high, and he felt angry and mean. But unlike the Hulk alter ego, Dr. Bruce Banner, we said he could learn to control the big green guy. So we started by having him recognize that he was high. This was before the days of Dexcom for us, so we would just test blood sugar, and then Benny would work on removing himself from the situation. He could go
Stacey Simms 5:00
It was room and beat up a stuffed animal. Or he could yell into a pillow. He could sit quietly with me, he could color he could drink water, he could be mad. But he couldn't release the Hulk on other people. It wasn't perfect, but it really helped him process what was going on in language that he could understand as a little kid. So fast forward to the Marvel Cinematic Universe. And this is, of course, the movies, the Avengers movies, and we're big comic book people. We have seen every MCU movie together by family, we all have our favorites. This was really as an aside us such a fun part of our, I don't wanna say our family history that sounds very high and mighty. But my children really were old enough to see these kind of movies just as they were coming out. And now they're older and they don't want to be with us as much and we were able to see all of them together. And it was fun in between arguing about the theories and talking about the characters and we saw the last I want to say four or five movies on preview night I would get tickets on the Thursday before they were released and we always will
Stacey Simms 6:00
A big deal about it. So it was great. And if you're familiar with the movies, or even if you're just familiar with the character that you know, the Hulk is always struggling, but the character is right. He has two distinct sides, Bruce Banner, and the big green guy, and they work in opposition. And that's kind of what we were telling Benny right this side can't understand that side. Or you know, when you're high. You're not you. You've got to get control over that part of you. Then we saw Avengers endgame. And I almost fell out of my chair when smart Hulk showed up. I What is he? I guess he's called Professor Hulk. But whatever he is called. Bottom line is that Dr. Banner has figured out a way to embrace his Hulk side, and the two are at peace. I looked this up. Yes, I did some research into Professor Hulk. Marvel says equal parts intellect and brute strength. The professor represents banners ideal version of self. And that's it. That's my hope for Benny. Now I have to stop for a second and say I can
Stacey Simms 7:00
Knowledge I am saying all of this as a person without diabetes, I'm the mom, I'm not the one living it. So I understand he has to find his own ideal point. This is exactly what I'm working toward. My son can't take diabetes and pretend it's somebody else. Yes, that worked when he was three or four. But in his young adult and adult life, he can't take his bad moods and its highs and lows and push them off on the other guy. I'm of course not saying highs and lows are not real. Obviously they are, they need to be acknowledged. And they in many cases need to be accommodated for by the people around the person with diabetes. But those highs and lows are part of diabetes, so they're part of him. And if Benny is able to embrace the side of him that he sometimes wants to reject, he will be that much stronger. And that brings us back to kid first diabetes. Second, it needs to change. It needs to change in our thinking to simply kid with diabetes. So what is that
Stacey Simms 8:00
That mean in practice, birthday cake? Yes, that is a life with diabetes, sleep over sure that's a kid with diabetes, soccer practice without me there. Same thing. I think if we treat these events and foods, like we're somehow cheating on diabetes, or somehow separate from it sends the wrong message. I mean, think about for us without diabetes. I am not eating birthday cake every day. But I sure I'm gonna have it the next party I get to go to knowing that. Do I then have to say, woman first birthday party attendee second? Or maybe mom first mom who really needs to eat more salad and fewer desserts second, I mean, you share that right? There's that guilt. Right mom, first mom who shouldn't be eating cake second. And it's not always about food. As I've mentioned, milestones and events are very relevant here too. So if you're saying kid first diabetes, second about, let's say a trip with the grandparents, you know the older sibling when
Stacey Simms 9:00
The grandparents did a special trip. And then a couple years later, the younger sibling with type one wants to go insure kid first diabetes. Second. Well, you're really telling your family that kids with diabetes shouldn't be able to do that. You're just allowing it, because it's fun. And it's about being a kid. It's just being a kid with diabetes. It's not easy to change our language about diabetes. I've been saying kid first, diabetes second for years. I looked it up. And it first shows up in my blog, in 2011. But words matter how we talk about diabetes matters. And our kids are listening, even when we think we're being careful. So I'm gonna stop saying kid first diabetes. Second. That is not how I actually parent and teach. It does not work for us. And it's not how I want Benny to think about his life with type one. So what do you think? Agree? Disagree? Remember, I am the world's worst diabetes mom.
I'd love to know what you think you can email me Stacey@Diabetes-connections.com, or find me on social media, I'm linking up everything in the episode homepage. The show notes for this will be at Diabetes connections.com. You can find all 320 episodes of Diabetes Connections there. We also have an extremely robust search. So you can search by keyword by topic by date, and find whatever topic you are looking for. But I'd love to get your reaction here, especially if you've listened this far, and you're an adult with type one. What do you think about all this? The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes is available on Amazon in paperback eBook and audio book. I hope you check it out and read some reviews. It is all about our journey with type 1 diabetes, but it also features some mom to mom advice. And it gives you some suggested questions to bring to your next doctor visit that always confused me. How am I supposed to know what to ask if I don't even know what I don't know. Hopefully I can help you out there. All right, I will see you back here next week for our regular interview episodes. Thank you so much for joining me.
Stacey Simms 11:00
I’m Stacey Simms, until then be kind to yourself.
Benny 11:08
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
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