We’ve got a parent’s survival guide when it comes to teenagers and type 1 diabetes this week. What to do when your child doesn’t want to hear about diabetes anymore and hears your helpful advice as just plain nagging.

Jill Weissberg-Benchell has a PhD in psychology and is also a certified diabetes educator. We discuss talking to your teen, listening to your teen and strategies to get through this oh-so-interesting time in their lives. It’s not just about attitude. Their bodies are making it really difficult for diabetes.

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1:45 Stacey Welcome – Stacey reads a recent Apple Podcast review and talks about events for 2019 – email stacey@diabetes-connections.com to request Stacey as a speaker.

5:20 Interview with Jill Weissberg-Benchell

Stacey talks about Raising Teens with Diabetes from Moira McCarthy (link to buy from Amazon)

55:45 Know Better: Glucose Revival Necklace (link back to our original interview with them)

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Interview transcription:

 

Stacey: Jill thank you so much for joining me. I’ve been looking forward to talking with you ever since I saw your presentation this summer. Thank you so much for making time for me today. 

Jill: Oh, it’s my pleasure.

Before we get started and I have to warn you and I’ll have to warn the listeners as well. I do feel like this may be a therapy session for me. So we’ll see how it goes. I don’t want to make it into one but I may not be able to help myself. Can you talk a little bit about why did you get into this field to begin with? You don’t have a child with type 1, you don’t have type 1 yourself, what led you to this path?

So it was one of those, I was in the right place at the right time and it was the best sort of accident that ever happened to me. I was in graduate school and thought that I was going to probably spend my career literally working with juvenile first offenders. And then I did a full year of intensive clinical experience for an internship, which if you’re getting a PhD in Clinical Psychology, that’s the last piece before you graduate. And I was lucky enough to be embedded in a consultation liaison program in the hospital, which is where you meet with families who are admitted to the medical side of a hospital who are coping with all kinds of really scary things. And I thought oh my gosh, I don’t want to work with juvenile first offenders. I want to be a pediatric psychologist and I want to work with families, who are living with a chronic illness and trying to live their lives in spite of these additional challenges.

When I realized that I thought, but I don’t have enough training to be able to do that. So I looked for a postdoctoral fellowship in pediatric psychology so I could get the training that I wanted to be competent. And I was so, so lucky that the fellowship I was offered was at Children’s National Medical Center in Washington, DC embedded in the diabetes team. And I have never been more lucky. I have never been happier and I’ve also never looked back and that was in 1990.

Jill, I have to say I have been one of those families that comes in and gets a team, get some care. It’s not something I would describe as never been happier. What did you do for those families when they first came in? Give us a kind of a hands-on look at what happens there?

Well, It kind of depends really a lot on the age of the child and also the family’s experience with diabetes in their own personal lives because you probably already know most families have no experience with diabetes. Nobody that they know that has it, but there are some that have very strong family stories about diabetes. But I think the biggest and most important thing is to give families a message that they’re not alone, that there are many people on the diabetes team that are there to support them through the entire journey, not just a diagnosis but throughout. That even though it’s really scary and there’s a lot of unknowns, you know at diagnosis or you’re just learning what the heck is all of this and what do you mean insulin? What do you mean carbohydrates? What do you mean glycemic variability or whatever other big words people might use but also that your child is going to, we’re going to work with you to make sure the diabetes does not prevent your child from achieving all of their goals, whatever they are. Whether they’re violinists or hockey players or artists or readers or just really great friends or you know, thoughtful to whoever you know, the children are we don’t want diabetes to ever get in the way of allowing them to grow and develop and have joy in their lives and whatever it is that they do.

I think it’s so important to make sure that that message is so clear and often times the psychology folks are the first people to give that message. So that’s one piece. I think a big piece is that you don’t change your parenting just because of diabetes and that’s a hard one, a really hard one. And yeah, so I think those are some of the basics. I mean I can go into more detail, but I think that that’s sort of a good overview of some of the things that we try to give as messages to families. And that every blood sugar, oh this is so important, every blood sugar number is a good number. Because you can’t fix a number if you don’t know what it is. So to be able to not flip out over numbers that are out of range but to praise and thank your child for sharing the data with you. Whether it’s a finger poke or a CGM share. And to be able to look at that number and say, “Wow, this is great that we have this data. Now, what do we do with it?” is a very different message than the old-time messages of high numbers are bad, our low numbers are bad and only certain numbers are good, which just gives this horrible sense of shame and blame and badness that we never want to be part of the ups and downs and frustrations the diabetes already offers.

All right. So with that lead in I’m going to jump right into what I want the majority of this episode to be about which is teenagers.

Okay.

I’m a little biased because I have one. But I also think your talk was so empowering that I want to try to share as much of it as I can. So you did two sessions at “Friends for Life.” You do lots more than that, but two really stood out to me. One was called “Parenting your Teen” and the other one was “Raising your Parents” and it was for teenagers. But let me start with you if I could with that language of there’s no good or bad numbers.

My son was diagnosed before he was two and we were very fortunate to have that advice early on so we never, well I shouldn’t say we never. I know I had my moments where I would be, you know, I would gasp or have these terrible reactions, you know, and you wouldn’t want your child to know that there was good or bad but they pick up on it. But now that Benny’s older I find myself saying things like, “Hey, sweetie, no answer’s a bad answer. There’s nothing wrong here, but I just have a question for you. Did you blah blah blah or can I see blah blah,” and he rolls his eyes and he shows it to me. I feel kind of silly saying those things. But you’re saying it’s still worth saying it after all this time.

Absolutely. It’s can be so exhausting especially during the adolescent years to manage diabetes in part because biologically it is absolutely the hardest time to have blood sugar numbers that are in range given all of the hormones and all of the growth and the development and the changes that are going on. And with growing and having a bigger body and with puberty and hormones, there’s also just an increased hunger and so both the hormones and the food and the more or less structured or schedule all of those things just make blood sugar numbers just harder to keep in range. And so to just remind our children that we get it and that it is a hard time. But that continuing to just engage in the behaviors, the monitoring blood sugar numbers, the counting carbohydrates, the giving insulin is so important because there are days when it’s going to work and everything’s going to be beautiful. And there are days when it’s not and that’s life with diabetes especially during adolescence. But that we should never give up on the behaviors we know that help people stay healthy.

Let me back up a minute. You’re mentioning all of the factors that really do make it more difficult for teenagers. Now, I have to say, even with all the education I was fortunate enough to have, I really misunderstood what was on the way for my son. I thought that it was all kind of in his head in terms of that, you know, ding dong teen behavior that we see in every teenager diabetes or not. That it was about forgetting and rebelling and not wanting and. Can you just reiterate a little bit about hormonal changes because I was blown away. I’m not going to say diabetes was ever easy to manage but ages 2 to 10, 2 to 11, you know you work hard and you can you can see the difference. Sometimes with my son and we’ve shared this with each other, he’s doing everything he’s supposed to be doing and we’re out of range and that’s not atypical, right?

Yeah, no, that’s incredibly frustrating too. Especially if you have the belief or the hope or have given the message that somehow if you do exactly the right things the numbers will always make sense because that’s just not true. It should make sense a lot of the time but it won’t always. So I’m going to defer a little bit of your question to endocrinologists who are more expert in the biology. But what I do feel comfortable saying is that when you’re in the middle of puberty, if you don’t have diabetes, so if your body makes all of the insulin, it’s supposed to make, it can produce somewhere between two and eight or even 10 times as much insulin per day every day to compensate for the hormones that your body is making.  And so the only way that we know that children whose pancreases aren’t producing insulin need more insulin, it’s because their blood sugars are wonky and we can’t figure out why. It’s not because they skipped a bolus and it’s not because they sat down with their best friend and ate an entire pound of M&M’s. You know that there’s something else that’s going on that isn’t so in-your-face obvious. And often times, you know, that’s the biology piece and that’s you know, such a good time to be in close contact with the diabetes team to get more close advice about how to change doses and how to ride the ride.

Got it. That’s definitely an endo level decision. And I urge you, as you listen, to please talk to your endocrinologist just from our personal experience, Benny’s basal rates more than doubled in one year’s time and continue to go up and our endocrinologist is really helping with us. But I’ll tell you Jill, I felt like, I felt like a failure when that first started happening because you know we’re using so much more insulin and I thought it shouldn’t have to be this way. So let’s shift back to the psychology of this. How do you start with a family maybe even like mine who comes in and says, this is so frustrating. It’s not working. I’m mad at him. He’s mad at me. You know, where do you start to have these conversations with your kid?

Well first I would actually start by saying yes, it is definitely frustrating and it’s not surprising that everybody’s a little bit irritated with each other. And that’s all about love. It’s all about wanting the best. And so I would actually start by listening a little bit before we talk about diabetes just about what’s going well in your relationship to begin with and what each of you enjoy about each other and what the teenager likes doing outside of the family and is good at and is confident in and what the parents enjoy doing outside of diabetes so that I get a sense of the whole family. Because sometimes families come in so focused on diabetes and what’s not going well that they sort of lose perspective and lose attention on all of the things that are going well and I want to sort of start from that that base of strength. So I would say that. I think the other thing that I start with is try to get a sense of what families do to cope with stress and frustrations that have nothing to do with diabetes because oftentimes especially children and teenagers have incredibly creative and amazing strategies to cope with frustrations and disappointments and stress and they forget to use it in their diabetes life.

Do you mind, I don’t want to catch you off guard. Can you think of an example of that? I’m trying to think of what you mean? 

So perhaps when I’m overwhelmed with too much homework and a project and an exam and I’m not sure I’m going to be able to pull the grades that I want, what I do is I reach out to my best friend who’s really good at math and ask them for help. And then I go to my social studies teacher and ask them for guidance. And then I also asked my dad to read a paper that I’m outlining. And so I bring in experts in different areas to help me get through the stressful times. So I know who to reach out to. Or perhaps what I do is if I’m really stressed about exams and doing well, I pay a lot more attention to whether or not I’m getting enough sleep and I try to prioritize getting enough hours of sleep because I know that I learn better and I cope with stress if I get enough sleep. Or maybe what I found is that if I can do yoga twice a week and maybe run once then just that exercise and taking my mind away from the stress and doing something that’s different with my body and taking care of my body in that way helps reorient me and allows me to focus on the studying I need to do. So that would be examples that have nothing to do with diabetes, but they are just as appropriate when you’re managing diabetes related to stress. And so sometimes I like to listen to the different strategies that people use that help them get through tough times that have nothing to do with diabetes because if they work in one area of your life, they’re likely to work in another.

That’s really interesting. We forget about that sometimes. You’re right.

And then the other thing that I try to help families think about is the language that they use when they talk about diabetes the tone of voice that they use when they talk about diabetes and whether or not the messages that are intended by the parents are heard exactly as intended by their teenager. So what I mean by that is that sometimes when parents say things like why is your number this high? Why did you forget to bolus? Why didn’t you check? Why did you turn me off from share? Those kinds of things. It’s almost, so those intentions, the intention of those questions is almost always to say, “I’m worried about you. I want you to be healthy. I want you to be safe and I need you to do a better job of it communicating with me what’s going on so that we can work together, and I know you’re well.” But often times the way in which the questions are phrased, teenagers don’t hear that as worry and concern and love and a desire for collaboration. Instead, they hear it as, “I don’t trust you. I think you’re making really boneheaded decisions. I think you’re irresponsible. I think you’re not taking diabetes seriously enough and I don’t trust you.”

Wow. 

And so if that is not the intended message, but it is heard that way it can set the stage for all kinds of miscommunication and mistrust and unhappiness that was never intended. And so to help, you know, a parent and a teenager think a little bit about how the messages are given and how they’re received can sometimes really change things in a lovely way.

How do you do that? I mean, I don’t need to give all the trade secrets here. But I can’t help but ask, how do you get your teenager to understand? As you’re saying it, it  makes so much sense that they may not. 

They might not but sometimes asking them to give us some guidance as grown-ups is really helpful and very empowering to them. Let’s say that somebody has a Share and the parent says, “When I’m at work and I see that you’ve got a double arrow up and you’re already over 350 and I text you to say I need you to take some insulin to correct and you ignore me and then I’m still seeing the double arrows up and I’m saying correct and you ignore me and now I’ve texted you seven times and you have ignored me and now I’m going to call you out of class and you don’t like that, but guess what now I’m mad at you cause you’ve ignored me,” right? And so instead if the teenager says listen, “You know, this is what I do. This is how I’m doing it” and then the parent says, “But you’re not communicating that with me,” then now you have an opportunity for changing the interaction. So I would say to the teenager how can your parent let you know that they are aware that you are double arrows up and you’re already 350? How can you let your parents know that you are aware of it and that you’ve done something to correct it? How do we do that so that they don’t have to text you seven times and then call you out of class because you don’t want seven texts. You don’t want them to call you out of class. So what can you do to let them know to improve that communication so that the annoying nagging intrusive parent doesn’t come to that. Does that make sense?

It makes perfect sense in fact, go ahead. 

So again, like reaching out to the adolescent him or herself for some ideas and strategies that might work. Sometimes they come up with amazing strategies. Sometimes they’re not so good but it’s okay because now all of a sudden you have a collaboration and you have communication and it’s the diabetes that is exhausting and annoying and unfair and frustrating. It’s neither the teenager nor the parent. So once you guys are working together to try to solve a particular diabetes specific event or problem or situation then everybody’s on the same team and communication gets less likely to be misunderstood.

It’s such great advice. And again, I’ll just use us as an example, we are far from perfect as you well know, but I do sit down and I have since Benny was very little, with him at the beginning of every school year and say, how are we going to do this this year? When he was very little I would say what’s one thing you want to do this year that you didn’t do last year? And in first grade it was “I want to eat lunch in the cafeteria.” You know in fourth grade it was “I want to you know, check in with my teacher and not the nurse at lunchtime” or whatever, you know, but every age appropriate thing. And then as he got older now it’s, he asked me to text him 20 minutes before lunch because he couldn’t remember he wanted to pre-bolus. This is something he found worked well for him at lunch and he couldn’t remember. He didn’t want an alarm, he tried it and he didn’t like that it was weird for him and then he would forget anyway, so I text him every day and I’ve done that since 6th grade. This is the third year. 

And what do you text? What are the words that you use is it “bolus?”

No I’m going to look let’s see what it is. I used to say a lot more. I used to say “here’s the amount of carbs, and here’s what your blood sugar is right now.” Today was, “Please bolus for lunch 70 carbs XOXO.” That’s it. 

Fantastic.

Yeah.

And he finds that helpful.

You know, he I hope so. No, he does. He told me to do it.

Well he asked you to do it which is amazing.

He did. In seventh grade. I said to him. “Do you want me to do this? I feel like I’m nagging” and he said “No Mom, I it helps me just think about school. I don’t have to remember and I don’t have to think about diabetes. I know you’re going to keep on it.” Sometimes, every once in a blue moon I do forget. But you know, I have a reminder in my phone and it’s just bolus for lunch and I used to write out all the carbs and put in his lunch box, but he doesn’t really want that anymore either. So I just text the number to him and he can look at his pump or his phone now and see what his blood sugar is so I don’t have to tell him that. But I did ask you in the (Friends for Life) session. I’ll ask you again for the benefit of the listeners. When do I know that it’s time to stop texting him? I can’t imagine he’s going to be 35 years old and I’m texting him, “Hey, it’s time for lunch.” How do I know when it’s time for me to let him completely handle that?

So absolutely our children will let us know when our support is no longer perceived as supportive. When our help is no longer perceived as helpful. I love that you asked him and check in with him because he gets to change his mind over time. So you’re recognizing that, you know, every four to six months, he’s just kind of a different person because his brain is developed more but his interests are or different. Adolescents is such an incredibly rapid stage of change and cognitive development and it’s hard to see, just as like their clothes are no longer fitting and there you know eating us out of house and home and you know causing all kinds of costs for new clothes all the time. Their brains are growing and developing at alarming rates. And so, you know, they’re thinking, their ability to problem solve, their judgment is constantly changing. So I love that you’re checking in with him. I would suggest above and beyond let them tell you when they no longer want the support. In general, people are pretty much done asking for support around the age of 25.

I thought you were going to say like 17 or 18. 

No, truly around the age of 25 a little bit after, as people go to college a little bit after college. I really mean it. It sounds funny but I am honest. And part of that is truly again going back to science and going back to biology. The part of our brains that are responsible for judgment and a sense of risk taking and organization and planning ahead are the last parts of our brain to develop and those parts of our brain aren’t done until we’re about 25. So our brains are continuing to grow past High School, past the university years. And so even though in general we think about people over the age of 18 as adults because they get to do all kinds of adult things legally. Their brains are not yet done. And their ability to plan ahead and organize and recognize danger and risk is really not fully formed which is why college students sometimes get into really amazing bits of trouble. You know with the choices that they make in parties and other things like that because that part of the, “This is really not a brilliant idea and I could get into big trouble,” it’s not quite there. So if our children/young adult children are still saying, “Gosh if you texted me or reminded me or called me or whatever it is that they needed our help with it would be great.” Then I say, please please do it because it will help them.

That’s great. You know, it’s funny as you were talking about the age of 25, you know, I have a 17 year old daughter and I don’t think anything when she says things to me like I don’t know how to call the bank. Can you help me or I need to do this on my college application. Can you help me? For some reason in my head I was thinking diabetes was going to be different. Like, he’d be 17 and not want me to text him or do anything. But we do give diabetes a different spot on the shelf for some reason. I don’t know why that is. 

Yeah. It’s kind of funky isn’t it? And in fact, I would suggest that because diabetes is not something that everybody deals with it’s not every single friend of your children that has diabetes. It’s not everybody in their school or in your community that has diabetes but everybody your child’s age has other goals right? Like being able to get your homework handed in on the due date or making really good choices about who’s a true friend or being maybe in a social environment where you’re thinking this is probably not a really cool place to be I need to get myself out of it. Or making decisions about learning how to balance a bank statement or how to call in prescriptions or any of those kinds of things. I think that in some ways being completely on your own with diabetes has to go even slower, than being completely on your own for other things that everybody is doing at the same time.

It’s a great point. You mentioned bad decisions, or really that part of the brain that makes good decisions not being quite developed yet. 

Right.

Can we talk a little bit about that? Because there are so many bad decisions that teenagers make that I think parents can kind of roll with, but parents of kids with type 1 fear so much more. Can you address a little bit of how can I talk to my child about that? And I know we could talk for hours, but for kind of glossing it over a little bit, how could I talk to my child about parties and alcohol and things like that? When it comes to diabetes.

So first, most important message I have, is whatever each parent’s values and morals and beliefs are they have to share them with their children and be very overt about them and very clear, diabetes or not. Whatever is important to you as parents, it’s very important to not just assume that your child gets your beliefs and thoughts and feelings by the way you behave but they need to hear it from you directly whether that’s cigarette smoking, drinking, being intimate with somebody, all of those things. It’s very important that parents share their thoughts and beliefs and morals and values overtly and repeatedly actually with their teenagers, even though they will be miserable that you’re sharing your thoughts and beliefs. So I think that that’s sort of the very first thing I want to say.

If you are a parent that feels comfortable talking to your children about the risks of drinking then with diabetes, I think it’s important to first make sure that you have all of the knowledge. It is perfectly reasonable and okay to get your diabetes nurse educator or your endocrinologist or whoever else you feel really close to on your diabetes team to facilitate that conversation with you. So you don’t have to do it solo. You can always do it with your diabetes team. But I think it’s about having accurate information and protecting a person’s safety. So from my perspective, the number one most important thing is that if children are going to engage in drinking or even adults that they are very much aware of what happens biologically when you drink and that they are engaging in behaviors that protect them to avoid low blood sugars in the middle of the night while they’re sleeping. So, just some facts that I think that teenagers and adults need to know is that for pretty much every alcoholic beverage you drink whether it’s a shot of whiskey or glass of wine or a beer, your liver stops producing glucose for an hour. Because your liver has to process out the alcohol and that’s its primary goal when it’s exposed to alcohol. So it stops its other job of producing glucose. So if you think about sort of the stereotypical college party where there’s lots and lots of alcohol and no food. If you drink and you have no food in your body and your liver is no longer producing glucose and you potentially have insulin on board, you increase your risk for a pretty frightening low. And so my message to teenagers is I want you to eat before you go to the party. I want you to eat in the middle of the party which means bringing granola bars or whatever else it is because there’s going to be no food there. And then I want you to eat when you come home from the party because I’d much rather you wake up with a high number then not wake up because you went low and you were too drunk or wasted to be able to wake up. Does that make sense?

Sure. Yeah, I’m taking notes.

But that that message might be really off-putting to many families because they might feel very strongly that the message needs to be: you don’t drink.

Sure.

And so again, I don’t want to take away for a minute that everybody has the right to their morals and their values and their belief system and their children need to hear it. But if children are going to and if young adults and adults are going to drink and they have diabetes they need to understand what happens when they add alcohol into their system around glucose production in the liver. And if you have any insulin, that’s still around and on board.

Such a tough choice for parents as to how to present it.

Yeah, yeah.

You know, you have to have to figure out first, how am I going to talk to my kids about drinking and these choices? And then how am I going to talk to them about drinking and diabetes and these choices? So I appreciate you being so straight forward.

Absolutely. And you know other things like basic safety things have nothing to do with diabetes, right? You never accept an open bottle or an open glass. You never put your drink down, it’s never unattended. You never go to a party with somebody and then leave without them or let them leave without you, you know, those kinds of just basic health and safety messages are important whether the person chooses to have alcohol or not. Somebody can spike a Coke so or a Diet Coke or water. So you want to make sure that when you’re at these big parties, you know that children understand some very basic health and safety rules and my perspective is that it’s really good idea for them to hear it from mom and dad.

Do you find that, again speaking from personal experience, that as you said, these are the worst conversations to have and the kids hate having them but they listen. They do hear what we’re saying, even if they’re cringing and wanting to run out of the room. 

They hear what you’re saying loud and clear and they hear your voice often, even if they won’t acknowledge it. So you can’t have a conversation just once which means it’s going to be hard for you and your teenager more than once and it’s going to be like, oh my God, I can’t believe we’re talking about this again. But I think it’s really important because it lets your child know that this is super serious, that this is really important to you. Because this is all about health and safety right and making safe decisions.

One of the things I took away when I heard you speak for the first time was this sense of: it’s ok not to be perfect. I think that – I know – I put a lot of pressure on myself and I feel like we fall short all the time. My son is a great kid. And he’s a good kid when it comes to responsibilities and things that he’s supposed to be doing. But you know, I don’t share his numbers and that’s not because they’re terrible. I don’t think it’s anybody’s business but his. But you know, we are not straight line.

They’re not terrible. They’re just they’re just numbers.

Right but they’re not straight…

There are no terrible numbers.

Okay. Alright, I’ll try again. You’re right. You’re right. Well, they’re not, we don’t have an A1C of 5.2 with straight lines 24/7, you know, that’s not going to be his experience. But I left your talk feeling so good about where we are because of milestones. Like, he is still talking to me and asking for these texts that we mentioned earlier, right? It’s okay for me to be involved. We have a plan as you mentioned. Like, when am I going to text you if your Dexcom says this or says that. And you mentioned problem solving which really made me sit up straighter because I hadn’t even thought about that as a milestone. But Benny started doing more of that for himself really a couple of years ago, and it’s getting better and better at it. Can you speak a little bit to that as a milestone for parents to look for?

Yeah, you know as children get older and you can start to see some really great problem-solving even when they’re much younger even in the sort of late elementary school years. But they’re not always there consistently when you need them to engage in those decisions right? And then as they get older and older you just start to see better and better problem solving skills. I think catching children when they engage in great decision making and praising them going, “Wow, that was just incredible. I’m so proud of the way you solved that problem,” regardless of whether it’s diabetes related or not is lovely because we don’t always catch our children and comment to our children about what they’re doing that makes us so proud of them as often times we just kind of remind them and point out the things that we wish they had done differently. So that I think is really important and then, you know as they start to make great decisions.

Sometimes we can back off a little bit, but it doesn’t mean that there won’t be then a challenging moment in their lives a stressful time. Like for example, I’m thinking junior year in high school and everybody’s really stressed over their grades, over what colleges or universities they want to apply to, over ACTs or SATs. So there’s just a lot of pressure especially towards the end of junior year in high school. And so sometimes teenagers just need to say, “You know, what? I am problem solved out. I am sort of not able to really deal with some of the ups and downs of diabetes stuff. So I would like to give this job or these jobs to you mom and dad back even though I’ve been doing it just fine for the last few years.” So, you know being able to do that as well, because that actually is great problem-solving. That’s knowing that I’m so stressed right now that I can’t handle everything. So I’m going to get the people involved that can do it well that I trust and get them back into my life.

Well, that is really interesting to think about it that way. I mean just asking for help can be a really great sign of success.

You do a talk as I mentioned earlier called, “Raising your Parents.” Can you share a little bit? I know not a lot of teenagers listen to this show, but I’m wondering if you can share for parents kind of what goes on in there.

Well, I try to remind teenagers that they are part of a dyad right? They’re part of a family. They’re part of the interaction and it’s not just that their parents are raising them but that they have a role in raising their parents. And so what I mean by that is I want our teenagers to recognize when their parents are stressed or distressed or worried or nervous or anxious what role they have in reducing their parents stress, distress, or worry or anxiety. And then what the good things are that can happen when they recognize that they have a role and helping their parents be less distressed. So teenagers have been able to talk about when I check my blood sugars more often or when I pre-bolus meals or when I let my parents know what my blood sugar is before I turn the key in the ignition in the car, my parents look at me as being responsible. They also know what it is I’m doing and that I’m doing making safe decisions. When they see that when I preemptively share this information with them, they’re more likely to say yes to something I asked them that I want to do.

And what are the kids’ reactions when they kind of realize that or talk through that? 

Well I don’t sort of say it the way I just said it. We have a conversation so that they come up with. Oh gosh. Yeah. When I do this, my parents are more chill. Oh, well why are they more chill? Because they’re not so worried. Oh, huh. So you have a role in helping them not be so worried. Oh, yeah, I guess I do. So, what’s the good things about being better at communicating with them before they you know, get you know on your case? Well, then they’re not nagging which makes my life easier. Okay, great. So you just helped your parents not nag you. So I help them sort of make the connection through conversation. That’s a great point because I gotta believe that they don’t realize that we don’t like nagging them, until.

Oh no, they think we love it.

Right? But we don’t and so how, so part of that talk is to help them recognize actually where does the nagging come from? Is it really the parents wake up in the morning and say what can I do to irritate and annoy my child today? Or is it that they’re really worried about your health and safety? And invariably teenagers are really great at recognizing the good that is sort of under underlies the nagging that my parent loves me. My parent wants me to be healthy. My parent wants me to be safe. Definitely, you know, sometimes teenagers feel like their parents are hoping and expecting for more than is biologically possible or reasonable. But they do, they most of them do recognize that their parents really are coming from a good place and that if they are a little more proactive in sharing information than their parents are way less worried and stressed and then everybody gets along better.

So what’s your advice? If there is a family where this really just isn’t working, you know, there’s a teenager who is not doing the minimum to be safe to take care of themselves with diabetes and the parent is very frustrated doesn’t know what to do. I assume some of this is to call a professional, get an endo involved. But what would your advice be on how to handle something like that?

Yeah. I think that that’s exactly right. After you’ve tried to talk. You’ve had some conversations about gosh, you know, I feel like I’m a nag I don’t want to be a nag but I’m worried about you. I need you to be healthy. I need you to be safe. Do you have advice for me about how to communicate with you more effectively so that we’re all on the same page and we’re working together? If those kinds of conversations are not helping in a parent or teenager’s feeling like they’re you know, that things are still really unpleasant in the home and that there’s a lot of conflict especially around diabetes tasks. Then I think reaching to your pediatrician reaching out to members of your diabetes team for referrals for Behavioral Health Specialists, whether it’s a social worker or a psychologist or a psychiatrist that understands diabetes is really the next step. And it could just be one or two visits or could be longer but you know working with somebody that can be helpful that understands families and teenagers and diabetes is going to be helpful.

And I hate to say it but of course there really still is a stigma about seeking help like that and I think some parents might feel like they have failed if they have to. Can you just speak for a moment about how, in my opinion, it would really be the opposite. You know, you really would be helping your child and succeeding by trying to get more care like that. 

Yeah, because what you’re talking about is teaching your children that not every challenge is easily overcome on your own and that part of being a successful adult is knowing when you’ve really given it the good old college try so to say. You’ve really put energy and effort and it’s just not getting you where you want to go. And if family members are finding themselves really having unpleasant conversations and the joy and fun of being together as a family is no longer there, then I think everybody deserves to bring in somebody with a slightly different perspective and a different skill set to just be a consultant to guide them and give them some new thoughts and new ideas. You might reject them, which is fine. But at least you’ve tried because not everybody can be an expert in everything.

So, you know for me if my car makes a funky noise, I am not going to look under the hood and try to figure it out. I don’t have that skill set. So thank goodness, you know, I can go to a mechanic. That’s sort of a little bit of a silly sort of way of describing it. I don’t mean for a minute to suggest that it can be that simple but I but my point is that we can’t all be expert in everything. That’s why we live in a community. That’s why we partner with people that have different skill sets. And so I would encourage families to just think that this is about consulting with somebody that has a different set of training and a different skill set to determine if they might have any thoughts or ideas that are useful or helpful. It’s not about it’s not about failure. It’s not about shame. It’s about reaching out to other people and gathering some new ideas or new information.

One of the things I’ve seen in the community Jill and I know this is a debate is do you talk to your child about do you use scare tactics? Right? If you’re if you feel like your child needs to be doing more to help with their management or things aren’t going the way you’d like that you say to them, you know, you could have long-term complications or take, I mean, I’ve seen people who suggest taking their children to a kidney dialysis center. Do those kinds of things work? 

Sometimes they can work for maybe a couple of days at most a week.

Oh.

But that’s about the length of time it will work. And it works because it instills a great amount of fear into a child. It’s very frightening to see people that are very ill and not doing well. The problem is children are really not capable of connecting those people with their current behavior. So if you look at what works for a child who is very now oriented, who is not at all future-oriented really, and the concept of a future might be next week, but it’s certainly not when you’re 45 or 50 years of age. I think that a more effective approach and one that protects the relationship between the child and the parent is to think about what’s immediately relevant to the child. So when your blood sugars are really high do you wake up a lot in the middle of the night to go pee? Wouldn’t it be lovely to be able to sleep through the night? Is you know, an immediate consequence of tighter blood sugar control, right? Because most people would like to sleep through the night. Or do you feel like your mouth is dry? Or do you feel like your vision isn’t so great? Or do you feel like you know, whatever that person’s symptoms are when their blood sugars are higher that just doesn’t feel great. Do you feel like your thinking is slower? You know, do you feel like you’re not as fast, you know, whatever it is. That would be that person’s symptoms or again for low blood sugars, you know. Do you feel you know, sweaty, shaky hungry? So when you know in different people have different symptoms, so if you don’t want those symptoms don’t feel great in the immediate, I would work on what it is that we want to do now to improve those not great experiences now. Because as grown-ups, you know, that that’s going to have long-term benefit, but children don’t quite understand that you know? So if I say, “If you check your blood sugars, or if you monitor your blood sugars and you pre bolus and you take your insulin and you count your carbs and you exercise every day from now on. Do you know what’s going to happen in 40 years? Nothing.” Like how could that be motivating?

That’s a great point. 

Yeah. So again, I think I think it’s about finding a way to encourage the behaviors now to develop really great health habits now to reduce some of the not great experiences when blood sugar’s are out of range now. And that will set the stage for future.

A lot has changed since my son was diagnosed 12 years ago now and one of the biggest things is social media. While that has connected me to a lot of wonderful people and I love the support I get, it is also brought this level of, “Am I good enough as a parent” that I’m not sure was there when my son was first diagnosed, you know, people sharing flat Dexcom lines and particular ways of eating that work for them. And you know, just I did this and you must do that or just showing examples that you know, I personally I can’t live up to that. I feel like there’s almost more stress by seeing that. Have you noticed that as you talk to people?

Absolutely. But I would just remind you that we see that in that diabetes social media as well, you know, the families that are what we call quote unquote Facebook happy, you know, the perfect family on Facebook. They only post the things that are awesome and amazing and wonderful. And then if you get to know some of those families for real, you realize that there’s not everything is sunshine and butterflies. So, I think just sort of taking a step back and wondering like why are people posting this? You know, well, what good are they trying to sort of like share with the world. And so sometimes it’s okay to just kind of turn that stuff off. Or to just say, oh, I’m so happy for them. They had a great day. Mine wasn’t so great, oh well. You know and to be able to just kind of just not personalize it which is so hard if you’re, you know overwhelmed with it all the time.

But it’s a good point. It happens with now, you know, not in the diabetes community as well every day too. I see my neighbor’s posting their beautiful floral arrangements or their gorgeous living room that doesn’t have mail all over it and towels that need to be put away. 

Right, or dog hair or little bits of yesterday’s meals and dinner that somehow wound up, you know in the living room even though everybody ate in the kitchen.

Of course. 

So, you just kind of wonder really? Like really is that their life? I think also just being comfortable with your own, you know. Hey, I have a lived-in home, right? So you or whatever it is or hey, you know, this is a month where I have a child who is doing an enormous amount of growing and the most important thing is for us to just focus on the basics and get through carb counting and monitoring blood sugars and administering insulin. And just sort of keeping the amazing persistence that we all have that we haven’t given up and we keep on going. And that’s that’s so amazing, right?

Yeah. It really is. And just to say, great job today. Guess what? We get to do it all again tomorrow. Before I wrap it up Jill. Was there anything in particular you want to talk about that we didn’t get to?

I don’t think so. Again, I think that the more that people don’t, this is so hard. It’s so easy to say, but it’s so hard to do. But the more we don’t get sucked into what’s not going well. And instead focus on the typical behaviors that we need to engage in day-to-day to just manage diabetes and persist in spite of ups and downs and frustrations. And the more we give children the message that we’re all in it together and that it takes a team. I think the better people are going to be and the less exhausted they’re going to feel.

Jill, thank you so much for joining me.

Oh yeah, you’re so welcome.

It’s great to talk to you. I always feel like now I have something I have a goal and I’m focused and I just and I feel like I’m not doing it all wrong. So, thank you so much.

Oh my gosh. You’re so welcome.

 

 

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