Sweet Talk for Parents of Kids with Type One Diabetes

I loved the conversation I had for today’s podcast episode. It touched on a topic that no one has ever asked me about, even though I know it affects many of us: the difficult balance of managing work responsibilities while caring for a child diagnosed with Type 1 diabetes.

I’m talking with Nikki, a mother from the UK whose 6-year old daughter was diagnosed with T1D about a year a half ago.  As Nikki learned more and more about diabetes after her daughter’s diagnosis, she started to recognize that she needed to make significant adjustments to her work life in order to truly meet her daughter’s needs. The lack of support and understanding from her employers compounded her feelings of guilt, overwhelm, and depression. Ultimately, Nikki made the tough decision to step back from her job, allowing her to provide the dedicated care her daughter required.

Nikki’s work/life balance ultimately has a happy ending—she started her own business where she works less and earns more. But it prompted her to think about the kinds of support that T1D parents need: Her journey heightened her awareness of the precarious nature of balancing professional obligations with the demands of caregiving.

In many ways, Nikki’s story is not unique; many parents face similar struggles as they take on the often crushing burden of managing their child’s T1D — and many parents adjust their work schedules to accommodate these needs. But it’s a lonely and hard decision, so I was grateful to Nikki for coming forward to explicitly name how challenging it can be.  We have a brief, but wide-ranging conversation.  

Listen to hear more about

*My thoughts about how some of the work/life balance parents need help with is actually a political issue

*Some clear ideas about mourning and challenges parents face when their child is first diagnosed.

*Starting to create some community around T1D

Hope you enjoy the show!

In this week’s episode, I have a conversation with Mary, mother of a newly diagnosed little boy: Campbell was diagnosed about 6 months ago at two and a half.  

Mary and her husband are getting the hang of diabetes but it’s been such a big learning curve that they’re thinking of postponing sending Campbell to preschool in the fall: Mary just can’t picture how a school transition would go.  The thought of entrusting her son’s care to someone else is understandably daunting. As we talk, we realize together that Mary’s also hesitant to send Campbell because she’s not sure how to ask the school for the help that her family needs to manage type 1.  Ultimately, she doesn’t want to burden others with the complexities of managing his diabetes and learning the ins-and-outs of the disease. 

Together, we delve into her worries and explore the emotional landscape of becoming a T1D advocate for our kids. We discuss the vital importance of self-advocacy, not just to ensure that our kids receive the best possible care and support, but also because it’s critical for us to model for them how they can ask for the help they need — today and in their future. We also look at how this kind of advocacy helps create a safety net for our kids. 

I share several strategies to help Mary feel more comfortable both advocating and leaving her son at preschool: We talk about the small steps she can take to practice, mostly by starting to advocate with family members, creating a step-by-step map for starting to leave Campbell with those people who already love him. We also look at ways to think about advocating at the school by her first getting super clear about what kind of support she wants Campbell to have.  

Listen to hear more about:

• the reasons you might consider transitioning to a pump, even when shots are working
• the mistakes school care providers might make in management — and how to think about that
• an upcoming workshop that will help you build a better relationship with your child’s care team at school

In today’s episode, I talk with Tiffany, a mother whose 9-year-old daughter was diagnosed with type 1 diabetes only a few months ago. Tiffany opened with her primary concern: the limitations her daughter might face in the future. Even though she couldn’t picture exactly what those limitations would be she fears diabetes will hold her daughter back. 

Tiffany’s worries are a mirror of what so many T1D parents feel—we worry about the hurdles our kids are going to face. It’s easy to get caught up in the “what ifs” and overlook the “right nows.” So I brought Tiffany into the present, looking at the ways her daughter might have felt limited since her diagnosis and how Tiffany can respond to that. 

Validation became the keyword of the discussion. I emphasized the importance of acknowledging the frustrations and limitations her daughter is currently facing — in the example Tiffany gave, it was about sitting out from PE, something we’re all familiar with.  I work through a powerful validation tool with Tiffany that she’ll be able to use again and again as she parents diabetes, one that will keep her closer to her daughter’s experience, with the hope that that will help her daughter make a smoother adjustment to a life with type 1. It’s not foolproof, but it’s a way for our kids to understand that we’re alongside them.  

Listen to hear more about:

• The nitty gritty of how to construct a strong validation of our kid’s experience
• Thoughts on how to stay close to our kids as they grow their diabetes responsibilities so we’re attuned to what they actually can manage.
• A discussion on the thin line between fostering independence and the risk of “diabetes burnout.”
• How powerful it is for a parent to be together with their child on their diabetes journey

 Hope you enjoy!

In today’s latest episode, I answer a listener question that will resonate with most parents of T1D kids: the emotional and practical considerations of testing siblings for diabetes markers.

The decision to test siblings for diabetes markers is one that many families, including my own, approach with trepidation. The anxiety surrounding this decision is understandable. No parent wants to even begin to imagine another child facing the same challenges as their type 1. And so the question becomes: to test or not to test?  Do I want to know?  Should I want to know? Does knowing help? Or will I just feel more overwhelmed?

The discussion strikes a balance between the idea that knowing if a diagnosis is coming can be powerful — we can plan, and prepare, and possibly even help delay onset with new drugs like tZield. But we also need to be gentle with ourselves, choosing testing only when we feel ready to tolerate what the testing uncovers. I also tackle how we might have to protect our children from the enormity of that information, holding it lightly for their sakes, even as we prepare for the worst. 

Of course, this decision remains a deeply personal one for each family. In this episode, I provide information, empathy, and understanding to help parents make the best choice for their children and their family’s overall well-being. Hopefully, listening will offer some perspective that will help ease the your burden of deciding.

Today’s show touches on a topic that’s close to many of our hearts—preparing our little ones for big life transitions. But as you know, when you’re the parent of a kiddo with type 1 diabetes, those transitions take on a whole new layer of planning and care.

In this episode, I had the pleasure of speaking with Rachel, a proactive mom who’s thinking months ahead about her son’s upcoming leap into kindergarten — and also about his horizon beyond. 

As we delve into our conversation, we talk about ways that  Rachel can best navigate the school system for her T1D son. I suggest she connect with other T1D families in her school so she can get a sense the inside scoop on how diabetes management works there. We talk about ways to partner with her son’s school care team to build a strong relationship with them (and I also give a nod to my upcoming workshop “Beyond the 504” where I teach about how to do just that). I also make suggestions of how she can bulletproof her son’s 504 plan, in order to maintain more parental decision-making authority.

Rachel is thinking even further ahead: She’s wondering about the challenge of transferring the responsibility of diabetes management to her child over the long run. It’s a dance between fostering independence and being there to catch them when they fall. And trust me, we all have stories about that part of the journey—like the one I share about my daughter’s path to managing her diabetes.

Here’s a sneak peek of other highlights from our conversation:

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• Why advocating for your child requires a balance of assertiveness and relationship-building.
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• Cultural insights into how women are often taught to communicate, and the challenges we face around advocacy because of that.
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• Personal anecdotes that highlight the emotional aspect of slowly passing the baton of diabetes care to our kids.
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• The invaluable role of environments like diabetes camps in fostering self-care and independence.
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I hope you join me for this powerful episode, where we celebrate the courage and dedication of parents like Rachel, who are laying the groundwork for their children to thrive in school and in life, despite the challenges of T1D.

Remember, sweet friends, our journey is sweeter when we walk it together. Keep talking, keep loving, and keep advocating for those sweet ones in our lives.

Mentioned in this episode:

Wanting to create the best relationship with your child’s school care team?  Register for Beyond the 504.  In this workshop, I’ll walk you through evidence-based tools to approach your child’s school so you can can have the tough conversations you need to have about diabetes management and keeping your child safe at school. Find out more at www.diabetessweettalk.com/workshop

In today’s episode, I’m joined by Sveltana, a mother who’s navigating the bumps of diabetes management with her 9-year-old snowboarder and athlete. While we do spend some time strategizing management and I talk to this mom about questions she could put to her endo, we’re actually having an important conversation about the values that she might be choosing to center in a life with diabetes.  

When we T1D parents talk about managing diabetes, it’s a delicate dance between maintaining tight control and giving our kids the freedom to just be kids. For Sveltana and her son, sports are a passion. But as she’s learned, sometimes that means the numbers can take a backseat.

What we recognize in this episode is that diabetes management is deeply personal. As Sveltana and I discussed, it’s really about values clarification. What do we want to center in a life with diabetes? For Sveltana, it’s her son’s happiness and normalcy, even if it sometimes means the numbers aren’t picture perfect.

I also talked with Sveltana the importance of giving herself some grace as she figures out how to manage sports and numbers together. Her family is relatively new to this journey, and there’s no one-size-fits-all approach to diabetes. Being out of range but allowing her son the space to play the sports he loves could be a win for them. And she might need to adjust some of her expectations as they continue to learn and grow in managing diabetes.  

Listen to hear more about 

• Resources for personalized diabetes care, especially for those balancing sports and activity.
• Potentially important questions to ask the endo, like about mini gluc, ketone checking and additional basal profiles.  
• Thinking about getting more support — It’s vital to feel free to reach out for this, especially if you’re seeing patterns that you’re not sure how to manage, or that feel scary.
• Family Camp!  Still can’t say enough how valuable this can be to everyone in the household.  

Mentioned in this episode:

Need help getting your kid the right snacks?

That's why I've created the Sweet Talk Snack Course. It's a free mini-course to give you 6 snack sized lessons on making sure you're giving your kid the right foods to keep them nourished and their blood sugar in check. Get it at https://diabetessweettalk.com

I feel so lucky to have been part of the conversation that makes up this week’s episode.  My guest is Stacey Simms, herself a big name in the diabetes world, and the host of the Diabetes Connections podcast.  At one of her Mom’s Night Out events, she had told me that she had a question about her T1D son’s transition to college — and here she is to talk about it. 

Stacey starts by naming a few different areas where she’s struggling as her son transitions to college and she transitions to his independence.  The first is simply about him leaving and the ways that she worries about his diabetes management, especially since they had made an agreement that she would no longer be on Dexcom share once he left for college.  She also notices her reactions to his management style when he is back at home and wonders how the conversation about diabetes should look now that he’s a young adult.  And as the topper: This super experienced T1D mom questions whether she did a good enough job teaching her son about diabetes.  

This is a robust conversation about the ongoing challenges of parenting our T1D kids, even as they become young adults.

Listen to hear more about:

*The ways we sometimes compare our child’s diabetes “performance” to that of other kids

*The challenges we feel about our own adequacy when our kids aren’t doing as well at management

*The balance of our feelings of awe and respect for what our children carry and our critical feelings towards our kids for the things they forget or don’t get right with management.

*What it means to be “impressed” by what our kids are managing and how to communicate that authentically while still giving them space to fail with diabetes.

*How to talk to our young adult kids about their management

*Remembering that our kids might still need and want our help with diabetes — and how to ask them about that

*The ways that it feels like the worry about T1D never stops

Mentioned in this episode:

Need help getting your kid the right snacks?

That's why I've created the Sweet Talk Snack Course. It's a free mini-course to give you 6 snack sized lessons on making sure you're giving your kid the right foods to keep them nourished and their blood sugar in check. Get it at https://diabetessweettalk.com

On today’s show, I welcome back Kaylor Glassman, founder of Diabetes Support Partners, to talk through a question from a listener.

The question has to do with an 11 year old, who the parent feels isn’t being as responsible about diabetes management as mom thinks she should be.  Mom is concerned that this kiddo isn’t tracking the insulin in her pump, is allowing her pump to run out of charge, and is always surprised when the CGM expires. The parent is wondering how to get better cooperation from her child.

But Kaylor and I question whether this is the right approach and whether these are reasonable expectations for this child.  We look at how the anxiety of the parent could be pushing this kid to do more than, perhaps, she’s capable of.  And with that in mind, we look at how to foster a conversation with our children about what they think they are capable of, with the idea that we’re transferring diabetes responsibility step by step.

Listen to hear more about:

*The difference between whether a child can do a task and whether they are actually ready to do that task

*Ways to foster a positive connection around these tasks through conversation

*Thinking about developmental readiness in transferring T1D responsibilities

*Following the child who’s in front of us and allowing them to lead in terms of what management tasks they are ready for

*Keeping connected about diabetes, even in the teen years

Mentioned in this episode:

Need help getting your kid the right snacks?

That's why I've created the Sweet Talk Snack Course. It's a free mini-course to give you 6 snack sized lessons on making sure you're giving your kid the right foods to keep them nourished and their blood sugar in check. Get it at https://diabetessweettalk.com

Today’s mom has a wish to go away with her husband for a weekend — and leave her T1D son behind.  The grandparents have offered to take him for that weekend — they are more than happy to help — but mom is nervous, worried not just about her son’s numbers, but also about how asking for what she needs might impact her relationship with her in-laws.

As we explore, we uncover that this mom has what I call “a beautiful fantasy,” that she gets to go away and have an actual vacation from diabetes, where she doesn’t have to think about it for the weekend. Together, we think about what the steps might be to work up to that, so she can make that dream possible.

Listen to hear about:

*How to help grandparents build the diabetes care muscle, step by step

*How parents should quiet their fears about overwhelming caregivers

*Having different expectations about management when our kids are in other people’s care, especially when it’s for short periods of time.  

*How to help support your child if they have some diabetes anxiety about being left in someone else’s care

This week’s guest is a mom of a relatively newly diagnosed 10-year old girl.  Mom describes her daughter Maisie as having always struggled with some anxiety — but now that diabetes is in the mix, Maisie's anxiety is higher and more dramatic — and mom is at her wit’s end.

Together, this mom and I dig into what she’s seeing with her daughter and come up with a few different strategies to help calm her very anxious daughter.  First, is to take as much responsibility for diabetes off of her daughter as is possible.  I name that many parents are anxious about how their kids are going to be able to do diabetes on their own one day — but that for Maisie, the focus needs to be on lowering her anxiety now, before she takes on too much responsibility.  It's going to be important for tis mom to know that Maisie will be able to take this responsibility on later, but that now -- at 10 -- she should do less, not more.

We also look at some of the realities of diabetes complications and how mom’s worry about this has been part of the mix.  I was able to reassure her that dire complications of diabetes are lower than people expect — which was especially important for her to hear since she works as a nurse and had seen some ugly complications with type 2 diabetes.  

We talk about how mom can work with Maisie to lower her anxiety in a given moment when she’s distressed.  Some of this is about strategizing with Maisie about what she might need in those moments.  But some of it is about mom and dad really being in charge so that Maisie feels better contained — and less bad about herself.  

Finally, we explore what it would be for this family to get some therapeutic support, the ways that Maisie is resistant to that, and the ways that mom might be able to help support that process.