Mommy Beeps: Parenting with Type 1 Diabetes

25 Mar 2021 A1c, blood glucose/sugar, books about diabetes, Dexcom, family of person with diabetes, insulin, Intensive management, parenting with diabetes, Partners, Type 1 Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Kim Baillieul

A few years ago, I sat at a park while my then two-year-old son played on the playground. A wave of dizziness fell over me right as I felt my continuous glucose monitor (CGM) start beeping. One, two, three – three beeps, confirming the low blood sugar I suspected.

Instinctively, I reached into my purse and grabbed the juice box floating among the loose change and used test strips. Of course, my son’s innate ability to sense whenever I have a sweet treat also kicked in, and next thing I saw were his big, blue eyes fixated on my hand.

“Mommy, can I have your juice box?”

Sure, my sugar had dropped in front of my son before, but this was the first time I had no distraction for him – no alternative snack, no books to read. Most importantly, it was the first time he asked me to share. I shook my head and told him no, but he persisted.

“Mommy, pretty please, can I have your juice box?”

My mind went blank.

How do you explain to a toddler that your juice box is literally keeping you alive?

What I Was Told

For years – even when I was still a child myself – I was cautioned about pregnancy. At 16 years old, my endocrinologist painted daunting pictures of a hypothetical future high-risk pregnancy: weekly doctor’s visits, insanely tight control, constant monitoring. A massive list of things that could go wrong. All of this became my reality over a decade later when I became pregnant with my son.

My high-risk pregnancy with him had overall, gone well, partially thanks to the hard work I put in to maintain a 5.1% average A1C, and partially thanks to luck. I was prepared for the extra scans. I was prepared for the drastic insulin changes. I was prepared for the constant vigilance. I was prepared for what could go wrong.

However, nothing prepared me for how to explain my type 1 diabetes (T1D) to my child. Or why suddenly, at this moment, I couldn’t share a simple juice box. Frankly, I was so dizzy, I couldn’t even get up off the bench.

“I’m sorry sweetheart, I can’t share. This juice box is mommy’s medicine.”

Later, after my sugars were stable, I thought about how to talk to my child about my chronic illness and the scope of what he needed to know. I wanted to achieve a balance – somewhere between knowing enough to be empowered but not so much that he’d become anxious; enough for him to understand what I was doing, but not enough for him to feel responsible for it himself.

All my life I had worked to overcome and ‘beat’ my diabetes, to not let it stop me, you know, upholding the usual mantras of strength. However, as I pondered how to talk to my kids about my type 1, I had to set that all aside. Pride had no place here.

The conversation remained informal, but honest.

Understand that mama’s body doesn’t work the way most other people’s do… I’m not sick, but it can make me feel sick sometimes… This is my insulin pump… This lancet is sharp, please don’t ever touch it.

He had a lot of questions.

Yes, Mommy beeps!… No, you won’t get it when I cough… Yes, even if I forget to cover my mouth… Yes, I can eat most anything as long as I’m careful… Yes, even ketchup… Yes, even ice cream… Yes, even ketchup ice cream – wait, that’s gross!

We both erupted in giggles.

A Universal Struggle

One of the beautiful things about the type 1 community is knowing you’re not alone. As I reflected on this intentional conversation, one of the first ‘growing up’ discussions I had with my son, I realized I’m not likely alone in facing this. Turns out, I wasn’t – the parents with type 1 community was peppered with struggling T1D parents facing the same hurdle. When I looked for resources, I didn’t find anything quite suitable for a type 1 parent.

Throughout my son’s toddlerhood, I captured my efforts in a children’s book I wrote called “Mommy Beeps: A book for children who love a type 1 diabetic.” It was a passion project of mine to provide a resource that didn’t otherwise exist, and hopefully help another family lessen the mental gymnastics of explaining type 1 diabetes to a child who doesn’t have it themselves. Every page is personal – down to the angry T1D on the phone dealing with a denied insurance claim. Because that is reality. Diabetes isn’t just about the finger pricks and injections – the medical and insurance logistics can be just as heavy. Extra doctor’s appointments, tracking of supplies, prescription refills – it all took time away from playing with blocks, giggling on the floor, or reading “Goodnight Moon” for the third time on a given evening.

As for my son, he took to my carefully crafted conversation well – and all of the impromptu ones that followed. Once, after a particularly harrowing high sugar, we planned a library visit to check out some books about the body, so he could find the “piece of Mama that doesn’t work.” We never made it to that page, though, because he was too fascinated by more amusing parts of the body (the toilet humor sure does start young).

A few years later, I braved the high-risk pregnancy world again and came out with a second little boy. The first time my type 1 diabetes interrupted our playing with trains, I talked to him, too. He shrugged it off and kept the train on its way to the station.

Later that night, he leaned into me. Pointing to my stomach, he exclaimed, “Mama’s Dexcom! I kiss it.” Clearly, something stuck in our conversation earlier that day. And I will take any win I can get.

They won’t know any other way, this will be their normal. And really, that’s a beautiful thing, because the T1D community is now just a little bigger.

Find out more about “Mommy Beeps” here.

Source: diabetesdaily.com

The Value of Diabetes Camps: Building Skills and Grit in a Safe and Supervised Way

15 Mar 2021 Children with Diabetes, diabetes camp, diabetic alert dog (DAD), exercise, infographic, insulin, Intensive management, Life with Diabetes, low blood sugar (hypoglycemia), parenting with diabetes, Type 1 Diabetes

A few years ago, I attended a function for children and adolescents with type 1 diabetes (T1D) and their caregivers. A breakout session on type 1 at school was packed with parents of newly diagnosed children, most wearing the familiar look of worry and exhaustion that us veteran parents remembered all too well. These weary warrior newbies needed an empathic community and substantive guidance.

The panel was composed of a seasoned school counselor with type 1 herself, and two school nurses. Collectively, their years of experience were a treasure trove of information as to managing the complexities of type 1 at school. Despite their expertise, the fear and trepidation among the attendees were palpable. I felt like exclaiming “group hug!” The parents, some of whom had devoted grandparents along for support, seemed to have two things in common: fear, and a strong skepticism over whether it was all going to work out OK for their children.

How could school waters be tested with the uncertainties of bus travel to and from, recess, gym class, standardized testing periods, and school trips? For those families in which there was not a full-time nurse on staff at school, the worries were significantly amplified. How would oversight of insulin dosing occur and who would help their children during a dangerous high or low?

Sitting amid these parents I could relate to their vulnerability as I recollected the first nerve-racking days when my eleven-year-old son returned to school after his initial hospitalization. I could remember needing to catch my breath when I would see the school name on my caller ID. Most calls were that a low was being handled and not to worry. Other times, it was a request that I come and pick up my son rather than have him ride the school bus home with a persistent low. The best calls were to say that he had given his own injections and was showing more and more independence each day. With the right helpers in place, the scaffolds were being erected for him to become confident, strong, proud, and as self-sufficient as feasible for a young boy with a chronic condition.

Photo credit: Adobe Stock

The first time we saw our endocrinologist in an outpatient setting just weeks after diagnosis he asked our son, “Hey, are you going to diabetes camp this summer? You’ll love it!” I thought, what could diabetes camp possibly be? It sounded like the least fun camp imaginable. There was just one other type 1 child in our son’s elementary school. How many kids could there be to fill up such a camp?

Fast forward to the next summer after our son’s diagnosis as we arrived at the aptly named, “Camp Freedom” to find a lively campground with hundreds of kids and teens with type 1 diabetes milling about. We could spot insulin tubing, patch pumps, and glucose monitors on arms, legs, and bare midriffs. I saw a teenage girl with her diabetes alert dog. Asking her about her beautiful companion with his official vest, she shared that she had hypoglycemic unawareness. I did not know what to say. To have someone unable to feel an acutely dangerous low was unfathomable to me as a parent. Never had I felt as much love and respect for an animal as that diabetic alert dog steadfastly at his owner’s side.

As each camper lined up at check-in, an endocrinology nurse or doctor would obtain precise information as to daily insulin amounts, pump settings such as insulin to carb ratios, basal schedules, and correction factors. Adjustments were made to err on the side of caution to prevent exercise-induced hypoglycemia with the many activities for recreation and sport yet to unfold. As the days would go on, if a child was running too low from fun offerings such as zip lining, swimming, and gaga, further adjustments would ensue by the expert staff who monitored blood sugars day and night.

During the six-night sleep away camp, no cell phones were permitted so this was the first time ever in our son’s life that we could not communicate with him for an extended period. However, laying my head on the pillow on his first night away and realizing the peace of mind that the 2 AM finger stick and countless other checks throughout that long week were being properly supervised resulted in a feeling of immense gratitude for the nurses, doctors, and camp counselors. What other kind of camp could offer parents this type of reassurance and respite from caregiving while creating fun for their kids?

One of the most famous organizations in the nation, The Barton Center for Diabetes Education, Inc., offers girls, boys, and co-ed camps year-round. They hope to provide an in-person camp experience this summer and are closely monitoring COVID to determine the safest numbers of campers to have onsite. Other camps are running virtual programs.

For children and teens who have felt isolated or misunderstood since their diagnoses, diabetes camp often represents the very first time they feel joyful and normal again. Surrounded by hundreds of kids with the exact same condition, the solidarity that comes from a shared experience is the fastest path toward normalizing and acceptance of one’s condition. Beyond acceptance, the cultivation of grit and perseverance, in line with the writings of Dr. Angela Duckworth of the University of Pennsylvania, are key skills that any veteran T1D will tell you matter. This sense of plugging away or what Dr. Duckworth calls, “deliberate practice,” combined with a positive “growth mindset” as outlined by Dr. Carol Dweck of Stanford in her famous book, “Mindset: The New Psychology of Success” are byproducts of immersive, supportive experiences that emphasize challenge, skill-building, and persistence despite setbacks.

Erik Erikson’s stages of psychosocial development. Infographic: Very Well Mind

The psychosocial theorist, Erik Erikson, had a stage theory of human development. He believed that within each stage was a central “crisis” to be resolved and how well one emerged from the stage and entered the next was a function of the degree to which the crisis had been resolved. When my son was diagnosed at age eleven he was in Erikson’s fourth psychosocial stage: industry (competence) vs. inferiority.

If the messaging to an eleven-year-old with T1D is, this is too hard for you, too dangerous, too you name it, then the child would begin to think that diabetes was a significant limiting factor. That impingement on self-efficacy would leave an imprint on the stages yet to come and be a set up for learned helplessness, worry, sadness, frustration, and a lack of confidence. Conversely, if a child of this age is exposed to a supervised, supportive, inspiring community like one finds in diabetes camp, he will emerge stronger, more confident, and more willing to embark on new and challenging pursuits that showcase his competence in handling his condition.

As a therapist, I sometimes speak with parents with heavy hearts over conditions or diagnoses of their children. Often, the children are soldiering on in their own way and sympathy may be misplaced when a show of empathy would better fortify and empower the entire family. I am reminded of a race I once ran in Central Park in New York City one summer. I looked on in pure awe at a blind runner to my right flying past me. I saw his guide next to him giving him quiet direction and I wondered what kind of messaging and experiences this runner had internalized over his life to cultivate his courageous growth mindset despite a formidable obstacle.

Modeling a growth mindset themselves, parents of children with type 1 can let their children venture forth to be guided by experts such as those staffing diabetes camps. T1D youth will learn lifelong skills while having fun and parents will get a respite from caregiving along with the great reward of watching their children thrive with T1D.

Tara and son with type 1 diabetes

Photo credit: Tara Bryant-Gray

As I drop my 19-year-old son off this week for a socially distanced mini-semester at his university, I am grateful for his early experiences at diabetes camp, and subsequently in pre-college overnight programs. My son is stronger and more empowered because of these safe and confidence building opportunities which expanded his diabetes management skills and enriched his overall independence and development.

Source: diabetesdaily.com

Mommy Beeps: Parenting as a Type 1

12 Mar 2020 A1c, book, Dexcom, insulin, Intensive management, Life with Diabetes, parenting, parenting with diabetes, Partners, Type 1 Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Kim Baillieul

A few years ago, I sat at a park while my then two-year-old son played on the playground. A wave of dizziness fell over me right as I felt my continuous glucose monitor (CGM) start beeping. One, two, three – three beeps, confirming the low blood sugar I suspected.

Instinctively, I reached into my purse and grabbed the juice box floating among the loose change and used test strips. Of course, my son’s innate ability to sense whenever I have a sweet treat also kicked in, and the next thing I saw were his big, blue eyes fixated on my hand.

“Mommy, can I have your juice box?”

Sure, my sugar had dropped in front of my son before, but this was the first time I had no distraction for him – no alternative snack, no books to read. Most importantly, it was the first time he asked me to share. I shook my head and told him no, but he persisted.

“Mommy, pretty please, can I have your juice box?”

My mind went blank.

How do you explain to a toddler that your juice box is literally keeping you alive?

What I Was Told

For years – even when I was still a child myself – I was cautioned about pregnancy. At 16 years old, my endocrinologist painted daunting pictures of a hypothetical future high-risk pregnancy: weekly doctor’s visits, insanely tight control, constant monitoring. A massive list of things that could go wrong. All of this became my reality over a decade later when I became pregnant with my son.

My high-risk pregnancy with him had overall, gone well, partially thanks to the hard work I put in to maintain a 5.1% average A1C, and partially thanks to luck. I was prepared for the extra scans. I was prepared for the drastic insulin changes. I was prepared for the constant vigilance. I was prepared for what could go wrong.

However, nothing prepared me for how to explain my type 1 diabetes (T1D) to my child. Or why suddenly, at this moment, I couldn’t share a simple juice box. Frankly, I was so dizzy, I couldn’t even get up off the bench.

“I’m sorry sweetheart, I can’t share. This juice box is mommy’s medicine.”

Later, after my sugars were stable, I thought about how to talk to my child about my chronic illness and the scope of what he needed to know. I wanted to achieve a balance – somewhere between knowing enough to be empowered but not so much that he’d become anxious; enough for him to understand what I was doing, but not enough for him to feel responsible for it himself.

All my life I had worked to overcome and ‘beat’ my diabetes, to not let it stop me, you know, upholding the usual mantras of strength. However, as I pondered how to talk to my kids about my type 1, I had to set that all aside. Pride had no place here.

The conversation remained informal, but honest.

Understand that mama’s body doesn’t work the way most other people’s do… I’m not sick, but it can make me feel sick sometimes… This is my insulin pump… This lancet is sharp, please don’t ever touch it.

He had a lot of questions.

Yes, Mommy beeps!… No, you won’t get it when I cough… Yes, even if I forget to cover my mouth… Yes, I can eat most anything as long as I’m careful… Yes, even ketchup… Yes, even ice cream… Yes, even ketchup ice cream – wait, that’s gross!

We both erupted in giggles.

A Universal Struggle

One of the beautiful things about the type 1 community is knowing you’re not alone. As I reflected on this intentional conversation, one of the first ‘growing up’ discussions I had with my son, I realized I’m not likely alone in facing this. Turns out, I wasn’t – the Parents with type 1 community was peppered with struggling T1D parents facing the same hurdle. When I looked for resources, I didn’t find anything quite suitable for a type 1 parent.

Throughout my son’s toddlerhood, I captured my efforts in a children’s book I wrote called “Mommy Beeps: A book for children who love a type 1 diabetic.” It was a passion project of mine to provide a resource that didn’t otherwise exist, and hopefully help another family lessen the mental gymnastics of explaining type 1 diabetes to a child who doesn’t have it themselves. Every page is personal – down to the angry T1D on the phone dealing with a denied insurance claim. Because that is reality. Diabetes isn’t just about the finger pricks and injections – the medical and insurance logistics can be just as heavy. Extra doctor’s appointments, tracking of supplies, prescription refills – it all took time away from playing with blocks, giggling on the floor, or reading “Goodnight Moon” for the third time on a given evening.

As for my son, he took to my carefully crafted conversation well – and all of the impromptu ones that followed. Once, after a particularly harrowing high sugar, we planned a library visit to check out some books about the body, so he could find the “piece of Mama that doesn’t work.” We never made it to that page, though, because he was too fascinated by more amusing parts of the body (the toilet humor sure does start young).

A few years later, I braved the high-risk pregnancy world again and came out with a second little boy. The first time my type 1 diabetes interrupted our playing with trains, I talked to him, too. He shrugged it off and kept the train on its way to the station.

Later that night, he leaned into me. Pointing to my stomach, he exclaimed, “Mama’s Dexcom! I kiss it.” Clearly, something stuck in our conversation earlier that day. And I will take any win I can get.

They won’t know any other way, this will be their normal. And really, that’s a beautiful thing, because the T1D community is now just a little bigger.

Find out more about “Mommy Beeps” here.

Source: diabetesdaily.com

Parenting with Diabetes: I Taught My Two-Year-Old Daughter How to Be My Caretaker

21 Jan 2020 Apple, beta cells, Dexcom, diabetes diagnosis, exercise, insulin, Intensive management, Life with Diabetes, low blood sugar (hypoglycemia), parenting, parenting with diabetes, Partners, Type 1 Diabetes, Type 2 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Cherise Shockley

diaTribe Community Manager, Cherise Shockley, shares the story of her diabetes diagnosis and how that diagnosis affected her family

I was diagnosed with latent autoimmune diabetes in adults (or LADA, a type of diabetes between type 1 and type 2) in July 2004, at the age of 23. I was a newlywed, my husband, Scott, was deployed, and I had just finished five-and-a-half years in the Army Reserve. I was placed on oral medication (glipizide), and I began to manage this form of diabetes with diet and exercise, knowing that someday I would require regular insulin for the rest of my life.

In March of 2005, Scott returned from deployment, and a month later we found out I was expecting our first child. Nine months into my diabetes diagnosis, I was carrying my first child; I was temporarily placed on Regular and NPH insulins, because I had to stop taking my oral diabetes medication during pregnancy. At the time, I did not have a continuous glucose monitor (CGM) – the first version of the Dexcom STS wasn’t invented until March 2006,  as my colleagues at diaTribe wrote about here.

My pregnancy was smooth-sailing aside from my diabetes, which took quite a toll on me, but I knew if I did what I could to manage the condition, my little girl would be okay.

Eight months after I gave birth to my daughter, Niya, we said our good-byes to our families and moved from Kansas City, Missouri, to our new duty station in Southern California.

From the time my daughter was one year old, until she was reached two, I was taking oral medication, and my hypoglycemic episodes were few and far between. When I did experience hypoglycemia, I was either at home or at work, and my husband or my coworkers could help me out.

After my daughter turned two, I noticed that my medication was no longer working. With the help of my nurse practitioner, I tried everything in my power to get oral medication to work for me, but it was time to see an endocrinologist.

A few days after my first visit, I met with a nurse practitioner. He told me, “Your beta cells are still present, but we do not want to burn out what little function you have, so I recommend you start taking insulin.” I paused. Although I knew this day was coming, it was like hearing “you have diabetes” all over again.

When we began talking about pump therapy, I asked for something easy to use, knowing that my two-year-old daughter would be my primary caretaker.  I wanted Niya to be able to help me if she needed to.  With my husband working late hours and traveling, we made a decision to teach my daughter how to manage my diabetes. We taught her how to call 9-1-1, how to treat my lows with apple juice, and eventually, how to shut my pump off. In the back of my mind, I wanted her to know how to manage diabetes just in case she received her own diagnosis later in life.

Parenting

Image source: diaTribe

Many parents of children with diabetes share stories of not being able to sleep because they are worried about waking their child up in the middle of the night to check their blood glucose levels. In my family, my daughter was the person I woke up in the middle of the night when I experienced low blood glucose. Before I had a CGM, Niya was the person helping me check my glucose levels and stuffing glucose tabs or candy into my mouth in the middle of the night when my husband was not home.

From the time she was two, my daughter was my primary or secondary caretaker. Scott retired two years ago, so now Niya only helps me out when it’s just the two of us together. If she hears the alarm from my CGM, she asks if I am okay.

I never asked Niya how she felt about her role in helping me manage diabetes; I was nervous to interview my 13-year-old daughter, but I wanted to know how she felt.

Me: How did it feel growing up with a mother with diabetes?

Niya: I was a normal kid. I can eat what I want. I was able to learn how to manage your diabetes and help you when you needed help. I know how to recognize when you are okay.

Me: How old were you when you realized I had diabetes?

Niya: I was four or five. You asked me to film a diabetes video for you.  The hook in the song, “Who has diabetes? Help us stop diabetes,” made me realize that diabetes was a bigger issue. Diabetes was my normal – but the video helped me see that diabetes was also serious.

Me: Was there ever a situation that scared you?

Niya: We recently went to Disney Springs together during Friends for Life. You went really low, and I was scared that you weren’t going to be okay. I didn’t want anything to happen to you when I was with you; I didn’t want to be responsible. Diabetes is a lot of responsibility for a kid, but in some ways, I’m used to it.

Me: That was a scary moment for me, as well. It was the first time in a long time that I was not able to get my blood glucose levels to go up (with glucose tabs or candy). It was important to me to let you shop with your friend while the team at Disney Springs sat with me.

Niya: Thank you for letting me be a kid and not forcing me to live as if I had diabetes. I love you.

Me: Is there anything you would like to say to other children who have parents with diabetes?

Niya: It is sometimes difficult having a parent with diabetes. I now have two parents with diabetes, since my dad has type 2. I want other kids to know that they can navigate it – they will feel extra pressure that other kids don’t feel, but hang in there. When your mother is as special as mine, it’s worth it; diabetes is a big part of my family.

Source: diabetesdaily.com

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