The PROTECT Study

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

By Makaila Heifner

Let’s face it, there are a lot of research studies out there, and we mean… a lot. But one you should definitely know about is The PROTECT Study. Especially if you or a loved one was recently diagnosed with type 1 diabetes (T1D).

The PROTECT Study aims to understand how the investigational medicine, teplizumab, works in children and young adults who have recently been diagnosed with T1D, as well as assessing if there are any side effects while taking the medication. This treatment is still being evaluated in clinical studies and has not been approved by the FDA for treating T1D. In previous studies of high-risk individuals, teplizumab was shown to delay the onset of T1D an average of nearly 3 years (35 months).

Who Is Eligible for the Study?

This study will include 300 children and adolescents in clinics across the United States, Canada, and Europe that meet the following criteria:

  1. Age 8-17 years old
  2. Diagnosed with T1D in the previous 6 weeks
  3. Positive for 1 of 5 T1D autoantibodies (test to be done as part of the study) 4. Ability to produce a minimum amount of your own insulin (test to be done as part of the study)
  4. Otherwise generally healthy, with no other significant medical conditions, recent or history of infections, or taking medicines that might interfere with teplizumab

If you meet all the criteria, the next step is to visit a study clinic, where the study team will:

  • Discuss the study in more detail and explain what participation would mean for you or your child.
  • Talk through the potential benefits and risks of being involved in the study.
  • Ask questions and carry out medical tests to determine whether you or your child are right for the study and the study is right for you or your child.

If you and/or your child are interested in potentially participating in the PROTECT study, click here to find a study clinic near you.

Before the study begins, you/and your child must agree to and sign an Informed Consent Form which explains the study in detail, any potential risks or benefits of participation, as well as your rights and responsibilities as a participant of the study.

All study-related treatment and care will be provided to eligible patients without charge; however, patients will not receive any compensation for their participation in the study. Patients who decide to participate are able to withdraw from the study at any time for any reason.

Participants do not have to change their primary doctors as the study provides short-term study-related care only. Patients are encouraged to tell their regular doctors about taking part in a clinical research study. Some medicines are prohibited to take while part of the study so a patient’s doctor may want to contact the study physician to request additional information.

How Does It Work?

If you/or your child are selected to be part of this study, you/your child will be placed in one of two groups, either the teplizumab group or the placebo group (meaning you/your child will receive no treatment). Deciding who will be placed in each group is chosen at random by a computerized system, and neither you/your child nor the study doctor will know which treatment group you/your child was placed in. This is done so that results from the different groups can be handled the same way.

Over the duration of the study, you/your child will receive 2 courses of study medicine given by intravenous (IV) infusion. The IV infusion usually lasts about 30 minutes and will be given daily over 12 days on 2 separate occasions, 6 months apart.

The study will last just over a year and a half (the study reports the study will last up to 84 weeks) and require 36 study clinic visits, including the initial screening, treatment courses, and observation periods.

During visits to the study clinic, you/your child will be asked several questions and perform a series of study-related medical tests. These tests are done in order to understand how the treatment is affecting you/your child and how well the body is responding to the medication.

Identifiable information (for instance, name or address) will not be accessible to anyone who is not directly part of this study; additionally, The Sponsor (the company carrying out the study) will not have access to any personal information that is submitted through the study’s website.

Why?

The treatment works by interfering with the cells that destroy the insulin-producing beta cells in the pancreas. If the treatment successfully interferes with these cells (T cells) patients who are taking teplizumab may be able to continue producing their own insulin and reduce their need for insulin injections, have better control over their blood glucose, and experience fewer complications from T1D.

Visit theprotectstudy.com to learn more about PROTECT.

Source: diabetesdaily.com

Dexcom Share Etiquette

Life is safer than ever for people with diabetes; continuous glucose monitors, hybrid closed-loop insulin pumps, faster-acting insulin, and more accurate carbohydrate counting and precision medicine have saved thousands of lives and make the day-to-day with diabetes easier than ever.

One element of that technology that has been a godsend for parents and loved ones of people with diabetes is Dexcom Share. This feature of the G6 Dexcom continuous glucose monitoring (CGM) app allows the patient to share their glucose data with up to 10 other people, who receive all glucose levels, trends, and alerts to their cell phones 24 hours a day. But what is lifesaving for some seems too intrusive for others.

This article will outline Dexcom Share etiquette and what you should do if you’re in a sticky Share situation.

The CGM Revolution

Continuous glucose monitors save lives. What was unheard of only a decade ago is now ubiquitous in the diabetes community. Many people (thanks to widespread private insurance coverage and Medicaid expansion covering this expensive equipment in more states than ever) with diabetes wear these sensors on their skin, giving them up to 288 blood glucose readings per day.

More and more of these systems do not require calibrations, so kids and adults alike are more free from constant finger pricking, unpredictable blood sugars, and stubborn HbA1c levels without an apparent cause.

CGMs make life with diabetes easier, more predictable, and more manageable for patients and their caregivers. First introduced with the G4 Dexcom system in 2015, the Dexcom Share app has been revolutionary in that it allows loved ones of people with diabetes follow their blood sugars and be alerted to both high and low levels at all hours of the day.

It seems like a simple solution for kids, teenagers, and adults who may struggle with hypo-unawareness or to just act as a second set of eyes on an all-too-often complicated disease, right? Wrong.

Diabetes Is Personal

Diabetes and blood glucose data are personal. Some people are super open and accessible about their diabetes, but others are not. A 19-year-old away at college may be shy about sharing all of her blood sugar data with a new boyfriend, or she may be trying to exert her independence and prefer not to have her mom constantly texting her, asking if she’s treating her midnight low.

And while it seems counterintuitive (why wouldn’t we have as many safeguards in place as possible?), letting (mature) kids and teens learn to manage their diabetes on their own and step into their autonomy is important for growth.

While the feature is absolutely vital for younger children and people who suffer from hypo-unawareness, if you have a child or teenager who is very independent, mature, managers their diabetes well, and isn’t comfortable with the Share feature, it’s worth the conversation and shows you respect them if you’re open to not utilizing it. Ultimately, the decision is up to the person living with diabetes, and remember, people have been thriving with diabetes for decades before this technology ever even existed.

Safety Comes First

There are, however, caveats. If you’re struggling with open communication with your teenager, your loved one suffers from hypo-unawareness, or your child is traveling for the first time without you, the Share feature is an excellent way to stay alerted to overnight lows, stubborn highs, or worrisome trends that may need addressing.

It’s important to also remember the reason for the Share app: to better equip people with diabetes and their loved ones to protect the health and safety of the person living with diabetes. It’s not to nag, hassle, or judge them for their actions (or inactions).

Share followers should not criticize or belittle someone’s blood sugars; there are no “good” or “bad” blood sugars. Blood sugars are just information directing someone to what they need to do next (like take insulin, exercise, or eat something to treat a low).

The Share app is simply one more tool one can employ to improve their diabetes management and nothing more.

Tips for a Less Intrusive Share Experience

If the person with diabetes in your life is begrudgingly allowing you to follow their blood sugars via Share, here are some tips you can employ to make the experience less intrusive:

  • Always have a discussion with your child or teenager if you’d like to follow their blood sugars with the Share app. Do not hide it from them. They will find out.
  • Set the high blood sugar alarm high and the low blood sugar alarm low. If you set your follow alarms to go off at 160 and 80, your phone will constantly be buzzing, and you’ll constantly be texting your child/teenager asking them if they’ve taken their insulin or treated their low. Really only set alarms for safety, not to be a bother.
  • Use Share for a trial period. Test the system out, and if it’s stressing both of you out, turn it off for a while before trying it again.
  • If you notice your loved one is running particularly high or low, do not comment on trends unless they ask for advice or if they have an Endocrinologist appointment coming up, adjustments can be made then unless it’s threatening their health.
  • Do not text them to see if they’ve treated their high or low blood sugar unless it is jarringly so. If they are 78 mg/dL after exercise, you don’t need to tell them to drink juice, but if they crash in the middle of the night at a slumber party and their blood sugar is 39 mg/dL, it’s best to call immediately to make sure they’re okay.
  • Make this a fun, learning experience! Praise them for the progress they’re making, and remember, with diabetes there is no perfection.
  • Respect their boundaries, and if their thoughts and feelings on Share change overtime, revisit the topic and decide how you’d like to proceed together.

Everyone with diabetes is different, and their care and management will be too. Some people are more private about their blood sugars, while others enthusiastically request input from other people on advice and tips for improving their levels.

Allowing the Dexcom Share app into your life is a great privilege, but it shouldn’t be taken advantage of. Using it as a tool to help improve your loved one’s health and diabetes management can come with great benefits if approached with caution and a heavy dose of respect.

Do you utilize Dexcom Share for your loved ones, or do you share your blood sugars with family and friends? What boundaries have worked best for your situation? Share this post and comment below; we love hearing from our readers!

Source: diabetesdaily.com

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

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

Toddler Changes His Own Dexcom on TikTok: Advice From His Mom

TikTok has become more than just a place to dance along to the latest trend; it has become a platform for advocacy for many issues, and diabetes has received increased exposure thanks to this social media app. I couldn’t believe my eyes when I saw a TikTok of a very young boy putting on his own Dexcom G6! And he did it with confidence, bravery, and pride. I wanted to share Daxon’s story in the hopes that it inspires others as well. I reached out to his mom who was gladly happy to chat.

Hi Cassie, thank you so much for taking the time to answer my questions! I would love for our community to get to know Daxon a little better! He is such a great role model for other children living with type 1 diabetes (T1D)!

At what age was Daxon diagnosed and what were the symptoms?

Daxon was diagnosed exactly 1 month from his second birthday at 23 months old.

He started to get a bad temper spring of 2019 and we never understood why. He would get so upset so easily and we just thought it was because of terrible twos. In July, he threw up twice one morning for no reason and out of the blue. He started throwing up at nighttime multiple nights in a row and only at night. I took him to his pediatrician, and they told me “it’s probably the stomach bug, it’ll pass” but I told him “but randomly like that? It doesn’t make sense”.

After about two weeks, it stopped until August. He threw up one more time in the morning and then stopped. Once again, we had no idea why. At the end of August he started drinking and peeing excessively. What really gave it away was that he was drenched from head to toe in pee after a 2-hour nap period one day and that was it. I checked his sugar and it was 461 mg/dL (borderline DKA).

How did you as a family adapt to your new normal?

Honestly, we are still trying to adapt. We take it day by day because it is always changing. The one thing about diabetes is that no matter what, it is different each day. Even if you do the same exact thing, sugars will change.

Did you change Daxon’s and/or your family’s diet at all? What are his favorite go-to foods that don’t wreak havoc on his blood sugars? I’m sure lots of moms could use some tips!

I did not completely change his diet, but I do swap stuff out for healthier carbs and a lower glycemic index. He does low-carb bread, cheese, and crackers instead of mac-n-cheese, Go-Gurts, Two Good yogurts instead of the higher-carb ones, chicken meatballs instead of chicken nuggets, Fairlife milk instead of others  (because of his milk allergy, but it is better carb-wise also), keto-friendly cereal because others spike so much that I cannot get it down for hours, keto-friendly bread only because the GI level is so much better. There are some other changes, but the family has not changed any really. He does still eat candy, it is just more in moderation than before.

His go-to foods are pork rinds eggs, a brownie bar called “Good to Go”, keto-friendly ice cream, yellow bell peppers, broccoli, really any vegetable, cheese sticks, pepperoni, lollipop suckers. Any time we are out Chik-fil-A, grilled chicken and fruit are a must. That is all I can think of right now.

Photo credit: Cassie Daniels

At what point did you start using the Omnipod and Dexcom G6? How did Daxon handle that? 

The Dexcom was a month after being diagnosed and he did not handle it well at first. We would have to hold him down to get him to let me put it on. It was a nightmare but once he watched a friend of ours put her’s on and she told him “you have a robot just like me” he got used to it and now it is normal. When his phone tells us it’s time to change it, he’ll tell me “robot needs changed” and he will 100% do it solo now which is amazing.

The Omnipod was a little different. His first endo wouldn’t approve it because they thought he would take it off, so we had to wait but once we switched to a different hospital, they got him on it right away; so, he was about 7 months in when he was able to get the pod. At first, once again — NOT a fan and it was horrible — but once he learned it meant “no more shots” he was perfectly fine with it (sometimes). We will scream — and I mean scream  — the song “Baby Shark” so he will not hear the clicking for the needle and that seems to help also. He is currently working on putting the insulin in his pod so he is super excited about that.

I know I personally prefer shots, but am often intrigued by the control some pumpers get. Do you find using the pump helps make blood sugar management easier?

The pump for us personally is a lot better for different reasons. Omnipod allows such a small dose, so even 1 gram of carbs he would get some insulin, but with shots, we would have to round up or down, which meant [more fluctuations for him]. Also, in the middle of the night, being able to give him insulin without even touching him has been great. I hated waking him up to poke him with a needle. Also, when on the go we can dose from the front seat of the car. However, if he ever decides that he wants to stop the pump and go back to shots I will support him and what he wants 100%.

@cdaniels2015

95% completely solo 💙💙💙💙 He’s get the hang of this soooo quickly 😭🙏💙 #typeonediabadass #BigBoy

♬ Bang! – AJR

I couldn’t believe my eyes when my diabestie, Hillary Emmons,  sent me this TikTok of Daxon changing his own Dexcom! I am so impressed and inspired! At what point did he express interest in doing that?

After about six months of being a type 1, he has always been curious about everything. He has been checking his own sugar with the meter since about 6 months in when needed to be checked. And recently he was really showing interest in the Dexcom and doing it solo. He did half of it one day and then the next change he did it completely on his own, all I did was hold it and help place it. I never asked him to do it because I didn’t think he was ready for that task yet but that day he told me “I do it” and that was it. Now he is showing interest in some of the Omnipod stuff, which is amazing because he feels in control.

I give you credit as a parent for letting him own his management and giving him the confidence to know he can manage his disease! What would you like to tell other parents about how to get children to want to be a part of their daily care?

Make it positive, make it fun, and make it normal. We have the JDRF bear and we practiced on that since being diagnosed. At first, we used it so he could understand more of it. We also got his big brother and all the other family members involved since day one. We check everyone’s sugars, so it is normal for everyone. All the children in our family (our boys and our 3 nieces) have been very curious about it since day one.

I see you are using TikTok as a platform for awareness and this one video alone got over 103,000 likes! Kudos! What would you like people to take away from your videos?

I want people to know the signs of T1D and to normalize it. I hate when I see people hide that they check their sugar or even giving their self insulin. I want to help parents have a voice for their children because doctors sometimes do not listen, and we need to be loud for our children and to follow their gut. I have a lot of people say that he encouraged their children to try putting the Dexcom on solo and I love that it is helping other children also. One of my TikToks potentially saved a child from dying. Her sugar was almost 1000 mg/dL and she was in DKA and doctors were surprised she wasn’t in a coma. Children should not die for people [not being able] to figure out what is wrong!

Does Daxon enjoy making the TikTok videos? I think “injecting” some humor and fun is the best medicine of all! And one you can all do together as a family!

Daxon loves showing people his stuff. He knows it makes him unique and he loves seeing others who are like him. So, when people duet his videos and they show their Dex or pod it’s helpful for him also to see that there are others like him.

Photo credit: Cassie Daniels

What else does Daxon like to do with his free time when he’s not managing his diabetes and TikTok’ing?

Daxon is a typical boy and I mean ALL boy. He rough houses with his brother, loves to color, help with dishes, cooking, loves to read books, play outside, ride his 4-wheeler, and absolutely loves cuddling with me. I think him being a T1D made our bond even stronger.

How does Daxon feel about being a TikTok sensation and knowing that he is helping to inspire many other children just like himself!

I have told him many times that he is helping other children and I don’t think he really understands what it means yet, but he always smiles and says “they have a robot like me” or he’ll go “yay that makes me happy”. I ask him “do you want to make a video?” and normally he’ll tell me “yessss let’s make a video”. I will never make him make TikToks so if he tells me no then I’ll leave it alone.

I ask this in every interview! Do you think they’ll be a cure in Daxon’s lifetime?

100% honestly I do not foresee a cure ever. They make way too much money from insulin (when it should be free, but that’s another story for another time). I wish there would be a cure, but I don’t see it happening.

Daxon

Photo credit: Cassie Daniels

What advice helped you? Can you pass it along to parents of newly diagnosed children?

My advice for parents is:

  1. Take one day at a time because it is an always-changing, never-stopping, headache of a disease.
  2. Do your best and never get down on your child for their blood sugars. That is the one thing I will never do to Daxon, anytime he has “bad” sugars, I never express it to him or show it on my face because it is not his fault, so I don’t want him to feel like he is failing.
  3. Always tell your child they can still do anything they like and never change activities. Just change foods to help [manage sugars during] the activities. For example, we took Daxon and his brother to a trampoline park and I knew his sugar was going to drop. He started at 170 mg/dL and dropped to 50 mg/dL. I was prepared with milk, yogurt, chocolate, and others, so he could still have fun and be a kid.
  4. Try not to have a fight if sugars are not in range, because everything is magnified if high or low. So what I do with Daxon if he is high or low and has a temper tantrum, I ignore it and let him do what he needs to do. Once he calms down, we discuss what happened and I explain I understand he doesn’t feel good but he doesn’t need to act that way.
  5. Treat them like you would any other child because diabetes does NOT define them.

Where do you see going with your advocacy and awareness on social media or elsewhere? Do you have other plans in the future?

I would love to bring more awareness to this disease. I would love for there to be a law that pediatricians must check A1c every year or every other year. They check your iron, and they check lead so why not diabetes? [Some] pediatricians think that younger children cannot get diabetes until at least six years old which is not true. It is ridiculous because a child’s death is avoidable if people were more aware of the signs and doctors tested when they should.

Thanks again Cassie, we really appreciate you taking the time! I look forward to continuing to follow Daxon’s journey and see how many kids he inspires along the way!

Source: diabetesdaily.com

Rare Until It Happens to You: The Kycie Terry Story

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

By Jordan Jendricks

Jamie Terry doesn’t know what exactly it is about her daughter that resonates so deeply with people. But there’s something about the combination of her curly blond hair, striking blue eyes, and the circumstances around her unfortunate and preventable death that have incredible staying power, inspiring countless others to action.

“There have been many times that I’ve thought about that. There are sick children all over the world, why Kycie? But there’s something about her and I truly believe she was here on a mission. She’s still on a mission. I just think there’s a reason behind it all.”

Because even now, five years after her tragic passing, strangers from around the world still reach out to the Terry family about their little girl. They remember Kycie and her story, which has reached thousands and saved an untold number of lives. Kycie’s father, Josh, has lost count of how many other parents have thanked him, explaining they, too, might have lost a child if not for his daughter’s story.

“I don’t know why it went as viral as it did. I think she just has a face, too. And you can see how heartbreaking it was and how hard she worked to try and get back. If you lose a child or you lose a family member, to think that they died for nothing, it’s that much harder. To know that she’s made a difference in other people’s lives and helped save other people’s lives, and saved a lot of heartache and struggles, it’s more doable.”

Kycie Jai Terry was the second youngest of six children and the only girl. After four boys, Jamie remembers crying tears of joy over her fifth ultrasound and the realization she would finally have a little girl. She remembers her daughter as a vibrant child, who loved to dress up, ride bikes and catch lizards; who was a little bit of everything and unique, as her name suggests.

“I don’t think I realized at that time, but now I think there’s a reason that she has this unique name because you Google her and she pops up and it’s because she needed to make a difference in the world.”

Where Things Went Wrong

Kycie

Image source: Beyond Type 1

Kycie was diagnosed with type 1 diabetes on January 30th, 2015 while in DKA (diabetic ketoacidosis). Where her story differs from many who live with undiagnosed type 1 and go into DKA is that she ultimately experienced cerebral edema, a condition where fluid builds up around the brain, causing pressure and swelling. This complication was occurring unbeknownst to the healthcare providers treating her at the time, wreaking havoc on Kycie’s brain and nervous system as she slept in her ER room bed. Less than 1% of pediatric patients in DKA experience cerebral edema, making it rare, though this statistic was of little comfort to the Terry family. As Josh puts it, “It’s always rare until it happens to you.”

As he recalls, Kycie’s initial symptoms started with a headache, then a stomachache. It seemed like she might have had a stomach flu, then strep. But she didn’t get better with antibiotics; in fact, she worsened. She didn’t want to eat, she only wanted fluids, and she was suddenly remarkably skinny. The Terrys felt an urgency to take their daughter to the hospital as her condition only seemed to get worse. She was extremely lethargic once there, and Josh recalls her fruity breath, a tell-tale sign of ketones. Sure enough, the doctor quickly revealed the cause of the problem: “She has type 1 diabetes.”

But Kycie’s blood sugar was difficult to control. Later, the Terrys would learn that during this time in the ER, doctors were focusing solely on treating her diabetes without realizing that she had experienced any brain damage, or that it was growing worse. With blood sugar readings over 1,100 mg/dl (61 mmol/L), Kycie was in severe DKA and needed to be life-flighted to a children’s hospital five hours away. After landing, she suffered a seizure on the ambulance ride from the airport to the hospital. Four hours later, she was intubated, on a ventilator, unresponsive and in a diabetic coma.

An MRI was completed after Kycie was in a coma for over 24 hours, revealing for the first time the cerebral edema. Doctors told the Terrys that they didn’t expect her to live, but Kycie fought, ultimately coming to breathe again on her own before waking up. She spent the next 111 days in the hospital to relearn basic functions, after which she was able to go home and live with her family for another month and a half, though her life was entirely different. It was suddenly a feat for the five-year-old to hold her own head up, smile, or roll over by herself. Josh remembers feeling torn and heartbroken to see his daughter’s life suddenly so difficult.

“I remember sitting up there and thinking what a horrible situation she was in – a situation I wouldn’t want to be in. If I was in that place, I wouldn’t want to live that life,” he shares. “At the same time, she’s my little girl and it’s my job to protect her and my job to be there for her. It was a really hard place to be.”

Kycie

Image source: Beyond Type 1

The family continued on, taking care of their daughter and treasuring the few good times during otherwise long days. They documented their new normal, sharing feel-good moments and milestones on social media.

Kycie then caught a virus that led to pneumonia and another hospitalization, setting back some of her progress and making her less responsive. Though she was able to return home after growing stronger, in the early morning hours of July 11th, her oxygen levels were extremely low and her parents were poised to take her to the hospital yet again. Before they could leave the house, the second youngest Terry passed away peacefully in her father’s arms. She was a few months shy of her sixth birthday.

Her Legacy Lives On

Kycie is well-known now in the diabetes community, her story having touched so many all over the world. Beyond Type 1’s Warning Signs Awareness Campaign, which began in 2016, was inspired by her story and the reality that both misdiagnosis and missed diagnoses are problems that can be solved through education and awareness. Josh and Jamie both can’t underscore enough the importance of being able to recognize the signs and symptoms of type 1 diabetes.

“To get an early diagnosis is so critical. If you can catch type 1 before DKA, you’ve saved yourself the possibility of brain damage,” Josh explains. “And so that early recognition is so vital, not just because of the scariness of DKA, but because of the unknown that comes with it.”

Jamie reflects on her own lack of knowledge about diabetes in general and how Kycie’s situation truly opened her eyes to a chronic illness that affects so many on a daily basis.

“I knew nothing about it. And the thing that’s crazy with Kycie is it all happened so fast. Within five days, she had a traumatic brain injury,” she explains.

Jamie sympathizes with everyone who manages type 1 diabetes, having gotten a small taste of the complexity of the disease while caring for Kycie’s type 1 diabetes (T1D) the short time she was able: “That’s what is heartbreaking to me. Anyone that ever comes up to me and tells me they have type 1, the first thing I say to them is ‘I’m so sorry’ because it’s so much to take on. And we didn’t even get to.”

The Terry family now advocates for safe and early diagnoses of type 1 diabetes, sharing about Kycie whenever they can and working with local hospitals to help improve type 1 protocols. In Josh’s practice as an optometrist, he lectures others in his field on type 1 and the importance of recognizing changes in vision as potential signs. Their family is continually touched by the outpouring of love for their little girl and all they’ve been through, the community they’ve found through their loss and the surprising amount of good that has come out of an otherwise tragic situation.

As Jamie puts it, “There’s no greater title than ‘Kycie’s mom.’ It will always be hard to live without her, but part of the healing journey has been to know that she has saved and continues to save lives.”

Source: diabetesdaily.com

Realistic Goal-Setting and Avoiding Stigma: One Mom’s Perspective

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

By Bonnie O’Neil

The title of the article arrests my attention, compelling me to read further. The Numbers of Shame and Blame: How Stigma Affects Patients and Diabetes Management. I shudder as I read the results of a study by the diaTribe Foundation. “Diabetes stigma affects 76% of people living with type 1 diabetes (T1D) and 83% of parents raising a child with T1D.” The statistics are so high.

Stigma. The word itself sounds uncomfortable on my lips. Diabetes stigma means carrying a sense of disgrace or shame because of having T1D, an unpreventable auto-immune disease.

I continue reading. “The majority of respondents who believe T1D is associated with social stigma identified the top three drivers of diabetes stigma — a perception of failure of personal responsibility, a perception of being a burden on society, and a perception of having a character flaw.”

I cringe as I read these findings. Does my son feel like he’s a failure when his blood sugars don’t cooperate and do what he wants them to do? Maybe he does. I know as his parent and caregiver I feel like a failure when his A1c isn’t what I had hoped it would be. Does he feel like he’s a burden on society? On his school? On his family? Oh, I hope not. I can hardly even reread that last driver of stigma on the list. Does he feel like he has a character flaw simply because he has T1D? My heart rises up to my throat.

How can I help my son navigate living with T1D in such a way that he doesn’t fall prey to the shame and failure associated with disease stigma? Rereading the statistics, I pause and ask myself another question. How do I as his parent carry disease stigma? The survey tells me 83 percent of us parents raising a child with T1D are affected by it. Am I a part of that 83 percent? When his physician suggests we make some changes to achieve better outcomes, do my reactions model for my son my own feelings of failure, guilt, or shame?

Whether overtly stated or simply implied, we all have goals in mind for our child’s T1D management. While I never announced my goals as clearly as I would my New Year’s resolutions, my son and I both knew what they were.

  • A1c at 7.0 or below
  • Blood sugars between 80-150
  • Not too many juice boxes in a day

Setting goals is important; it’s what keeps us moving forward as humans. During certain times of the year we’re especially focused on goal setting. Whether it’s January’s hopes for the new year, September’s back-to-school focus, or our birth month marking one more circuit around the sun, we can’t escape the human drive to set goals.

But in our best efforts to keep our child healthy and safe, how can we set reasonable goals that serve more as guard rails than leave us feeling stigmatized if the goals are left unmet?

Set Realistic Goals

It’s easy to slip from the hope and optimism of setting a new goal to feeling shame if those goals aren’t attained. Start small when setting new goals. Remember your child lives with this disease 24/7. Your eagerness to try a new approach to glucose management might feel like the addition of one more heavy weight placed on top of what your child is already carrying. Check in with your child. How does he feel about your goals? There’s a fine line between maintaining glucose control and contributing to diabetes burnout.

Hold Your Goals Loosely

Beware of the trap of stigma when we don’t hit our goals. Commit to living in the no-shame zone. The statistics reveal that 83% of parents raising a child with T1D struggle with stigma, meaning we parents struggle more with shame than even our children with T1D do. The next time you find yourself stressing over an unmet goal you have for your child’s care, recognize that the 83% is you. And it’s me. Let’s break the power of stigma in our own lives so we don’t model it and pass it along to our children. Offer grace to yourself and your child if the goals go out the window for a period of time. You can always get back on track once this season is over, so don’t buy into the failure narrative. Be good to yourself and to your child.

Be Aware of What You Reward

When my son was young, I would often take him to buy a small toy or gift after his appointments with his endocrinologist. It was a few years before I realized that I only bought him a treat when his A1c was at a level that met or surpassed the goal I had in mind. What message was I sending to my son? That I only reward what makes me proud? That my pride in him was linked to his A1c? Even well-intentioned gestures can leave our children feeling shame when they don’t reach our goals. Instead of rewarding only those times when the numbers match our goals, why not celebrate our child’s hard work and the joy of sharing life together after every appointment?

Watch Your Words

Goals like “Let’s do better with blood sugar control next year” imply a judgment that the past year was less than stellar. Your child (or you) may receive this message as a judgment that they (or you) were less than stellar last year. Words like better, good, and bad, which we use all too frequently when talking about blood sugars, are qualitative and can leave our child feeling stigmatized. Blood sugars and A1c’s are just numbers that provide us valuable information from which to make future decisions. Being careful with our language can help protect our child from carrying a sense of stigma.

Remember above all, our goal isn’t really about reaching blood sugar goals. Our goal is to build a healthy lifelong relationship with our child based on respect, encouragement, and love.

Source: diabetesdaily.com

New Target A1C Recommended for Youth with Type 1 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Matthew Garza and Lydia Davis

The American Diabetes Association has lowered the A1C target for children to less than 7.0%, aiming to improve long-term health outcomes without increasing hypoglycemic events.

The American Diabetes Association (ADA) recently issued a new recommendation on A1C targets for children: youth with type 1 diabetes should aim for an A1C below 7.0%, rather than the previously recommended target of 7.5%. The ADA also emphasized that although this is a target for the general population of children with type 1 diabetes, it is important that each child’s A1C goal be personalized, taking into account hypoglycemia awareness, baseline A1C, and other health issues.

In 2018, the American Diabetes Association (ADA) reiterated its long-held recommendation that children with type 1 diabetes should aim to have an A1C of less than 7.5%. This target was designed to help prevent severe hypoglycemia (low blood sugar) in children. The ADA has revised that position in light of a recent review paper, which showed that elevated blood glucose levels can lead to significant complications during child development, including abnormal brain development, an increase in heart problems, retinopathy, and neuropathy. The review also showed that newer diabetes therapies and technology have resulted in a lower risk for severe hypoglycemia.

However, for certain groups of at-risk children, this new recommendation may not apply, and it may be safer to target an A1C of 7.5% or higher. Children with low hypoglycemia awareness, those who cannot alert others to symptoms of hypoglycemia, those without access to helpful diabetes technology (such as continuous glucose monitoring), and those who cannot test their blood glucose levels regularly should continue to aim for an A1C of less than 7.5%. Children with a history of severe hypoglycemia should aim for an A1C of less than 8.0%.

In contrast, children who are not at risk for hypoglycemia (for example during the often-experienced “honeymoon” period) should aim for an A1C as low as 6.5%.

The lower A1C goal of 7.0% will hopefully lead to a reduction in diabetes complications during childhood and throughout the lives of people with type 1 diabetes, without increasing their risk of severe hypoglycemia while they are young.

Source: diabetesdaily.com

Exhaustion and the Sleep-Interrupted Caregiver

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

By Bonnie O’Neil

Nights are the most draining of all. With the weight of our daily work, parental responsibility, and type 1 diabetes (T1D) caregiving still heavy on our shoulders, at day’s end we long to lay our burden down, retreat to the comfort of our bed, and fall gently asleep. But once T1D breaches a family’s sense of well-being, nightfall no longer signals a time of stillness. For those of us in the trenches of T1D, nightfall ushers in a time of heightened readiness…

It’s basketball season for my growing nine-year-old son, so the past several nights I’ve had to test his blood sugar throughout the night. The sleep interruption has taken its toll. I’m bone-weary with no prospect of sleep anytime soon.

I’ve been testing my son’s blood sugar for hours, but despite my best attempts to elevate his blood sugar, his numbers still aren’t high enough for me to safely go to sleep. My noble efforts are no match for what his small body can do without a functioning pancreas.

By midnight I can stay awake no longer. His blood sugar is still not where it needs to be, so I slip under the covers, setting my alarm for thirty minutes. When the alarm rings, I struggle to get to my feet, wrestling with the slumber that keeps me pinned to the bed. Willing myself to think clearly, I make my way down the hall to my son’s room, prick his finger, and wait for the meter to complete its five-second countdown.

Sixty-eight.

Oh, come on. He has consumed five juice boxes by now. Drink one more, sweet baby. I will be back again in twenty minutes to check on you.

I crawl back into bed, setting my alarm for twenty minutes, and close my heavy eyes. Eventually, things begin moving in the right direction. I make one final test at 3:00 a.m., just to be safe.

It was a six-juice-box night. When the alarm rings at 6:30 a.m. signaling the start of a new day, I can barely lift my head off the pillow. Jittery and unable to think clearly, I move as if in a fog. This is not the type of morning fatigue a slow cup of coffee will remedy.

Love Till It Hurts

When sleep interruptions carry with them elements of fear, they take an even greater toll on us. Haunting questions jar us to attention. What if my alarm doesn’t wake me? What if his blood sugar drops too low and he has a seizure? What if I miss an eight-hour high and she awakens with ketones? Our fears are real, and they propel us to get up, even when our bodies cry out for sleep.

This is when we long for the pre-diagnosis days of sleep-filled nights and less stress-filled days. But when we continue to wish away our child’s illness rather than accept it, resentment blocks us from loving our child sacrificially.

One night as I sat vigil, when fear was at its greatest and my sense of control at its weakest, a new question emerged. Is my heart expansive enough to fully embrace that which I cannot change so I might unreservedly love the child I hold before me? Accepting how things are — even if painful — frees me to care for my child with an open heart rather than a bitter heart.

And wherever the heart is open, love can grow.

Genuine love always requires sacrifice. The hours of the night watch have taught me to love until it hurts. As I learn to love my child well — by accepting life as it is and doing my best to care for him at the moment — the real transformation can begin within me. When I practice loving sacrificially, I know hope is not dead.

Where there is genuine love there will always be hope.

Be Good to Yourself

Likewise, I must offer myself grace when I most need it.

The day after a sleepless night is especially challenging for us caregivers. Crushed by fatigue, our tempers are short, and we tend to overreact to people and situations. When I react out of sleep deprivation, guilt points a finger at me. You’re not doing a good enough job. You should do better. The accusations are deafening. But if I can get still enough to quiet this voice, another voice emerges.

Be good to yourself.

The words, barely audible, rose up out of my spirit one fatigue-drenched day after an especially difficult night. Be good to yourself today. Sometimes we need our inner voice to remind us that the nighttime work of caregiving may be the most important work we will ever undertake. When we choose to sacrifice our own needs for the well-being of our child, we are choosing love.

Don’t minimize this. Your vigilant care is the greatest gift you can offer your child.

Being good to myself means redefining some of the expectations I may have for my day. In the busy seasons of life, it is especially important to reject the tyranny of what the culture says we should do and to choose instead to focus on what is healthy for us to do. That may include reevaluating our calendars, postponing appointments that can easily be rescheduled. Looking for ways to say no to optional activities that take more of our energy and focus, and yes to activities that are in some measure restorative. Accepting offers of help from friends or fifteen minutes of quiet to catch our breath. Above all, we can offer ourselves the grace to go slower than usual.

Accepting this offer of grace creates the space we need to re-center.

Be good to yourself today is now my constant refrain. I hope you’ll make it yours.

Source: diabetesdaily.com

Why This Picture Makes My Mother Emotional

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

By Esi Akyere Mali Snodgrass

When I was in the 4th grade and attended Roosevelt Elementary School in Iowa City, Iowa we had a school-wide science project called ‘Operation Egg Drop’. The challenge was to have each class pull together their best ‘engineers’ to build a contraption out of edible materials that would be wrapped around an egg that would withstand it being dropped from our school’s rooftop. Marshmallows, powdered doughnuts, Twinkies, snowballs, small cinnamon rolls, and a lot of other edible padding was donated by the local companies and provided in bulk to each class. I squished each individual item in my hands to guess which arrangement would be most successful to protect the egg on impact. Many of the items I had never actually held in my hands. When I opened each package, their scent was overwhelming, and unlike anything I had ever experienced. It lingered and hung in the air.

Sweet Creations

On the big Egg Drop Day, the entire school stood outside and watched as their best attempts were tossed over the side of the building. Each student cheered for the other classes in the spirit of true sportsmanship. My class lost, but it didn’t matter, it was a lot of fun; I remember it to this day. The leftover edible materials that weren’t used for the Egg Drop were divided amongst the students for them to enjoy. I took mine home to my siblings.

A few weeks later, I walked into the classroom and the now familiar, overwhelming scent of sweet packaged materials had filled our classroom once again. Our teacher Mrs. Saunders decided to continue the edibles-turned-building-material theme with a new project. She told us that we were to build a gingerbread house out of cinnamon graham crackers, assorted candies, and frosting. Since our class didn’t win the last event, I was so excited to be given the opportunity to redeem myself from the Egg Drop and to make something great. I was ecstatic and began to sketch my idea out on the provided paper plate. In my mind, I was drafting a blueprint and building a tiny yet deluxe home from Hansel and Gretel.

I had an absolute mansion in mind and used the sugary goop to connect the gumdrops to the walls and to withstand the decorative attic and chimney I planned to add. I was so enthralled with the activity that one would have thought I was building something humans would actually live inside. I delighted in the entire experience. Mrs. Sauders scanned the room, attempting to encourage the frustrated faces of the students who wanted to eat the materials and those who didn’t or couldn’t see the edible materials as anything other than… edible.

Once Mrs. Saunders made it over to my desk, I was giggling to myself with excitement and pure pride that my imagination had built something that was so grand in my eyes. She laughed and took my picture at that moment. Once we had all finished and done what we could do, she gave us all Saran Wrap to cover our creations to set on display for the next two days. Most students had a pile of confectionary rubble and were frustrated from the entire process. On the day we were to consume our creation, Mrs. Saunders gave me this picture to take home. Reinforced with globs of frosting and standing strong on its paper plate, I kept my house wrapped in its Saran Wrap to take home to my siblings to enjoy.

Just a Kid

Decades later, this picture resurfaced and all the memories and feelings of pride, accomplishment, determination, and happiness flooded back to mind. When I showed my mother grinning, she looked teary-eyed and emotional. Confused, I asked her why the picture gave her such a reaction.

‘You didn’t lick your fingers, Esi… You didn’t even lick your fingers…I don’t know how you were able to resist doing that… You were a kid, that’s the most fun part…’

I looked back at the picture, trying to understand what she meant, and I saw the frosting: white and goopy hanging from each of my fingers. I grinned and laughed.

‘Lick my fingers? I was all about building a Hansel and Gretal house, why would I eat my mater-‘

It hit me at that moment, in all the years to that point that I had lived with type 1 diabetes, refined sugar was so far from my consumption experience that I had never, ever thought of eating any of the ‘building materials,’ I was playing with that day myself. It never crossed my mind. It was as foreign of a thought as eating paint or wood. My mother saw her baby girl missing out and wished she had supplied me with sugar-free options or asked the teacher to give me an equally fun yet alternative activity; I saw a goofy kid having an absolute blast.

Perspective Can Determine Our Joy

I say all this to say that perspective can oftentimes determine our joy. There are so many things that many of us humans cannot do: fly without assistance, breathe underwater without assistance, move as fast as a cheetah without assistance, or even process glucose without assistance. Whatever it is that each of us cannot do, it does us no good to sit in the ‘can’t,’ to settle in the restriction. It is futile to focus on the endless lists of things that we are unable to do or experience when there is so much we can enjoy and accomplish… What can you do? What can you enjoy? What brings you joy? How do you turn your pile of ‘edible materials’ into a Hansel and Gretel mansion? How do you turn your lemons into refreshing (sugar-free) lemonade?

Source: diabetesdaily.com

Parenting Your Homebound College Student with Type 1 Diabetes: Empathy Above All

It was early August and we were making the final preparations to send our son with type 1 diabetes (T1D) off to college for the first time. Like so many parents, the newly purchased necessities like cozy bedding and fresh pillows were ready to be loaded for the car ride. Unlike most parents, the stockpiles of pump supplies, insulin, and juice boxes for lows were piled high and deep. My husband and I would have a two-hour window to get him moved in due to COVID-19 restrictions, and we had to plan for where our younger son would wait during this bittersweet process of seeing his brother off.

Jack, who was diagnosed with T1D at age 11, was headed to his dream school in his favorite U.S. city. Still, there was an undercurrent of trepidation that contained our enthusiasm. It felt surreal that a packed up car was going to pull out of the driveway in a few weeks while a pandemic was sweeping the nation. Jack knew this uncertainty first hand since his dad is an intensive care unit physician who had been on the front line treating people with COVID-19 since March. It turned out that Jack’s school elected for a virtual semester. Jack took the news better than we did because he expected it all along. Such is the resignation and resilience of kids with T1D; they have lived with levels of disappointment and daily adjustments since their diagnosis.

College did unfold here within the confines of our home and relationships commenced with new friends from all over the country via online learning. So did an internship in local government with long hours spent masked up for his and others’ protection. “Adulting” was starting and many new routines emerged, including a necessary shift in our parenting style.

Embarking on college for T1Ds, whether they were diagnosed as babies or at any other time in childhood or adolescence, signals a vulnerable time for parents who have kept a steadfast watch on their children’s tricky condition. No matter how independent your child is, it is daunting to think of them living away with no opportunity for you to respond to a low that they are sleeping through, or assist them with a pump change when they are tired and weary from a long day at school or work.

So, with tremendous guilt, I did utter a small sigh of relief when I learned that Jack’s milestone leave-taking would be delayed for a while. However, as both a mindful parent and a psychotherapist, I knew that perspective-taking and empathy would be essential in my response to Jack’s disappointment. If I stayed stuck in the comfort zone of my old routines and behaviors, thus clinging to my relief, I would be invalidating Jack’s feelings, potentially alienating him from me, and thwarting his self-actualization. What I did not realize is that I would be short-circuiting my own development as a parent.

This was a golden opportunity to shift our entire family into a new configuration of having an adult child in our constellation and this required a new rule book. Early on, we fell back on familiar parental scripts with admonitions about staying up too late or eating certain foods too close to bedtime when blood sugars are likely to fluctuate harshly disturbing his sleep. None of this landed well for Jack who was trying to adjust to college and an internship while processing his disappointment over not being on campus. Truly, we were adding insult to injury, so something had to give.

I kept being reminded of one of my brilliant grad school professors at the University of Pennsylvania, Dr. Sharon Ravitch, and her writings at the beginning of the pandemic. “Flux pedagogy” was her trauma-informed characterization of how to thrive amid constant, and often frightening levels of change and threats. Dr. Ravitch applied this to teaching and learning, but I borrowed from it heavily in terms of my parenting. Taking an “inquiry stance” as she said, would allow me to back off of my usual burdensome need for control. As Ravitch emphatically suggests,

“Now more than ever, it’s important to situate yourself as a learner, to examine yourself and your practice through a reflexive lens that helps you to engage, understand, and relate with others through your own curious humility about yourself and your ever-changing practice.”

Being a learner permitted me to focus less on the alleviation of my insecurities about sending Jack away soon with his diabetes, and more on his perspective on his world. I could enhance his life by intentionally giving him the space to be an adult, or I could make his world smaller and more claustrophobic by my hovering with constant focus on his glucose monitor readings, among other things. If I did the latter, I would be thwarting so many wonderful aspects of Jack’s transition into adulthood such as self-efficacy, problem-solving, and autonomy. During an already stressful time with COVID-19, letting Jack succeed on his own would only make his goal attainment more satisfying as well as grit-promoting for his future endeavors.

So, I bit my tongue when I saw the light on at 2:00 am. My guiding principle would be to ask myself, what would he be doing in college right now? He certainly would not want to be answering an annoying or intrusive phone call from his parents. I remain very careful not to show sympathy to Jack which can come off as condescending or to voice to him any platitudinous hidden benefits of him being home. In this vein, author and researcher Brené Brown cautions us that when we impose our “at least” statements or “silver linings” on others we distance ourselves rather than build connections through authentic empathy. If there are any upsides to Jack being at home now for college, I have left them for him to discover on his own.

The result of my flux pedagogy parenting mindset has let me bear joyful witness to Jack’s management of his T1D as well and independently as ever. Balancing work and school while seeing friends in a socially distanced way, he has practiced “adulting” while living with dignity and privacy among other adults, his parents. There is solidarity from a shared experience with empathy, a top of mind practice in our home. In my psychotherapy practice, I have shared this mindset with clients and their families as they adapt to life under the trials of COVID-19.

For T1D parents, be guided by the principles of flux pedagogy by showing compassion to yourselves and your young adult children during this stressful time of uncertainty. We can parent capably through the fog, and as anyone who has driven through fog knows, you need to slow down. If you turn up the intensity of your headlights, it will only obscure your vision. Instead, just decelerate, listen more, empathically join your kids, and your families will emerge from this chapter stronger and more connected.

Source: diabetesdaily.com

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