Adolescence, Stigma, and Owning Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Katie Bacon

Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.

Adolescence can be a confusing time, and this is doubly true for teenagers with type 1 diabetes. At a stage when everyone is starting to figure out who they are, the teenager with type 1 must also decide how much they want diabetes to be a part of their identity. Katie Bacon, the mother of a teenager with type 1, spoke with a range of experts and peers who shared their expertise and experiences on this subject.

Our daughter was diagnosed with type 1 diabetes at six years old, just before she started first grade. At the time, it was important both from a safety perspective and from an emotional one that the people around her knew about her diagnosis. Along with her teachers and the school nurse, we let all her friends and their parents know, and they rallied around us to support her. She quickly owned having type 1. It became an important and immutable part of her identity, one she was proud to share with others.

Fast forward eight years to this past fall, when she was doing orientation for her new high school. After being surrounded by a group of familiar and supportive friends from kindergarten through eighth grade, here she knew almost no one. Not to mention that, in the era of COVID-19 – with masks, cohorts, and strict rules about socializing – it would be much harder to meet people.

During orientation she was asked to create a timeline of important moments in her life. While chatting about what she might write, I asked if she was going to include her diagnosis. Her response seemed to come completely out of left field: “Why would I put that down? I’m not planning on telling anyone unless I become really close friends with them.”

She made it clear that she was now much less willing to acknowledge having type 1 as she entered high school. Although she didn’t express it quite this way, it seemed that the reason stemmed from a desire to avoid being judged or stigmatized – she didn’t want to be known as the new girl with diabetes. So, we agreed that we would tell the school nurse, her teachers, and her sports coaches – for her health and safety, it was non-negotiable that they all know. We also agreed that it would be up to her to choose when (and if) she would tell her friends.

Still, it felt like my daughter was cutting away her safety net. I wanted to know if this shifting perspective on her condition was typical for teenagers, and I wanted some advice on how to help her through it. I reached out to Rachel Rifkin, a longtime friend who was diagnosed with type 1 at age ten; to Dr. Ananta Addala, a pediatric endocrinologist at Stanford Children’s Health; and to Dr. Persis Commissariat, a pediatric psychologist at Joslin Diabetes Center who also has type 1. Through their expertise and experiences, they helped answer my questions about disclosing teenage diabetes versus hiding it; about stigma, perceived stigma, and how to deal with it; and about how to let go a little bit while still giving our daughter support through this process.

One of the crucial parts of adolescence is identity development, when teenagers figure out who they are in relation to their family and their peers. At this developmental stage, people are particularly sensitive to being different in any way; and if they are different, they want it to be in ways that they’ve chosen. All of this is complicated, of course, by having a chronic disease that requires frequent visible action and identifiable devices to manage (insulin shots, continuous glucose monitors or CGM, insulin pumps, etc.).

Dr. Commissariat took on this topic as the lead author of a paper on identity and treatment adherence in teens and young adults with type 1 diabetes, which appeared in Pediatric Diabetes. She and her co-authors looked at the differences between those who “incorporated” their illness versus those who “contained” it or tried to keep it separate from the rest of their identity. “Those who incorporate their illness … take it into account in their daily life and are able to find ways to include the illness as part of their sense of self. Those who contain their illness may try to keep their illness hidden, worry about stigma, or try to … maintain a sense of self [that is] unburdened by illness, often ignoring daily self-management needs.”

What they found, Dr. Commissariat explained to me, was that people who tend to take a more “positive approach to making diabetes part of their sense of self – people who view it as ‘it’s my burden and I’m okay with it’ – tended to have lower A1C levels. They were a little more engaged in treatment.” In other words, those teenagers who managed to incorporate diabetes into their identity usually did better.

Because of this, Dr. Commissariat works with her patients to help them develop an identity that has “an appropriate degree of type 1 in it. I don’t think anyone needs to identify first and foremost as a person with diabetes. But the fact of the matter is that there are secondary issues that come up if we don’t take care of diabetes. So, you must identify with it to some extent. And I think what oftentimes becomes difficult for teenagers is finding that balance between being a ‘normal teenager’ and being a teenager with diabetes. Because on its face, they don’t really go hand-in-hand, but they should and they can.”

As I’ve witnessed firsthand with our daughter, adolescence can be a time when children want to move away from their identity as someone with type 1. When Rachel Rifkin was a teenager, she found herself transitioning from being relatively open about having type 1 to having it be something that she preferred to keep to herself. “I always did whatever I could to avoid people knowing about it. I always wore my pump in a back pocket. I never wanted to clip it onto the front of my pants or anything.”

In her practice, Dr. Addala has seen people go both ways. While she says that it’s more common for teenagers to “minimize the thing that makes them different, which is a very normal teenage developmental thing to do,” she’s also had patients who have embraced that difference. And in fact, in those individuals she sees a “further doubling down on the fact that diabetes is what makes them who they are; it’s a source of strength and pride and something that defines their character.”

But for those teenagers who aren’t willing to talk about or share that they have diabetes, both Dr. Commissariat and Dr. Addala try to understand the reasons behind the hesitancy. As Dr. Addala explains, “I try to see where the source of the apprehension comes from. Is it specifically that they don’t mind taking care of their diabetes or they don’t mind wearing technology, but they just don’t want other people to see?”

In these situations, Dr. Addala treads lightly and tries to respect the teenager’s feelings while gently encouraging them to open up. “I let them lead a bit when this topic comes up. They might say, well, I think I could probably tell my closest friend that I have diabetes. Or maybe they’re not willing to tell anyone, and I do my best to support them even in those cases. I’m trying to find out where their internalized stigma is originating from, and then see how far they’re willing to go in terms of who they share the information with. I generally use this approach because then they have some ownership.”

Dr. Commissariat points out that there’s an essential difference between being private about having diabetes and being secretive about it. As she tells her patients, “You don’t need to advertise it. But for safety purposes, it is important that at least a couple of your close friends know.”

She also talks about helping teenagers learn to communicate that they have type 1 in a way that feels manageable and builds confidence. She tells her patients: “I want to know exactly what you wish other people knew about diabetes. And then let’s find a way to teach people in a way that is not burdensome to you. Teenagers are trying so hard to not draw too much attention to themselves, so I often practice with them in our visits – how can we bring this up in a way that is not going to bite you in the back? That could mean having a serious discussion with your best friend, or that could mean something as easy as wearing short sleeves around people who don’t know you have diabetes, just so that they can see your CGM. Wait for people to comment on it. Use a passive disclosure strategy where you just pull out your pump and you take a bolus, and you don’t say anything unless somebody asks you.”

It’s especially helpful for teenagers to have a disclosure strategy when it comes to romantic or physical relationships. As Rifkin says, “With people you’re interested in, it’s a whole other web that you have to navigate in terms of what you tell people and when. And as I’m sure you can imagine, if you have a CGM or a pump, there are physical things on your body that may come up. It’s helpful to have a strategy for how you deal with that.”

Teenagers tend to be both self-centered and self-conscious, so when it comes to diabetes, it’s easy for them to assume that everyone is noticing it in a negative way. Rifkin remembers being in a movie theater one time when her pump started beeping. “I was so horrified. I was like, ‘Oh my God. Everyone must hate me right now. I’m ruining this experience for them.’ You don’t have a lot of perspective at that age. Diabetes seemed like such a big deal.”

Dr. Commissariat points out that all teenagers tend to think the focus is on themselves – even when it’s not. She tells her patients, “Your friends don’t care that you’ve had to go to the bathroom to take an injection. Your friends are like, ‘Okay, let’s go to the bathroom, then I can check how my hair looks.’” And she comments that those who do ask about it are probably asking because “they’re interested and they’re curious, and maybe those will be the people who will help you in the future.”

Another tip Dr. Commissariat gives her patients is to make sure that they talk about diabetes in the way they want others to see it. “If you don’t want it to be a big deal, don’t make it into a big deal because people are going to mirror you.”

For both Dr. Addala and Dr. Commissariat, part of the process is working with the parents on learning how to give their children the space to develop independence, as teenagers need to do. This can be a difficult transition, since diabetes requires so much oversight from both the parent and the child. As Dr. Commissariat says, “One of the major tasks of this developmental stage is to be independent and become less attached to your parents. But it’s really hard with diabetes to be less attached to your parents and be more like your friends when you’re managing something that takes so much responsibility.”

Dr. Addala focuses on helping parents try to see the situation from their child’s perspective. “So often part of the conversation is helping the family understand why a teenager might not want others to know they have diabetes. Where safety is concerned, it helps for the family to create boundaries around what is a true concern, and what’s just an added buffer in terms of safety.”

For both Rifkin and Dr. Commissariat, owning type 1 was a long process, one that continued into adulthood. Now, Rifkin says, “I’m a lot more open about it. I think it makes sense that those feelings that teenagers have of wanting to be private and not wanting to stick out at all fade over time, as people feel more confident in their own skin. These days I don’t feel like I have to explain it to anybody.”

Dr. Commissariat describes a long process of slowly pushing herself to make diabetes a more public part of her identity; she started by keeping her pump on display rather than keeping it in her pocket. Then she moved to bolusing and checking her blood sugar in front of people she knew and then also in front of people she didn’t know. Part of the change, for her, started when her nurse practitioner sat her down and said, “You’re not a diabetic, you’re a person with diabetes.” (Dr. Commissariat has since learned about research suggesting that this shift in labeling helps people become “more accepting of their identity with diabetes.”)

“When I look back on it now,” she says, “that statement suddenly clicks for me [in terms of] everything I went through. I thought diabetes was trying to define me, and that was my big mistake. I own it, it doesn’t hold me. When I allowed diabetes to be a part of my day and created my own definition of myself with diabetes as just a part of who I am and what I do, it wasn’t quite as burdensome anymore, but still annoying, no doubt.”

As for our daughter, after a year at her new school, my sense is that she’s still private about her diabetes, but she’s no longer secretive. A couple of her closest friends at her school now know, and that feels like a good start. At an event at the end of the year, after what felt like months where she hadn’t been willing to bolus in front of anyone, I finally saw her pull out her pump and give herself insulin right there in public – even if she was a bit off to the side. No one except me seemed to notice. I felt like she was beginning to establish that place for herself where she could feel like any other teenager. A teenager who just happens to have diabetes.

About Katie

Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.

Note: Given the personal nature of this article, Bacon asked for and received her daughter’s permission to publish it.

Source: diabetesdaily.com

3 Things Every T1D Parent Should Know (That Your Endo Hasn’t Told You)

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

By Lauren Bongiorno

As the parent of a child with type 1 diabetes (T1D), do you ever feel like there’s more to know about diabetes than you could ever learn? You may have an attentive and caring endocrinologist but still find that there are gaps in your education as a parent. It could be tangible tools, holistic resources, or more support that is missing, putting you in a constant reactive state chasing highs and running after lows.

It’s like you’ve been handed the keys to a car and given a few vague, verbal directions of how to get to your destination. That’s far from the ideal set up for a road trip! You need a map, a full tank of gas, and snacks for the ride. The same is true for a journey from childhood to adulthood with T1D.

Today we are breaking down the top three cornerstones of our family coaching programs that will help parents like you ease the future roadmap for your T1D child.

 1. Challenge Everything

If your GPS tells you to take the main road, but you think the back roads would be faster, what would you do? Make your own route! One way isn’t better than the other, but the best route is the one that feels natural, easy, and meets your needs.

It is okay, and encouraged, to question what you’ve been told and follow your instincts. An endocrinologist is one of several resources available to you, but not the only resource. By actively participating in conversations with your child’s endocrinologist about their diabetes, you can become the leader of your child’s diabetes management and model for them what it means to be self-reliant and self-advocating.

2. Your Family, Your Rules

While there are certain rules of the road we all have to follow, like staying within the speed limit and stopping at red lights, you get to set the expectations within your own car. As the driver, you get to determine how loud the music is played and the frequency of bathroom stops. Your family has the flexibility to create the road trip experience that works for you.

Checking blood sugar and giving insulin are two rules you can’t change, but other strategies are more fluid based on your child’s unique patterns and needs. Some kids’ blood sugars go low after sports practice. Others have a delayed high. Some need a snack before bed, while some don’t. It might take some time to understand what your child’s patterns are, but it’s key to recognize that not all bodies are the same and there is no one-size-fits-all diabetes management routine. So, discovering what works for your child, and your child alone, is the primary goal.

3. Holistic Approach

When you get in a car for a road trip, it’s about more than just getting from one place to another. The drive is a whole experience of its own! The music, snacks, and pit stops along the way are just as significant.

Similarly, holistic diabetes management is more than counting carbs and giving insulin. The other macronutrients, fat and protein, have an impact on blood sugars too, but this is less commonly understood. Beyond food, exercise, sleep, stress, hormones, relationship to food, and mental health are important elements of diabetes management, which is why over-simplifying diabetes just leads to more frustration and challenges. A holistic scope that takes in all of the factors is the key to a deeper understanding and more empowered relationship with your child’s T1D.

As a parent, you already know that kids are unpredictable and being adaptable is basically a parenting survival skill. While adaptability is always needed, it’s possible to get diabetes from interrupting your child and family’s life as much. For more support on an integrative approach to taking care of yourself, your child, and their T1D, click here to download this free video resource.

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

A Parent’s Concern: COVID-19 and the School Year

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

By Eugenia Araiza/Mariana Gomez

COVID-19 has brought many challenges and struggles to our daily lives. From the beginning we have adopted new habits in order to adapt to this new normal and this new dynamic and way of life certainly includes our environment and our children.

In the case of children with diabetes, the school environment alone already entails interesting challenges that, although they can be solved through teamwork and diabetes education, are scenarios that require some preparation to face.

The new normal includes concerns the caregivers have about going back to school and, although we look forward to that day, we also analyze the risks that it could represent in a population that a lot of the literature considers “vulnerable”.

In our groups and communities in Latin America, we have a similar opinion and we are pleased to see that the community has gotten to work and has quickly become familiarized with #BigLittleChanges that will help slow the spread of the virus. We know as a fact that social distancing, among other things, is one of the key pillars, but… what will happen when school begins?

We approached members of the type 1 Diabetes Community from Spanish-speaking families to ask their opinion. This is what we found.

About Going Back to School in August

“August seems too soon for in-person classes, it honestly scares me!” Esther shared with us, who thinks the same as Francisco who added “in my opinion, I do not think it can be possible because we are at a very critical point in the pandemic.”

In countries like Mexico, the rules will depend on the school system (public or private) and even on the state and region. In some schools there will be three options for returning to school: in-person, online or hybrid methodology that involves separating the groups to avoid having several children in a classroom alternating the days of in-person and online education.

Viridiana, Zuri’s mother said, “As Zuri’s mother, who lives with type 1 diabetes, I still do not feel it is safe for her to go back to school and I think that many moms are going through the same thing, the uncertainty of not knowing what will happen in the upcoming school year.”

The British Society of Pediatric Endocrinology and Diabetes States:

  1. Clinically extremely vulnerable children are to remain shielded and not to return to school, even if their year group has.
  2. Clinically vulnerable children who are only under the care of primary care are overwhelmingly likely to benefit from returning to school when their year group does.
  3. Clinically vulnerable children, who are under secondary or specialist care for an underlying health condition are, on the balance of probabilities, more likely to benefit from returning to school when their year group does so. These families may need a conversation with their medical teams to balance the potential risks and any anxiety among family members.
  4. All other children should attend school when their year group returns.

The New Normal and School

Among concerned parents, there has been talk about three options for returning to school: in-person, online or hybrid methodology that involves separating the groups to avoid having several children in a classroom alternating the days of in-person and online education.

Marcela told us “we still have not heard anything about when school will begin, personally I am stressed out about my son returning to school and whether they will take the necessary measures to avoid infections, hopefully, some students will attend some days and others online to be incorporated gradually like some people are saying.”

Others like Cloe have been preparing a little ahead of time and have talked with the principals and those in charge of the schools to let them know the family’s concerns regarding their child’s diabetes, the care and risks that it would involve, to which the teacher responded “This is a situation in which many of us agree because the most important thing is the health of our little ones. The authorities have mentioned that we will be able to make exceptions when school starts. Do not worry, when the time comes, we can explore options, you have my full support.”

In Mexico, the Aprende en Casa program used five means for teaching, among them, free textbooks in digital and printed format, which include the basis of all the expected learning and programs disseminated in several digital outlets, including free-to-air and cable television channels, radio and printed and digital materials.

The Parents’ Conditions

When asked about the requirements they have as parents to send their children to school, Yahaira said “I do not have any because at this moment I think that if it is in-person, my child will not go to school” while Mónica said “I would require them to supervise the students so they have no contact with each other, and they should be very clear about social distance”.

Apparently, all this causes great uncertainty because of a lack of assertive communication in many of our countries by the educational authorities and, as Adriana says “I would like to know all the measures that would be taken when school starts, but so far there is nothing clear enough so that parents and also children and teenagers with diabetes can sit, think, and make clear decisions so they can all feel safe and calm.”

Gaby, like many other participants, told us that she would prefer a hybrid system since “personally, I think my daughter would be affected if she stays at home any longer, she is at an age in which she tends to get depressed, and to stay up late talking to friends she has not seen in months. Now she has to start at a new school, it would be good for her not to spend so much time at home and go back to school with the appropriate care.”

The Opinion of Children and Teenagers Living With Diabetes on Going Back to School

Fer tells us that she wants to return and that “she would always have to have her face mask on, carry hand sanitizer, she would not hug her friends and keep her distance”. Ian cannot wait to go back, and it is very difficult for Mónica, his mother, not to send him. The same happens with Damián who wants to go back to school and see his friends. However, Matteo knows for sure that he does not want to return.

Zuri, who is 10 years old, tells us “I am very afraid of catching it and having complications with my diabetes.” 11-year-old Pablo says: “I will not go back until there is a vaccine.” Mali, who is 13 years old, is the one who shows the most concern on the subject and says just the thought of being surrounded by children and teachers scares her.

The Official Positions

Sadly, up to the date this article was published, we have not found any information from school authorities or medical societies for our countries in Latin America.

However, on May 20th the Official Position of the Association of Children’s Diabetes Clinicians (ADC) was published, emphasizing the lack of evidence to suggest that children with diabetes are more vulnerable to get the virus than other children, and parents of children with diabetes are called upon to reinforce safety measures such as hand washing and social distancing.

At the beginning of the statement, it says children with diabetes can return to the school environment as long as protective measures are taken. According to the documents, parents should consider whether the children will be able to keep their distance from their classmates, and if someone at home has a greater risk of contracting the virus. In addition, there are other factors that should be considered. Are parents capable of providing quality education from home? Will this distancing have any negative consequences on their development and emotional well-being?

Here are some safety protocols that will be implemented in different countries that you may be able to discuss with your educational authorities if you are a caregiver to a child with diabetes

  • Placement of students by age group: students will attend school in groups or age groups.
  • Students will not interact with other students outside of their age group.
  • A temperature check will be conducted each day before students enter the premises.
  • All staff will wear face shields.
  • Students will have many opportunities to wash their hands daily.
  • Handwashing stations will be created around the premises.
  • Students will not share supplies and materials.
  • Students will be seated at a safe distance from each other.
  • Teachers will be provided with safe cleaning supplies for students to use throughout the day.

Some Conclusions

Viridiana García, Zuri’s mother, perhaps represented what many of us thought and could not put into words “I think that, at the moment, there is nothing more important than the health of our children, and if we weigh the health of our children against their education, their health seems more important. We should remember that nothing is forever, and these moments of crisis will sooner or later pass and we will have time to recover in all aspects.”

While all this goes through the minds of the parents, a question arises, how long are we going to be able to keep the children out of the new normal?

(We would like to thank Viridiana García, Zuri’s mother, for sharing the protocols of her school with us)

About the Authors

Eugenia Araiza Eugenia has a Degree in Nutrition specialized in Diabetes and she is a Diabetes Educator. She was diagnosed with type 1 diabetes 25 years ago, she is the creator of Healthy Diabetes. She really enjoys studying and helping others in managing their different types of diabetes. She loves studying, managing type 1 diabetes, and nutrition. She especially enjoys writing about the impact diabetes has in her life. She lives surrounded by the love of her family, Luis Felipe, who lives with LADA type diabetes and her teenage son, Indigo.

Mariana Gómez Mariana is a Psychologist and Diabetes Educator. She was diagnosed with type 1 diabetes in the summer of 1985. In 2008, Mariana started a blog where she shares her life experience and topics related to living with diabetes and emotional health with others. Mariana worked with the Mexican Diabetes Federation until 2012 and today she is Director of Emerging Markets for Beyond Type 1. She is the mother of a teenager.

For more information on what you can do to protect yourself and others, visit coronavirusdiabetes.org and share the #BigLittleChanges you are making.

Source: diabetesdaily.com

Diabetic Ketoacidosis (DKA) at 30,000 Feet

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

By PK Hrezo

Twist of Fate?

It’s coincidental, if not oddly poetic, that type 1 diabetes presented itself to my family and me for the first time just two weeks before National Diabetes Awareness Month — a time we won’t soon forget.

Until that night, I thought type 1 diabetes (T1D) was something that kids were born with. I never thought it could be presented at any stage of life. I’d participated in JDRF walks before for friends and charity, so I knew the bare minimum. It had never been suggested to me by medical professionals that T1D was something all parents should keep an eye out for. Perhaps I hadn’t consulted the Parent Handbook regularly enough. But face-to-face with T1D for the first time, it was clear, I was on the brink of full-on parental guilt.

T1D did not run in our family, but that was the first question the ER doctor asked me while my thirteen-year-old daughter Abby was lying on the ER stretcher, nearly comatose, during a severe DKA episode in Halifax, Nova Scotia on October 19th, 2019.

DKA

Image source: Beyond Type 1

I was far from home, away from my husband, family and friends, and I was shell-shocked.

The Backstory

Abby and I had been planning a girl’s weekend to Paris for years, just the two of us, and it was to be the weekend of October 18th. Abby was beyond excited, which now, looking back, is probably what propelled her through the symptoms that we ignored as pre-DKA indicators. But we didn’t know. All we knew was that Abby had been under the weather for about a week – not herself, more tired than usual, and her ear had been bothering her just enough to prompt us to see the family doctor before getting on a plane.

We saw a nurse practitioner who checked Abby’s vitals and said her throat was red, but no ear fluid, and that she’d be okay for travel with some Mucinex. That night, Abby didn’t sleep at all. She woke up and stayed up for most of the night with indigestion. When she looked exhausted the next morning, we chalked it up to a bad night’s sleep.

Once we got to our connection at Chicago O’Hare, Abby seemed to be even more exhausted than before. Looking back, I realize the altitude from the plane ride from Tampa to Chicago had an adverse effect on her already gradual decline into DKA. She was uncomfortable in any position, and very thirsty for sweet, juicy-type drinks. She had an apple juice, a smoothie, a sweet tea with honey – all of these, unbeknownst to me, were contributing to the high sugars that would send her into DKA. I thought I was keeping her hydrated to flush out the virus, but sadly, all I was doing was shoveling more sugars into her bloodstream.

When Abby looked at me during our long layover and said she thought Paris would be a bad idea, I was both glad she’d owned up to it and puzzled by her sudden change. Of course, I wanted to do what was best for her. She mentioned one of our backup destinations — somewhere closer where we could still have our mother-daughter weekend but relax without the hustle and bustle of a busy city. We were already part of the way to another place, so we chose a pleasant B&B in Halifax, where it’d be autumn and beautiful. I made our arrangements and we headed to the next gate.

In Hindsight

If I could redo that day, I wouldn’t have put her on a plane to Canada, but that doesn’t mean I wouldn’t have made a different mistake. I might have booked a room in Chicago, so we could rest and she could sleep it off, which could have been fatal, since I still didn’t know she was in near-DKA.

I called my husband and told him how Abby was behaving, and that we’d changed plans. He was surprised, but agreed she likely just needed rest. That was also about the time doubt squirmed its way into my mind. People were beginning to stare at her. She was stumbling to the bathroom, and she just kept saying she was tired and needed to sleep. I was eager to get out of the airport and settle down somewhere so we could get back to normal. Little did I know, that normal had left us for good.

We pressed on and boarded the aircraft, and after about thirty minutes into the flight, my mommy senses went full-on haywire. What had I done? Something was wrong with Abby — I had no idea what, only that something wasn’t right, and it was too late for us to turn around. Tears welled in my eyes and I stared out the window wondering how I could’ve made such a big mistake.

Completely in the Dark

Abby could hardly hold her cup of ice she’d been munching on. She was dropping everything, and I was getting frustrated, because I’d never seen her that way, and I knew something was happening that she wasn’t telling me. “Talk to me,” I kept saying to her. “I don’t understand what’s going on.”

But Abby didn’t understand what was happening to her either. She complained that her lungs were hurting. Her lungs? I didn’t know if she was exaggerating or if she was having an allergy attack. How did all of those symptoms measure up to exhaustion and a virus? It didn’t make any sense.

Abby got up to use the bathroom again and was gone for quite a while — this is what I now know as T1D’s excessive peeing symptom. I was just about to go check on her, when she returned to our seat and laid over me. Her voice was barely audible when she complained again of her lungs hurting.

“Is there a doctor here?” she asked me in hardly a whisper.

“No,” I told her calmly. “But we’ll find one when we land.”

My nerves spiraled. I was, without a doubt, the worst mom ever. I decided that as soon as we landed, I’d call 911. We were halfway there. I held Abby as she laid over me in the row. And then she began to breathe heavily and rapidly.

I rubbed my hand up and down her arm. The stark difference between my hand temperature and hers was so alarming that I knew I couldn’t put it off any longer.

“Wait here,” I told her, and I beelined for the back of the plane where the two flight attendants stood in the galley.

“Can you see if there is a doctor onboard?” I asked. “I think there’s something wrong with my daughter.”

Team Work

Without hesitation, the flight attendants sprung into action and all the lights on the aircraft came on. While everything was moving in a blur for me, I returned to Abby and a passenger seated behind us, Nick Wasser, popped up as the announcement was made and identified himself as a nurse.

I explained Abby’s symptoms and everything up to that point, and a minute later, two more professionals appeared: Dr. Peter Laureijs and his wife, Beth, also a nurse. The flight attendants had oxygen and medical kits and they moved the passenger from the bulkhead row, so that Abby could be laid there on the floor. The doctor and nurses attended to her with great care, administering oxygen and checking her vitals.

I whispered a prayer and asked God for courage to get through whatever was to come, and that He might save my daughter. I remember very well, the moment when the woman in the adjacent row, Nick’s wife, Johanna, reached her hand over and lay it on mine, with tears in her eyes and said, “If you need anything, I’m right here.” The flight attendants checked on me throughout the remainder of the flight and made sure I was okay. They were in communication with the flight deck, and the pilots opted not to divert, but instead speed up the plane to get us to Halifax sooner, where IWK Health Centre would know how to care for whatever was wrong with Abby.

DKA

Image source: Beyond Type 1

They’d administered an IV by then, and that’s what saved Abby’s life, because unbeknownst to me she was dehydrating by the minute, as her bloodstream was filled with all that sugar that couldn’t be processed.

An ambulance waited on the tarmac when we landed. I could see their flashing lights out the window, and an announcement was made for no one to move until the EMTs had boarded and retrieved Abby. We started moving through the airport and Border Patrol gave me temporary paperwork and told me to call later after we knew what was going on. They wanted to make sure Abby wasn’t contagious, rightfully so, and that we weren’t bringing disease into Canada. At that point, we still had no idea what was happening.

On the ambulance, the EMT said her glucose level was 30 mmol/L (540 mg/DL). That didn’t mean anything to me. I said she’d had a lot of sweet drinks and nothing really to eat, so it was no surprise they were high. I was so naïve to the symptoms of T1D.

Learning the Ropes

The EMTs and ER staff that met us at IWK were all top-notch professionals with such warmth about them, that I never once felt alone, nor judged for my epic mom fail. While Abby was transferred to a bed and hooked up to all kinds of tubes, the ER doctor asked me a ton of questions, one of which was if diabetes was in the family.

“No,” I said informatively.

This is diabetes,” he said. “I can smell the ketones from here.”

“Ketones? What the heck are ketones?”

A word I’d later come to be acquainted with on a much deeper level. T1D had just blindsided me in a T-bone collision. Welcome to your new life. How had I not known? How had the doctor back home not identified it? Did this happen to other kids Abby’s age? Why did it wait so long to show up?

I stepped out and called my husband, and he, too, was in denial at first, insisting she’d probably just had a lot of sugar. Then I mentioned what the doctor said about smelling ketones, and it hit Nate like an anvil.

“Holy cow!” he said. “That’s what I smelled yesterday, remember? I said you need to brush your teeth because your breath smelled, and I thought it was you. I can’t believe I didn’t recognize it!”

Nate is a fire chief in Tarpon Springs and has thirteen years of experience in the EMT/first responder profession, and he has run across T1D patients a number of times.

Abby was admitted to PICU a few hours later where she was tended to by sweet, caring nurses for the next forty-eight hours, and where I would begin googling words and terms I’d never known before, in hopes of learning a lifetime worth of information within a couple of days.

Every time an ICU nurse would come in, I’d fire off questions, one of which being: “Does this type of thing happen very often?” One of the nurses said that in the last three months, they’d had eight cases of pediatric DKA where the parents had no idea that their child was T1D. After ICU, we moved to a room on the children’s ward, where we were introduced to managing T1D on our own. I was trained to use a glucometer and give insulin injections, and how to count carbs.

Making Sense of It All

I posted on Facebook when we finally returned home to Tampa. Sharing the signs of DKA with other parents seemed a priority, in hopes others could learn from my mistake. After my Facebook post went viral, I was contacted by so many other T1D parents and patients who have similar stories. So many of whom were turned away from doctors and ERs who also thought nothing was wrong.

I was an anxious ball of nerves when Abby and I finally received the okay to travel home to Tampa, because I’d be in charge of her insulin doses on my own for the first time. Since I learned dosages and glucose readings in Canadian measurements, I had to retrain my brain to switch over.

DKA

Image source: Beyond Type 1

The IWK nurses stayed in close contact with me throughout our journey home and advised me on what dosage to give after each blood reading. We had a doctor’s appointment the following morning with our new Tampa-based pediatric endocrinologist, and after one delayed flight to Newark, and another delayed flight to Tampa, we muddled through our insulin injections, and were able to get home and begin our new normal.

Together, our family is planning healthier food options with fewer carbs. We are making Abby’s lifestyle change our lifestyle change, we’re all watching our sugar intake. Once at home, I realized how fortunate we were to get help when we needed it, and I realized I didn’t know one of the nurse’s names from the flight. I also wanted to find out the flight crew of UA5596 so I could thank them. I made a Facebook post one morning asking others to help me find them, and I received an overwhelming response.

The post received almost 6K shares from people eager to pass on Abby’s story. The T1D community embraced me in a way I’ll forever be grateful for. Instead of feeling alone with this condition, I feel a part of something so much bigger than a crummy auto-immune disease, and I know a wealth of resources and support are waiting online should I need it.

While Abby and my weekend had not been the one of culture and mother-daughter bonding we’d hoped for, we found something else equally important. We learned that we are both stronger than we think, and that love and faith will get us through anything. We gained a new respect for life and its fragility, and humanity proved it’s still full of compassion. Since that fateful October night, Abby and I have been invited into a community of fellow T1Ds we never knew existed, and we’re reminded that there is strength in numbers, and that people truly are eager to help when given the chance. We are not alone.

Source: diabetesdaily.com

Letting Go of the Way Things Were

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

By Bonnie O’Neil

Familiar Territory

I was no stranger to type 1 diabetes when my son was diagnosed with the disease at age five. My sister has been living with type 1 diabetes (T1D) since she was sixteen years old, and my brother died as he was being diagnosed when he was just eight. I was born eighteen months after my brother’s death as the replacement for the child my parents had lost. I was born on the shadow side of grief, into a family desperately in need of hope.

When my son was diagnosed with T1D, I instinctively knew I had reached the end of an era and would forever mark time by Before Diagnosis and After Diagnosis. This disease was deeply personal to me and so I responded swiftly and deeply to its reappearance in the warp and weft of my family.

I was riddled with anger — at the disease, at God, at the universe. My fear — for my son’s safety and quality of life, and for the health of my other children — threatened to undo me. I discovered I had a deep need for control, yet control was more elusive now than ever before. I struggled with guilt, knowing T1D had passed to my son through me. I found myself experiencing deep jealousy, perhaps for the first time, over everyone whose life seemed easier, sweeter, less complicated than mine. Frequently, in that early season, my jealousy even turned to self-pity. I felt isolated and was constantly exhausted.

I learned about carb counting and sliding scales for dosing insulin. I learned about the effects of diet, exercise, and illness on blood sugars. I was prepared for how difficult T1D would be on my child, but nowhere in all the training was a forewarning about how hard it would be on me, his caregiver.

What we have been called to as parents of a child with T1D is hard and can leave us physically and emotionally drained. While it is my son who lives with type 1 diabetes, I discovered the disease also invaded me personally, and hasn’t left any single aspect of my life untouched or unaltered. Refusing to be ignored, it’s chiseled at the deepest parts of my being, forcing me to dig deeper for strength than I have ever needed to before.

T1D also seeped into every pore of my family, as I’m sure it has seeped into yours. It has brought additional challenges to my marriage. It has complicated my relationship with my son, as I struggle with being his mother and caregiver without being a hoverer. The weight of the disease has even affected my other children. Chronic illness is the great disrupter.

Releasing Control to Gain It

How can we hope to build emotionally healthy families in the midst of all the disruption that accompanies T1D? We must begin deep within ourselves as parents. We begin by recognizing our own pain and attending to it, rather than continuing to brush past it, hoping it will just go away.

Because it won’t.

If we don’t find healing for our unhealthy emotions, the muck will spill over and spiral out into the rest of our family. But, when we begin to tend to our own hearts, we create space for our wounds to heal, allowing the healing to spiral outward until gradually it touches every relationship within the family. Hope and healing begin with us.

The undoing of our captivity to fear and anger, mourning and brokenness, requires the relinquishing of our constant longing to live a different life. An easier life. A life where loving and care giving don’t hurt quite so much. To move beyond fear we must begin to accept what is. As long as we refuse to accept our new normal, fear will hold us in its grip. Acceptance allows us to face our fears, and once we face our fears, we can begin to deal with them. In accepting this disease, I acknowledge my son’s vulnerability and also my own.

But acceptance is hard, isn’t it? It requires us to do the difficult work of releasing control. Control is our need to influence and determine the outcomes of all situations affecting our life. Control is our attempt at ordering the world around us, and it’s our insistence that life conform to our view of how things should be. My son’s disease interrupted the carefully ordered world I had envisioned for my family. It shattered my expectations. It took away my control.

And when we lose control, it’s easy for anger to step in and take its place. We don’t like the unsettled feeling of being out of control. We prefer to walk on solid ground, yet this disease demands we embrace the shifting footing of uncertainty. I’ve learned though, that the only way forward is through the crucible of releasing control. To take hold of hope we have to release our lock-fisted grasp on the way we insist things should be. The way things once were.

A new hope can only be birthed out of our willingness to set aside our need for control, and to courageously begin to accept things as they now are.

This essay is a taste of the book Bonnie O’Neil is currently finishing writing for parents of a child with chronic illness. Through narrative and reflection, the book weaves a story of hope amidst the challenges of raising a child with T1D.

Source: diabetesdaily.com

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