Rachel & Coco Go To Kindergarten

I was middle school dance nervous the night before visiting my son’s Kindergarten classroom. The plan was for me to read Go, Team Coco!, a book that helps educate young children about type 1 diabetes, to Henry’s class.

I wasn’t nervous about being in a room full of Kindergartners, but I was nervous that after reading a book about diabetes, that some kid would tell Henry what he could or couldn’t eat, would point at his medical devices, that later, in fourth grade, kids might make fun of him, not want to pick him for sports, not invite him to their houses or birthday parties, and hopefully much, much later, not want to date him, or marry him, or hire him, or…

On our walk to school, Henry was excited and asked if I could stay all day. His big sister wanted to know if I could read to her class about diabetes. Truthfully, I didn’t want to read about diabetes at all. I didn’t want to put any fuel on fears for the future, but I sat down at story time and told the class, “One day when Henry was three-years-old he got very sick, but then he got better. He wears a pump and CGM to help us keep him healthy,” and a strange movement caught my eye from the center of the rug, where the kids were seated.

I saw Henry reach into his pocket to get out his pump and show the class. His teacher suggested that he come and sit next to me. With a smile, he joined me in the front of the room. He showed them his pump, (and it’s a really cool pump, by the way, sometimes it turns into a pump laser or a really, really bad disco laser, so Henry says). I read some of the story, and Henry explained what it was like to feel low, when Coco was low. We finished the book and unprompted, the kids all chanted, “Go Team Coco” with me.

And then the hands shot up. I learned which kids have asthma, another kid described how his grandma checks her blood sugar, another kid’s sibling has type 1, another grandparent has diabetes, and another. For a strange moment, diabetes unified a room of Kindergartners, who talked so eagerly, wanting to be part of something by sharing their experience.

 

As Henry lives with diabetes, I know all his peers won’t accept him as easily as this room full of Kindergartners, but many will.

I tucked the book back in my bag for the short walk home, and it occurred to me that since diabetes takes so much from us there’s no need for me to build straw houses of fear that I’m afraid will burn at some future time. Sometimes, it’s me, and not diabetes that’s the gasoline. In this present moment, none of my fears mattered. My son was a few blocks away, in a room full of curious friends, wearing an awesome pump laser.

 

 

Back to School Night with Type 1 Diabetes

My son with type 1 diabetes starts Kindergarten day after tomorrow. He’s excited, and we’re excited. We anticipate a safe environment in which he’ll learn, grow, and be healthy. We’ve met and planned with the school, but just hours ago, on the walk home from back to school night, tiny cyclones of fear, worry, and jealously snaked inside me.

Back to school night with type 1 diabetes means a pile of glucose tabs, glucagon kits, test strips, extra insets, a ketone serum meter, airheads for the really low lows, spreadsheets of instructions, snacks with carbs, snacks without carbs, lancets, a back-up meter, and extra adhesive have been queued in your dinning room for a week.

Back to school night with type 1 diabetes means you walk your son to all the bathrooms closest to his classroom. You point out the water fountains along the way.

Back to school night with type 1 diabetes is taking four times as long to drop off materials as other families because you have so many more items. In fact, when you’re dropping off supplies and signing form after form in the nurse’s office, the courteous mother behind you tells the staff that she’ll be back tomorrow, meaning when they’re less busy. It’s realizing, in that moment, despite your two big bags of supplies, that you forgot the snacks with carbs, so you’ll be back tomorrow as well.

Back to school night with type 1 diabetes is walking the route between the nurse’s office and his classroom several times, just to make sure he doesn’t get lost. You realize it’s a trip he’ll make several times a day, and he’ll know it like the back of his hand in a week.

Back to school night with type 1 diabetes is rushing from work to the pharmacy so you can get the glucagon kits for school, and as you walk past the cashier to the pharmacy counter, you see a mother wave a purple glittery pencil box before she pays for it. You overhear her say to the cashier, “It’s back to school night tonight, and this is the last thing we need. We almost forgot about it.” A needle of jealousy pierces you, and you wish back to school night was just about pencil boxes and markers, a blithe almost forgetting of things. But then you remember to be kind, because everyone is fighting great invisible battles. Surely living with type 1 has taught you that.

Back to school night with type 1 diabetes means looking at all the other boys and girls that your son will most likely go to school with for the next thirteen years and hoping that they will be compassionate and understanding. But you’ve been a kid on a playground and in a lunchroom. You know kids aren’t empathetic and kind all the time.

Back to school night with type 1 diabetes is hoping your non-T1D kid doesn’t feel minimalized as she waits for you to finish something diabetes related for the fourth or fifth time that day. She’d like to see her classroom too, and asks if there’s still time to visit her teacher.

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Back to school night with diabetes is forcing yourself to breathe as you walk behind this guy who is, and will, shoulder so much. You tell yourself you’re just sending your kid off to Kindergarten, that lucky parents whose kids were born after the discovery of insulin 95 years ago, and kids whose T1D is caught in enough time, get to do that— send their kids off to Kindergarten.

A Time We Bossed Diabetes

We travel a lot over the summer, and while staying with family this summer our kids saw real live commercials for the first time. And they wanted Airheads, Fruit Loops, Num Noms, and Mr. Clean Magic Erasers.

Thanks to a talk, “Hypoglycemia Prevention and Treatment” given by Gary Scheiner at Friends for Life 2016 we learned about candies that have dextrose, which are a quick rescue for lows, and Airheads just happen to be on the list. We jumped at the chance to hand over candy without consequence instead of chalky glucose tabs to treat our son’s low blood sugars.

It’s true that people with type 1 diabetes can eat anything they want to, and we don’t make foods off limits in our house. Instead we practice a little bit of all things. However, bolusing for extemporaneous juice or candy is an exercise in certain failure. Often, the carb will peak before the insulin starts to act, and the sugar burns off while the insulin is still acting, so there’s a high high, then a low.

Due to summer activity, we’ve often had to dial back basal and bolus settings. We know certain activities like the beach, swimming, or playing outside when it’s hot are likely to drive Henry’s blood sugar low. In fact, for Henry, lows can come 12 hours after activity.

With a summer of beach trips ahead, I rigged up a pretty neat way to keep Henry’s insulin and pump in good working order, and my husband bought lots of Airheads. In fact, he bought every flavor of Airhead, and even doubled up on the White Mystery flavor.

When Matt showed Henry all the Airheads ready to treat his lows, Henry said, “Give me some insulin so I can go low and try one.”

Sure enough, our second day at the beach caused a low of 62, which he felt, and uncharacteristically needed a little time from which to recover.

 

With each low, he bounced back, declaring what flavor of Airhead he’d try next. So far,  we’ve visited Edisto Beach, SC, and St. Augustine Beach, FL, and tried an orange, cherry, and blue raspberry Airhead. Lots of summer and sugar stretches joyously ahead.

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Orange Airhead, Cool Hat, St. Augustine Beach, July 2016

Insulin Pump Meets Atlantic Ocean

Diabetes is often considered an invisible illness. For the first months after our son’s diagnosis, a stranger could look at our kid and not know he was living with a lifelong chronic disease. He was on multiple daily injections (MDI) and didn’t yet wear a continuous glucose monitor (CGM), so no medical devices identified as someone with a disease or disability. However, three months after his diagnosis, he started wearing an Animas insulin pump and Dexcom CGM.

In fact, unless someone knew what to look for (tubing coming from a pump, adhesive peaking below a shirtsleeve), Henry’s diabetes would be invisible to most. But when Henry swims, his diabetes becomes visible.

There are all sorts of pumps and a few CGM’s on the market, all with varying degrees of water resistance. I think the choice of insulin therapy and delivery is personal and specific to each person with diabetes. For us, the Animas pump was a good choice. It’s waterproof, and we devised a way for Henry to wear it while at the beach, so we don’t have to disconnect and manually deliver the basal a couple of times an hour. Henry’s free to play in the hot sun without us worrying about his insulin overheating or losing a pump site. However, to ensure that the site and pump are in good working order (even in salt water) we devised a pretty creative work around. It’s a bit like nesting dolls, but to us it was worth preserving the site and not interrupting Henry’s time at the beach.

  1. Henry wears a contact detach infusion set, and we cover it with a layer of Tegaderm HP, so the site itself is protected from sand, salt, and water.
  2.  The next step was to secure the pump. We placed it in a ziploc bag, with the tubing coming out at the very edge. Then we secured the opening with gaff tape.
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Opening secured with gaff tape (upper middle)

 

 

 

 

 

 

 

 

3. Next, we placed the pump in its ziploc bag in a FRIO insulin pump wallet, so that the insulin didn’t denature in the heat, and then placed the FRIO pump wallet in a SPIbelt. (I told you it’s like nesting dolls!)

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rocking the SPIbelt

4. Hang the d-bag from the sun shelter and enjoy a preserved site and pump.

This Guy & His Sign

Hell hath no fury like a sleep-deprived, insurance battling, carb-guesstimating parent of a T1D kid. So when this guy posts this sign in his aptly named restaurant, Mike’s Pig Pen, parents get even and educate.

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After the Facebook page for Mike’s Pig Pen was taken down, another popped up.

Local news outlets were contacted about covering the story.

Lots of one star reviews on Yelp! appeared.

The phone number for Mike’s Pig Pen appeared online, with the suggestion that the “squeal like a pig” scene from Deliverance be played when someone answered.

Mike’s expired domain name, http://www.mikespigpen.com, was purchased and now it reroutes to the American Diabetes Association.

The DOC (Diabetes Online Community) reacted and responded.

Locals defended him. People within the Type 1 community suggested that the outrage was too extreme.

Mike apologized.

Dust-ups like this happen when diabetes (type 1 and type 2) enters the picture. Only the players change: it can involve Cross-Fit, American Girl Dolls, and the list will continue.

I’m not sure that someone who openly practices discrimination (and thinks that diabetes is spread through blood contact) ever gets educated, whether it’s Mike, the customer who complained, the local newspaper editor who says that attacking Mike over the sign “is equivalent to bombing Main Street,” or the 100’s of people on social media who express outrage over having their meal ruined because they have to see a needle.

What I do know is that the sign, and all those who agree with its sentiments, that think people with a disability should be removed from public view, are a reminder that the fight is real. There’s a reason for advocacy and education.

 

Teacher, Caregiver, Nurse, Friend, and Advocate

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who will share their experiences of learning about Type 1 and managing it in a preschool classroom. “Teacher, Caregiver, Nurse, Friend, and Advocate” is by Alexis Johansen.


Diabetes. A word you rarely hear when going through college as an education major. You discuss behavior and disability interventions, teaching strategies, classroom management, and anything else that will prepare you to become a successful classroom teacher.

However, I heard “diabetes” entering my second year of teaching. My co-teacher and I were told we were going to have a child who was recently diagnosed with Type 1 Diabetes in our classroom. I cannot speak for my co-teacher, but my stomach felt very uneasy. I was worried to take on such a huge role with something I knew very little about. Many thoughts ran through my head. How do I care for a child with diabetes? Will I know what I am doing? How are we supposed to keep him safe? And most of all, how do I give him 100% of my care when I have 19 other 4 and 5 year-olds who need the same?

Unlike many public primary and secondary schools, preschools are not usually staffed with nurses, so my co-teacher and I were going to take on the nurse roll. We were in charge of keeping our little friend safe, and really when it comes down to it, alive. His parents put their trust in us to care for their child, while they themselves were still learning about caring for Type 1 Diabetes.

Not only did we have to take on this “nurse” and care giver roll, but we also had to learn to balance diabetes and the rest of the class including Henry. We were still the teachers, we were still Henry’s teachers.

Fast forward two years later, as I near the end of my time with my sweet little Henry, and all the care is now routine. But that wasn’t always the case. I think back to the first couple weeks of school, when we were learning and reading about Type 1 Diabetes. For instance, a typical day for all involved includes the following (keep in mind there is no such thing as a typical day in the diabetes world🙂

  • Between 5-10 finger pricks a day
  • Delivering insulin every day and multiple times a day
  • Counting carbs for lunch, snack, or a special cooking activity
  • Doing a pre-bolus (insuin given before a meal) for lunch along with a combo bolus (insulin given over a duration for high carb and fat foods like pizza)
  • Giving rescue carbs (glucose tabs or juice box for a low at any given point)
  • Correcting a high with an EZBG (more insulin) multiple times during the day
  • Communication with parents via group text, emails, phone calls when needed
  • Countless checks on his monitor, our personal cell phones, or his iPod

I’d say after two years, we have this balancing act figured out pretty well. There are still times where I find myself explaining to another 5 year old what a glucose tab tastes like (a gigantic smartie) or why Henry gets to have a juice box or cheese stick at random times during the day. This is all part of the balancing act. As a class we all come together to accept diabetes as part of OUR norm. This is just part of our day. The kids see us do blood checks, give rescue carbs, and give more attention to Henry at some parts of the day. But do you know what? They don’t think twice about it. They may ask a question or two, but curiosity is what makes our children learn and grow.

As I sit here typing this post, constantly checking my phone to see what his numbers are during rest time, ready to text my staff at any point, it makes realize that I have come to many conclusions and have my own thoughts about diabetes.

First of all, I love FREE FOODS (a no carb food)! The best food there is when you don’t have count carbs, knowing Henry loves them as well. To this day, my heart will always skip a little beat when I see double arrows down on his CGM (continuos glucose monitor). Pizza day is a bittersweet because I know there will always be a high and then there will most likely be a low. Exit signs, pointing with their arrows, will always remind me of Henry and his CGM (a devise used to read his blood glucose with arrows showing which direction his blood sugar is headed). Lastly, I thought Type 1 Diabetes was going to diminish my ability to teach the class, but really it made me the best teacher, caregiver, nurse, friend, and advocate that I could possibly be.

I will not look back and remember the scary lows or the difficult math (not my strong point) when it comes to figuring out carbs in a given meal or treat. I will not look back on the extra time it took to try and fully understand Type 1 Diabetes. I WILL look back and remember that little boy who took every finger prick like a champ, who made lows not so scary, who gave me the giggles when I was stressed out, who was so excited to see his blood glucose numbers (when sometimes I was dreading it), who, in all reality, gave me a whole new outlook on life. No, I will not remember Henry as the child we had with Type 1 Diabetes. I will simply just remember him as my sweet little Henry. A strong little boy who didn’t let diabetes define who he is.

exit signAlexis Johansen teaches in the 4 and 5 year old room at the University of Northern Iowa Child Development Center with her Bachelors in Early Childhood Education. She recently just finished up her third year teaching. Alexis lives in Cedar Falls, Iowa with her newly married husband and her adorable dog that loves to cuddle! When she isn’t at school with her kiddos, she enjoys reading, running, and being crafty at home.

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Lexie and Henry 

When Type 1 Knocks on Preschool’s Door

Parents of young kids with T1D know that sweaty palm, nervous gut feeling of leaving their child with someone new, especially someone new to diabetes. Handing over the diabetes equipment means handing over trust of your child’s consciousness, and over time, his or her long term health. It’s never easy to do this, but for two years, we worked with two amazing preschool teachers who share their experiences of learning about Type 1 and managing it in a preschool classroom. “When Type 1 Knocks on Preschool’s Door” is by Jessie Blohm.


It has been two years since diabetes knocked on the classroom door. Two years ago we were, admittedly, afraid and unknowledgeable. Two years ago, I could have told you the difference between Type 1 and Type 2 only by way of saying that Type 2 was the kind that elderly people can develop and a result of the obesity epidemic. Other than that, I had no idea what the difference was or how much we would learn in two short years.

Insulin, units, blood glucose (BG), meter, lancet, pump, bolus, combo bolus, pre-bolus, etc…the language alone was enough to make my head spin. How were we going to learn all of this in one week, so that we could keep Henry safe at school? It didn’t matter how, it just mattered that we would. A couple evenings of reading The First Book for Understanding Diabetes and a crash course in testing with the meter and we were on our way. Well, not quite that easily, but it did happen that quickly.

I believe that there were 4 key factors that made Henry’s time in our classroom so successful and relatively stress free for his parents.

#1. Caring and attentive parents

Henry’s parents were willing to meet with teachers before the start of school with step by step handouts, powerpoint, scales, cheat sheets— anything and everything they could think of to inform two lead teachers and a handful of college students on how to best care for their son. Rachel and Matt were able to answer questions when we had them, walk us through as new situations like priming the pump or delivering a combo bolus arose. They stressed the importance of realizing that there was no “normal” situation when “managing” diabetes and that so many factors play in to Henry’s numbers on any given day. They gave us a list of our typical snack foods as well as the portion sizes and carb counts, taught us how to weigh foods for lunch, and count carbs in each serving size. We used those cheat sheets religiously and by the end, we were able to take a cooking activity for the classroom, modify the ingredients slightly, and figure out how many carbs were in it so that we could give Henry the correct amount of insulin and most importantly, that he was able to participate in the same activity that the rest of the children were.

#2. Lots of checking…and double checking, and sometimes even triple checking

Before going outside for large motor, “Henry, let’s check you.” While at group, “Anna, will you check the CGM?” While getting ready for lunchtime, “Lexie, will you text Rachel and Matt to check if that amount of insulin sounds correct, it seems high.” Preparing for a center time cooking activity, “Double check my math on this portion size for the cooking activity, do you get the same numbers that I do?” The CGM needs calibrated, “Two different checks (pokes) this time, Henry.” In the beginning, this was a complete tag team effort between us as co-teachers, standing shoulder to shoulder at the counter as we figured the carbs for his lunch/snack/activity. After two years, it was like a well choreographed dance, we were able to have a quick conversation about his numbers that day, make a guess on how lunch/snack/activity would effect his blood glucose, and move between the different roles as lead teacher/lead caregiver with ease….but it took a lot of “checks” to get us there.

#3. Trust

It had to have taken an amazing amount of trust on Henry’s parents behalf to hand over his backpack each day and trust that we were going to stay on top of his numbers, catching any highs or lows from a new breakfast food, our lunch menu, and his activity level. Trust in our student staff and their training when we were out of the room or in a meeting. Trust in the CGM in order to avoid an unnecessary finger poke. Trust in the Dexcom app and knowing that there were 4 sets of eyes randomly checking his numbers throughout the day and sending a precautionary text to whomever was with Henry (teacher/staff), just in case they hadn’t caught it.

#4. Acceptance

In our classroom, we call everyone “friends” and we work hard to promote acceptance, resilience, and kindness. After diabetes knocked on the classroom door, we had a new topic to cover. Sugar. Much like we begin every school year creating that classroom community, we hit all of our usual likes/dislikes, how we all are the same and how we are different, etc. It was decided that we all liked sweet treats and we all understood that too many sweet treats would give us a tummy ache. However, for Henry, his body needed help with the sugar and he had to wear the pump so that it would keep giving him medicine in order to be safe. The children were so accepting of this! They would occasionally take an interest in watching us check Henry’s BG, ask an occasional question, or tell us they heard a beep from the pump, but more often than not, they didn’t even notice anything different! Henry was resilient, could go wash his hands, check his BG quickly, and return to his play with little interference, it was just accepted as part of the classroom routine and community. In all honesty, acceptance, resilience, and kindness are probably the best qualities in young children, and the rest of the class made it easy. I only hope and pray that the rest of Henry’s years of school are equally as accepting and kind to him.

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Jessie and Henry

Jessie Blohm is a teacher and a mother, holding her Masters Degree in Early Childhood Education from the University of Northern Iowa, while earning her Mother of 3 degree at home in her partially remodeled farmhouse in Reinbeck, IA. She lets her kids run barefoot and would rather pick weeds in the garden and drive kids to soccer practice than cook any day.

A New Haircut

I was that mom who waited way too long to cut her son’s curly locks. In fact, this photo, taken when Henry was 18 months old, was what shamed me into getting his fist haircut.

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Henry, in need of his first haircut, two years and two days before his T1D diagnosis.

You see it right? That not-so-cute blonde Bozo the Clown hairstyle.

So we got his hair cut. No big drama. He ate a sucker while the stylist cut his hair. She put a few curls in an envelope for me to keep. About every eight weeks we’d repeat the same steps: sucker, haircut, not much drama. Then Henry was diagnosed with type 1 diabetes.

Immediately after his T1D diagnosis it dawned on me that some things, like eating in a restaurant, are possible, but more difficult. But other times, suddenly, we’d be in a situation where I didn’t think T1D would be an issue (like getting a haircut), and it was.

At Henry’s first haircut after diagnosis, he wanted a sucker before climbing in the chair. I scrambled for a piece of sugar-free gum to give Henry while gesturing to the stylist not to give Henry a sucker. But Henry was insistent, he wanted a sucker. I said not now, maybe later. The stylist told me that the sucker was just “a little one” and he could “pick his flavor.” I told her Henry has type 1 diabetes and he probably shouldn’t have a sucker right now, but we’d take it for later.

The short of it is that Henry left with two balloons, several stickers, and a rapidly rising blood sugar well over 200. I left with a lot of guilt. This would be the first of many times I’d have to refuse or accept a sweet treat offered at the bank or post office. There’s no easy way to casually disclose to a well-meaning stranger that your child has a chronic condition, so the sugar treat is not a good idea in the moment. And then there’s the kid, the one with the chronic condition, listening to everything that’s said.

Now, I run those errands before I pick Henry up at preschool so I don’t have to explain anything to anyone.

These days, I let Henry’s hair get a little longer than it should (but not Bozo style) before we get it cut. Last week, I took Henry for a haircut. After the haircut, the stylist asked Henry if he’d like a sucker. I didn’t say anything. He picked out a mystery flavor for himself, and then asked if he could pick one for his sister.

As we were walking out, he handed me both suckers and said, “Give this blue one to Ava, and save mine for me when I’m low.”

Crossing a parking lot with my five-year-old, who’d just given up his treat for a future medical emergency, I felt pride and a familiar sadness. All the sudden, I realized not only will T1D always be with him, but it is shaping who he is.