My daughter turns 21 months old today. To most people, this isn’t necessarily a noteworthy month (at least not more than any other), but I have found myself a bit emotional as the day approaches as she is now as old as C was when he was diagnosed with diabetes.
A week ago this past Saturday, C & I both ran our first race together. He ran a 1 mile race and I ran a 5K. I know, I know, millions of people run this (and much much further distances) daily, and with great ease. However, for those who know me, this was a big feat for us…on many levels. I’ll get more into that in a minute.
Just a week and a half before said race, C’s soccer coach sent out a message to parents encouraging anyone interested to sign up. It had been a New Year’s resolution of mine to run a 5K this year. However, to be completely honest, at the time of the message I was doing absolutely nothing to work toward that goal. But my husband encouraged me, and said maybe this is the perfect opportunity to run your first one- C can do the 1 mile race and you can do the 5K. After much debate, I decided to go for it.
The night before, I questioned what in the world I had done. I am not a runner in any sense of the word. Heck, I had to run out and buy running shoes the week of the race, because I didn’t even own proper running shoes. On top of my own personal stress about running, I was concerned about C. What if he went low during the race? What should we feed him before to help stabilize blood sugar?
Even a year ago, had something like this come up, our immediate answer would have been “no”. It’s not worth the stress and worry of trying to navigate diabetes during a race that is just for fun. We’ll just sit this out and stay in our comfort zone, thank you very much.
Why do I tell you all this? Because by us completing our races together, something big clicked inside of me. There was a day so many things scared me about him growing up and wondering how we would navigate diabetes (school, sports, sleepovers, etc.), but all have proven to go far better than I could have ever imagined. And while diabetes does certainly add an extra layer of planning and stress to a lot of these activities, do know they are possible and that your type 1 kiddo can do absolutely anything and everything that non type 1 kiddos can do. Don’t let diabetes be a reason you say “no” to something. I say this, because I’ve been guilty of this before.
So I guess the moral of the story is this…those big scary things that intimidate you and you think you/your child could never do. Do them.
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For the last couple of months I have been working with Beyond Type 1 to create a 1-week meal plan for a newly diagnosed family. This is something I have been wanting to do for awhile. Every time I hear from a newly diagnosed family, I’ve wanted to have something to direct them toward that will help them get back on their feet and learn how to prepare meals for their type 1 kiddo.
This plan features some of our favorite family recipes, and when creating it, I tried to strike a balance of low carbohydrate options, while also keeping them super kid-friendly, as this will likely be a new way of eating for many kids.
This plan contains options for a homemade breakfast, lunch, snack and dinner, every day for a week. If this is an overwhelming amount of cooking for you, feel free to pick and chose from the recipes provided- you can totally cater it to your own family. The plan is merely meant as a sample week.
Here are 4 of our family favorite recipes that are included in the plan:
Low Carb Breakfast Burritos– Over the years these Breakfast Burritos have become a favorite at our house! They’re so easy to make and so delicious! I promise you won’t even miss the tortilla!
Unwrapped Sandwich Skewer– Sometimes you just need a break from an ordinary sandwich. This Unwrapped Sandwich Skewer does just that! Just load up a popsicle stick or skewer with your favorite sandwich fillings and you have a perfect lunch idea. If your kiddo doesn’t typically eat sandwiches, this may be just the ticket to getting them to like them!
Chickpea Cookie Dough Dip– Whenever I make this Chickpea Cookie Dough Dip, my kids are always left begging for more. I know that a chickpea based cookie dough dip may have you raising your eyebrows, but I’m here to tell you that this stuff is goooood and it totally tastes like cookie dough!
Broccoli Slaw Spaghetti– After looking for a low-carb alternative to spaghetti, this delicious Broccoli Slaw Spaghetti was born. You’ll be shocked at what a “noodle fix” broccoli slaw will give you!
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The holidays have now come and gone. You’ve likely had multiple family gatherings, and we’re officially in the thick of winter. I don’t know about your family, but this time of year tends to be a hot spot for our family to catch and spread illness. However, this year we’re prepared!
When illness strikes our house, 9-out-of-10 times it comes completely out of nowhere, in the wee hours of the night when we are awoken by crying kiddos. It’s seriously so bizarre. Most nights that our kids end up getting sick they were acting completely normal prior to bedtime, giving no signs that something was brewing.
So because illness tends to strike at random times at our house, I rarely have everything I need on hand to properly care for kiddos. I (or my husband) almost always have to go run out for “sick supplies,” which is the last thing I want to be doing when I have a kiddo who is feeling under the weather. So I finally wised up and created a “sick kit” of shelf stable items that can help me avoid the middle of the night store runs, when illness does decide to strike.
Because illness and diabetes go together about as good as oil and water, I thought I would share a sick kit that is specific to diabetes sick day management.
Here’s what’s inside:
- Water bottles- This is for obvious reasons- it’s important to stay hydrated when sick! You also want to push fluids to help get rid of those pesky ketones that seem to just love to join sick parties.
- 7-UP (regular & diet)– I like to have both on hand when C is sick because especially when he has a tummy bug, he tends to go low quite often, so it’s nice to have regular 7-UP for when we’re trying to bring his blood sugar up, and the Diet is nice if he’s high, but wanting something other than water to drink.
- Gatorade (regular & G2)- I like to have both on hand for the same reasons I do for regular 7-Up and Diet. Do note that G2 does have carbs in it, it’s just a lot less than regular Gatorade.
- Juice boxes- No, juice is not the best for a sick tummy, but I like to have juice boxes stashed just in case of emergencies and this seemed like a good place to have some.
Shelf-stable foods that are good on a sick tummy:
- Chicken noodle soup
- Saltine crackers
Diabetic sick day supplies:
- Frosting- I’ve never actually had to use this before, but I heard a tip long ago to always keep a tube of frosting on hand, and in the event of a severe low put some frosting on the inside of your kiddos cheek.
- Glucose tabs
- Glucagon kit
- Ketostix- You may want to include a disposable cup with this. For a couple of years C wasn’t comfortable “going” directly on the stick and found using a cup to collect with, and then test, was easier. You can also get a ketone meter that uses a blood drop, much like a blood sugar check. We used to use a ketone meter when C was still in diapers, but have since gone away from it because it was a bigger pain to keep up with the prescription and the expiring sticks than to just use Ketostix.
- Medicine- Pain relievers, cough syrups, cough drops, anti-diarrhea and anti-vomiting medicine, etc. It can be helpful to find sugar-free products when possible. Everything pictured above is sugar-free.
- Thermometer- It’s nice to also have extra thermometer batteries on hand just in case.
- Hand sanitizer
Other items I’m assuming you already have on hand:
- Dr.’s phone numbers
- Blood glucose monitoring supplies- Meter, strips, lancing device.
- Insulin pump supplies (or syringes if not on a pump)
As with just about everything else pertaining to diabetes, I’ve found that planning ahead and planning for the unexpected, helps everything run much smoother and takes off so much stress! Having a sick kit ready with supplies for when illness strikes gives me such peace of mind! Hopefully it will you too!
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It’s that time of year. Whether you are 1) the parent of a newly diagnosed school-aged child, 2) your child was diagnosed very early on in life but this is their first school experience, or 3) you’ve already sent your type 1 child to school before, but are heading into a new school year- back-to-school can be a very stressful time. But, it doesn’t have to be!
I believe there are 3 components to a creating a good relationship with the school and personnel that will be helping your child manage their diabetes while at school: preparation, education and communication. This post will help you lay the groundwork to achieve these 3 things.
There were of course so many things I thought about after we received C’s diagnosis just shy of his 2nd birthday, but even way back then, one of the biggest hurdles of all to me was the thought of sending him to school. I was a stay-at-home mom, so school was the first time I would be entrusting him in the care of someone else. There were so many times I asked myself how on earth I was going to be able to let someone else manage his diabetes. Even though in so many ways that seems like it was a lifetime ago, the fear and worry I had about sending him to school remains seared in my memory today. We were able to slowly ease into it, with preschool and other small functions he was involved in that forced us to loosen our grip (sports, camps, etc.), but quite honestly sending him off to Kindergarten remains high on my list of hardest things I’ve ever done.
Shipping your kiddo off for the first time is hard no matter what, and adding in a chronic health condition can be enough to send someone into a spiral. However, for you moms that are getting ready to send your type 1 kiddo to school for the first time, I am here to tell you that 3 full school years later, school has been nothing but a positive experience, and we have a great relationship with the school and everyone that cares for him. And the good news is that you can have this too! Here’s how:
Contact the School: If this is your first year sending them to school, you should start by contacting the school and letting them know your type 1 child will be starting there. Ideally, you would have made this call in the spring before they start school (Kindergarten roundup is a good time to have this conversation), just so that it can be taken into consideration when they’re figuring out class placement, etc. During that call you can get a feel for who will primarily be in charge of your child’s diabetes management. It seems that this widely varies from school to school. At my son’s school his teacher has really only been in charge of helping him remember when to go down to the office for his scheduled blood sugar checks, and to know what to look for if he seems to be acting “off.” While the teachers have for sure been a very important component to his care, all of his actual treatment happens in the nurse’s office. The nurse and the school secretaries (only if the nurse is not there) are the only ones that help him check his blood sugar, help him operate his pump (if necessary), or give him a snack or juice when he is low. I remember it worried me at first when I heard the teacher’s would have such little involvement, but the whole setup has really worked for us. And now that we’ve done this a few times, I realize teachers have enough to worry about with a classroom full of kids, probably many of whom also need special care of some sort. Putting them in charge of the bulk of diabetes management might prove to be way too much for one person. We have the added benefit that one of C’s secretaries has a type 1 child (grown) of her own. I imagine there are a lot of other people out there who will find that someone at the school has a diabetes connection that you can also lean on, as well. But if not, have no fear, because good communication will solve everything.
Contact Your Diabetes Care Team: At your next endocrinologist appointment ask your diabetes management team to help create a medical management plan. This is basically just doctor orders outlining diabetes management information specific to your child. You can get more detailed with in your 504 plan, but this is a good place to start. Bring this paper with you when you meet with the school.
Set up a Meeting: When C started Kindergarten we touched base with the school in the spring and they answered a lot of basic questions for us. Honestly, just making that first call started to ease a lot of my fears, and just helped me to get a nice picture of just how everything would work in a day. Don’t wait to make this call, as it can be very difficult to reach the individuals you need if it’s the middle of summer.
Now in subsequent years, I like to reach out about a week before school starts. Any sooner than this and teacher’s are still enjoying summer break themselves, and in our case, class placement information is still unknown. You also want the information to be fresh in their minds, so meeting as close to the start of the new year is ideal, IMO.
Create a 504 Plan: In addition to you medical management plan, you will likely want to create a 504 plan. In short, this is essentially a very detailed plan of how your child’s diabetes will be managed while at school. Having a 504 plan in place requires that your child have the same access to education as other children.
Here is a great link to sample 504 plans by age/insulin regimen (for kids using injections and pumps): childrenwithdiabetes.com. This post also has a lot of great things to consider adding to your 504 plan: d-mom.com.
Create a Supply Box: I recommend purchasing a medium sized plastic tote with a lid. On the outside of the box put a current photo of your child, your child’s name and two phone numbers where you can be reached the quickest. Your box should contain anything your child may need to manage diabetes for the day. This forum has a great list of things you may want to include in your supply box: forums.childrenwithdiabetes.com. Your boxes contents will vary depending on if your child does injections of if they are on an insulin pump, etc. This is what we have in C’s box:
- Juice boxes- we include two sizes of juice boxes and give parameters for when to give which one. The big ones are only used to treat severe lows.
- Glucose tabs- we like GlucoLift.
- Snacks – this year we have only included these bars for his snack. We built a snack into his morning because he has P.E., and recess in the morning and eats about an hour later than he has in previous years.
- Blood glucose meter
- Testing strips
- Glucagon Kit
Meet with School Staff: When we meet with the school we typically meet with the nurse and C’s new teacher for the year. Ask that anyone who will be caring for your child during a typical day be at this meeting. We have always brought C with us to these meetings. We feel it’s important to get him on the same page and voice any questions or concerns he has as we talk through everything.
Start by going over your 504 plan and this will cover most of what needs to be discussed, or will at least prompt discussion of most topics. Go over everything in your supply box and explain what each item is (especially if this is their first experience with diabetes). Demonstrate how to use their blood glucose meter, administer injections or operate the pump, and how to use the glucagon kit. Cheat sheets for how to operate the pump may be helpful when they’re starting out. Depending on the brand of pump you use, you may be able to find printables of the most common pump functions (correcting a high, or giving a food bolus) on their particular company’s website.
If this is the first time your child is going to school this meeting will be pretty long. If it’s not your first rodeo this meeting will basically just be meeting with your child’s new teacher and just re-hashing the plan from the previous year and catching everyone up to speed on any changes that have been made (if any) over the summer.
Make sure you leave the meeting feeling like you have addressed all of your thoughts/concerns. You will likely get home and realize there was something you forgot to mention (if you’re like me). Don’t hesitate to reach back out.
Talk with Your Child: After your meeting with staff, again go over the key points that your child will need to know and be in charge of during their day. I think sometimes this component can almost get missed. Even if your child is with you at the initial meeting, there is sometimes a lot of back and forth conversation regarding how you want certain situations handled, and it can become unclear to a child what is their responsibility vs. the school’s responsibility. Be sure your child is clear on what is expected of them.
And if you’re like me, you might have some conflicting feelings about just how much responsibility you want your child to have with diabetes management. There is a fine line between giving them independence and burdening them with too much when they’re also trying to figure out school for the first time. You know your child best so you can gauge what all you want to make them responsible for and what things you want to hold off on.
When C first started school the main thing we stressed was communication. We stressed how important it was to tell his teachers if he felt high or low and how it was going to be important to really pay attention to how he was feeling and if he started feeling low he needed to tell someone and go down to the office and check his blood sugar, even if he wasn’t sure he was low. We went through a period of time where he would get busy playing and I think he would start feeling low but would put off telling us because he didn’t want to stop playing. It seems like such a no-brainer to us adults, but I’d say it’s pretty common for kids to do this. Kind of like when kids put off going to the bathroom until they’re dancing around about ready to pee their pants. Maybe this is just my kids? Anyway…even though this is totally common sense stuff, when a kid is at school and learning about raising his hand to talk and not interrupting others, it can be hard to speak up immediately at times. Diabetes makes it OK to be “rude” sometimes :). Stress to your child that it’s an emergency if he/she feels low and it’s necessary to speak up no matter what.
Talk with Classmates: When C started Kindergarten we had his teacher read the book Taking Diabetes to School to the whole class. Coco Goes Back to School is another good one, especially for younger kids. That gave a watered down version of what diabetes is, and explained that C would have to always go to the nurses office before eating or drinking anything, etc. His teacher also had him show them his pump and stressed that it wasn’t a toy and that no one should ever touch it. This one likely is not be applicable for older kids, but in Kindergarten I remember it being a concern.
Again this is one where you have to know your own child. Some kids may just be embarrassed if you bring it to everyone’s attention. However, I feel like kid’s are naturally curious anytime they see C check his blood sugar, etc. So, if you can do one quick explanation of everything, you can hopefully answer everyone’s questions all at once. C has expressed frustration with people asking questions and them “not understanding his answers anyway,” so this has been pretty effective for us. Now that he’s in his fourth year of school most of the kids know he has diabetes, so he has fewer and fewer questions, but we still do this at the start of each year. This year the nurse came in, read a book, and let them ask questions and C answered them.
Make Adjustments if Needed: You will need to make some adjustments to your plan. Even if you get everything right the first time, your child will grow or something in the schedule will change, and something will need to be adjusted with your management plan. Don’t worry about this, just be ready for it.
Get a full week or two under your belt and see how everything is going. Are your scheduled blood sugar checks proving to be at the best times of day? Does there seem to be low or high patterns identified that could be avoidable? If so, talk it over with school personnel and make changes, if necessary. For instance, in our first year of school, once we had been through a couple of weeks and could see exactly how his blood sugar was trending, we had to adjust his snack time, along with the timing of some regularly scheduled checks. To give a specific example, C would tend to go low before P.E. so we added a check before and after P.E. on those days. Or we took away a check right before dismissal one year because it was proving to not add value since I would be picking him up only minutes later.
But what adjustments should you make, and how do you figure it out? After all, you aren’t seeing them for most of the day. The answer is two-fold. First, keep in contact with the school personnel (which I’ll discuss in detail shortly). Second, establish a system for getting the data you need.
For us this has always been easy, and seems to get easier each year. We have made sure the school always has a meter that links to C’s pump, so all of the blood sugar readings from school are stored in his pump automatically. We can download those numbers from his pump using the diabetes management software of your choice, and start looking for trends in those numbers. Once we started experimenting with a CGM, we could get even more information and download that to use for further analysis. Now, in what feels like a miraculous improvement since day 1, using the Dexcom with Share technology, we can actually see C’s numbers all day long on our iPhones, and we can download the data to our computer at any time as well (and Dexcom’s software makes analysis a breeze). So, we get a glimpse into his blood sugar in real-time and also can make decisions with all of the data possible with little effort.
Of course, I realize that there are infinite ways to handle diabetes management, and not everyone chooses or is able to use all of the latest technology. If you don’t have access to download numbers in any way, ensure that the school provides you with a paper log each day. They should already be producing this for internal use, so it should be no problem for them to provide a copy in your child’s backpack.
Stay in Touch: Once the school year is in full swing it’s important to stay in touch with the school. Check in and see how they feel things are going on their end. It’s also important to have good communication about any notable events that happen with your child during the school day. We already touched on how to get access to blood sugar numbers consistently, but you should also make sure to touch base regularly with the nurse to find out if they are seeing any trends outside of just numbers. Is your child needing juice more often than you realize solely based on blood sugar? Are the having to prevent highs by doing correction boluses that you aren’t noticing? As you already likely know, it is so important to know the whole picture of the day as that information helps you better manage them once they are home for the evening. Your child can help fill you in on the day as well, but sometimes their school days can become muddled (or at least it did for C), so having good communication with the school can help avoid any confusion.
Lastly, be sure to have a means of communication established for the nurse to give you notice that a particular supply is running low in your child’s diabetes supply box. A little foresight and an agreed upon communication mechanism can prevent a mad dash to the grocery store and back to the school at the last minute (speaking from experience).
While it’s never easy sending your Type 1 child back to school, or to school for the first time in Kindergarten, my hope for you is that together we can make it a little easier for everyone. I hope that you can learn from some of my mistakes (which is how I’ve built these steps over the years), and I hope to get lots of feedback from readers like you so that we can keep growing this list year-after-year.
Here are some other helpful resources to check out:
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A couple of weeks ago, I realized my Facebook page was quickly approaching 2,000 ‘likes’. Frankly, this blows me away.
Before starting this site, I only personally knew of a handful of type 1 families. Now I’m fortunate to be part of a giant community that is full of people who are impacted by type 1 diabetes. I can’t articulate how thankful I am to everyone who has supported the blog by visiting and sharing my site with others. You have all helped me tremendously on a personal level as well, by communication on posts and on social media about your experiences (good and bad), tips, tricks, and stories about how YOUR diabetes or YOUR loved one’s diabetes behaves.
There is no how-to manual with this disease, but having a place to come together to try to figure it out, one day at a time, has been a real blessing for me. Hopefully it has been for you as well.
To enter for a chance to win, please Log In or enter your email address below. One lucky winner will be randomly selected and will receive a FREE box of 10 KIND bars. I’m so appreciative to KIND Snacks for sponsoring this giveaway, and hope that you will all go out and try them if you haven’t already.
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I am so honored to have been asked to share 3 “Free” Holiday Treat Recipes on t1everydaymagic.com– a website created by Lilly Diabetes & Disney. Head over here to check out my guest post. Be sure to click on each recipe name and a new window will open up with nutritional information for each recipe. While you’re there you’ll find tons of other helpful posts and topics about day to day life with diabetes. Stay tuned for more guest posts in the future!
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Please excuse the dust, everyone. I know it’s been awhile since you’ve heard from me. I truly apologize that it’s been so long since I last posted and especially that there has been no explanation for my absence.
Each spring our schedules seem to fill up at lightning speed. Even though I have now learned that it’s coming and even try to take precautions to soften the blow, I still seem to find myself floundering through the days, just making sure the necessities are done for the family and making sure everyone gets where they need to be on any given day. It seems the time for “extras” becomes quite slim.
That’s half of my explanation…and the prettier/lukewarm version. The other half probably took about a full month and a half for me to even put my finger on myself. I knew what I was feeling inside, but wasn’t even able to articulate it to my husband when asked why I hadn’t been posting.
It was a slow progression to get to the point I got and that’s why I didn’t even necessarily feel it happening. I would say it all started with a routine checkup with the endocrinologist. We got a good report and only slight basal changes were suggested, but my husband and I just weren’t happy with C’s A1C. His Dr. wasn’t concerned as it was within the range for his age, but we just know we can and have done much better. We left that appointment feeling a bit deflated but vowed we were going to get it down by the next appointment. Next appointment comes…not only had his A1C not gone down, but it went up. Are there instances we could look back on and say, “Hey, maybe we could have handled that situation differently?” Absolutely. But even so, each and every day we make our best judgment calls into every decision we make for Carson. When those efforts don’t seem to be reflected in his A1C it feels incredibly defeating.
The other realization I had was that simply by creating this blog, I have interacted and been exposed to more things about diabetes than I ever had been previously. In SO many ways that has been one of the most wonderful things to come from this blog…hearing from so many of you who either are, know someone with, or have children of their own with type 1. The part I struggled with was suddenly having my news-feed full of everything diabetes. I don’t feel I live in oblivion with this disease, but I came across articles about complications, etc., one too many times when I was just not at all emotionally prepared to do so.
Without ever really making a real decision to do so, I kind of just found myself pulling back. I stopped posting and stopped patrolling my other social media sites on a daily basis. I just needed to take a step back. Unfortunately one week turned into two, and two into three, and somehow 2+ months have now passed.
The conclusion I came to…I had diabetes burnout. In short, or at least what my interpretation of what diabetes burnout is, is just being tired of the endless care and attention that diabetes requires. Especially when it seems you are doing your best and everything “right” and still just don’t have the control where you want it to be.
For just about everything in life, we are given breaks. Kids get regular breaks from school, we get to take vacation from work, heck we build two days into each week just to give everyone a break from the weekly grind. If I need a break from the daunting and sometimes exhausting days of stay-at-home mommy hood, I go run errands, maybe grab a coffee and leave the kiddos home with dad for a while, while I clear my head and regain perspective. Diabetes is just about the only thing in our lives that we simply cannot take a break from. Ever.
Diabetes doesn’t say, “Hey, I know you’ve had a really long day today, why don’t you just go ahead and not set any alarms tonight. I promise I’ll be good.” And more often than not you can bet that on your very worst weeks, that’s when a birthday party will be added to the mix, or a field trip at school, which requires adjusting the entire family’s schedule just so that you can go along and be the helicopter mom, that you are trying so desperately not to be.
I know diabetes burnout usually happens to type 1 diabetics themselves. To be honest, I feel guilty even admitting that I have diabetes burnout myself. I feel like I don’t deserve to feel sorry for myself. After all, it is C who feels every high and low. It is C who has to sit in his classroom while kids enjoy birthday goodies (on nearly a weekly basis) while he tucks his away in a plastic bowl and brings it home in his backpack, hoping he can enjoy at least some of it for dessert at dinner.
Even though I may not feel fully justified, I assure you diabetes burnout can happen to caregivers as well. Even though I didn’t have a name for it for years, I can tell you I have certainly felt it before. It comes in waves and while the lows are low, I usually pull myself out of the rut and come back out on the other side with more motivation than ever. That’s where I currently am.
With summer upon us, a break from school, and just having diabetes management be in my control for a few months, I am feeling hopeful it will be just what I need to get back in the saddle.
C has not yet displayed or voiced that he has ever felt diabetes burnout yet, but I imagine as he gets older and takes on more control of his management that he will feel this as well. I am thankful I have been able to shoulder some of it for him in these early years, and hope I can always be that person for him to lean on, and teach him ways to cope. Or at the very least we can figure it out together, as I am still, very much so, a work in progress.