I Used to Wonder | from preschool to 8th grade

fullsizeoutput_14ec6Caleb was diagnosed with type 1 at the age of three. He’s currently thirteen. There have been many struggles over the years, and managing diabetes at school is among the biggest. It is inherently complex, and it requires intense attention as it is ever-evolving with new participants each and every year.

Our range of experiences has been extreme. We’ve had remarkably helpful, caring and interested people offering to do whatever it took to keep Caleb safe, and we’ve had to take legal action resulting in staff members being removed because they were not able or willing to keep Caleb out of danger.

Caleb is currently in eighth grade. Diabetes has become such a small part of his school day, I’m not sure we did much of anything to prepare for it this year. This is a monumental difference to the documents and instructions and meetings and supplies that I coordinated when he was in preschool and early elementary school. It’s also a significant change from where we were just a couple of years ago when he started middle school.

I remember looking for these types of stories when Caleb was little, and not finding them. I wanted to know what it would be like. I needed to know whether we would be living this way for the rest of our lives. Although I knew Caleb would mature and become more autonomous, I couldn’t picture what that would be.

Now I know.

It’s a young man. He’s capable and responsible. He carries a bag with him wherever he goes without reminder because it’s become so natural to do so. He’s focused on his schoolwork and his friends and is excited about his varied after school activities. Diabetes is still there, but it’s so much less of a monster than it once was.

As parents, we teach and prepare our children to care for themselves. Just like Caleb has learned to dress himself, make his own meals, do his schoolwork independently, and countless other things I take for granted, so too has he learned to manage his diabetes independently.

#Nightscout | The first two weeks #CGMinTheCloud #WeAreNotWaiting

I bought a Boost Mobile Moto G, a cable and a Grid it. With a good sale at Target, total cost was about $73. I spent a few hours following the Nightscout Project instructions, and we were up and running.

IMG_7040Initially, it’s like the first time you get CGM data. You can’t believe it’s right in front of your face and you keep looking at it (as if to confirm its reality) and soaking up the perpetual stream of easily accessed information. That novelty does wear off. We quickly got to an as-needed access basis.

With the rig packed in Caleb’s bag, I could watch his BG while at school using the school’s wifi. Then, Caleb had a Gymnastics lesson and with their free wifi, I could run my errands and keep mindful of his BG. It became clear that having access to this information when he’s at baseball practice and dance class (places without wifi) would certainly be beneficial. I added a data plan via Ting for about $9 a month and gained continuous access to Nightscout.

We aren’t really doing anything differently, but Nightscout has enhanced our ability to manage diabetes in some subtle, yet meaningful ways:

– Caleb’s middle school schedule is jam-packed. Clearcut breaks for daily BG checks don’t exist like they did in elementary school. He and I being connected during the day via Nightscout allows flexibility for him to check his blood sugar when it’s convenient for him. If I haven’t heard from him by 9:15 – when he changes periods – rather than strum my fingers in anticipation and wonder, I just take a peek at Nightscout and stop wondering. Caleb can focus a little more on school and a little less about when exactly he needs to check his bg.

IMG_7197– Caleb is active. Gymnastics, baseball, tap, jazz, ballet, swimming, trampoline – they all have different levels of intensity and each activity can vary in intensity from one day to the next. It’s often just a guess about how to compensate carbs or insulin to mitigate.. We don’t always (if ever) guess correctly, so there are adjustments along the way. By watching remotely, I can be prepared to help him. I know if I can take my time with my errands/chores/shuttle service. I know if I should come back prepared with a cupcake for the impending low that 45 minutes of intense tapping just caused, or whip out his PDM to nonchalantly infuse some insulin because they decided to sit and review the baseball rulebook rather than run bases at practice.

– When he checks in with me, I am more prepared and he doesn’t have to spend time giving me information. We are already on the same page and get right to business, so he’s spending less time away from whatever he’s doing.

Overall, there is an added peace. Caleb is less distracted because he knows someone else it watching. Rather than wondering if that light-headedness is because of playing flute for an hour or if his BG is dropping, he is more likely to just keep playing. He does not seem as preoccupied about what his blood sugar might be. Even though he has DexCom in his pocket with him to alert him, there’s something comforting about knowing the responsibility isn’t all on him. Knowing that there is a safety net lets us all relax our shoulders a bit and focus more on life and less on diabetes.

Pictured above : Nightscout on my phone’s home screen. I see Caleb’s numbers as easily as accessing any app. 

Related posts: Nightscout | Getting Started

More to come on Nightscout including: Impact on Self-Care Development, Nightscout at School, Bumps Along the Way, The New Rig, Pebble Watch.

In the Middle #backtoschool


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My kids went back to school on Monday. They are each starting a new school – one in high school, one in middle school and one moving up to her intermediate elementary school. New schools mean new schedules and lots of adjusting. We are on day number three and I’m happy to report, so far, so good. We’re all learning and adapting. 

Entering a middle school means having lots of teachers. Lots of teachers means lots of emergency supply bins. I’ve seen many people posting pictures of their school supplies and I did the same. Each of Caleb’s ten classroom will have an emergency set of carbs – juice, glucose School Suppliestabs and gels. Caleb carries a stash of carbs with him and rarely needs to go into the reserves, but you never know when a stubborn low day will come your way. 

We’re still trying to figure things out from what to leave in your locker to insulin to carb ratios. I will report back with our routine once we get it settled. In the meantime, if you are heading back to school soon and are looking for tools to prepare your child’s teachers, I recommended checking out the ADA’s Safe at School series of videos. We used the Hypoglycemia one specifically for an all-staff orientation. 

 

World Diabetes Day | School Blue-nity How To Guide

Original creation made by Caleb and Lorraine

For the past three years we have acknowledged World Diabetes Day at Caleb’s school. This was born from the need for awareness – Caleb’s first year in elementary school included some unfortunate bumps in the road. As his principal and I took steps to improve protocols, at her suggestion, we decided an annual World Diabetes Spirit Day would not only benefit Caleb emotionally and physically, but also serve to educate the community at large.

It has been an enormous success!

The first year we asked staff and students to wear blue and donate $1 to the JDRF.

His classmates showed support
His classmates showed support

The next year we asked staff and students to wear blue and I created an awareness video that was shown during each lunch wave. (Please feel free to download it and use it too!)


Last year, we asked staff and students to wear blue, we showed the awareness video, assembled all of Caleb’s grade in a blue circle and asked people to donate dollars and supplies to support Team Type 1’s initiative to assist the children of Rwanda living with diabetes.

We like to call this annual initiative School Blue-nity.

There are many ways you can coordinate something similar at your child’s school, your workplace or both.

Check out Sanofi’s blog, Discuss Diabetes, and how they’ve mapped out how you can “Make Blue Cool at School.

Mike Lawson from the Diabetes Hands Foundation gives you simple instructions on how you can incorporate the Big Blue Test as an event. Each person that participates translates to $5 donated to people living with diabetes in need. Do you have ten people in your office? That’s $50. 100 people? $500. 400 staff and students at your child’s school? That’s $2,000!!! So easy and such a worthy cause!


I created a flyer that can be used to promote the Blue Fridays initiative of “Think Blue, Wear Blue.” and The Big Blue Test in one. Copy and distribute – IT COULD NOT BE EASIER!!

If you’ve ever wanted to do something for diabetes awareness or to recognize World Diabetes Day but didn’t know where to start, please check out any or all of these resources!

It’s easy and it makes a difference.

Diabetes Parenting Week at Life of a Diabetic | Guest Post

Christ Stocker who writes The Life of a Diabetic, held a special guest blogger week featuring parents of children with diabetes. Included in the line-up are:

Bennet Dunlap of YDMV who speaks about the FDA

Wendy Rose of Candy Hearts Blog who shares a story about diabetes intuition

Scott Benner of Arden’s Day who discusses how kids need to be kids

and myself with how we handled the transition from summer days at home, to structured school days these past couple of weeks.

Hop on over to Chris’ part of the interweb and take a peek at what they all had to say.

Thanks, Chris for another opportunity to guest post. It’s always an honor.

Related Posts: The Power of Perspective

World Diabetes Day – Awareness

Original creation made by Caleb and Lorraine

Last year I created a video to show the students in Colin’s, Caleb’s and Lila’s schools in an effort to spread awareness and increase understanding of type 1 diabetes. We showed it during lunch, it looped over and over, and staff walked around and asked the children questions about what they saw to reinforce the key points.

Did all 800 plus kids walk away knowing everything there is to know about diabetes? No. But it was an easy, fun and non-instrusive way to get the word out and I believe more than several walked away with a better understanding. At a very minimum they learned that there were three students on their campus living with diabetes and doing everything all the other kids do. Selfishly, that’s my primary goal: to have others see Caleb as Caleb first and not as the kid who has this mysterious disease.

There was an unexpected benefit. I now have a video that can be used by anyone who wants to do the same thing. Several people have contacted me asking if they can use it in their own advocacy efforts. If you have the opportunity to increase awareness but aren’t sure what to do, check out the video and see if you can incorporate it into your plans.

Credit for use of video or image given to This is Caleb... is appreciated.

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