Scott on Disney's Spoonful
I hear from mothers a lot about a perceived lack of engagement with diabetes from their husbands...
so when Disney asked me to write about being the father of a child with type I diabetes... I used the opportunity to explore that issue in a way that I thought you guys would appreciate and benefit from - sorry you have to click to another site for this article, but unlike the deals I've been able to make with my other freelance work, I can't repost this one on Arden's Day.
I do think that you'll find it a worthwhile read and the site doesn't have ads or try to sell you anything (though your brain will read the post in Donald Duck's voice). Spoonful is a Disney/Lilly Diabetes initiative and they do a great job of offering content that I think you may enjoy and find useful - I tried to add to that tradition with 'Dads and Diabetes'. I sincerely hope that you like the piece and that it sheds some light on why your spouse may not be as involved with your child's type I caregiving in the way that you want.
For transparency: I was compensated, with a standard fee, for the article.
Helping Children With Diabetes Gain Independence
Part 5: Taking It One Moment at a Time
The word independence literally means, “Freedom from outside control or support.” But when we use it to describe a child who lives with type 1 diabetes, the word takes on a much deeper meaning.
I wanted to say, “Children struggle,” but in all honesty, all people struggle to be themselves every day. We are influenced by so many outside pressures that I often wonder if any of us are really being who we are. On any given day I can feel too short, too fat, too old or just not smart enough. I worry that my affections won’t be reciprocated, that I am not being a good parent, husband and son. In the past, my concern about loved ones’ reactions have stopped me from telling them how I truly feel. Yet if you asked me to describe myself and the level of independence that I felt during that time in my life, I would have told you that I was not bothered by what other people thought of me, that I didn’t feel the pressure – but of course I did.
As I sit here and write to you, I realize that I felt all of those things when I was younger and I wasn’t wearing an insulin pump or a continuous glucose monitor. I didn’t have to stop and check my blood glucose all day, people never felt obliged to tell me what to eat and I never once thought that I may pass out from not paying attention to my moment-to-moment health. Young Scott was living a pretty easy life, and yet he still felt the proverbial weight of the world.
So how the heck are we going to teach our children with diabetes to feel independent? I think the answer to that question is, one moment at a time.
I could have written a series of blog posts about helping children with diabetes gain independence through any number of experiences. I believe that people, young and old, have potential and that all they need is patient loving people to surround them with quiet strength and support. Sure, sometimes it feels good to be told that someone has your back, but often it feels better to just know. Then when life happens, alone or together, we have the inner strength to shoulder what’s coming our way. In time, with maturity and practice, we begin to believe in ourselves the way that our loved ones believe in us.
So does technology help to build independence for children with type 1 diabetes? Absolutely it does! Does it do it overnight or over the course of a single year? No. Independence is a form of maturity and the process towards becoming a fully realized person is a long one. That kind of firm base is built one experience at a time and not every step taken is a step in the correct direction. Each blood glucose check in public will build confidence. Every low blood glucose conquered is a step in the right direction. There will be moments that don’t go as planned, but don’t think of them as failures, think of them as perspective for the successes. You can’t appreciate success without knowing failure, at least not to the degree that it requires to build maturity, and none of this can happen if we are being sheltered. I know as well as you do that having a child with type 1 diabetes is different and at times scary. That’s why I added technology to our daily routine; so I could give Arden the personal space that she needs to grow while protecting, as best as the situation allows, her health and safety.
This post is part of a six part series that I originally wrote for the Suite D Blog, which is operated by Insulet. Insulet is the company responsible for Arden's insulin pump, the Omnipod. Please know that I was compensated for my writing in an amount that would be considered standard for freelance blogging. My family pays for Arden's Omnipods with insurance and out of pocket cash. My writing for Insulet has no impact on my opinions or the information that I share here or anywhere online.
Diabetes Awareness on Huffington Post
Every November we celebrate Diabetes Awareness Month - is celebrate the right word? Anyway, there's nothing but blue circles as far as the eye can see, just as long as your eye can't see beyond the diabetes online community. After November ends you can be assured that there will be blog posts written that use phrases like, "We are just talking to ourselves" and even more that indicate that the choir is preaching to itself. We get sad that all of our effort didn't break the diabetes conversation wide open and we wonder why the NFL isn't wearing blue for diabetes?
Sound familiar?
I've been working behind the scenes to get real DOC based diabetes conversations/stories into mainstream media. It's a little too early to talk about a radio interview that looks like it will happen next month, but I can tell you today about one of my blog pieces that is running on Huffington Post Parents.
'I am not Diabetes' is featured on the Dads front page! Some love, shares and likes can push it to the front of HuffParents. My hope is that one day people will read about diabetes and understand it the way they do breast cancer and other more easily felt/understood diseases. My inclination is that when someone hears you have cancer, they immediately understand the situation that you are in. Diabetes, to the uninitiated is not so self-explanatory, but you know that.
Maybe they just need to feel a day with type I in the way that we do... I for one am happy to share what life is really like with diabetes, if it means bringing awareness to the next level. I'm not suggesting that I am the first person to do this, plenty of intrepid diabetes advocates are working tirelessly to get the word out. I'm just saying that maybe the world can handle hearing about diabetes in the way that we speak to each other about it. I'm not going to try and dress up Arden's story, or make it sound like it's been written by a NY Times reporter. I just want tell our real, raw stories until those football cleats turn blue.
The first step is to get this piece's popularity to a place where HuffPost will consider posting links on there Facebook page and then, hopefully, to the frontage of HuffParents. Please take a second, to like, share and comment so we can show the mainstream that the DOC has a voice that others would be interested in knowing more about.
'I Am Not Diabetes' on Huffington Post.
* I am not compensated monetarily for my writing on Huffington Post. They do provide a link to my book on my author page.
update
The post has been added to the front page of Huffington Post Parents and the main page of Huffington Post!
Helping Children with Diabetes Gain Independence
This is part four of my six part series on helping children with diabetes to gain independence. I wrote this series for the makers of OmniPod, they are running it on their blog called, Suite D. If you missed them you can read the first three parts on Arden's Day here or on Insulet's site.
Part five, 'Taking it one moment at a time', is live today only on Suite D.
Part 4: Diabetes Management Plan
I began part one of this series by talking about technology and how it aids my family every day while we manage our daughter Arden’s type 1 diabetes. In part two, I spoke about the health and educational issues that lead me to want to do things differently. In part three, I jumped to the end of the story by sharing proof of my changes in the form of a much lower A1C and the elimination of missed class time. Today, I’d like to talk about the nuts and bolts of Arden’s diabetes management plan. It’s super simple…yet amazingly effective!
I’ll begin in the early morning because starting the day with a manageable blood glucose number gives you a reasonable chance of getting the rest of the day to follow suit. I like to check Arden’s blood glucose about an hour before her alarm is set to go off so that I can knock a high blood glucose or try to adjust a lower number with a temp basal. We test when Arden rises and pre-bolus for breakfast. The timing of the breakfast bolus is planned so that no more than two hours goes by before our next blood glucose look-in at 9:30 AM.
In between the breakfast bolus and 9:30 AM, Arden will text me if her CGM indicates that her blood glucose has gone below our low limit, above our high limit or shows arrows that indicate a fast rise or fall in her blood glucose. Most days, however, I don’t hear from her until the 9:30 AM pre-snack look-in. Both of our phones are programmed with matching alarms to remind us of CGM checks, pre-bolus needs, blood glucose testing and activities, such as gym class. The alarms are a back-up, as there are times that we both need reminding.
Arden’s text will arrive as simply as this: 140 >.
Depending on the situation I may say something like, “15 carbs,” “test” or “juice.” Arden responds in a few moments with the suggested bolus, a blood glucose reading from a finger stick or a suggestion for a different source of carbs. Our conversations generally last less than two minutes.
The next alarm sounds 15 minutes before lunch and we always test. I like, when the situation allows, to have Arden pre-bolus lunch unless her blood glucose is borderline. When that happens I have her bolus some of the lunch carbs early and then we do the rest when she is seated in the cafeteria. Arden’s 504 plan allows her to leave for lunch five minutes early everyday so that she can settle in and communicate with me prior to the insanity that surrounds the children piling into the cafeteria. We normally speak to each other at this look-in because there is a lot more going on surrounding a meal than during a simple CGM check or test and bolus. Our 504 plan also allows for us to call each other whenever we need, at any time of the day.
Two hours later, we take a look at the CGM. Too much lunch insulin? Not enough? This is a great time to find out and the check gets us ready for the bus ride that’s coming in a couple of hours.
Handling Low Blood Glucose Readings at School
At this point you are wondering how we handle low blood glucose levels, am I correct?
We have a stash of juice boxes, pre counted snacks and water in Arden’s classroom. Additionally, Arden carries herOmniPod PDM, CGM, lancing device, test strips, fast-acting glucose and a juice with her in a small purse. The combination of well-timed look-ins and our reminder alarms stave off most unexpected lows, but they still happen. Last week Arden’s blood glucose was falling fast during gym class. I received the following text…
“61 arrow down”
I replied, “juice then test.”
This is the moment when you have to trust the system because you have to wait for a minute or two to allow time for drinking and re-testing. It can be nerve-wracking…I won’t lie.
Arden: “Juice in.”
Me: “Dizzy?”
Arden: “No, I want to go back to gym.”
Me: “Calling.”
We spoke on the phone and Arden told me that her CGM arrow was already turning back up, she did not feel dizzy and reiterated that she wanted to go back to the activity.
As much as moments like these can scare me, most of the fear that I’m feeling is really Arden gaining independence, and of course, me giving away control. But isn’t that what I want and is there really a better way for her to learn?
Please know that I was compensated for my writing in an amount that would be considered standard for freelance blogging. My family pays for Arden's OmniPods with insurance and out of pocket cash. My writing for Insulet has no impact on my opinions or the information that I share here or anywhere online.
Family Matters with Nancy Redd: HuffPostLive
I wish that I could hop into a time machine and go back to high school. I'd love to find the teachers (There were many) who told me that I talked too much. I could let them know that one day, HuffPostLive would call to ask if I could be a panelist on their inaugural edition of 'Family Matters'. I knew I was practicing for something ;)
