My daughter announces: The BEST TOOL to help a teen with Diabetes (The one where she makes all the sense)

February 25, 2014By 9 Comments

 

 

Why I ride. So this gal can just be goofy and not think about diabetes!

Compassion — or a cute cat. Either works well!

I was driving along in the car with my daughter with diabetes when I remembered a question some parents of teens with diabetes had asked me to ask her.

What the best tool a parent can use to help their teen with diabetes?

 They’d wondered if it was a CGM. Or a communication system that would send parents blood glucose results. Or texting. I wondered too.

Lauren thought about it for a while, and then said this:

“The best tool? It’s compassion, Mom. Compassion. There is nothing you – or anyone else – can say to us or threaten us with or make us feel scared about that we’ve not already told ourselves. We know the deal. And we know we should be doing better. Compassion is what we need – that’s the best tool a parent can use.”

Well: wow. I thought about it for a while and realized she had a point.

I can remember in her rough years getting pretty frustrated. (Okay. I can remember wanting to pull all my hair out, run up and down the street screaming on the top of my lungs  “I’m mad as hell and I don’t want to take it anymore!” and wanting to just shake some sense into her. But we’ll go with “frustrated” to save on space).

It’s frightening for an educated, caring parent to see their child’s blood sugars hover just above “this is an issue.” And the “solution,” on the face of it, just seems so simple.

Check your blood sugar. Take some insulin. Done.

 But life with diabetes – particularly for a teen (but really, for all!) – just isn’t that simple. There’s the monotony of it all. Check, dose, count, dose, check, dose, count, dose again, dose again, check again, check again, dose and again. Rinse and repeat. And repeat. It must be grating; the endlessness of it all; the way you never, ever, ever get to “There. It’s all set.” And when you take into account they could very well do everything “right” and still have a very “wrong” day …. You have to get it. (and that’s just the technical part. What about the emotional toil?) It has to be so beyond daunting.

I would imagine it is much like I described life as the mom of a toddler, back when I was a parenting magazine writer. “It’s like every day you get up and there is this giant pile of blocks for you to stack. One by one, so carefully, you stack them; each block one at a time. You cannot really look away from it for too long – if you do, something (or someone) might sidle up against it and eek it over. By the end of the day, you are just about ready to place that final block on the top. And then, it crashes to the ground, ready for you to wake up and begin stacking again. And again.”

I bet it’s like that.

And then there’s the fear many have. Commercials and old studies and people they might see in the waiting room of the clinic with complications. It’s been drilled into them, and it’s not necessarily true. But it’s not totally out of the realm of maybe …. Is it? That must be hard to carry around in your subconscious. Teens don’t care about their future for the most part. But teens with diabetes are choked with scary (and again, mostly untrue) negative information about their future.

So yeah, I can see where a little compassion would go a long way. And yet, this is often the last suggestion I hear folks give parents of teens. On boards recently, I’ve seen parents suggest showing teens photos of complications (really? No. I mean: REALLY?), punishing them, taking away things and events they love, grounding them and more. They want to shock their teen into compliance. They hope to “deny” their teen into facing their diabetes more directly. Take away the prom and then she’ll check. So they think.

To that, my daughter would say, “pull out your compassion instead.”

Compassion does not mean you’re looking the other way. Compassion does not mean you don’t have concerns. Compassion does not mean you don’t see that your child needs some extra help to deal. It simply means that before ANY of that, above any item on any list for your child’s needs you just plain care about and love your child. And you feel for them. And you know they are good souls. Compassion.

It makes sense. I remember when I worked as an editor of 23 newspapers. Once a week (or sometimes more often), I used to go down from my pretty office and eat lunch in the semi-grungy pressroom with the composition and press folks. I had a boss who felt that was a bad move; giving them the chance to see me as “one of them” might make me seem weaker. But for me, it made sense. I wanted those folks who had to do the most monotonous, dirty, sometimes infuriating and yet absolutely vital work to see that I knew what they were up against. I wanted them to know that when I asked them to dig deeper, I knew I what I was asking of them. And I wanted them to know that I cared. Compassion. And it worked. When I asked them to bleed for the sake of deadlines, they did. Because they knew I cared and I was on their team.

Might a teen respond the same way? I think so. Because like Lauren said: they know what they are dealing with. They are beating themselves up already. They have oft (as was the case with Lauren, we discovered later) assumed “well, I’m already ruined. Why try any more?” Every day, sometimes every hour, they are reminding themselves that in the eyes of many, as they struggle with their daily care, they are failures. Imagine how that hurts to the core? Caring, and empathizing, might help all that.

So the next time you want to pull all your hair out, run up and down the street screaming on the top of your lungs  “I’m mad as hell and I don’t want to take it anymore!” and just shake some sense into her/him: take a breath. Calm yourself, and then: try a little tenderness.

Compassion. I think my daughter might just be on to something. And it doesn’t even require a copay.

Filed in: Advocacycool new diabetes toolscurediabetes diagnosisdiabetes helpdiagnosisfeaturedGeneral HealthInspirationJDRFKids CanTeen Years and the challenges Tags:

Comments (9)

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  1. Katie says:

    In some ways, this is the best one EVER.

    And yeah, compassion is probably our best tool for life in general.

    Oh Lauren, you are so smart.

  2. What a wonderful piece! I *try* to err on the side of compassion with my girl . . . and, yet, the voice of fear is always nagging me to take hold and make her do better. She is harder on herself than anyone else could be. Thanks for reminding me that my first job is to love her through the T1D!

  3. Nancy says:

    Thanks for the reminder! So easy to forget when I’m frustrated, and yes, pulling my hair out.

  4. Thank you for this very timely post. It’s a reminder to me that while I may feel it continually, I don’t always show it. The frustration we all live with can only be understood by others who have similar issues…kids with chronic illnesses.

    You’re so right, taking things away…threatening…and quite frankly even incentives…haven’t really done the trick. In our case our son was diagnosed just a year ago so we’re still trying to figure things out. I need to put compassion first…and trust that with time things will improve.

    Your book has been a great help. My husband and I have been reading it together. Thank you for your sage advice and support…

  5. Jill M. says:

    Compassion: sympathetic pity and concern for the sufferings or misfortunes of others.

    You both hit the nail on the head! Compassion at any age is key. The teenage years are rough for anyone, with or without diabetes. Chances are your teen will make the same decisions and choices regarding their type 1 diabetes regardless of consequence or not. Striving to have more compassion and less criticism, even if it is with the best intentions, may make all the difference. It may not be immediate, but it just might help.

    I was diagnosed at 8 and started to take over my own care at age 15. I checked my sugars, went into my endo appts. alone, administered all my own shots and calculated doses. I was aware of the importance of checking my sugar, keeping good control, making sure to do insulin etc. but I was not really aware of the true consequences and complications that diabetes can bring until a Friday night sleepover at a girlfriends house had me watching Steel Magnolias for the first time ever.

    Like true teenagers at a sleepover, my friends and I had eaten pizza and ice cream and were up all hours of the night watching movies and talking. After we watched Steel Magnolias there was no way I could go to sleep! What did all of this mean? Keep in mind there was no internet and we certainly did not have cell phones with wi-fi. My friends started asking me all sorts of questions about pregnancy and babies and could I have them and could that happen to me and…I had no clue!!!

    Shortly after that my Mom took me to the mall and I asked her to buy me the ADA’s manual on type 1 diabetes from Walden Books. It was a huge hardcover book with hundreds of pages and dozens of chapters. When we got home I went straight to my room and flipped to the chapter on complications (ch.15-I still remember). It was then and there at the age of 15, alone in my bedroom, that I learned how diabetes was the leading cause of blindness and amputations, that most diabetics experience eye and kidney disease after so many years, that heart disease and stroke were common and more. I also read about pregnancy in type 1 diabetics. I was not yet sexually active ( I didn’t even have a boyfriend) and I was already scared about my possibilities for motherhood!

    I never discussed these things or feelings with my parents when I was a teenager. Your teenager may not talk to you about them either. Sometimes, children try to protect their parents as much as their parents try to protect them. Compassion and understanding might just be the way.

  6. Lori Temko says:

    This disease is impossible!!! There are no good days. We have to make the best of each day with our children. It hurts me so much if I see she has a bad day of blood sugars or worse yet several bad days but I try to remember God willing tomorrow is another day and she will do better. All I have is hope. I never punish her for anything diabetes related except a couple of times for lying about sugars because I felt that was dangerous and we don’t condone lying. I tried to teach her lying is not necessary because no matter her numbers I love her more than life itself and I am there to support her, and yes to show compassion every minute of every day. as parents of type 1 diabetics we wake up every morning and see that long road of diabetes ahead of us forever – imagine how these kids feel. It breaks my heart every day.

  7. What a powerful post, Moira. Thank you. And thank Lauren for being brave enough to communicate compassion to you. I’m not sure I would have been able to identify it as readily as she did, but once I saw it there was an immediate resonance.

  8. OB Mom says:

    This may have been a bit ago, but it is something I really needed today. My 13 YO son (8 months since Dx; still in honeymoon), just got home from a school trip to Costa Rica where he had to manage his own diabetes 24/7; no help from us. He did great but once home he’s been really really high. Last night he left his CGM in his room and didn’t even check his BG before dinner; just dosed based on the carb count. Since he’s still in his honeymoon his I:C isn’t linear … he needs more insulin when he’s high already or he eats a lot … he did both last night. When I asked him why he didn’t check and why he didn’t have his CGM, (probably in a voice that could be perceived as accusatory), he started to cry and said “I just wanted ONE day where I didn’t have to worry about Diabetes”. I then realized how hard the week on his trip had been for him. I gave him a huge hug, told him how proud I was of him and we both cried a bit.

    He said he’d be ready to start again the next day so we went downstairs, cuddled on the couch and watched The Daily Show while his correction started to work. Unfortunately it didn’t so we woke every couple hours and corrected again. Eventually he was OK in the morning, but it breaks my heart that he thought I was mad at him. Next time I’ll think of Lauren’s comment and try to be more compassionate. He deserves the best.

    Thanks for all your posts.

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