April 12, 2010

Type 1 Circus Act

For your amusement, high above the center ring, I will to go out on the high wire and attempt to juggle contradictory new stories about type 1 parenting and a few other bits into one coherent idea. With no safety net.

How hard can it be?

Parental involvement in type 1 care matters. Regular readers may note that just a few post prior to this I linked an actual science article an article that makes that very case. Be involved and all that stuff.

Now comes a story across the new wire (thanks for the tweet K2) that I like just as much and it seems to fly in the face of that prior bit. It says it right there in it’s headline “Child's diabetes control 'poorer when parents worry.

Ok so we are meant to be involved by not worried. What the....


I often mention Hunter S Thompson. His book Fear and Loathing in Las Vegas is a classic for its treatment of “The Fear.” Now I am not suggesting that drug induced paranoia is a goal or even a good thing. The book however is a funny if twisted exploration of, among other things, fear. It is nice to get the exploration of fear along with the funny which is what I read the book for. I know, shock of shocks I like twisted funny. Who’d’ve guessed?


The Fear doesn’t help. It doesn’t do anything for us. It doesn’t do anything for our kids and in the book it... well it is a character in the book as much as Thompson or his Attorney and it does tons for the narrative so OK it helped him a lot.

Way back in the early days of YDMV I wrote “kids can smell The Fear on you better than a dog.” In addition to Thompson there I quote the great philosopher Baloo the Bear. But in that that article I didn’t make a case for the damage The Fear can do.

Thankfully, here at YDMV, an even more sage thinker than Thompson or an animated bear recently spoke to the damage The Fear can do. Friend of the Blog K2 said, “I lied about my numbers, starting in the 6th grade- because I saw how sad, scared, and upset my parents got when my numbers were high.”

Yes it is a very natural reaction for parents to be concerned about blood and a wee bit irritated if kids lie about numbers. That pushes a few parental buttons. The don’t Lie to Me button. The Diabetes is Serious button and maybe most significantly the big red FEAR button.

Hold on. Take a deep breath and go back and understand K2’s comment. Her numbers game was a response to parental anxiety. AKA The Fear. Now I am in NO WAY saying that The Fear isn’t real, understandable, rational or justified. I mean no judgment or disrespect to K2's Mom and Dad - for the record I consider them super heroes. I am simply asking to consider what The Fear motivated her to do.

Mortality is not on an adolescents radar. The brain develops over time and the part that understands risk and mortality is not there yet in developing teens. I am sure there are enough actual sciency articles to make that case but how about we all just agree to hold that truth to be self evident. What kids have is the ability to be "VERY intuitive to others emotions." Like say The Fear or it’s evil twin The Guilt.

Kids love their parents. They see the fear and know it hurts their parents. Kids want the hurt in the parents they love to go away. When numbers vary (and new flash: numbers vary particularly when hormones and growth are crazy - a.k.a. adolescence) kids may be motivated, by love, to minimize The Fear they see in their parents with a lie.

My job as a parent is to take that motivation away. To not let my fear become their negative motivation. My brains understand mortality their doesn’t. So my job as a parent is to separate their good care activity from my emotions. To remove my emotions from the equation. Even the quiet little passive aggressive tones of voice and facile expressions. Numbers need to be numbers not measures of The Fear.

How the hell do I do that?

Well first I try to understand it. From that I try to manage the emotion.

I suggest that not only can I do it but that most type 1 parents already have. Consider this parallel, it is one all parents of Type 1 kids know. The feeling of, “You better be high or you are in so much trouble.” For the record here I am referring the BG type of high not the Hunter S. Thompson variety.

In this all so common scenario parents learn to disassociate our emotion over behavior and consider type 1. It takes time but in time we get it. Hopefully we don’t actually say the, "You better be high.." bit too many times but the point remains we learn to separate actions and feelings because of diabetes.

I suggest that the graduate school lesson here is to disassociate our feelings and adolescent behaviors. Don’t let the behaviors trigger emotional responses. Even the tone of voice and facial expressions.

In a turning full circle kind of way this gets back to one of the first posts I wrote for YDMV. Back in '07 I wrote a review of some Friends For Life sessions on working with teens. My take away then was, ‘We love them. They love us. As parents we need to lead the family away from the classic fights and into sing another tune of parent teen communication.

“Let the kids know you love them. Touch them. Tell them your fears as your fears knowing they may not share them. Oh and don’t hover over their shoulder while they test - Apparently it doesn’t make the meter read faster. “

Later in that same article I wrote about some of what I learned from Joe Solowiejczyk. “As parents we need to be consistent about boundaries. We don’t have to like diabetes. Our kids don’t have to like diabetes but just like dating or other household issues there are non negotiable actions, like be home at midnight, that have to happen or there are consequences. We can’t fall into the trap of feeling sorry about the diabetes and allowing slack on the diabetes care non-negotiables.”

What does it all mean? Well first of all it means I have been writing forever (and if you are still hear you have been reading forever) on a subject I wrote about ages ago. All this is just a repackaged rerun. Sorry about that.

Maybe though that isn’t so bad. These two recent articles really are stating what needs to be said over and over again. Parents of kids with Type 1 need to be involved with care. That doesn’t mean hovering and it most certainly doesn’t mean projecting our fear to be theirs. It does mean diabetes care should be talked about. It should have boundaries just like other chores. Our response needs to be clear, consistent and separate from our emotions. Nobody has to like it. We need to understand where they are in their mental development. Specifically that they are highly attuned to our emotions long before they appreciate their risks. 

There is no perfect diabetic. No magic mix of shots and carbs. So it stands to reason there is also no perfect diabetic parent or family.

I'll step out on the high wire and juggle and try to just leave The Fear behind.

Oh and I lied. There is a safety net. It's my DOC friends.

5 comments:

Penny said...

Thank you for a great post Bennet. I love Kelly's too - hers help me realize how G might think about things and what she might be feeling. I so appreciate that in my life as a mom to a T1 daughter.

Two things struck me -

'Numbers need to be numbers not measures of The Fear. '
I try so hard to do this and feel that in 18 months with T1, I have gotten better, but gosh it's hard sometimes. I try to let the number sit and be a number, cause that's all it is. It is simply telling me what to do next - treat a high, stay the course, treat a low, etc. I try to let G see me say that - "You know, it's just 237 let's us know that your body needs some more insulin right now." It helps when I voice it out loud to myself and her. That removes the Fear from me a lot of the time.

'There is no perfect diabetic. No magic mix of shots and carbs. So it stands to reason there is also no perfect diabetic parent or family.'
Bravo, amen and someone give me a halleluia! I think we as parents need to hear this more often. From our endos, from our pediatricians. Cause frankly, sometimes I feel like it IS all my fault for this T1 from her doctor and care team. The numbers are not in range enough, her A1C (my personal grade for care) is too high. There is rarely any talk about emotions, fear, guilt and the like. I wish there were. I have tried to insert it into conversations. It has not been well received. Hard to be perfect. Perfect leads to the Fear and the Guilt, bedfellows I know from time to time.

Thanks for lots to think about and to do.

joy orz said...

Great topic! Are you SURE hovering doesn't make the meter read faster? I klnda think it does. : P

I must have made a face or comment the other day because Ava asked me if something was a BAD number. It took me a minute, but I came up with this...

There is no such thing as a bad number. All numbers give us information. Either you need more insulin, more carbs or more hugs.

Bennet said...

Either you need more insulin or more carbs ALWAYS more hugs.

Scott K. Johnson said...

Great post Bennet!

diabetes blog said...

Hi, I'm a diabetic with type 2, blogging about diabetes as well. These tips are truly great to decrease the risk of getting diabetes and improve the current situation with it.