Thursday, March 3, 2011

Great Advice From Even Greater PWDs.

I couldn't think of a better name for this. It started as a blog post on one topic featuring all these awesome bloggers and then became something else. A lil more than just the info I asked for.

First let me introduce you to our panel of PWDs.

Scott Strange We first met on twitter almost a year ago. He was one of the first members of the DOC I met. He's dashing, smart, funny as hell and a great listener. Hes been one of Justice and mines biggest supporters. If you follow my blog closely he is also MR STRANGE! I am so honored that he was willing to give his imput on this post. If you have never checked out Scotts blog or read his must!

Colleen Gray Again another tweeter who welcomed me to the DOC with open arms. I love her attitude, and outlook on things. She has been a huge help when we first started pumping with all my insane questions. Definitely someone I must bar hop with one day. Haha. Also another amazing blogger that is a must read!

Sarah Jane Blacksher Geez I must spend alot of time on twitter cause thats where I met Sarah too! Lets face it the DOC on twitter is top breed baby. Sarahs sense of humor and honesty is what I love best about her. She keeps it real and does NOT bit her tongue. On twitter or her blog its all real and you will not regret checking it out!

Haley Van Schaick Where do I begin? She's a new blogger who has amazed me in the last month. She's a teen age girl living with Type 1 but my god she's so responsible and so on point! She shares things our kids may not tell us or know how to verbalize and I am so grateful for her point of view!

A look into their childhoods. A glimpse into what maybe we all need to see.

Let me explain how this all started. I have come across a few boards and even parents in person who actually scold or discipline their CWD based on their bgs. Taking things away, not allowing them to go to camp, telling them "if youre high you did something wrong, if youre low than I know you took insulin". Yes. I heard it. I had a girl almost crying on my shoulder. I consider myself not just a D mom to Justice but to ALL CWD. A mentor,a friend. Its our responsibility to look out for the kids who are living with this disease but are not as fortunate to have parents or caretakers who honestly, know what the fuck theyre doing. Period.
So what can we do? Sometimes hearing it from others can help.

In this case, how about hearing it from adults who grew up with Type 1, or another teenager just like theirs.

What are your thoughts on punishment regarding blood sugar readings?

Colleen Gray, 25
Diagnosed at 3

"I personally believe that no one should ever be punished for a blood sugar result. And I do mean ever. If there’s an out of range blood sugar, the best way to handle it with a child is to simply talk about it. Talk about why it might be out of range and how it might be fixed. There should never be a good or bad blood sugars. The number on the screen is just a tool to decide how to act next, not a measure of success or failure. With a child with diabetes, every number is a learning experience."

Sarah Jane
Dx at age 11
Now 24

My parents never told me that I would get in trouble if my blood sugars were high, but they did lecture me when I was out of range. I eventually started lying to them about it. I would take the number it was and take off 100 or 200 so it was in range. For example, if it was 323, I would say 123. I even told the school nurse this so she wouldn't call my parents if it was out of range. Eventually, my family caught on when my A1Cs were much higher than what i had written down.

Scott Strange
Age 47
Diagnosed at 7

My fear about that type of responses to glucose readings would be that it might make the child not only resent their diabetes (more than they already do), but also the parent as well. Moving into the teen years, when puberty totally jacks with things anyway, I would worry that the teen might lie about results or maybe just decide "I'm not diabetic today" . There's enough issues with being a teen, you don't really need another layer of angst there.

Looking from the outside, it seems that these people see "good" and "bad" numbers as opposed to just a number. It is a simple data point that you use, combined with other knowledge of the situation, to base actions on. It's kinda like the weather forecast helping you decide what you are going to wear that day. And sometimes those "bad" numbers just happens. Too many things that can affect that number are not totally controllable by a diabetic.

Haley Van Schaick
Dx'd: 11
Age now: 16

Sometimes my diabetes police will tell me that I can't do certain things if my diabetes isn't perfect. One of the main things they take away from me is my teenage freedom. I love to go into the city and see my best friend. She lives far, so I take the train to see her. If I have bad blood sugars my police will threaten me that I can't see her.  Sometimes diabetes police don't understand that all highs and lows aren't controllable. I will go high and low no matter what I do. If my diabetes police don't let me eat or go somewhere it will just make me mad. I won't take any better control of my diabetes. I already do the best I can. If you tell me not to eat chocolate- I'll eat it anyways.

Punishing diabetics to make them have tighter control over their diabetes isn't going to help any. Doing that makes them feel bad because they are already trying so hard. I agree with Alexis that punishing diabetics in this way is appalling.

Is there a time when discipline may be necessary?

Scott Strange
Dx'd: Age 7
Age: 47

Of course, if said child downed an entire gallon of ice cream and a package of oreos and then ended up in ICU; then there would be the "talk". I would think that talk would be hard, it would be so easy just to chew their butt off and make them feel guilty. Maybe a little yelling would be applicable, I'm just not sure. The problem with yelling is that often people don't know when to "stop" yelling. If I deserve to be yelled at, I'll take it. But if it goes on too long I'll be asking them "Are you done yet?" and whatever lesson I was supposed to learn just went right out the window.

Colleen Gray, 25
Diagnosed at 3

Diabetes is constantly a learning experience. I think punishing kids for getting something wrong is sending the wrong message. It’s one thing if a child intentionally doesn’t do something, but parents need to understand that they are children and despite how this disease makes us all grow up a lot faster, there’s still a bit of learning curve. Not to mention the complexity of dealing with diabetes emotionally. Parents need to understand the toll that diabetes plays on a person and try to understand why their kids aren’t doing something they’re supposed to. Are they hiding it from friends? Are they experiencing burn out? It may not be as simple as just not doing something because they forgot or didn’t feel like doing it. I know as a kid there were plenty of times when I didn’t check my blood sugar because I didn’t want to have to whip out my meter and awkwardly test with lots of people around.

I know we all have different views on this, but how do you feel about turning over control? I believe every child is ready at different times in their lives. There is NO right or wrong age. But with that said I also believe no matter how old the child is parents must stay involved and be their partner. Check behind them, help along the way.. How do you feel about this?

Scott Strange
Dx'd: Age 7
Age: 47

Turning over control. I've been struggling with how to answer this one. I was dx'd at age 7 and by the time I was 9 or 10, I was pretty much doing it on my own. My parents both grew up during the Great Depression. Sometimes life is hard and you just have to deal with it the best you can. I did urine tests, first with the tablets and then the strips, for 10 or 12 years. Those tests would show you what your numbers were like a couple of hours ago, like driving by looking in the rear view. I had no support system, I'm glad things are different now. I can't even imagine growing up with the DOC available. How my life would have been different.

Colleen Gray, 25
Diagnosed at 3

In diabetes, just like in life, I think kids need to be able to make some mistakes and learn from them. Parents obviously still need to keep an eye on their CWD, but they should be more of a guide rather than an overseer. I’m a bit biased but I really do think diabetes camp is a great way to achieve this. It’s a way for parents to let kids go for a week to a place where they are guaranteed to be safe and surrounded by people who know diabetes as well as mom and dad or better. The CWD learns so much about how to take care of himself and the parents learn to trust the kiddo to be safe and make good decisions without the parents controlling everything.

Sarah Jane
Dx at age 11
Now 24

I think the signs of when a child is ready are the same signs as when a child is ready for anything - a sleepover, to do their own chores, etc. A parent should look for signs of independence and work diabetes in like they do in the rest of their lives. I was ready at 11 but was not ready enough for an insulin pump, not for ten years.

I think, from my own experience, that parents should keep open communication with their children without reprimanding them for not doing well. Also, doing things like sending them to diabetes camp and getting involved with JDRF will help them keep diabetes on their mind without making it a win-lose situation. Remember the way you felt and the unfairness you felt when your child was diagnosed, and realize that in their preteen and teenage years they will have to be dealing with those same feelings. The more you communicate the more you can realize your child's needs, whether it's physical or mental health issues they are dealing with.

I believe that my parent's decision to let me control my own diabetes from the start (because I was old enough to) was the reason that I never wound up DKA or with an A1C above 9 when I was in high school and college.

Justice also wanted to weigh in on the topic. Here's what he had to say:

"I think that we should not let them do that. But we could let them go and do what they want, just be careful. Dont eat anything until their blood sugar goes down. But they can do any activity.

I grew up like this, and my parents lets me do it.

(Regarding punishment): "I think its not fair because its not like theyre going to kill anybody! And theyre not in trouble, because its not like theyre making themselves go high! DIABETES IS MAKING THEM GO HIGH!"

When asking him how he felt about me turning over D to him he said " It makes me feel like Im a man, and I'm not. Im just not ready for that yet."

(Justice does his own boluses at home, can set temp basals, check IOB, bgs, and always treats his own lows and know how to use his CGM in helping him do so, in school as well. For us this is what works right now).

I hope this has helped some see things differently, confirm what you already knew, or just gave you a nice view into our kids as adults. Either way, I want to thank all of these amazing bloggers for sharing their thoughts!


Reyna said...

WOW Lexi, what a wonderful post. I appreciate the insight of these experienced bloggers. I only follow Haley's currently...I think I need to go check out the others...and it seems I am missing out on a lot by not "tweeting" - LOL.

Justice and Joe sound like they are at about the same independence level. Does Justice hand over care to you when he is at home? Joe does quite a bit. Just curious.

Penny said...

Great post! I love hearing about CWD who become PWD, cause we are a raisin' them now! It always gives me some insight and some path to follow (or not follow for that matter)
Thanks Lexi!

Donna ((Sweet Momma)) said...

Wow, girl! You put a ton of work into this! And its WONDERFUL!!! I really enjoyed reading... and I am going to really enjoy checking out the blogs of the PWD's that I dont already know. :)

Sarah said...

Awesome post. I'm 38 and was Dx'd at 7. Only in the last 1-2 years have I pretty much gotten rid of the "good"/"bad" number idea in my head. My parents never punished me, but I heard about the good/bad from EVERYONE--drs, nurses, my 'rents, other 'ents of CWD, camp staff, etc. It was the 1980's-90's, that's how everyone thought. BUT I internalized it, and it really made me depressed, ashamed, unable to make my own decisions and manage my own D, b/c I never felt perfect or good enough. That's not the way to empower CWD to take care of themselves. We can do much better than punishment and shame.

Lora said...

What a great idea...

Sarah Jane said...

Thanks for including me Alexis. Great idea.

Shannon said...

That is a great post. I love it. I will say that regarding this particular topic, I am a little bit shocked that parents would punish their children or use negative language for poor blood sugars. I mean,,,duh! They have diabetes. They will have high blood sugars. I guess if a teen is not taking any insulin at all so often they go into dka, one would need to do something, but to punish them simply for having high sugars seems ridiculous to me.

Laura @ Houston We Have A Problem! said...

Really??? You know parents that punish their kids for bg #s? That makes me heart hurt --- there areso many factors involved! Ugh!

The kids need hugs not punishment!!!

Thanks for this great post. I have to admit - I'm a little jealous of your relationship with so many PWD.

As a mom of a CWD I love their insight and knowledge!!

Hallie said...

I LOVE this!! Great advice- that I feel like inshould print out and post somewhere!

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