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Monday, July 29, 2013

We get by with a Little help from our "Friends"

Oh my, Diabetes Mine, you certainly seem to be poking some hornet nests of late.  First Wil's post on parents checking their kids at night (on which I left a comment, and really wanted to blog about; but... well, life. 'Nuff said).

The latest poke is Mike's post on the GAC, or Guest Assistance Card. The gist of his post was that PWD should not use such accommodations, unless absolutely necessary. He would rather the world see the type 1s can do anything anyone else can; including waiting 45 minutes in 100+ degree weather to ride a roller coaster. In direct sunlight.

I will be the first to loudly say that we used the GAC.  Was it absolutely necessary?  Who knows?  That is such a grey area and differs from person to person.  But for Elise, it was a must.

Issue #1: Elise runs high at theme parks.  That's just how she rolls.  Disney, Six Flags, state fairs, water parks... anything with a ride.  She wants to ride the biggest and the scariest rides she can, and that in turn makes her BG sky-rocket into the 400-500 range.  We usually run a 95% temp basal the entire time we are there, plus do a tonne of corrections, and can still only get her into the low 200s.  As a result, she feels crappy, and we have to take a lot of breaks.

Issue#2: Elise wears the pod.  We've been told that her body temperature *should* keep the insulin from going bad.  But when it is that hot, forget it... nothing will keep it from spoiling.  This means even more time outs for pod changes, shots etc. 

Issue #3: We worry about dehydration and its good friend, ketones.  In hot temperatures, everyone has to drink water, but because of Elise's elevated BGs, we PUSH water.  We want to make sure she is well hydrated and can keep the ketones at bay.  Add on some more time outs for many, many bathroom breaks.

All this adds up to a lot of sitting around, NOT doing what Elise wants to do; ride the BIG rides.  All of them.  Multiple times.  Over and over. And for the amount of money Disney charges for us to get in, she'd better be able to do just that.

But if she's sitting in some air-conditioned room, fighting a BG of 450 and feeling so awful that she's crying, she can't.

And why can't she?  Because of diabetes.  We would never be in that situation if it wasn't for diabetes.  We can prepare until the cows come home and it STILL doesn't work. We didn't do anything wrong; unless taking a child with type 1 to a theme park knowing what it does to her blood sugar is wrong.  And if it is, I guess she CAN'T do everything a kid without type 1 can do.

As for the TSA Cares program, I will also continue to use it for as long as it's around.  All we want is for airport security everywhere to follow the same protocol for PWD and CWD.  TSA Cares helps in this regard. I'm not asking for special treatment, I just don't want to ever miss my flight again because the TSA won't follow their own rules.  

Look, I get that we want the world to see that PWD and CWD can do pretty much anything a person without diabetes can, but sometimes they need a little help.  There should be no shame in that. While I will never let Elise falsely use diabetes as an excuse, I want her to know that it's okay to ask for help. I don't see it as special treatment, I see it as a break.

And if it helps a child who, just last month was crying because she didn't want to live the rest of her life with diabetes, feel special; then I'm okay with that too.

***I just wanted to add that I have no problem with what Mike wrote... I felt the need to show a different viewpoint.  And since all three kids took a nap today, I had time to do so.***

12 comments:

  1. Amen, sister!!

    We used the GAC at Epcot last year and it was a lifesaver time and time again. Just because our kids aren't visibly 'sick' or can do anything doesn't mean they don't need a little help from time to time!

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  2. I (like you) think each of us has to do whatever is right for us/our kids.

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  3. Wonder how he feels about the 504 plan in schools???
    One thing also needs to be pointed out- he's not a parent.

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  4. Thanks for the post, Joanne. To me it comes back to the sentence you wrote: "While I will never let Elise falsely use diabetes as an excuse, I want her to know that it's okay to ask for help." That's the whole point. I wrote how I feel, as an adult who's caring for myself and not a kid with diabetes. Obviously, everyone's D-Life varies and the fact that you see the need for your daughter... I'd make heads roll to ensure that she gets a GAC. I want us to have these, or any accommodation, as an option to use if we feel the need. And that's totally for everyone individually to decide.

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  5. I agree with Julie. I think sometimes being the parent of a child can be tough because we are always guessing how our child is feeling ... Plus unlike an adult they are constantly growing ... So Disney this year will most likely be different than Disney next year

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  6. @Julie L: Regarding 504s - Same basic point, I think. Sometimes they're needed, sometimes not. But totally fact-sensitive for each school district, family and CWD. What works or is needed for one may not be the same for another. And my personal experience with 504s? None, since I didn't have one as it was a different world back in the 80s and 90s when schools weren't so afraid of liability (you could actually have recess without there being a fear of litigation).

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    1. That's the problem though, Mike. You often don't realize a 504 plan or a GAC is needed until AFTER the fact. And then... they are worthless. Accommodations are not retroactive. The protections need to be put in place from the beginning to make sure we are protected.

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  7. I've struggled with the whole disability thing from day one and remember feeling bad when we would sign Elise up for a free event ... I didn't want to get a GAC at Disney but I'm glad we did ... There's a fine line between taking advantage of the system and taking advantage of services offered that help make things a little easier...

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    1. Well said, husband o' mine. 100% agree.

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  8. I completely agree, Joanne! And, just a side note, if nothing else, it's the least little "perk" we can get as parents in having to deal with this...make it easier for us to help them still be kids!

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  9. I *totally* got the GAC card to take advantage of the system! I was all "no need to read up on how to use Fast Pass---wooohooo!"

    This has been the only perk of diabetes I've noticed so far.

    (Aside from meeting all of you good people.)

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  10. Amen. If available and needed, then by all means, use it. It was totally necessary for Elise. And I agree that our kiddos need to feel like they can ask for and accept help when they need it.

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