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.***

TSA Cares part 2

This post is a continuation of this one...

I figured the real test of the TSA Cares program would be our trip home. That way I would get to compare the two airports. I was not disappointed.

While I was not met at the curbside by a manager like I was at DFW, I did receive a call right as our bus pulled up the the terminal at MCO (Orlando). I was told to call back when I got closer to the security checkpoint, and when I did, I was met about 2 minutes later.

We again bypassed the line. I pulled out the items that I did not want to go through the x-ray, and Elise walked through a separate door. I was asked a lot of questions as to why I didn't want the items to go through (his reasoning was that pacemakers go through just fine), but I gave him my answers and he seemed satisfied. He wasn't challenging me, just curious.

This time around, Elise's hands were swabbed, but unlike DFW, our carry-on items were not. Something set off an alarm, so I got the pat-down. It was no big deal and we were done in less than 15 minutes.

So kudos to the TSA Cares program... Hopefully we'll be seeing less and less stories about bad experiences with airport security. Make sure anyone you know with type 1 and on a pump/CGM knows about it!

The TSA Cares # is 1-855-787-2227.

Hopefully I'll have some time to share my thoughts on FFL soon!  You know, before I completely forget everything that happened.

The TSA does care

Remember last year when we flew to SFO and had a terrible experience out of DFW (held us in security for an hour, made Elise cry,we missed our flight)? I'd link to the post, but I'm using the app to blog and I'm not sure it has that capability. 

When we decided to go to FFL, I went back to the TSA website to see if there was anything I could do to make the process less painful, and I found something called "TSA Cares". You call a number, tell them you are travelling with a child with type 1, let them know your flight number and time, and they basically give you a liaison that meets you to help you through the security screening.

In our case, we were called a few days prior to our flight, and L explained how it would work. Then, the day of, he called again and even notified us of a gate change.

As we pulled up to the gate, he met us at our car and escorted us to security. Bypassing the line, he then opened up a lane just for us and had a team working on getting us through. The rest of us walked through the machine and Elise was allowed to walk through a separate door.

Now, they did open up every one of our carry-on bags and wipe everything down, but they allowed me to pull out the items that I did not want going through the X-ray. All in all, we were through in about 20 minutes, and it was completely pain-free.

I know we usually blast the TSA about our negative experiences, but they really went above and beyond in our case. I don't know if it's like this at every airport, but give TSA Cares a try... The number is 1-855-787-2227.

And now you know... the REST of the story

Awhile back I posted a snippet about our awful experience with the TSA when we flew out of DFW airport.  I've been wanting to finish the story, but every time I tried to start, I'd get so freaking mad all over again.  

I figured it's about time to commit it to paper, lest my pregnant brain decides to get even more forgetful.  The story may run a little long, but here it is...

It all started as soon as we approached the security checkpoint.  Like any good (read: paranoid) person, I had printed out pages from the TSA website pertaining to anything related to kids, diabetes and travellers with disabilities.  I was fairly confident I knew what I could request from the TSA, and what I could expect.

I explained to the first woman that my daughter had type 1, and that I was okay with most of her supplies going through the scanner, but I'd prefer it if her pump didn't, and I wanted a visual inspection done of her pump supplies and PDM.  Which should have been okay, according to what is printed on their website:

"If you are concerned or uncomfortable about going through the walk-through metal detector with your insulin pump, notify the Security Officer that you are wearing an insulin pump and would like a full-body pat-down and a visual inspection of your pump instead."

My request was greeted with a look that suggested I had asked if I could run through the scanner naked and she replied she would have to ask a supervisor.  Meanwhile I put everything (except her extra pods and PDM) on the belt, while Fred and Mattias walked through the scanner, leaving Elise and I on the unsecured side.

We waited for about 5 minutes, then were rudely told to stand back ("no, over there... move back.  More.  Even more. You need to be out of the way").  I asked what the hold-up was and was told that they had to locate someone who could tell them what to do.  Meanwhile, Elise was getting upset and started to cry.

Let me interject that I had been nothing but calm, but Elise is just a very sensitive kid and can pick up on nasty vibes.  She told me if she could have Pinky (her stuffed bear), she would be okay.  Unfortunately, Pinky had already been scanned and was sitting on the secure side.  And they wouldn't give a crying 4 year old her stuffed bear back.  Nice.

Another agent (a guy this time), came over and asked me what the problem was.  I repeated my request, telling him he could see the information I had printed out from his agency's very own website, but he declined; again asking me what the problem was.

I told him I wasn't comfortable with putting what amounted to my daughters life support through the scanner and I wanted a visual inspection. He pointed at the PDM and said that it was fine to go through the scanner.  He seemed to be under the misinformed impression that it was a meter.  I told him that the PDM controlled the pump and if something happened to it, the pump itself was useless. He had trouble grasping the concept and walked back to the secure area.

So far me and my pregnant butt had been sitting on the cold, hard floor with a weeping child for about 20 minutes.  Elise starts wailing that she doesn't feel good, which is a sign that she may be low.  I wave at Fred to get his attention and tell him I need her diabetes back, which had already been scanned.  The guy tells Fred that he can't give me the bag, because it's already been cleared.  That's right, he was trying to deny my daughter the right to test her blood sugar.

Fred argues with him and tells the guy that Elise might be low and she HAS to check her blood sugar.  To which the guy replies, " she has to check right now???"

Fred says yes, grabs the bag and hands it over the partition to me.  It turns out she was in the low 200s, most likely from the stress, so I correct her and we continue to wait.

About 25-30 minutes after we first approached the security checkpoint, Elise and I were allowed back to the secure area, but we had to continue to wait while they swabbed EVERYTHING that was in our bags.  At least Fred and I were together.  By that time a suit had arrived with a giant binder and proceeded to try and figure out what to do with us.

It turns out the problem is that they can't pat down a child.  Ergo, they couldn't do a proper inspection on my very threatening 4 year old child with type 1 diabetes.  We had to wait another 30 minutes, and by that time we had missed our flight. 

The whole experience was awful and scared Elise so much that when it came time to come home, she started crying when it was time to go through security again.  Except at SFO, we had no problems at all (even though I requested the visual inspection again - yeah, I'm a slow learner), and the woman I dealt with told me that what they did at DFW was wrong.  She also told me that at SFO, it's a privately contracted company that handles security, while DFW it's the TSA.  Interesting, dontcha think?

Since this is getting rather long, I'm going to sum up what has me so pissed off (other than the obvious) in bullet points:

• Don't have something written on your website, then ignore it.  And when someone tries to point it out to you, don't tell them (something to the effect of) "we don't have to follow those guidelines".
• Refusing to give a child her teddy bear makes you a jerk.  And watching her stony-faced while she weeps for 45 minutes makes you a colossal jerk.
• Don't try to tell me what a PDM is for. I think I know.
• I think part of the problem was that the Omnipod was unlike any pump they had ever seen.  It would be nice it they were aware of all pump types.
• Use the brain you were given to assess the situation.  One-size-fits-all rules don't work.  If a pump-wearing 4 year old with type 1 diabetes is considered a threat, then we are all in trouble.

Yes, I realize that I could have made everything easier by just letting her pump go through the scanner.  But I was not comfortable with that option, so I tried to follow the TSA's OWN GUIDELINES and look what happened.  Why was it okay at SFO and such a problem at DFW?

I have yet to file a complaint with the TSA, but it's coming.  If nothing else, another family, CWD or PWD won't have to deal with the stupidity that we did.