THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Thursday, March 22, 2012

Stop, Drop, and Drink -- Wherever you are, even if it's not in the designated food area.


Ah, Spring Break.

I told the girls they could pick one "big" thing to do during their hiatus.  They mulled over a couple movies, contemplated a bouncy house place, and talked about the zoo; but ultimately decided they wanted to spend a day at the Children's Museum of Phoenix.  We used to have a family membership, and would play there several times a month.  Since everyone is in school now, it's been harder to find the time to visit, and we haven't been in about a year.

Tuesday was the day, so we packed up a lunch and hit the road!

Lunch with the Birds.

The "Noodle Forest".

Painting a rocket ship.

As predicted, they had a blast.  They absolutely LOVE the 3 story play structure, so we made it a point to stop and play there a second time before heading home.


I found a spot behind the chairs and propped myself up against a wall.  I had a better look of the entire structure from that viewpoint, a little further back.  I was trying to watch the girls whisk up, down, and around all the twists and turns, but lost sight of Sugar momentarily.  After a few minutes, I found her hobbling away from the play area, towards me.

I pulled out her testing supplies.

She dropped into a slump beside me.

66.

I could tell she was dropping fast.  On auto-pilot, I opened a juice box, handed her some Nerds, and opened the strawberries we had leftover from lunch when a security guard sauntered over.

"We'd really prefer that you not eat or drink on the carpet.  There's a designated food area on the second floor."

"I understand, but my daughter has diabetes and is experiencing a low blood sugar.  She needs this snack as medicine right now."

"That's fine, but you'll need to move up those stairs to the designated food area."

"Sir, we can't move right now.  I have other children in the play structure, and she needs this sugar right now.  I don't have time to find them, gather our things, and move upstairs.  If we don't treat this low blood sugar right now, she could have a seizure or become unconscious."

"You need to take the food upstairs to the designated food area."

"I'm not moving.  You can get a manager if you need to, but I'm not moving."

At this point, Sugar was getting very upset.  She was afraid she had gotten me into trouble, worried that they were going to take me to jail, and was refusing to finish her fast acting glucose.  She started crying and I could tell she was panicking because she knew her blood sugar was low, but she was afraid to continue treating it. (Dramatic much?  Probably.  But, in almost 7 years, she really hasn't ever been told that she couldn't treat a low blood sugar wherever she was, so to her it was a big deal that we were "breaking the rules".)


I assured her it was fine to finish her juice and chomp on her Nerds.  She guzzled the rest of her juice, retested at 86, and refused to take anything else.  I really wanted to see her up over 100 before she went back to play, but she got up and ran off faster than I could stop her.  Later she admitted to me that she knew someone was going to be coming back to talk to me.  She wanted to show them that the problem had been taken care of, and they didn't need to ask me to move again.  She was so worried about getting me into trouble.

The manager came, and there wasn't an issue.  He assured me that it was fine to manage her low blood sugar whenever we needed to, anywhere in the museum.  I thanked him, and explained that we completely understand the need for having a designated food area, especially at a children's museum!  No one wants to deal with sticky exhibits, food crumbs, and the bugs that could become a problem if food and drinks were allowed all over the place.  I explained that we ate our lunch in the designated area, but we simply could not move there to manage this low blood sugar situation.  He agreed, and that was that.

I also understand that the security guard was simply doing his job.  It's his JOB to make sure everyone is following the rules.  I completely understand that he had no idea that my daughter was having a medical emergency.  From an outsider's viewpoint, she probably looked fine.  Unlike a child with epilepsy who has a seizure, or a child with asthma who has an asthma attack, there really weren't any obvious outward signs that my daughter was having a low blood sugar.  I also realize that he may have never encountered a child with diabetes before.  I appreciate that he was working hard to make sure everyone was having a good experience at the museum.  To his credit, he was very nice, and I never felt as if he was being confrontational.  I always felt he was just trying to enforce the rules.

I guess the only thing I'd like to see change was the discussion about moving to the designated food area.  If a parent identifies that food/drink is being used for medical management, it seems that offering to see if the parent needs help might be a better approach.  Or simply acknowledging the situation, and then going to get a manager to deal with things from there?

Last year, a friend of mine dealt with a very similar situation at the same Children's Museum. She followed through with the CEO, and was assured that staff would be educated about how to handle this situation in the future.  I have no doubt that her experience and follow up was the reason our situation was resolved without an issue.  I hope that, by sharing our dilemma earlier this week, we're able to help other families avoid a problem in the future.

Perhaps it's time for a review?  Diabetes advocacy is a passion of mine. I'd be happy to come talk to museum staff to explain what Type 1 Diabetes is, and why there might be times when low blood sugars must be managed immediately, regardless of where it is occurring. It's also important not to allow a situation to escalate.  We could have had a true disaster on our hands had I not been able to convince my daughter to finish her juice.  It's important to remember that these conversations are happening in front of our children, and no child should be left feeling as if they're doing something wrong when managing a situation they have no control over.

In the end, everything worked out fine for us.

I hope the same can be said for other families who are raising a child with diabetes that may visit the Children's Museum of Phoenix in the future.  Every day 40 children are diagnosed with Type 1 Diabetes.  There's a good chance another T1 child is there playing, even as I finish this post!

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6 comments:

  1. Oh my gosh, Wendy!

    I'm sorry you and Sugar had to go through this. My most awkward low moment as a kid was during my 1st communion at age 8. My mom was sitting a few rows behind me and could tell that something was up (definitely not my sugar). Thankfully, another parent had some candy on them and came running down the middle aisle to assist me right before I received my 1st communion in front of the whole parish.

    I'm so sorry your family had to go through this.

    -Maressa

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  2. Glad it wasn't a big issue once you talked with the manager. Wish the security guard had been able to 'move on' after your first explanation, though. Totally sucks that Sugar felt that she was getting you in trouble...bad enough to deal with the feelings of a low!
    The job of educating those who don't live this 24/7/365 is never done!

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  3. You did the right thing-stayed calm, and totally said the right thing. I'll have to remember that :food is medicine: part! I've never had a problem treating my daughter in public, but you can bet I wouldn't move either! I'm thinking the trip up the stairs might have been enough to drive her lower too!

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  4. That is horrible. I used to have teachers that would not allow me to treat my low blood sugars in class. I had to wait while shaking and sweating until the bell rung. Stupid people make me mad.

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  5. In the end, Sugar was OK, the manager acted properly, and the security guard learned something. Consider it a success: spreading diabetes wisdom, one person at a time.

    For me, if I'm in an "off-limits" place, I just shove all four glucose tabs in my mouth at once rather than one at a time (or eating something more tasty). It probably makes me look ridiculous, but it makes me think I'm being discrete. The only place I can recall not wanting to treat a low was in synagogue during Yom Kippur services. This is a religious holiday when everyone (except me) doesn't eat for 24 hours. To pull out a snack would fall somewhere between insensitive and inappropriate. In this case, I'll take a few steps and go outside.

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  6. Thank you for sharing this! And kudos to you for remaining calm through it all! So glad Sugar came back up and all was well :o)

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.