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Psychosocial

Children with Diabetes at Disney World

Children with diabetes are different from other children. As I write this I am surrounded by thousands of these children. They are different, it seems to me, by being more responsible than other groups of children that I have known.

Why? I think there are several reasons. They seem more responsible because of having to deal with something as serious as diabetes at a young age. These children are more outgoing and interact better with older adults like me than others I have met. And they are different too because their parents so obviously show them so much love and attention.

That’s particularly true of those families here with me at Disney World in Florida this week. More than 2,500 people are gathered here from all over the world for this wonderful five-day gathering sponsored by Children with Diabetes.com.

Jeff Hitchcock started the Children with Diabetes website in 1995, about the time that I started my site. Since then it has grown into the premier source of information about type 1 diabetes. The conventions like this bring these families together to share their knowledge and experiences.

(Full disclosure: Jeff and I have been friends for years and I own several thousand shares of Children with Diabetes stock.)

The parents here are different too. They can be assertive – even aggressive – in supporting their children. That message came through strongly to me at the first session I attended here.

It was a focus group on software that works with a continuous glucose sensor. When some parents complained about the program’s inability to customize its reports and that it could not eliminate obviously false readings, one of the presenters made a mistake.

“These reports are intended for your physician, because he makes most of the decisions about your child’s diabetes care,” she said.

“No,” roared back most of the 40 people there. “Our physician is there just to write the prescription,” some people said. We take care of our children every day, and the physician sees them ever three months or so.

At least the company representatives listened and wrote down what these parents said. Someone said that another shortcoming of this otherwise excellent program was that it doesn’t work like the GlucoMON, which connects a LifeScan meter to a cell phone. Later, I mentioned that to Kevin McMahon, who developed to GlucoMON.

Like me, Kevin sees these parents and children as special. And this convention couldn’t be more different from the American Diabetes Association’s convention that we both attended in Chicago a couple of weeks ago. Kevin noted that at other conventions, including the ADA’s and the American Association of Clinical Educators, most of the people are one or two removes from people with diabetes and seem to be much more focused on picking up the freebies that the booths in the exhibit hall offer.

There are indeed freebies here that the parents and children certainly do not disdain. I have been helping out at the Pelikan Technologies focus groups and booth, which demonstrate the Pelikan Sun lancing device, which I have written about here. As I write, people are crowding around the booth right now to sign up for a free trial of the Pelikan Sun.

The Pelikan Sun is available only in Australia so far, but it’s coming to the U.S. soon. In fact, this is sort of a coming out party for the device. Judging from comments from parents and children as they first used the device without feeling the pain of an old-fashioned lancing device, it is a success. Full disclosure: I wrote one article under contract to Pelikan Technologies, and the company paid my way here.

I also have a connection with this place, Walt Disney World Resort, often referred to as simply Walt Disney World or Disney World, just outside of Orlando. Twice the size of the island of Manhattan, it’s the largest theme park resort in the world. We are at one of the hotels, Disney’s Coronado Springs Resort, which has about 2,000 rooms and suites, spread out over 126 acres.

Not only have I never been in the state of Florida before, I have also never been to a Disney resort before. Even though I grew up in Southern California, close to Disneyland in Anaheim, it didn’t exist until 1955, when I was already away at college.

But I did know Walt Disney. About 1950 my parents took my little sister and me to his house in Palm Springs for lunch. I always remembered how nice he was to such an awkward teenager that I was. And I still remember how his two daughters, Diane and Sharon, who were also there for lunch were so snotty. Of course, since they grew up to be multimillionaires, they probably felt justified to be unpleasant to the unsophisticated son of school teachers.

Walt Disney was probably the most famous person I ever met, except for Louis Armstrong a few years later. But Walt, as he encouraged me to call him, wasn’t as famous then as he later became, especially when Disney World opened in 1971, a few years after he died.

It’s hard for me to imagine a more magical place for children with diabetes to meet. When I went to Chicago a couple of weeks ago for the annual American Diabetes Association scientific sessions, I thought the convention and the city was so well organized. But it has nothing on this place in terms of organization as well as charm and excitement.

Florida in the summer can, of course, be hot and humid. I came prepared for it with Bermuda shorts and polo shirts, but I am inside almost all the time, where it is severely air conditioned. I have had to leave the building for a dose of warm air – air that is so hot and humid that it steamed up my glasses. But it is truly delightful. Especially for children, who seem to thrive here on the excitement.

Here, as Jeff says, kids can be kids. Even special kids who know how to be responsible at an awfully young age.

This article is based on an earlier version of my article published by HealthCentral.

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