This is not a transplant update. But it is a blog post that needed following up on for a while.
As you know, we went on our Make-a-Wish trip in September. You may or may not have noticed that we kind of glossed over writing about our visit to SeaWorld. The honest truth is that, other than the awesome dolphin encounter experience we had there, our trip to SeaWorld was not a good one.
Patrick was on a roller-coaster high after a week in theme parks and so he asked to ride more rides while we waited for the dolphin and whale shows. However, as we started to ride rides, we came across a funny thing.. the park staff seemed pretty uncertain about allowing Patrick’s TPN backpack on rides. They have a safety policy against “loose articles” on rides. We got a few ride operators to let him ride.. But when we got to the ride Patrick wanted most, the kiddie roller coaster, they wouldn’t let him on. Not unless he could leave his backpack behind.
This seems logical, right? Just take it off, ride, put it back on. Except that the risk of infection shutting off TPN is pretty significant. And suddenly shutting off TPN can cause hypoglycemic shock.
We asked for a supervisor. They supervisor also turned us away. We were pretty mad. I convinced Brian we could work it out. We went to guest services.. they were too busy for us. I saw a supervisor leaving Guest Services and chased him down. He also didn’t have a ready solution for us. He said he’d need to call for someone. So we told him we were going to go catch a dolphin show and come back.
During the dolphin show, a lightning storm rolled in and essentially shut down the park. We gave up. We left. (Now I’ll never see Shamu.)
But it didn’t sit right. Earlier this year, the Oley Foundation (a non-profit devoted to tube feeding) held their annual conference blocks from SeaWorld and I knew that many families had turned that into a mini vacation. So I asked if others had run into similar problems. Unfortunately, the answer was yes. Many had been turned away from the kid rides with because of their TPN and other medical equipment.
So I wrote to SeaWorld. And I wrote to them again. And I sent them messages through Facebook. And eventually, a few weeks later, a manager wrote back and fairly generic and non-promissory reply, expressing regret that I was frustrated my visit hadn’t gone as expected. He also invited me to visit him on my next visit to the park to discuss accommodations.
That evoked a kind of lengthy reply from me. Of course I wasn’t going back to SeaWorld in person to discuss the problem. But the delay in reply made me even more certain that something needed to be fixed.
So I wrote a nice long e-mail. I explained tube feeding and its unique challenges, quoted the American Disabilities Act, and appealed for a conversation about how to improve the park’s policies towards patients who have to carry medical backpacks. I made an appeal to help make a better experience for others, not to make things right for our family, but for those who come after us.
I wasn’t getting far with e-mails. I wanted the conversation in writing. They didn’t. They gave me a phone number to call and I kept putting it off, then things got busy. And I didn’t have time to call him back. Until today. Today I had a good talk with the manager of Shamu’s Happy Harbor at SeaWorld Orlando. I wish I could say that they had revoked their no loose articles policy for medical backpacks. That didn’t happen. They did, however, say that my e-mails had prompted some conversations about improving park accommodations for tube-fed patients and using some common sense on a case-by-case and ride-by-ride basis to determine where it is and is not safe to ride with tube feeds running.
So, for those perhaps considering a trip to SeaWorld Orlando with TPN, enteral feeds or other medical equipment, here are some of the things you probably want to know.
1) You should stop in first thing at Guest Services and ask for a ride accommodation pass. This may take some time. But they’ll go through ride by ride and help you figure out what you can ride and give you a pass identifying you as a safe rider.
2) If you encounter a ride operator who says you can’t ride when you feel it would be safe to do so, you should ask for a manager. Please note, a manager, NOT a supervisor. Only a manager has the authority to override park policies.
3) Be ready with a plan of how you can secure your backpack during the ride.
4) Know that training in this area of medical need has not been a standard thing for ride operators. We talked about that a little today and I was promised they would improve training.
5) Know that this isn’t going to get you on all the rides. So, if you really aren’t devoted to the rides, plan to enjoy the animal shows and other experiences so you won’t be disappointed.
This wasn’t the big policy change I hoped it would be. I think a lawsuit probably would have been the only way to really force that and, to be honest, that is not my style. I prefer the “let’s talk together and work this out” approach. I was pleased, however, to find that my efforts at education and advocacy weren’t completely wasted. The manager I spoke to told me that just that week he’d bent park rules to allow a wheelchair with oxygen attached onto a carousel where previously they would have been forbidden by the letter-of-the-law. So one heart at least was perhaps touched, and that will affect conversations and training.. and maybe with time and some patient teaching from future visitors will make a difference.
I’ll share what I learned with Give Kids the World and in the groups that I participate in. Maybe if we all work together with the positive expectation that SeaWorld will live up to these promises, they will get more used to offering accommodations and fewer people with have the kind of disappointing experience we had.
Patrick Hoopes 