Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Wednesday, September 11, 2013

Planning Disney with a child with special needs

Like I said before,our trip to Disney was wonderful. We all had an amazing time, but I have never made so many lists in all my life as I did trying to get ready for this vacation.  I have always been a planner, but with Abby, my lists take on a whole new level.  The last thing I want to happen is to run out of seizure meds in Orlando, or for her to have a seizure in the park & not have a change of clothes.  I even made a list of things to pack in the bag to take to the park once we got to Disney.  I know I'm not alone in the planning and packing frenzy that comes with taking a child with special needs anywhere, let alone to a theme park.  I practically fill my trunk just to go to the zoo.  I know there are a million websites with Disney tips, but I thought I would share a few things that we thought were useful and that may help another family plan a little easier.

When we went to Orlando, the temperature was about 90 degrees at the hottest time of the day.  There were rain showers that cooled it down, but it did get pretty hot at times.  Abby doesn't tolerate heat well, so we packed a few things to help her cool down.  This little fan was perfect on the days when it was overcast, but still humid.  It also worked well in the shade.  In the sun, however, it was just blowing warm air in her face.  I could put ice water in it and mist her with it, but we mostly just used the fan.

We put the fan in this mounted cup holder.  Its purpose is to allow her to get a drink without help, but it worked great to hold the fan as well.  She uses one that is similar at our dinner table, but this is the only one that I have found to be strong enough to hold a cup at the right level on her wheelchair while the chair is moving.  She drinks a lot, so its nice for her to be able to do it independently.  We even put it on her carseat on the road trip.  It was expensive, but worth every penny.

Another thing that kept her cool was this cooling towel. When wet, the towel stays cool until it dries. Vendors were happy to let us use their ice water to dampen it, and then it kept her legs protected from the sun, and cooled down. 

If possible, I also highly recommend bringing a few of these.  Squeeze them in your trunk if you have to.  Having more adults than children is always to good thing.  It was great that Abby could relax with my parents while Wes and I rode a few rides with Logan.  I'm glad we got to share this experience with my parents. Logan and Abby loved having them join us.  In fact, we were only an hour into our trip home when Logan started crying that he missed them.  Thanks, mom & dad.  We wouldn't have had nearly as much fun without you guys!   

While researching our trip, I learned quickly that we would need to go to the guest relations office and get a guest assistance card.  This card told the people at the entrance to the ride two things, that her wheelchair was a wheelchair and the she can use an alternate entrance when available.  I don't really know which rides provide an alternate entrance other than the wheelchair accessible entrance.  Every ride we entered used the fast pass entrance as the accessible entrance for wheelchairs.  For us, the useful part of the card was to identify her wheelchair.  For some reason, everyone assumed she was in a stroller.  I think lots of big kids who typically would walk use strollers at Disney, so they're used to big kids in strollers, and don't consider that they could be in a wheelchair.  After a few days, one of the workers suggested that we get a red tag on our "stroller" that said it could be used as a wheelchair and then we wouldn't have to search for the card at every ride.  Even though I was tempted to argue that I didn't need that because it WAS a wheelchair, I am thankful for her advice.  Once we got the red tag that indicated that our "stroller" was to be used as a wheelchair, we no longer had to show the card or explain that it was a wheelchair. As soon as the workers saw the red tag on her chair, they showed us where to enter.  If you have a wheelchair that looks anything like a stroller, even if it says "pediatric wheelchair" and has footplates, go ahead and get the red tag put on it at guest relations.  It will save you from having to explain or keeping track of the the GAC card.  We didn't use the GAC card at all after we got the tag, but maybe some rides had an alternate entrance that we didn't use?  I'm thinking that an alternate (air conditioned) entrance might be used if the accessible line was long and outdoors?  While we were there, the lines were short, so this wasn't an issue. I'm thinking in most circumstances the tag would do the same thing. 

If you have a child who gets overstimulated, then you are probably like me and have a pair of headphones in your bag all the time.  If you don't, you may want to invest in some for Disney.  It gets loud.  The restaurants are loud.  The parades are loud.  The rides are loud.  The fireworks are loud.  If I had earplugs, I would have used them myself.  It can be a bit much, so be prepared. 

It takes a lot of planning to pull it off, but it is SO worth it! If you're planning a trip soon, I hope this gave you a few ideas.  

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