introducing myself

[heavenleigh412]

Hello everyone
I just joined the board a little while ago, and spent some time reading through the back posts in this thread. It seems like my disability is quite different from the majority (no big surprise there, my condition is very rare)
I also noticed the majority of the posts concern children with disabilities.

Anyway, to give you a bit of information about me, I am a 33 year old single mom. I have a rare condition that affects more body systems than I care to explain (or anyone would care to hear about! ) but some of my problems are that I can not stand for periods of time , I dehydrate VERY quickly, will get extremely bradycardic or tachycardic for no reason at all and all of these things make me pass out... fast and with very little warning. I also suffer from severe short term memory loss .There are other componants to my condition, but I am trying not to bore anyone. Suffice it to say that my condition encompasses every system in the body.

My daughter, who I love more than life itself, has requested to go to Disney World for the 4th of July... I know I am letting myself in for HUGE problems!
We were there last June, and I got a GAC from guest relations,went with a wheelchair when I needed it, carried water EVERYWHERE and got one of those misting fans.
We are staying at the CBR from July 2 to July 10, does anyone know of any special requests I may need to make there?
We are on a meal plan, and got the tickets with the water parks and disney quest included.
We plan on doing cirque de soleil our first night there, and going very slow the other 7 days.
Can anyone offer any other advice for how to handle this vacation?

Thank you in advance for anything anyone can offer
Tara Dawn

 

[SueOKW]

I don't think I can help much, but I can say welcome!!!! Good luck with your trip - it will be VERY hot!!!!

Sue

 

[Cheshire Figment]

Hi, and welcome to disABILITIES. We do not concentrate on children, but often they are either the subject or, in your case, a child will be involved.

I would suggest seriously consider renting an ECV rather than a WC. This way you will not have to exert yourself.

 

[heavenleigh412]

I am thinking about one of those ecv's, but they are quite expensive, and I live on disability. Oh well, I guess I am off to put more money in the disney jar!!

 

[dclfun]

I would also say to put more money in the Disney jar for an ECV rental and to get one from an off-site vendor. While they are expensive, think of what you are paying for your trip which sounds like an 8-9 day package with all the bells and whistles during a peak time. Adding an ECV to the mix will be worth the extra money to ensure that the trip money you paid is well spent and that you enjoy your time vs. having a medical emergency. Also...welcome! I am a widowed adult with a severe disability as well ( ALS) so I do understand how challenging it is to travel with a medical condition while also being the only responsible adult. Kathy

 

[heavenleigh412]

thank you so much for the kind welcomes! I will definitely look into renting an ECV for our vacation... it seems so far away!
This trip to Disney is my daughter's reward for being so wonderful when my condition worsened and I had to stop working... we waited THREE years for my disability to be approved, and she was INCREDIBLE! (she will be 11 in April... so she was pretty young to be so good)
Our previous trips to Disney have been with my father, and there have always been major problems, so I want so badly for this trip to be perfect for her.

Tara Dawn

 

[SueM in MN]

There are a lot of adult posters with disabilities, but we see a lot of posts from parents because this may be one of their first big trips with a child with a disability. So, they have a lot of questions.
Many of the adults with disabilities have traveled quite a bit to other places and maybe don't have as many specific questions.
Glad to have you here.

 

[BroganMc]

thank you so much for the kind welcomes! I will definitely look into renting an ECV for our vacation... it seems so far away!
This trip to Disney is my daughter's reward for being so wonderful when my condition worsened and I had to stop working... we waited THREE years for my disability to be approved, and she was INCREDIBLE! (she will be 11 in April... so she was pretty young to be so good)
Our previous trips to Disney have been with my father, and there have always been major problems, so I want so badly for this trip to be perfect for her.

Tara Dawn

We just reserved an ECV for my dad (for use in March). Cost for one week was just under $200. That included delivery and pick-up to our resort.

Though it costs extra, it will be way worth it for you.

I am an adult disabled traveler (have had rheumatoid arthritis since I was 2 and am in my 30's now). My issues are mostly mobility related. Many rides I can not board without help from my party, and some do not allow enough leg room for me to sit. (My legs do not bend at 90 degree angles, I have contractures in all my joints, and find stepping into rides too difficult.)

My first trip to Disney was in 1977 when I was 8. My family carried me everywhere and I went on most of the rides at Magic Kingdom. When I finally went back 20 years later, they added 2 more parks and more rides than I can count. I went in a manual push chair and was toted around by family. I studied "The Unofficial Guide to Walt Disney World" and new all the rides by heart (chosing which I'd aim for). I also got copies of the Disability Guidebooks for each park. This is a fantastic book that details loading procedures, ride duration and describes the experience so you can foresee future problems. You can download copies on the web.

You're going at a very busy and hot time of the year so be prepared. Always carry a drink with you. [I use a power wheelchair now but take two bags with me: a Hobo purse on my joystick to carry things I must have at hand regularly (camera, wallet, watch, cellphone, autograph book, candy snack); and a backpack for hanging on m seat (carries things I might need such as rain poncho, t-shir/jacket, extra drink, snacks, sunscreen), I also have a cup holder for a drink bottle.] An ECV will give you a basket on front for the essentials but I think you're able to hang a backpack on the seat for extras.

Use FastPasses as much as possible. Start early every day you're park bound. By mid-day at Magic Kingdom, Fantasyland is a zoo even in the off season.

Put sunscreen on your legs and arms. They will get burnt sitting down as you ride. Park in the shade as much as possible.

Space your thrill rides with trips to the shows (Hall of Presidents, Country Bears, Tiki Room, etc.). Shows are air conditioned and make a welcome relief from the hot sun.

Consider making trips to parks just for the parades and fireworks, then spend your "park days" doing rides during these crowd events. You'll be able to enjoy setting up a spot for the big show (maybe with a little picnic) while others run around trying to get "one more ride in" before a big show. And rides are less crowded during parades and fireworks.

If you'd like a picture of your daughter beside a crowded exhibit, try asking someone in that crowd to take yours and your daughter's picture. If I do this, I find the crowd magically clears aside and wants me to have the best shot. Offer to do the same for others. Giving directions to the lost, sharing tips on rides, trading stories with strangers in line, sharing your table with other diners at crowded mealtimes ... all these help everyone enjoy the magic of Disney.

If you have any concerns about your room or anything else you're unsure of, call the Concierge at your hotel. They tend to be very helpful organizing things for you. Talk to the rooms manager if you need to assure you have a certain type of accomodation. (I need a roll-in shower, so I always call the hotel ahead and double check a week or so before check-in.)

Expect at some point things just won't work out as you planned. Life has already taught us that. So endure what you must, or switch to Plan B. (I always have 2 or 3 alternative things to do if a ride breaks down, has a really long wait time, or the weather is crappy.) Some of the best experiences are found when you least expect it. (I got pushed out of a Cinderella Birthday Show due to a moblike crowd, but ended up wandering into a private audience with Cinderella, Sleeping beauty and Pearla Mouse with my 3 yr old niece.)

Most of all remember, there's no crying in Disney World.

I guarantee you'll love it there. And what will make it magical is being with your precious little girl.

J

 

[heavenleigh412]

I hope no one thought I meant that offensively!
It was just an observation I made after reading back through 4 pages of posts...
I only made mention of it because I wasn't sure if anyone would be able to help me with being the disabled adult travelling with a well child!
I don't think I would have any problem going slow for my daughter if it was neccessary, my problem is asking her to slow down for ME in the most magical place on earth!
Tara Dawn
BTW I am glad to be here, you all seem like a wonderful bunch!

 

[JCTigger]

Just a word of caution since your daughter want to be at disney for 4th of July if you intend on going to a park that day specially magic kindgom plan on being there at least an hour before the park opens... once they fill to compacity theres nothing you can do... and as crowded as it will be... dont leave stay for the fireworks because that is the day I personally think the fire works are the best its a 360 degree fireworks show and its amazing... heres a little hint since you get de-hydrated really quickly and warm waters nasty... rent a mini fridge and bring like 2 bottles of water with you and they also sell water bottle "coolers" (its basically an insulated lunch bag in the shape of a water bottle)... freeze some of the waters and but the rest in the reg fridge... then take one frozen one put it in the "cooler" and also take one of the reg cold ones youll have a cold one already but once it runs out since the other bottle was frozen itll still be cold even half way thru the day... then jsut keep refilling them... I love disney but a bottle of water is so darn expensive.. id just as soon bring a 6 pack of water with me for the same price as one bottle i could buy in the parks....

I hope you have a fun vacation!!

 

[heavenleigh412]

BroganMc-
Thank you very much for your suggestions! May I ask where you rented the ECV from?
I have the Disabilities guidebook and found it very helpful during our last trip to Disney (June 2004)
Seeing as I am planning from now, I will probably have 4 or 5 different plans in place!
We downloaded the Magical Gatherings Planner from the disney site, and have been building an itenerary in it already! Basically I am using it to remind me when I need to call to book different things (like character dining) for right now...

I have found that some people are very helpful to disabled people and others are well... to put it nicely not so helpful! I rented a wheelchair our last visit, and one person got very annoyed that I was using a wheelchair that could have been used for an actual disabled person when I got up and walked for a bit with it! (my daughter wanted to walk up Main street together holding hands until we reached the castle... and it was early, so I figured I could manage it)

I know we will have a great time, I just want to get as many details as I can manage settled ahead of time, so we can relax and enjoy! This is our first time without the rest of the family rushing us through everything (and yelling at us that we take too long) ... we have 8 days to accomplish the things we have never seen and done... we don't have a long list, but there are certain magical things we always felt we missed out on (Like breakfast at Cinderella's Castle and the water parks, and meeting whatever characters we can find ... my daughter doesn't like anything more adventurous than Dumbo, so the rides are not that much of a concern, but she does want to see shows!)

JCTigger-
I have the water cooler bags, and I love them! I actually started with them when my daughter was an infant, they were great for baby bottles!
Last trip I forgot to bring any, so I bought a bottle of water my first day, and kept the bottle the 4 days we were there, refilled all day and on ice at night.

Tara Dawn

 

[SueM in MN]

If you go to the disABILITIES FAQs thread near the top of this board, you will find information and links to the companies that have been recommended by DIS posters for renting wheelchairs and ecvs.

 

[Cheshire Figment]

I have found that some people are very helpful to disabled people and others are well... to put it nicely not so helpful! I rented a wheelchair our last visit, and one person got very annoyed that I was using a wheelchair that could have been used for an actual disabled person when I got up and walked for a bit with it! (my daughter wanted to walk up Main street together holding hands until we reached the castle... and it was early, so I figured I could manage it)

I have on occasion had people ask me inappropriate questions. My response has been to sweetly tell them (in a semi-nasty tone of voice) tat I would be more than happy to give them my ECV if they would also take all my disabilities.

Also, as Sue says, look at the "disABILITIES FAQ" which is the 4th item in the Forum for lots of information including rental sources.

 

[mommie2angels]

Just wanted to welcome you heavenleigh412. Hope you and your daughter have a magical time!

DCLfun, just wanted to send you a cyber hug. How are you doing with your ALS?

Good answer Chesire Figment!

 

[BroganMc]

BroganMc-
Thank you very much for your suggestions! May I ask where you rented the ECV from?
Tara Dawn

My family has Marriott vacation club memberships. We're staying at the Grande Vista. (And driving down from Maryland.) The concierge hooked us up with a rental company (Florida Mobility, I believe).

I've heard Care Medical and Walker Mobility mentioned most frequently online. A number of rental companies are in this business. Many grandparents visiting with grandkids.

I have an adapted minivan to accomodate my power chair (lowered floor, folding ramp, cleared out second row of seats). So we'll be transporting my dad's rental scooter and my chair in the van. (I transfer and ride up front.)

It'll probably take a little negotiating here and there, but we're looking forward to it. And at last I won't have to keep slowing down so he can catch up.

Once you have a power scooter, you'll be sprinting with the best of them. They go about 4-5mph. (Not that you can do that speed in a crowd.)

Ignore the rude neophytes you may encounter. I realize when you're not used to being chairbound it seems like everyone is staring at you. Sometimes they're really just staring at your shirt, or your smile. (I've had a few people think I was nuts for singing "It's A Small World" as I happily roamed around a crowded FantasyLand solo.) The talk of wheelchair abuse I think is far more prevelant online than in reality. The worst you will encounter is some little kid darting in front of you (testing your braking skills) or parents too busy awing at the castle to notice where they're pushing their baby's stroller.

Oh, and you'll be very popular with kids. They just love motorized gadgets and will meet you at eye level, encouraging a smile, hello or question. (My dad's first experience in a scooter and a 4 yr old girl struck up a conversation with him by asking "What's your name?" No way would she have looked twice at him if he was standing.)

Remember, people pay $50 to ride a two-wheeled motorized device for 2 hours at Epcot... see Segway Around the World Tour. Your ride is unlimited duration with no wait times.

Enjoy!
J