child going to dis with spinabifada

[4mickey2]

does anyone have any special things i could pass along to a friends family that is going to disneyworld in april. their oldest child is around 10 and has spinabifida (not sure of spelling). she is in a wheelchair as she has very little use of her muscles.

i did tell them to take her to the barber shop on main st to have pixie dust or glow in the dark stuff put in their hair. but, i was wondering what other small things are there for her to enjoy.

 

[LindsayDunn228]

I don't have spina bifida, but am a paraplegic and know some people who do have it. Being she uses a wheelchair, she can do NUMEROUS things. Have your friends check out the Stickies at the top of the forum. It will show what rides are wheelchair accessible.

 

[OneLittleSpark]

She doesn't just need to stick to the small things; there are loads of BIG things she can enjoy too ! Can she transfer from the wheelchair (with assistance from her family if necessary), do you know? If she can, this opens up more rides to her, but even if she can't there's loads of things she can do.

The disABILITIES FAQ can be found here:
http://www.disboards.com/showthread.php?t=595713
and as Lindsay said, this is a great place to start.

This thread, has got lots of information about how each ride is boarded:
http://disboards.com/showthread.php?t=818020

If she can't transfer, this recent thread may be of use:
http://www.disboards.com/showthread.php?t=1385388

If she can, this one on stopping moving walkways could be of use:
http://www.disboards.com/showthread.php?threadid=273092&perpage=15

And this thread has information specific for children in wheelchairs (though does have information suitable for any wheelchair users):
http://www.disboards.com/showthread.php?t=1009681
See post #5 by eternaldisneyfan in particular.


Well, there's a whole heap of reading to get you started . If you or your friends have any more questions, just give us a shout and we'll do our best to answer them!

Hope they have a great holiday!

 

[MidgeD79]

You spelled spina bifida right, but it is two words. You may want to suggest that the family bring ear plugs/headphones to lessen the loud noises. My son was very sensative to loud noises and our first trip to WDW was a learning experience. I'm sure they will have a magical trip!

 

[terri01p]

You spelled spina bifida right, but it is two words. You may want to suggest that the family bring ear plugs/headphones to lessen the loud noises. My son was very sensative to loud noises and our first trip to WDW was a learning experience. I'm sure they will have a magical trip!

I have to second this, my dd has spina bifida and the noise can be a bit much at times. It just depends on the level of spina bifida the child has as to alot of what they can do...my dd can not transfer out of her chair, so as for her she is very limited as to what she can personal do, our favorite thing is the parade, that's a must do for us, my best advice is just tell them to take things slow and easy, enjoy. My dd has a hard time with the fireworks, I guess the noise, not sure what exactly it is that bugs her out so.

 

[Michigan]

I have 2 daughters ages 9 & 17 with spina bifida. Both are paralyzed from the hips down. The only things my oldest one really can't do is the tea cups because she can't get herself up high enough to get through the opening and test track because of the height to get back out.

We use the wheelchair car when ever they have one. The youngest wheels in and transfers over onto the companion seat then I pull her chair out and the oldest one rides in her chair. For rides that don't have wheelchair cars the 9 year old is still light enough I carry her onto the ride and as long as the ride can be stopped the oldest one transfers onto a regular seat.

I don't know if she wheels herself or not all the time but my girls do and have pushed themselves through Disney with only help up the hill at AK since they were 3. I always have to laugh at the people on the family boards getting strollers for their 5 and up kids because at 3 mine were wheeling themselves the entire time in the parks.

Spina Bifida kids do have problems with noise so ear plugs are a must for the fireworks. Also the 3D movies are very loud.

Cindy

This is a picture of my girls at the Pirate and Princess Party on Feb 15th.

 

[mcco5543]

ITA with the previous poster. I am a 27 year old woman with Spina Bifida (p.s. i'm INCREDIBLY impressed you can spell it, most people have never even HEARD of it!)

I do have a completely able body from the waist up however I do not LIKE being out of my chair becuase of severe issues with balance, hip displacement etc... I did transfer for the rides i really wanted to go on that couldn't handle my chair but 98 percent of the rides I WANTED to go on, let me stay in my chair anyway.

i also have restricitons with how much I can jerk my body around so no roller coasters or "violent" rides for me. however Disney makes it really clear at each Ride entrance how "jerky" the ride might be. you can also watch a lot of rides happen before you go on them to decide for yourself. I had an AMAZING TIME there.

Also as a point of interest, I HATE when people make a "special scene" over me and do things like put me up front in front of everone or pull me out of a regular line (which i'm perfectly happy to stay in thanks). But Disney Cast Members are SO SO SO sensitive about helping make your experience as a wheelchair user do-able, and easier without EVER drawing attention to why (your disability). It truly is the happiest most magical place on earth! Disney truly understands that EVERYONE has differeing abilities. And has prepared completely for all of them. have a wonderful, busy, relaxing funfilled time!!

 

[4mickey2]

thanks for the info. i know her daughter has a back brace, too. so, she really has some limits on what she can do. but, i will let them know.

 

[OneLittleSpark]

I'm sure there'll still be loads of things she can do, but obviously not knowing her and her limitations myself, I can't offer too much precise help. Do your friends have a DIS account? Because if they do (or would like to set one up) we'd be happy to answer any questions they may have (as they'll have more specific information on their daughter's limits than you could know).

I'd just like to send you a big thumbs up for coming over here to ask for help on their behalf, you're a good friend !

 

[Michigan]

thanks for the info. i know her daughter has a back brace, too. so, she really has some limits on what she can do. but, i will let them know.

The brace won't limit her, it's call a TLSO (thoracolumbosacral orthosis) jacket and stops her spine from curving more then it already has. So it's not like a brace someone with back problems would have that would stop them from riding some rides.

 

[SueM in MN]

however Disney makes it really clear at each Ride entrance how "jerky" the ride might be. you can also watch a lot of rides happen before you go on them to decide for yourself.

You can download a copy of the official Guidebook for Guests with Disabilities for each park from the WDW website (there is a link to get them in the disABILITIES FAQs, located near the top of this board). The Guidebooks are very basic, but better than nothing.

The park maps also have some icons that are helpful.
- a red triangle means there are some warnings for people with health conditions
- a wheelchair icon means the line and the attraction are completely wheelchair and ECV accessible
- a stick person leaving their ECV and going toward a wheelchair means the attraction is wheelchair, but not ECV accessible
- a stick person standing or getting out of a wheelchair means that you must transfer to a ride vehicle

The icons are on the park maps and also on signs at the entrance to the queue for each attraction.