cerebal palsy

[foxy-in-sox]

Hello everyone
our daughter has mild cerebal palsy we are visting florida next march. Any tips about all the parks would be helpful. We are hoping to use her stroller when out there.
Thankyou
Foxy

 

[SueM in MN]

Well, you came to the right place. elcome to disABILITIES.
The first hint I have is to go to Guest Services in any of the parks and request a GUest Assisance Card that would allow you to have her stroller treated as a wheelchair. That way, you will be able to bring it into lines and buildings with you where strollers are not usually allowed.
For other hints/advice, it would be helpful to have a little more info. Things like how old she is, how mobile, limitations, what sorts of things she likes.

Have a great trip!

 

[foxy-in-sox]

Dear Sue
At the moment she is three we are planning our trip for 2005 to spend her 4th birthday in disneyland. She suffers with right sided weakness involving her right leg and right arm. She is a determined soul and will try to do things even sometimes when her condition wont let her. She can walk, but it is very slowly and she gets tired. She drags her leg which gets worse if she is tired. She does insist on trying to walk. Quite recently she has become incontinent of faeces, which is distressing for her, I try to help her by having frequent toilet trips. She does suffer from terrible muscle cramps at night if she uses her legs to much
On a good note she is forever happy and loving and adores everything to do with mickey mouse. She also adores belle from beauty and the beast. She knows all the disney films :
We are staying in a villa and have rented a car, so any advice about parking the car on the different theme parks will also be valued. Thankyou so much.
Foxy

 

[SueM in MN]

Thanks for the added info. I'm a little confused now though becasue in your first post, you said you were going to WDW and in the next, you said Disneyland. I'm a WDW expert (so my whole answer is WDW based), but have not been to DL in a long time.

Four years old is a good age, since she will still be small enough for you to lift her if you need to. My youngest DD is 18 yrs old now. She has CP (mixed type, spastic quad) and is still small enough to do some things, but I have fond memories of when she was little and we could get her on and off things much easier.
You probably need to play things by ear as far as how much walking she does, but keep in mind that the distances at WDW are immense (just around WS in Epcot is over a mile) and most 4 year olds without CP spend at least part of their time in a stroller.
To get into some of the ride cars is a long step up or down, so you will probably be lifting her in and out a lot of rides. Here's a link to Deb Wills site where she has pictures of ride cars. Most of the pictures don't have the whole car on, I think she was taking them more from the standpoint of how roomy the seats were for "Pooh-sized" people, but you can still get some idea. Here's a link to a thread on this Board about ride boarding that should be helpful (even though the questions were pertaining to adults).
For leg cramps and general tightness, when DD was little, there were a few things I did at the parks. One was sending her on the teacups with her dad (I can't do spinning rides myself). The spinning motion was great therapy. Another thing I did was sit down with her laying on my legs. Her head (face up) by my knees, her butt at my waist and her legs going straight up my chest. That was a great way to stretch. You can also go the First Aid in any of the parks and use one of their cots for stretching and ROM. We found doing those things helped prevent leg cramps later on.
The characters (especially the ones who are in costumes where you can see the person's actual face) are great with special needs kids. I don't know if they still do this, but Guest Services in each park used to have scheduleslisting the places and times for all the characters. Some of the less crowded character greetings are in places like the countries in Epcot. You should be able to find Cinderella, Belle and Beast at France sometime during your trip. Snow White and the Dwarves are found in Germany, Aladdin and Jasmine in Morocco.

For parking, if you have a handicapped parking permit, bring it along with you, especially if your stroller doesn't fold/unfold easily. The regular parking lots have trams to take people from the lot to the park entrance (strollers or wheelchairs need to be folded to go on the trams). The handicapped (they call it Medical) parking is close to the entrance at the Studio, but it's kind of a hike from Epcot and MK. When you bring your own car to MK, you still need to take the monorail or boat from the parking area to the actual park entrance. For that reason, I always suggest people who are staying on site take to the bus to MK. The bus leaves you off very close to the turnstiles.

For the stool problem, if you haven't already checked it out with your doctor, you might want to see if she actually has constipation. Some people get leakage of softer stool behind the hard stool and that's what makes the incontinence happen. Sometimes a bowel program of stool softeners, bulk medications or schedules of suppositories can help with the problem. To avoid leaking thru clothing, this is a link to a great product.

Ask as many more questions as you need or feel free to email or PM me (links at the bottom of my posts).

 

[pumpkinboy]

Originally posted by SueM in MN
snip...My youngest DD is 18 yrs old now. She has CP (mixed type, spastic quad) and is still small enough to do some things, but I have fond memories of when she was little and we could get her on and off things much easier...snip

Well Sue, I guess that's the reason I find your advice so useful; you have already lived thru the challenges our DS (also mixed type, spastic quad) faces. You're just 12 years beyond our 6 yr old, so we're following in your footsteps, ehm, I mean wheel treads perhaps. Our DS his love of the Characters (esp Mickey) and the fact that WDW is warm and very wheelchair friendly is why we keep going back and the main reason we bought into DVC (so we can do it affordably). I kinda worry about how it will work when he's say 20, and not little and cute ( tho he'll still be quite handsome as he has his Daddy's red hair ). He is treated like such royalty now.

Foxy-in-sox, also be sure to visit the little garden next to the castle where Belle does storytime. If you go way early, I am told that you can request that Belle's helpers pick your DD to help Belle tell the story (if your DD is not too shy to do so, that is).
By all means, get the GAC upon arrival at the beginning of your first park visit. The GAC with the stroller are going to be your best friends and save your DD from exhaustion (at least from walking). I concur with Sue on transport issues: if staying onsite, it is best to use Disney Transport whenever possible, as even the close "medical" parking still requires a tram or a monorail to get to the parks. Also, with Any 4 yr old, I recommend frequent breaks and lots of down-time, especially in the early afternoon. If you can swing it, a trip back to the hotel for a swim and a rest (and lunch since you're in a villa, and a good stretch from you parent PTs) will recharge those little batteries for the rest of the afternoon & evening, ensuring that she remains the charming child you know & love.

So much more to say, but Sue has covered most of it. CP is such a wide-ranging diagnosis, covering just a massive range of abilities (the very sharp, Harvard-educated Neonatologist who supervised our DS's care in the NICU early on had a CP diagnosis herself, giving her a dragging foot but not much else, after many years of PT & OT undoubtedly). Our DS on the other hand, communicates exclusively thru eye-contact and does not use any of his limbs well (yet).

Well, enough for today. Enjoy your visit.

 

[foxy-in-sox]

To both of you,

Thankyou both so much for your invaluable advice, this site is wonderful having had our dd recently diagnosed was a great trauma and your words have been informative and comforting.
We are truly looking so very forward to our holiday.
Sorry i do have another query Is it right that strollers are not allowed in disney quest??
Best wishes to both of you
foxy

 

[SueM in MN]

Sorry i do have another query Is it right that strollers are not allowed in disney quest??

I don't know for sure because we have never been there. I DO know that there are no large parking lots of strollers outside DisneyQuest, so if they are not allowed, they are somehow hiding the parking area.
In your case, the stroller would be a mobility device in place of a wheelchair for your DD since she has a disability that affects her ability to walk. Show them the GAC that allows you to use a stroller in lines at the parks and they should let you bring it in, even if strollers are not allowed inside. If you have any problem, ask to speak to a manager.

 

[foxy-in-sox]

We will do exactly that, the information was on a leaflet which my friend has given me, as she has just come back from there.

foxy

 

[jtjarvis]

Hi Foxy,
I read your posts with interest as I have a 6 1/2-yr-old son with mild CP. A right hemi, too (or has yours specifically been diagnosed w/ hemiparesis?) Anyway, his deals with spasticity. Oh, the leg cramps... absolutely heartbreaking aren't they!

Anyway, from your post it seems you've gotten your diagnosis fairly recently? We too didn't have one until Riley was 3 -- he's always compensated well. Right now, PT, serial casting and botox (and e-stem) have helped with his right toe walk-- his arm is going down with awareness (you know how they raise their little arms when they run, etc?)

Riley also went through a pretty terrible anti-potty training (!) phase with bad accidents etc. at around age 4 but was able to overcome it.

I wanted to drop you this note as kind of a little "cheerleading" thing! While, as a 3-yr-old newly diagnosed with CP, Riley fell down about every third step, now as a kindergartener he has become so skillful that no one even notices he has a mild disability. This not to brag -- we are so very fortunate at the mildness of this condition but he does work hard, and we obviously must stay on top of it with constant work.

We just returned from WDW and two full days at MK, and I was so proud that he basically ran around with us all day. By day 2 his hip hurt a little. But I think that MK magic was sufficient to give him a delayed realization!

Anyway, your posts just "rang a bell." Best wishes to you!

JT

 

[foxy-in-sox]

Dear JT
Hello, sorry i didnt reply earlier it has been a while since i have surfed on these boards. My dd has right sided hemiplegia it is mild. You were really right she does raise her right arm when trying to run. She gets tired very easily but stubborn she will always do it her way lol
Best wishes to you to, its always nice to talk to people who have similar problems
foxy

 

[zaksmom]

My son's first trip was when he was four and he is now 20 and in college. His diagnosis is mixed quadraplegia - he uses a wheelchair and does not stand or sit. He is quite verbal. He loves Disney and we love it because of the ease of the vacation.

Lots of breaks and not worrying if we see it all helped when he was young. There are lots of opportunities for children to participate in performances using percussion instruments, play a roll in a skit, dance with characters, play in fountains, collect stamps from CMs, etc. We took advantage of these when he was young rather than stand in long line. We also made sure to do the character breakfasts. The one at the Polynesian and at the Beach Club seemed less hectic. But that may have changed.

He doesn't perspire easily, so carrying those water-squirters or misty-mates really helped him not get so drained or dehydrated. We also took breaks at the first aid station. It is quiet and cool and less stimulating.

Asking questions in advance (which you are doing!) always made it easier. We always asked when and where a certain character would be when he was young - we could always be there when they "came-out" and have a little private time - with the help of the CMs.

Each year he wonders if the characters will stop interacting with him, will he stop getting those special magical moments. He always gets them. I think that the CMs respond to the interest and excitement of the children (any guests really) - they are very comfortable with children with physical disabilities in my opinion. Over the years, DS has been an assistant CM at MGM guiding the guests over a microphone in the 101 Dalmations behind the scenes, in the Lion KIng show parade, pulled the sword out of the stone twice, been chosen as a VPI to ride the Kilomanjaro Safari first in the AM, been chosen as an assistant to call the gorillas in a night, been chosen as a "performer" in the masquerade at Italy in Epcot and on and on.... Always every year, lots of character interaction - even after he started shaving! The magic continued. The only problem he has is the increasing number of attractions he cannot go on as we can no longer pick him up and put him in the car. But there are so many other things to do!

Have fun planning, but do plan. I'm sure you will have a great time.