Share your WDW experience with a child with CP

[m!ssemmx0]

I did; but be warned, you do get wet

 

[alsligh]

Joining the party a little late, but I wanted to add my experience with taking my DD to WDW. We took her a few weeks before her 3rd birthday in 2005. I got the GAC to use the stroller as a wheelchair and it was, by and large, a good experience. Occasionally, a CM would try to steer us to the stroller areas because she looks like a regular kid (it was in December, so she mostly wore long pants and her AFO's didn't show), but as soon as we flashed our GAC they would let us through with a smile. A lot of the MK and EPCOT accessible lines were not mainstreamed, a function of the age of the parks, I'm sure, so at times it wasn't intuitive which way to go, but it wasn't bad. I was very pleased that WDW was not only handicap-accessible, but handicap-FRIENDLY - a rarity. I don't know if we got any ugly looks from guests, and I don't care. I've gotten them at Wal-Mart with my handicap hangtag before, so I can handle it. Some people are just completely oblivious, no matter what - a friend of mine's dying daughter got a trip to WDW through Make-a-Wish and got an extra minute or two with Mickey before his break. When the CM handler told some other people that walked up that they couldn't see Mickey, they proclaimed extremely loudly how UNFAIR it was that my friend's family got to spend time with Mickey. WTH?!?!? "Unfair" is watching your child die of a brain tumor, NOT missing out on Mickey. But I digress...

I am taking DD by myself next week (she is 5 now). She can walk now, unlike last time, although she doesn't have the speed or stamina to walk the parks. Fortunately, she is tiny and can still ride in an umbrella stroller. I will be able to lift her where required, although I will avoid it whenever possible just to save my back. WDW will be an AFO-free zone for us. It's just too hot and she is able to walk without them. I bought her some of the shoes that look like tennis shoes but are made for going in water, etc. They will be a little more supportive than Crocs or sandals but it won't be a big deal if they get wet on Kali or Splash Mtn.

And to add my comments on the SDR - DD had a rhizotomy in January 2006 (just a few weeks after the last WDW trip). It has been WONDERFUL and I am so glad that we did it, even though it was an agonizing decision. It is not a cure-all, but looking back I know that we have made a lot of progress that would not have been possible, otherwise. DD starts kindergarten in August and she will be able to do so without an aide or any assistive devices - that would never have been possible without the SDR.

Peace and joy,
Andi

 

[IkeandMike]

Yes the SDR was an agonizing decision for us too, but we are so glad that we did it. The six weeks he spent in the hospital seem like a distant memory now and I am so thankful for the whole experience. Not that I would ever want my son to have CP, but I can't help but think how I have met so many wonderful therapists over the years and wonderful doctors, I just try to find the grace in it all. I think of all the little things I would be missing if every accomplishment wasn't such a big deal. Life just never becomes stale or repetative and I thank Lil' Stephen for bringing that into our lives.

Back on topic, I never bothered to get the GAC for Stephen, but now that I have read that you can use the stroller as a wheelchair and that he wouldn't have to stand in line, but can sit, I might. We don't really need the "go to the straight of the line" feature though. Can you use the stroller and stand in line like everyone else? Also, my son likes to be like everyone else, he might not like that he gets to sit while others arn't.

 

[IkeandMike]

Quick question. Does your insurance cover the hippotherapy. I would like to do this for my son, however all we have in our area are regular lessons, I am thinking of signing him up for at least that. Even without the therapy part, just riding and sitting in that position I think will help.

 

[alsligh]

I think of all the little things I would be missing if every accomplishment wasn't such a big deal. Life just never becomes stale or repetative and I thank Lil' Stephen for bringing that into our lives.

I know exactly what you mean. It is really tough sometimes (case in point - we attended my niece's 1st birthday party this weekend, and she is very close to walking...that was hard to see), but I know that I get to experience a lot of joy in the small things that other people don't always appreciate. My daughter has recently entered a couple of kids' races at running events I've been in, and she LOVES IT. I am so proud to see my last-place kid with that beaming smile on her face. She is actually doing the 200-yd kids' race this weekend right after I run the Minnie 15K. We have some friends who will be in town, so she will have quite the cheering section for last place!

Back on topic, I never bothered to get the GAC for Stephen, but now that I have read that you can use the stroller as a wheelchair and that he wouldn't have to stand in line, but can sit, I might. We don't really need the "go to the straight of the line" feature though. Can you use the stroller and stand in line like everyone else? Also, my son likes to be like everyone else, he might not like that he gets to sit while others arn't.

It really depends on where you are. Some of the attractions, particularly in EPCOT and MK, still have accessible entrances that were added after-the-fact so they don't have much choice other than sending them to the front. They are trying to mainstream as much as possible, however, which I think is wonderful - I always felt like I was taking advantage of the system when we got sent through a "shortcut." The one place I will not do the wheelchair option again was Pirates (unless it has changed), because we had to wait forever for the CM's to bring the wheelchair down to us after the ride.

 

[pinkmintz]

My daughter (13) has Spastic Paraplegia. She wears AFO's and uses forearm canes, she can walk short distances but tires very easily so her wheelchair is a must. She cannot stand for long periods of time without the use of her AFO's. When we went to WDW in November 2006 she tried on the first day there to wear her AFO's but we had a lot of problems. certain rides she had a hard time getting into because with her AFO's her feet will not bend. We also found that when we went on the water rides her feet, socks, and sneakers were soaked. And as we all know wet feet and AFO's are not a good mix! The next day we decided to just try her sandals.... What a difference. She had no problem getting into the rides that she had a hard time with the day before, the only ride she had difficulty getting out of was the pirates of the caribean. When she is not wearing her AFO's she does not have alot of leg strength or stability but her determination makes up for it. We had no problem with using the wheelchair accessible entrances on the rides so she could wait her turn in her chair and I did not find with her that she was any more tired at the end of the day with or without her AFO's all I know was that she was a lot less frustrated without them so we had a lot more fun. We are heading back to WDW this December and plan not to use her AFO's at the parks. Hope this helps and have a blast

 

[SueM in MN]

It really depends on where you are. Some of the attractions, particularly in EPCOT and MK, still have accessible entrances that were added after-the-fact so they don't have much choice other than sending them to the front. They are trying to mainstream as much as possible, however, which I think is wonderful - I always felt like I was taking advantage of the system when we got sent through a "shortcut." The one place I will not do the wheelchair option again was Pirates (unless it has changed), because we had to wait forever for the CM's to bring the wheelchair down to us after the ride.

This is a list of the attractions with "Mainstream Lines". These are the ones where the 'regular' line is considered to be accessible, so people using wheelchairs, etc stay in the same line as everyone else.

Attractions providing mainstream queue access include:
Magic Kingdom® Park
• Ariel's Grotto
• Astro Orbiter
• Buzz Lightyear's Space Ranger Spin
• Donald's Boat
• Judge's Tent
• Mickey's Country House
• Mickey's PhilharMagic
• Minnie's Country House
• Monsters, Inc. Laugh Floor
• Pirates of the Caribbean
• Space Mountain®
• Splash Mountain®
• Stitch's Great Escape!™
• "The Enchanted Tiki Room Under New Management"
• The Hall of Presidents
• The Magic Carpets of Aladdin
• The Many Adventures of Winnie the Pooh
• Tomorrowland® Indy Speedway
• Toontown Hall of Fame
• Walt Disney's Carousel of Progress (seasonal)
Epcot®
• FUTURE WORLD
• Imagination!: All Attractions
• Innoventions East
• Innoventions West
• Mission: SPACE
• Test Track
• The Seas with Nemo & Friends: All Attractions
• The Land: All Attractions
• Universe of Energy: "Ellen's Energy Adventure"
• Wonders of Life: All Attractions (seasonal)
•
•
• WORLD SHOWCASE
• China: "Reflections of China"
• France: "Impressions de France"
• FriendShip Boats
• Norway: Maelstrom
• The American Adventure: "The American Adventure"
Disney's Hollywood Studios™
• Disney's Hollywood Studios™ Backlot Tour
• Fantasmic!
• Lights, Motors, Action!™ Extreme Stunt Show
• Muppet*Vision 3D
• Playhouse Disney - Live On Stage!
• Rock 'n' Roller Coaster® Starring Aerosmith
• Sounds Dangerous - Starring Drew Carey
• Star Tours
• The Great Movie Ride
• The Magic of Disney Animation
• "The Twilight Zone Tower of Terror™"
• *Voyage of the Little Mermaid
• Walt Disney: One Man's Dream
Disney's Animal Kingdom® Theme Park
• Caravan Stage: "Flights of Wonder"
• DINOSAUR
• Expedition Everest™
• Finding Nemo - The Musical
• Grandmother Willow's Grove: "Pocahontas and Her forest friends"
• It's Tough To Be A Bug
• Kali River Rapids
• Kilimanjaro Safaris
• Lion King Theater: "Festival of the Lion King"
• Maharajah Jungle Trek
• Primeval Whirl
• The Boneyard
• TriceraTop Spin

 

[pinkmintz]

So far I've been very reluctant for my son to have any major surgery. He's done the botox and casting multiple times, and has been evaluated for the "lengthening" surgery, but I really would like to hold off surgery as log as possible. I'm reluctant cause the surgery is permanent, not everyone has the same results, the recovery would be rought, and as he grows more, he'll likely need more surgery. So my thought is to hold it off as long as possible and use therapies as much as my son can handle. He does PT 2 times a week with us working a specially designed exercise and stretching routine with him nightly, plus he does hydrotherapy and hippotherapy. I know it seems like alot but he's been doing this level of interventions since he was a baby. The doctors originally predicted he'd been in a wheelchair and not able to walk.

All the doctors and info can be really tough to navigate, but I try to take all the info, then research it more and pray about it and make the best decisions we can.

I think because my son has to work so hard throughout the year, we try to make out Disney trip as special as possible for him. I'd like for just that week for him to get to relax and not worry about his CP. I think I'm leaning towards him not taking his AFOs.

If you don't mind me asking what tendons do the doctors want to lenghten? I am only asking this because you sound like you were in the same boat as we were.

 

[suzybeezy]

If you don't mind me asking what tendons do the doctors want to lenghten? I am only asking this because you sound like you were in the same boat as we were.

I'm not sure of the muscle names, but I believe it was the inner leg muscles and behind his heels and the muscles right under his buttocks. The biggest thing that makes me reluctant is he's destined to be very tall. In my family, everyone is over 6 ft (and most of the men range from 6'3" to 6'8"). So I'm thinkin' with him being only 8, it may be best to wait as long as possible, cause he has alot of growing still to do. Also I'm majorly worried about the recovery, as they said he'd have to go to a special rehab place afterwards for 6-8 weeks and be cast up to his hips with a metal bar between his legs. He's been to the Shriner's Hospital for a Gait Study and their recommendation is the surgery, but my doctor feels he's borderline and may be able to avoid it with all the other interventions he gets. He did caution in the next couple years it may be unavoidable.

Quick question. Does your insurance cover the hippotherapy. I would like to do this for my son, however all we have in our area are regular lessons, I am thinking of signing him up for at least that. Even without the therapy part, just riding and sitting in that position I think will help.

IkeandMike, we are very fortunate as the hippotherapy my son participates in is offered by a couple (the wife is a RN and the husband is a therapist). They generously offer it as a free program, as they know the huge benefit there is to children with disabilities. I have priced similiar programs in the area and they can be pricey. Before finding this free program, I had ask my doctor about whether insurance may cover it, he said its possible, similiar to water therapy, if a doctor writes as letter explaining why its necessary.

 

[pinkmintz]

My daughter was 8 when she had her first tendon lengthening. The doctors here in Canada had spoke about it when she was only 3. They had strongly suggested it at 5. There was a lot of talk back and forth between the doctors and the rehab center where she went for physio. Doctors wanted it and the rehab said that with the lack of muscle tone it would make her worse. We tended to believe the rehab people because they saw her on a daily basis. It is a very hard decision for a family to make. We didn't want to do something that will worsen the condition but there was a chance that it would make her life a little easier. As she grew she had gotten taller but her tendons stayed short. She was having problems fitting into her AFO's because her heel cords were so tight that she was walking on her tip toes. Her hamstring tendons behind her knees were so tight that she could not stand straight. By the time she was 8 she was in her wheelchair pretty much full time. She could still walk a little but with a walker and great difficulty. That's when we decided we would go ahead and chance the surgery. They lengthened the tendons behind both her knees and they lengthened both her heel cords. 6 weeks in casts and a stay at rehab were next. She had to learn to walk all over again. But the transformation was amazing!!! she was so happy, It was well worth it. She needed to have her left heel cord lengthened again at the age of 10 and she needs to have her right heel cord done next spring.She will be 14. The cords behind her knees stayed good and they won't have to be done again. The second surgery was a lot easier than the first.(no rehab stay) She now can walk with forearm canes and AFO's, her muscle tone and strenghth still isn't great but she is very determined. It is a very tough and personal decision to make and I wish you luck in anything that you decide. Hope this helps.

 

[twinmum]

Re: Hippotherapy - This is a Canadian answer, so not sure if it will apply. Our insurance company paid for hippotherapy under my hubby's private health plan (pays for drugs and other expenses not covered by our universal government healthcare) - but this was because it was being delivered by a registered physiotherapist, as prescribed by his developmental pediatrician. Would this work?

 

[IkeandMike]

You guys are a wealth of information. Thank you all so much for answering all my questions.

 

[amesv]

Hi there...We are planning our 2nd family vacation to WDW this October. My oldest son is 14 and has CP with moderate spastic quadriplegia. He uses a walker at home and at school but will need a chair at WDW. We went 4 years ago and really had a pretty easy time navigating the parks. It helped that he was small enough to lift. Now he's 120 pounds of muscle so I'm a bit more concerned. Luckily, we are traveling with my Sister and BIL (with their 2 boys) and my parents...so there will be 2 back-up men to help.

I thought I'd jump right in and share some photos from our last trip...

1st night at DTD. Loved the Lego store and dancing on the boardwalk. Here are DS #1, Dathan...DH, Nick...and DS#2, Cole (who was 3). It was pretty crowded but we managed to get the chair through just fine.

On the monorail the next morning...headed to MK!

Our 1st character sighting...it seemed that the characters really flocked to Dathan. I'm sure they are trained to show extra attention to Special Needs children. Honestly, at 10, Dathan felt far too "cool " for the attention , but Cole sure liked it!

Me and my big guy having lunch and cooling off! I really recommend indoor places if you have lunch in the park. It helped to cool off and because Dathan's seizure meds cause increased sun sensitivity, it was good to get out of the Florida sun for a bit. He needed to dry off (sweat, yuck!) to apply more sunscreen.

The Buzz Lightyear ride was new that year and was a family favorite. We got lucky and were able to walk right on several times with no wait.

More in a minute....

Amy

Amy

 

[amesv]

MGM on day 2. I was pleasantly surprised. I didn't think there would be enough stuff that both boys liked.

The Back Lot Tour was fun and interesting.

Dathan and I kicked hiney at Who Wants To Be a Millionaire.

Epcot on Day 3. We ditched little brother for a bit (yay for grandparents!) so Dathan could ride some "big" rides with DH and me. Test Track was a big hit!

Dathan's favorite treat...giant pretzels, mmmmmmmmm.

I liked that some of the attractions had direct wheelchair access so he didnt have to transfer at all.

Little Brother's back...I think that was the boat ride in Mexico. Easy access there too.

Animal Kingdom Day 4. I didn't take many pics of the kids for some reason...just lots of animals (go figure? lol) . My little guy looks like he's on Safari and Dathan is soaked to the skin (thanks to Kali River Rapids and a huge wave).

MNSSHP...way fun! Dathan was a cool biker dude and some of the cast members "flirted" a bit with him. He didn't mind that a bit.

Last pic...and one of my favorites from the trip.
Thanks for looking!

 

[MagiKitty]

Thanks for sharing your pictures! Your family is gorgeous and it looks like you had a great time! Have fun planning your October trip!

 

[suzybeezy]

amesv, love all the great pics - especially the one of your son as a biker - so cool! Thanks for sharing.

I'll share some pics from our last trip (last April).

We drove down from Pittsburgh and had to stop at Daytona Beach before going to our hotel at Disney. Here's a picture of my four kiddos: Josh 18, Janie 14, Zach 7 and Danny 6.

This is my son Zach, at Animal Kingdom. Last year we chose for him to wear his leg splints, so his legs wouldn't fatigue as easily. But this year we're leaning towards leaving the splints at home. Guess we'll play it by ear.

Zach and Danny sippin' some Beverly at Epcot.

On the Streets of America my hubby, Janie, Zach and Danny.

I love this picture from the Backlot Tour.

Love Eyeore!

All four kids on Cinderella Carousel. I couldn't believe I got my eldest to ride it, let alone take a picture.

 

[amesv]

love your pics Suzy! Dathan wears AFOs too, but it was just too hot. He doesn't walk independently so we were fine without them. His are mostly to correct his gait. I made him wear them to walk around the hotel with his walker each evening so he didn't get too tight.

 

[MarieS]

Amesv and Suzybeezy--

Love your photos! Thanks for sharing them!