Share your WDW experience with a child with CP

[suzybeezy]

My son is 8 years old, and has moderate spastic diplegia. I'd like to hear experiences in WDW from other families who have a child with CP for both information and for support.

[SueM in MN]

It would be helpful if you could narrow things down a bit.
What do you want to know? Does your child use a wheelchair normally? Walker? AFOs? A little more about him would be helpful.
Do you want information about resorts or just the parks?
Are you interested in any particular park? Any particular rides?

I have a 22 yr old DD with CP who has been coming to WDW since she was 11 months old. She uses a wheelchair and is not able to walk. Most of the attractions are accessible if the person can walk or be carried for a short distance. All of the lines are wheelchair accessible - most are Mainstream, which means that the 'regular' line is accessible. There are a few where the main line is not accessible, but there are accessible entrances/boarding areas for those attractions.

While you are waiting for replies, there is also a lot of information in the disABILITIES FAQs thread that will be helpful, particularly in post #3, which includes links.

[mrsksomeday]

Hi, you might want to read this trip report by LeeLee, her son Braeton has CP: http://www.disboards.com/showthread.php?t=1604058 (http://www.disboards.com/showthread.php?t=1604058)

It is a lovely report.

[suzybeezy]

It would be helpful if you could narrow things down a bit.
What do you want to know? Does your child use a wheelchair normally? Walker? AFOs? A little more about him would be helpful.
Do you want information about resorts or just the parks?
Are you interested in any particular park? Any particular rides?

I have a 22 yr old DD with CP who has been coming to WDW since she was 11 months old. She uses a wheelchair and is not able to walk. Most of the attractions are accessible if the person can walk or be carried for a short distance. All of the lines are wheelchair accessible - most are Mainstream, which means that the 'regular' line is accessible. There are a few where the main line is not accessible, but there are accessible entrances/boarding areas for those attractions.

While you are waiting for replies, there is also a lot of information in the disABILITIES FAQs thread that will be helpful, particularly in post #3, which includes links.

I thought this thread could be kind of a support thread where other parents with children with CP could share their WDW experiences. I have found I can learn alot from hearing how other people handled things, plus its very comforting to hear how other families did it and had a great time.

My son does where AFOs and can walk, just not for long distances or for long periods of time. He fatigues very easily. His CP falls in the moderate category. Last time we visited WDW, we used a double stroller. This worked out great and since the park wasn't very crowded, we were able to wheel him around and he could get out and just get on the rides. This year, his muscles are more tight and his walkin' is more labored. So we'll likely have to keep him in the wheelchair thru the lines. I'm praying for low crowds.

[alizesmom]

I hope you get low crowds. We took our son who has severe spastic quad CP as well as other problems in Dec. He's never out of the wheelchair but we got around the parks just fine. Made good use out of the GAC as well as the First Aid Stations for changing, feeding and taking a break. Karen

[SueM in MN]

Made good use out of the GAC as well as the First Aid Stations for changing, feeding and taking a break. Karen
The GAC is Guest Assistance Card and there is a whole section about GACs in the disABILITIES FAQs thread near the top of the board.

[suzybeezy]

I often think of WDW as a difficult place to navigate for a person with mobility issues since there's sooo much walking, with everything all spread out, especially at AK. In my head I think considering my son's involvement have always thought it was best to take him when he as young. Not sure if its true or not, but always figured it would be more difficult the older he got.

Last year when we went, we used the double stroller designated as a wheelchair and with the lower crowds, didn't have much issue parking the stroller then just getting in the lines.The biggest problem I found was waiting in the lines for the character autographs/photos. I found that is the times that fatigued him the most.

We also found most CMs to be very helpful, except at the Little Mermaid, we had some issues there but nothing so major that it effected our day. As I mention, with AK, we found it to be a bit too much for my son. With how far everything was from each other, along with the heat and the lines, especially for Finding Nemo, he wiped out early.

For the most part, I think having a good plan is essential for anybody, but particular when you have to give mobility concerns primary attention.

[MagiKitty]

My boyfriend has mild CP and ordinarily uses crutches. But when we go to WDW, he opts to use a chair. We often go during low season also, to avoid crowds. It IS a lot of walking, and often my BF takes a break and he walks a bit just to avoid his muscles from getting too tight.

We've mostly had positive experiences with CMs and we choose to go to WDW because we feel that they have anticipated any issues that we may encounter with accessibility issues.

One thing we have yet to understand though, is why on TestTrack they insist we can take the crutches in the car with us!

[m!ssemmx0]

I'm 13 and I have mild CP. My grandma took me and my cousins and our parents to Disney in October 07. I normally use a walker at school and wear AFOs, but I can walk fine and am very independent; although I get tired after a while. My parents brought a wheelchair along, which was a lifesaver! I was surprised about how much I was able to do, and the only things I had problems with were getting into and out of the cars at Test Track and getting in and out of the rafts at Kali River Rapids. I had the best time, and I hope my parents will be able to take us back in a few years:woohoo:
~Emily:tinker:

[MagiKitty]

Hi there Emily,

We've never gone on Kali Rapids, but are hoping to ride it when we go in September. Thanks for letting us know it may be difficult to get in and out of it. But did you enjoy it? So glad to hear you had a great time!

[Forevryoung]

We had them "snag" a boat for us at Kali (accessible loading area) that way we didn't have to be on a set "time schedule" like the other boats. It made things a lot easier.

When we went, we left the AFOs in the hotel room during the day- I don't know if that's possible for some of you but it was easier maneuvering the child (10 at the time) in and out of ride vehicles without them.

At most rides our trick was to have someone on the inside of the ride vehicle and on the outside of the ride vehicle. This way we were able to do a "pass off" to the other adult (I have a feeling Sue probably does the same thing with her daughter). Then again, the child with cp that I was with can't stand unassisted which makes a huge difference.

[DisneyWheeler]

My best friend Lorrie, has spastic quad. cerebral palsy. When she and her family went to Disney World a few years ago she took both her power and her manual wheelchairs. They stayed on-site. But, it was at a resort that didn't have the bus access to the parks. Because Lorrie had her power chair they had to call a paratransit company each time they needed a ride somewhere. It rained for most of their trip, and so you can imagine what it was like having to wait half an hour to an hour for the paratransit driver to show up. Which was what they had to do each time.

Lorrie was able to do the rides that she could bring her power chair on. But, it was difficult for her mom and step-dad (especially her mom during the times when she was alone with Lorrie) to lift her in and out of the rides where she couldn't have her power chair with her.

Samantha

[SueM in MN]

Hi there Emily,

We've never gone on Kali Rapids, but are hoping to ride it when we go in September. Thanks for letting us know it may be difficult to get in and out of it. But did you enjoy it? So glad to hear you had a great time!
I posted a picture of the more accessible boarding areas and a little bit about them for Test Track and Kali on this thread. (http://www.disboards.com/showthread.php?t=1803182)
We had them "snag" a boat for us at Kali (accessible loading area) that way we didn't have to be on a set "time schedule" like the other boats. It made things a lot easier.

When we went, we left the AFOs in the hotel room during the day- I don't know if that's possible for some of you but it was easier maneuvering the child (10 at the time) in and out of ride vehicles without them.

At most rides our trick was to have someone on the inside of the ride vehicle and on the outside of the ride vehicle. This way we were able to do a "pass off" to the other adult (I have a feeling Sue probably does the same thing with her daughter). Then again, the child with cp that I was with can't stand unassisted which makes a huge difference.
Yep, that's what we do for most of the rides that need a transfer.
For Test Track and POC, I get into the ride car and 'receive' DD. For Spaceship Earth and Haunted Mansion, the ride car is a little smaller. We park her wheelchair very close to the ride car and DH gets on the ride with DD while I hold the wheelchair.
My best friend Lorrie, has spastic quad. cerebral palsy. When she and her family went to Disney World a few years ago she took both her power and her manual wheelchairs. They stayed on-site. But, it was at a resort that didn't have the bus access to the parks. Because Lorrie had her power chair they had to call a paratransit company each time they needed a ride somewhere. It rained for most of their trip, and so you can imagine what it was like having to wait half an hour to an hour for the paratransit driver to show up. Which was what they had to do each time.

Lorrie was able to do the rides that she could bring her power chair on. But, it was difficult for her mom and step-dad (especially her mom during the times when she was alone with Lorrie) to lift her in and out of the rides where she couldn't have her power chair with her.

Samantha
I'm not sure what resort you stayed at, but all the WDW resorts have some sort of accessible transport. It's possible that some of the non-Disney ones that are in the Downtown Disney area don't.
The MK resorts have direct, accessible non-bus access Grand Floridian, Contemporary, Polynesian have the monorail. Wilderness Lodge and Fort Wilderness have boats and if the water level is not conducive to boats, they have buses. They have transportation to the Ticket and Transportation Center where you can get a monorail to Epcot or a bus to other parks.
Boardwalk, Beach Club, Yacht Club and the Swan and Dolphin have accessible boat service to Epcot and the Studio. They have bus service to other parks.
All the other WDW resorts have bus service and about 99% of the buses are wheelchair accessible.

[suzybeezy]

When we went, we left the AFOs in the hotel room during the day- I don't know if that's possible for some of you but it was easier maneuvering the child (10 at the time) in and out of ride vehicles without them.



We had my son at therapy yesterday and we were discussing the pros and cons about leaving the AFOs off while we visit Disney. I kind of figure if we're using a wheelchair then he won't be walkin' much, so maybe he won't need his AFOs. But then again, if he has to stand in any lines for any length of time, his legs will fatigue very quickly. Actually both my youngest boys have CP. My 8 yr old has more involvement than my 6 yr old (who's involvement in mild and barely noticable), we'll be using a wheelchair in lieu of the hideous cost of the double strollers. Additionally my 6 year old has a leaky aortic valve and gets overheated to the point of wiping out extremely easily. Medically my 8 year old needs some form of assistance whether it was the stroller or wheelchair but there's also medical benefits for my 6 year old. But, I have expressed my concerns elsewhere here on DIS that since we'll likely have them both sit in the wheelchair, the way we used the double stroller, that people will be shooting us nasty looks, particularly if my son isn't wearing his AFOs. I know I shouldn't worry about what others think, and its bonkers that I would have to "prove" he really needs the wheelchair, but people are funny and I don't want my son to feel that kind of negativity from others.

I'm really struggling trying to figure out whether he should wear the AFOs or not. So much to consider.

[DisneyWheeler]

I'm not sure what resort you stayed at, but all the WDW resorts have some sort of accessible transport. It's possible that some of the non-Disney ones that are in the Downtown Disney area don't.
The MK resorts have direct, accessible non-bus access Grand Floridian, Contemporary, Polynesian have the monorail. Wilderness Lodge and Fort Wilderness have boats and if the water level is not conducive to boats, they have buses. They have transportation to the Ticket and Transportation Center where you can get a monorail to Epcot or a bus to other parks.
Boardwalk, Beach Club, Yacht Club and the Swan and Dolphin have accessible boat service to Epcot and the Studio. They have bus service to other parks.
All the other WDW resorts have bus service and about 99% of the buses are wheelchair accessible.[/QUOTE]

Hi Sue; They stayed at a RCI resort. Can't remember the name of it that my best friend had told me at the moment. But, it was a villa-type resort that had no bus service to the parks. That was why they had to use the paratransit service. I told her how we would stay at either one of the All-Star resorts for a reasonable price, and how easy the bus system was there, to get to the parks and back.

Samantha

[SueM in MN]

But, I have expressed my concerns elsewhere here on DIS that since we'll likely have them both sit in the wheelchair, the way we used the double stroller, that people will be shooting us nasty looks, particularly if my son isn't wearing his AFOs. I know I shouldn't worry about what others think, and its bonkers that I would have to "prove" he really needs the wheelchair, but people are funny and I don't want my son to feel that kind of negativity from others.

I'm really struggling trying to figure out whether he should wear the AFOs or not. So much to consider.
There are people who will judge no matter what.
My DD can't even stand up, but we have had the situation of hearing someone say "There's a child who just has a wheelchair to get ahead in line." It was said loudly, for our 'benefit'. The apparent reason they said it was that DD was sitting on a bench with her wheelchair sitting next to her.
A lot of people assume that if someone is physically able to get out of their wheelchair, it means they don't need it. In our case, DD needs to lift her out of he wheelchair, but once she is out, she sits fairly well on a bench or chair. (Depending on her tone that day).
You know what your children need, and your family's opinion is the only one that matters.

My DD doesn't have AFOs anymore, but I do recall how hot they got when she did wear them. If you want to bring them along, but not have him wear them all the time, it would be possible to leave them either in First Aid or in a locker. All the parks have a First Aid station and rental lockers near the front of the park. That way, if you find they would be helpful, they would be there.
Another thing to think about is how stable he would be for stepping into ride cars without the AFO. For example, so rides like Pirates require 2 large steps down to get into the ride car and another 2 steps out to get back out. Here's a picture of POC boat so you can see.
http://photopost.wdwinfo.com/data/500/2590P4110366-med.JPG

allearsnet.com (http://allearsnet.com/tp/gal_ride.htm) has a gallery of ride seating photos that might help you. They don't all show the step because they were taken originally to show the size of the seat for Pooh sized guests. I also have a lot of ride photos, but only a small portion are on the internet so far.

[scottsod]

hi

we have been several times in the last few years my oldest was 5 at 1st now hes 9 he has spastic cp that mostly effects his legs and aspergers

anyway he uses a walker at school and a wc for long distances
we has never taken the walker to disney even 1st trip when we drove was just use the chair and no afos its to hot for long socks and afos and in the chair he dosnt need em he crawled around the hotel room when we had our other 2 sons little ones with us last trip we got a stroller as wc sticker for the doubble stroller and used it a few times with 1 little guy in there and my older one for lines were you couldnt bring a stroller in helped alot he cant stand with out holding on and if he was out of the chair at the park taking a break and some one said somthing i would give them a verbal a** kicking

btw we had nothing but love from cm and other guests at wdw lots of great moments and special treatment just go and have fun if someone else complains when u use a GAC or wc entrance just tell em ill trade your wait in line for the rest of his life!

scott

[MarieS]

Both of my boys ages 16 and 10 have severe CP and use a wheelchair full time. They need to stay in their chairs to ride, so we were only able to do a handful of rides. For us the keys to a successful trip were planning, getting there at opening and using morning EMH and using the First Aid stations for tube feeding, changing and rest breaks. My boys do wear AFO's for standing in equipment ( which of course we weren't doing on vacation) and to break up tone, but I opted not to have them wear them at the parks because of the heat.

[IkeandMike]

HI,

My son has mild to moderate cp. The doctors say moderate, I say mild because the boy stops at nothing. (haha) He wears AFO's with a cable system attatched to turn out his right leg. When we go to disney I always bring a stroller or rent one for him. He does tire easily and when we stand in lines my husband or I pick him up if he gets too tired. He only weighs thirty two pounds at almost six years of age. His twin sister weighs 56 pounds. I think I worry more about his weight than about his disability sometimes. I know the one is a reaction from the other, but I worry.

This year has been a miraculous year for my son and our whole family. This year he had a surgery called Selective Dorsal Rhizotomy. What this has done for him is nothing short of amazing. I don't know if you get botox injections for your son's tone, but what this surgery does is almost like a permanent botox treatment. His tone is almost completly gone. Except for his hamstring is still tight. So I am hoping that this year at disney his distance tolerance will be higher. Last year it was torture watching him walk from the ttc to the stroller rental. I know this year will be different for him. He is also way more stable on his feet. He used to fall no less than ten times a day. If someone just brushed him, he would loose his balance, now he doesn't fall once a day. Actually last year his first character meet was with Minnie and when he went to walk away he lost his balance and fell. The sweetest thing was Minnie left the child she was with and helped him up and gave him a hug. I cried. Disney is so sweet.

I'm not sure if we will have him wear his AFO's to the park though. The cable system is very limiting, he's almost like the tin man in them.
And he despises them. He has found numerous hiding places in the house for them to get out of wearing them.

If you have any questions please pm me.

[suzybeezy]

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.

[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 :dance3:

[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. :hug:

[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. :thumbsup2

I thought I'd jump right in and share some photos from our last trip...
http://i14.photobucket.com/albums/a326/amvaughan/IMG_1901.jpg
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.

http://i14.photobucket.com/albums/a326/amvaughan/IMG_19203.jpg
On the monorail the next morning...headed to MK!

http://i14.photobucket.com/albums/a326/amvaughan/IMG_1935.jpg
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!

http://i14.photobucket.com/albums/a326/amvaughan/IMG_1943.jpg
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.

http://i14.photobucket.com/albums/a326/amvaughan/IMG_1984.jpg
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]

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2004.jpg
MGM on day 2. I was pleasantly surprised. I didn't think there would be enough stuff that both boys liked.

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2034.jpg
The Back Lot Tour was fun and interesting.

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2048.jpg
Dathan and I kicked hiney at Who Wants To Be a Millionaire. :laughing:

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2164.jpg
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!

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2165.jpg

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2173.jpg
Dathan's favorite treat...giant pretzels, mmmmmmmmm.

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2174.jpg
I liked that some of the attractions had direct wheelchair access so he didnt have to transfer at all.

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2180.jpg
Little Brother's back...I think that was the boat ride in Mexico. Easy access there too.

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2243.jpg
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).

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2255.jpg

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. :cool1:

http://i14.photobucket.com/albums/a326/amvaughan/IMG_2311.jpg
Last pic...and one of my favorites from the trip. :love:
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).

http://i6.photobucket.com/albums/y220/suzybeezy/Picture010.jpg
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.


http://i6.photobucket.com/albums/y220/suzybeezy/Picture011-1.jpg
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.

http://i6.photobucket.com/albums/y220/suzybeezy/CopyofEpcot009.jpg
Zach and Danny sippin' some Beverly at Epcot.

http://i6.photobucket.com/albums/y220/suzybeezy/Picture075.jpg
On the Streets of America my hubby, Janie, Zach and Danny.

http://i6.photobucket.com/albums/y220/suzybeezy/Picture030.jpg
I love this picture from the Backlot Tour.

http://i6.photobucket.com/albums/y220/suzybeezy/MagicKingdomLastDay035.jpg
Love Eyeore!

http://i6.photobucket.com/albums/y220/suzybeezy/MagicKingdomLastDay047.jpg
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!