Cerebral Palsy

[The Real Cinderella]

We have booked for 2 weeks saraotga springs May 2012 for us which is 4 adults a 3.5 year old and my daughter who will be 15 months at the time of travelling but who is fast developing and showing signs of cerebral palsy.

I have absolutely no idea at this moment in time how the CP will affect her movements by that age but am wondering what other parents with children with cp in my position have done, any problems they've encountered any top tips etc

Is there any extra help provided from disney?

 

[SueM in MN]

My youngest DD has cerebral palsy and first went to WDW when she was 11 months old. She has been to WDW at least once a year since then and is now a young adult.

It's really hard to give specifics because people with cerebral palsy's symptoms can have a very wide range. It's very hard to say what the end result will be looking at the current symptoms of an infant.

My DD has mixed CP, mostly spasticity affecting her arms and legs, but her muscle tone varies between rag doll limp and Barbie doll stiff.
She can't stand without someone holding her up and can't walk without being totally supported in a gait trainer, which holds up her trunk and secures her in a standing position. She is able to propel a manual wheelchair, but not for any great distances. She can drive her power wheelchair with a joystick. She understands, but is not able to speak.
She has a friend with athetoid CP who has a lot of slow writhing movements of her arms and legs. She does not have control of her arms to drive a wheelchair and uses controls in her headrest to drive her power wheelchair.

On the other end of the spectrum, DD had a daycare provider at one time who had CP. One side of her body was affected and she had limited use of one arm. Her leg on that side was also affected, but the only sign was that she walked a little slower when she was tired. There are also people who have no noticeable signs of CP, just some weakness or tightness in the affected areas or a bit of clumsiness.

So, as you can see, there is quite a large range of possibility. I'd suggest the website of United Cerebral Palsy as a good website to start with:
http://www.ucp.org/

They have been in existence for a long time - I think more than 60 years -and have local affiliates to the charity as well as a national organization.

As far a 'help' from WDW, since your child is Under 2 and will still be under 2 when you travel, it is really hard to know what sort of assistance she might need. The biggest help for a child that young is being able to bring a stroller into line and have it treated thevsame as a wheelchair.
This does not mean shorter waits - most of the lines are totally wheelchair accessible. But, strollers are not normally allowed in lines and you would otherwise have to carry your child. You will find more information about using a stroller as a wheelchair in post 6 of the disABILITIES FAQs thread. That thread is near the top of this board or you can follow the link in my signature.

The other big help is the First Aid station in each park. If she has equipment that needs to be stored, a place for treatments you need to do, or she just needs a good stretch, you can do that in First Aid. Those services are free of charge.

My best advice is that traveling with a 15 month with CP. Is not that different than traveling with a 15 month without CP. There are many attractions that infants can go on and you will be able to hold her or seat her next to you and support her. A child that age is pretty 'portable' and you should have little difficulty boarding any of the attractions that infants are able to go on.

You may find you do certain attractions for 'unusual' reasons. My DD liked spinning rides like the Teacups, but we 'used' them when her muscles were getting tight because the spinning motion relaxed her muscles and made her looser. While she was loose after the ride, I would sit down and place her on my legs with her head at my knees, her trunk coming towards my supported on my legs. Her butt was at my waist and her legs were extended straight up my trunk with her feet at my shoulders. A bit strange, but a very effective way to stretch her legs.

Feel free to ask as many questions as you need, especially as you know more about her condition.

 

[jmartinez1895]

I just wanted to second the idea of using your stroller as a wheelchair.

 

[twinmum]

First, take a deep breath. You've been hit with difficult news and you have lots of questions about what life will hold for all of you. Please know that there are lots of people here who will be happy to answer your questions. I'm not from the US, but I think Sue has provided you with an excellent starting point for further research. Also, be prepared for your healthcare team to avoid answering any questions about what your child will or won't be able to do in the future because it's way too soon...that's hard, because you are trying to cope, but not sure what you are learning to cope with!

Our son barely had neck control at your daughter's age, but at age 5 could walk very nicely using a walker. At one point we thought he might walk short distances independently, but despite lots of therapy, that has not been the case. Be ready to ride the waves as they come. Be hopeful, but not unrealistic. Be diligent about therapy but listen to your therapists and accept your child's limitations as they become clearer.

Sue's examples show the broad range of CP profiles. Each child presents with a unique profiles of strengths and needs. Like all parents, we give our children all we can to develop their strengths and support them given their needs. Our son may not be able to stand independently, but (oooh, proud mam here, sorry to boast!), but he's highly intelligent. Knocks the socks off the ignorant types who think all those with CP have cognitive issues as well.

But this was a WDW post, wasn't it? We've had 5 trips and a Disney cruise. We keep coming back because everyone finds something they love about WDW each trip, and the cast members go way out their way to make sure that our son's needs are met, and as a result, we all have a wonderful time. The advantage to experiencing WDW with a child with needs is not any Guest Assistance Card (can you imagine my face when someone one told me I was "so lucky" to have a child with a GAC because "you get to skip the lines" (not true)?!?). The real blessing is being showered with the caring attention of the vast majority of cast members who encounter our family. It makes it difficult to go anywhere else!

A final thought. I know it's early days and you have lots of emotions swirling around. All you really have to do is love your child, and accept her challenges as simply being part of who she is. She will bring you joys you never imagined.

 

[OrthoDad]

I agree with the previous posters...Sue always has great points about WDW and CP! Know that there are some amazing people out there who have shared your journey, know what you're going through, and are there to help you. I agree with Sue, at that early age, you won't find much differences between a trip to WDW with a child with CP and one without.

We have two sons with CP, and have been going to WDW all their lives (they are now 14!). Disney just does such an amazing job with kids with disabilities....they create an environment where my kids can do all the same things other kids do (and sometimes, do even more special things!).

We now live in AZ and go to DL now more than WDW. We just got back from an amazing week at DL, and my wife's blog talks about how we feel about Disney and our kids with CP (http://www.theblessingcounter.blogspot.com/).


Finally, the disABILITIES board really helped us when the kids were early in their diagnosis, and we were struggling to cope. WDW was a magical escape for us, and so many people on this board helped me plan the best experience for my kids. This place will always have a special place in my heart, and I encourage you to come here often and ask questions.....you'll get great advice!

Wade

 

[SueM in MN]

Thank you, Wade.

How can your kids be 14 already?
I remember when you came to this board for advice about going to WDW when they were very little.

We are trying to get more information out on the board about DisneyLand. My co-Mod KPeveler lives close to DL and she is posting more about experiences there. But, we are always looking for more input.

 

[Piper]

My daughter was born 3 months early and had a very mild form of CP. I did the therapies the PT and OT taught me at home several times a day. She was late walking, running, riding a trike, etc. but other than that, most people just thought she was clumsy.

When she was born, I was told she might never walk, talk, etc. Just remember that it is very difficult to tell at an early age what the outcome will be. Just be sure to do what your doctors and therapists suggest as far as therapies and exercises--it does help!

 

[OrthoDad]

Thank you, Wade.

How can your kids be 14 already?
I remember when you came to this board for advice about going to WDW when they were very little.

We are trying to get more information out on the board about DisneyLand. My co-Mod KPeveler lives close to DL and she is posting more about experiences there. But, we are always looking for more input.

Yes, Sue, they're 14! We love living in Arizona. With my practice, I take care of a large percentage of kids with CP in AZ, so I'm pretty busy, but I try to post about our experiences with DL as much as I can. We have found that we love it! Several things are absolutely fantastic in terms of disability access at DL (Space, HM, Pirates), but the biggest thing is the close walking/rolling distance. I "lurk" on here all the time to find out the latest on the bus thing at WDW, since we still go once every 2 yrs or so. But, that's what we're most thankful for at DL...walking right out of our resort (We own at DVC GCV) and be right at the park!

W

 

[amycishere]

Hello, I have spastic CP myself! I'm quite physically disabled but am a college graduate from USF's Elementary Education program and have a job in retail at Best Buy because of the economy and because I can't spend long, long hours in my wheelchair. I'm hoping even if I don't use it, my degree will help me at some point. I am blessed to be able speak well and use my left side of my body for most all tasks. I'm 26. I just try to do the best I can everyday.

 

[PrincessAndrea'sMom]

My two year old daughter was also born three months early. It takes a while to sink in, but it will be ok, promise. Low muscle tone is her biggest symptom. She just started to stand on her own with our help a few weeks ago! So proud of her! We have taken her to WDW twice and DL once. To us, it is not much different than taking an infant. I agree with getting a wheelchair tag for your stroller. Its nice to take the stroller right up the line. Our doctors and therapists encourage to give her as normal a life as possible. Have a great time!

 

[WheelieBigDisFan]

Hi Sue,
I am a 23 y.o. female living in So. Cal. I have a T10 incomplete Spinal Cord Injury and use a manual wheelchair. I have a Premium AP for DL and frequently visit multiple times in a month. I would be willing to share any info I have about DL and DCA. Access to both parks is fantastic, with some access to attractions better than others. The attractions that I LOVE, but must ride with another person (can't go on a solo trip to DL/DCA) are:
Space Mountain: At Space Mountain you enter through the exit taking the walkway between the arcade and Pizza Port. The HC line is on the left and there is a nice bench area to sit on for the people in your group during the wait. Going down to the loading area is easy, just make sure not to go too fast and have your chair go out of control. Loading is great. They have a car that slides out of the line up so you have plenty of time to load. They do have a transfer bench for the ride, but I have never used it. Once everyone is loaded into the car you are put in que to slide back over to start the ride. After the ride, you slide over again, exit and get back into your wheelchair. Getting off the ride is not an issue for me, it is getting back up the STEEP ramp that you have to exit. This ramp is steep, and LONG, making it very difficult, if not impossible for someone to push themselves up independently.

Soarin' over California (DCA): The standby line at this attraction is wheelchair accessible, so you enter though the regular entry. They do offer FP for this ride, so if you don't want to wait standby you can get a FP and come back later. Once you get though the first part of the que outside, you enter through a door into the building. Inside the building is a ramp down to a CM who puts you in one of two directions. This ramp is STEEP and does not have level surfaces every few feet, so if you don't have breaks on your wheelchair, or your brakes are not effective, make sure to turn your chair sideways so you are against a rail or one of the walls (after the fork to one side or the other). If you can't turn to a rail/wall (people in your way) hold on to your wheels for dear life! It would be all too easy to go "human bowling" here. Once at the bottom you are directed to one of three loading areas, and one of four lines in that loading area. You want to be either first in line or last in line so that you get an end seat to transfer into. Once you transfer onto the ride have a friend or CM move your chair off to the side. Once the ride is over the CM (or a friend if the CM forgets) will bring your chair back to transfer into. After exiting the sound stage, you will proceed up a VERY steep ramp to exit back to the ground level. Unlike SM, this ramp does have some flat spots at turns that you can stop and rest in. If I try to push up this ramp by myself by the time I get to the top my shoulders are shot and it is difficult to push for the remainder of the day, so I now only visit this attraction when I have a friend to help push.

That is just a quick tidbit about DL, but I have a LOT more where that came from. Hope to be able to share my knowledge and experience of DL/DCA with others on this forum.

Mandy