4 year old with mild CP

[Momto3nuts]

This will be our 4th trip to WDW, but the 1st since my DD will be walking/moving more on her own.

She is 4 years old and has mild cerebral palsy.

We have a placard for parking, and she does fine 90% of the time, she is very high functioning.

Most people don't notice that she has any issues at all. (which is great, but a pta sometimes, )

She wears little leg braces to help with her leg issues.

Any advice?

 

[Talking Hands]

Stroller as a wheelchair to be used as needed. WDW is huge and walking all day could be difficult for her.

 

[Momto3nuts]

Thanks, we will definitly be bringing a stroller, as we have a 1 year old too (and a 6 year old LOL)

Last time we went, she was just walking.

 

[teachallday]

Congratulations on you little princess gaining more mobility/independence.

You said she does fine 90% of the time, so to you challenge when planning this trip is going to be to change your focus from the 90% to the 10%. Plan for the ten percent of the time. Through my 14 years as an Elementary / Preschool level special education teacher, I learned a long time ago that for field trips I needed to focus on that 10% to have a successful field trip. The approach works for outing and trips with the family also.

If you plan your trip around the 10% of the time that things are not at their best, then when things are going fine you have an extra bonus. When things go into that 10% you are prepared for it and it should not take away from the trip or experience. Bring her stroller, walker, and other tools she has used over the last year. She does fine with the braces, but prepare for her having a sore under the braces and maybe having to have time without them. With all the walking around Disney, she may just decide it is too much and not put in as much effort as she does at home and school.

You will find many posts with people saying how Disney brought out so many positive elements in their kids and had their kids gain skills due to Disney. This would be wonderful if she came back from Disney with better mobility skills, but don't plan for that. Plan for her having less while at Disney.

I can't tell you the number of times I have gone on trips looking at the 90% and ending up with a kid in the 10% percent. - - Yeah, he is toilet trained 90% of the time and rarely has accidents. Yet on the trip he rarely used the toilet and had several "accidents" (not that you can really call it an accident if the child isn't trying to get to the toilet). - - - Prepare for the 10% and then when the child goes there, it is not a problem for you came prepared for it.

From what little you have said about your Bring or rent a stroller, bring her braces and the shoes for the braces, bring shoes that she wears without the braces, and get a GAC. And most important of all, have fun without the disability getting the way of the 4 year old little girl.

 

[mechurchlady]

Go to guests services at any park and get a "stroller as a wheelchair" tag so you can take the stroller into any place that wheelchairs go even if there is a sign saying no strollers allowed . You can get a GAC that says no stairs if you plan to park and walk onto some rides. You want to let her be like other kids and run around and have fun while burning up some energy but not so much that she is in pain, exhausted or her CP flares up. The wide open spaces of the parks are nice for letting kids run around and burn up energy, lol.

With the heat and humidity you will want to watch the braces that there are no spots. There are companion restrooms if daddy needs to take her. The nurse's station has some over the counter medicine like aspirin, a place you could change her in private, and basic necessities like bandaids. She can ride any ride she wants even with the braces.

Read this site's FAQ stickied on the main page of disabilities.

Hugs and good luck on the trip.

 

[SueM in MN]

I agree with the others.
She may be able to walk 90% of the time at home or at school, but keep in mind that you are probably going to be walking at least 3 miles per day - and probably more than that. There is a thread linked in post #3 of the disABILITIES FAQs thread that has people's estimates of how much they walk in a day at WDW.
That's quite a lot of walking even for a child without any issues.

If she doesn't neef the stroller all the time, that's great. One thing sometimes do is park the wheelchair or stroller in an area and then walk around; more of less using the stroller for long distances and walking short distances.

If you decide not to bring the stroller into some lines, be aware that the distance walked in some lines are very far - even if the wait is not very long.

Check out post #6 of the disABILITIES FAQs thread for more information about GACs (Guest Assistance Cards).

 

[Piper]

My daughter also has very mild CP. She had braces (and special shoes until she was 3.) Most people didn't notice any difficulties with her either, but she tired easier and when she did--her problems were "noticable." I learned to bring a stroller any time we were going to be doing more walking than normal. I also found out that excitement played a part in tiring her out and what is more exciting than WDW!

I also think you should get the stroller as wc tag and use it in lines. It is sometimes harder to wait and move through long lines (and some of them can be long distance wise) than just to walk somewhere.

BTW my daughter is 41 now.

 

[Momto3nuts]

Thanks, Ladies, the replies were all s nice they brought tears to my eyes

(I will admit, I have a healthy case of PMS)

I think that planning for the 10% is a good idea. We did ballet today for the first time (without braces) and she did awesome, the teach didn't even notice she had an issue, till the ned, she had some muscle tremors. ( I had told the 1 teacher, but the oher did not know apparently).

I hate to have to plan for the 10%, cause darn it, I want he to have no issues, KWIM? Silly, I know, b/c her issues are just a drop in the bucket of many many kids.

I will look into the CAC, and will bring several shoes, thats an excellent idea. I got new sneakers for her today, and want to make sure they are all super broken in well. Thanks for the heads up about the blisters/ issues in the heat.

I will bring extra motrin too, may just dose her prior to the day's activites, to make sure she doesn't have a ton of inflamation and such.

Thanks so much for all the ideas!


Also, SO SO SO gla that your daughter is doing well at 41, you know as a mom, you worry for your babies!

 

[mechurchlady]

It is better to take pain meds before the pain hits. Sue can explain better. I just know Iread that here that taking the meds before hand helps. On the airline any medical needs like braces and orthotics can be packed in a seperate carry on and not count toward the total luggage. Same with baggage. She might be more comfortable with out braces if it is a long flight. Easier to curl up and nap.

The secret to a great trip is planning for them bad days. Too much sun, ouchies, and PMS days will happen so you prepare for them and hope nothing goes wrong. Good luck and hugs.
Laurie

 

[katieandemismom]

Our Emily is 5 and has mild hypontonic cp. Most people have no clue she even struggles, but I know how tired she gets and how bad her legs hurt after a while. What I've discovered is while we're in the parks doing something she loves, she pushes herself over the limit to exhaustion and is miserable later on in the day. I highly rec the GAC. We have a sticker for the stroller (to use it as a wheelchair) and have requested special accomodation for lines that are in the sun (it wipes her out to sit in the sun for extended periods). Disney has been phenomenal with helping us.

We also request first floor if at the mods or values and close to the buses / monorail at the hotels.

It's hard b/c Emily does LOOK like a typical child at first glance. No one would ever guess she was never supposed to run. We've had a lot of other guests make snarky remarks to us, and often the cast members will stop us if we have the stroller with us. We've always had the most success by just having our GAC in-hand when going to an attraction.

Have an amazing trip!

 

[Momto3nuts]

Thanks so much!

Alexis has the same type of CP. She has left side hemiparies with a left leg length discrepancy.

She too will do fabulously one day, and crappy the next day. She actually asked today to wear her surestep braces today. She started ballet yesterday, and I think her legs were bugging her.

 

[disneyworldmom2]

I agree with the other posts about the stroller and GAC card. I would suggest taking some moleskin, just in case she has problems with the braces. I take an extra pair of socks with us to the parks, and part way through our day, I take my son to the first aid station and change his socks. His feet get so hot and sweaty in his AFO's. Remember to keep her well hydrated, too. She works harder at walking, and may become dehydrated quickly. Most of all, enjoy! Disney brings out the best in the kids, and us.

 

[SueM in MN]

I agree with the other posts about the stroller and GAC card. I would suggest taking some moleskin, just in case she has problems with the braces. I take an extra pair of socks with us to the parks, and part way through our day, I take my son to the first aid station and change his socks. His feet get so hot and sweaty in his AFO's. Remember to keep her well hydrated, too. She works harder at walking, and may become dehydrated quickly. Most of all, enjoy! Disney brings out the best in the kids, and us.

My D doesn't walk any more (she always had a very strange, slow and unsteady gait even with a walker.) As she got taller, her center of gravity shifted so that it was not safe for her to walk any more - she walked sort of hunched over backwards. Anyway, when she had a gait analysis, they estimated that it took her more than twice the work to walk as it would take for a child of her age who was not disabled.
So, it is important to keep that in mind and also the dehydration possibility.

If you need to store any medical equipment in First Aid, that is a possibility (like if the child only wears the braces/AFOs at some times during the day. There are also lockers in the entrance area of each park where you could store things.