Traveling to the World with a DD with CP

[mommaof3girls]

Hello all!

We are making our first trip to WDW June 7th-14th. I have three kids, DD 6, DD 4, and DD 22 months.

DD 4 has moderately severe CP (wears AFOs, limited language skills (largely non-verbal), cannot sit upright without support, can only walk limited distances with her walker/AFOs and support), she stays in her stroller at preschool and when not in the house, has to be lifted to transfer, cannot do it herself).

I know about the stroller as a wheelchair sticker..does anyone else have suggestions or tips to offer?

She is gtube fed and doesn't take in much by her mouth. We will be on the dining plan but as DD #3 is under three, she won't have credits. She eats more than older DD, so will DD #3 will be able to eat off DD 4's plate? I.e. can they share?

 

[Mary976]

Your idea for using the dining plan sounds fine. Basically, you get one credit per person and then kids under three share off a family member's plate. It doesn't really matter who eats more or less. As long as the girls like the same foods, you should be good to go with them sharing.

Mary

 

[krisnme]

I found out the hard way that DS needed extra sunscreen on the tops of his legs and knees when sitting in a chair all day! Also, AFO's can get really hot and sweaty after a long day, if she can come out of them for any period of time try to let her have some "barefoot" time. I try to get DS out of his chair at least for a few minutes of walking whenever I can. He holds the chair for support and seems to do better with just a little movement. It's easy to forget how much sitting they do when away from home. Have a great trip!

 

[twinmum]

I found out the hard way that DS needed extra sunscreen on the tops of his legs and knees when sitting in a chair all day! Also, AFO's can get really hot and sweaty after a long day, if she can come out of them for any period of time try to let her have some "barefoot" time. I try to get DS out of his chair at least for a few minutes of walking whenever I can. He holds the chair for support and seems to do better with just a little movement. It's easy to forget how much sitting they do when away from home. Have a great trip!

These are great suggestions...I'd also add that the forearms get more exposure to the sun as well.

The First Aid centres (and lovely RNs!) are a great resource. We've been there for a number of reasons, sometimes just for another companion washroom, but also for rest, gtube feeding etc. They have refrigerators (only used this once).

My only other suggestion is to think of what you might need, and when you do recognize a way that the CMS might be able to help, don't be afraid to ask. They've been wonderful!

Have a great trip!

 

[mommaof3girls]

These are great suggestions...I'd also add that the forearms get more exposure to the sun as well.

The First Aid centres (and lovely RNs!) are a great resource. We've been there for a number of reasons, sometimes just for another companion washroom, but also for rest, gtube feeding etc. They have refrigerators (only used this once).

My only other suggestion is to think of what you might need, and when you do recognize a way that the CMS might be able to help, don't be afraid to ask. They've been wonderful!

Have a great trip!

Thanks guys for the tips!


I absolutely appreciate all the tips I can get!

 

[SueM in MN]

My youngest DD is a young adult with CP.
She has been coming to WDW with us since she was 11 months old. She got her first wheelchair when she was not quite 3, so we have. Lot of trips with a wheelchair. She is non verbal, but understands everything. Can't sit without support, can't stand unless she is held up. She does eat, but we have to feed her most things. She is considered to have mixed CP, but is predominantly a spastic quad.

Besides the advice already given, my suggestion would be to look at general information for preschool age children because a lot of it will apply to her despite her special needs. A 4 yr old is small enough to be lifted into rides and sit next to you, which will help support her.

Check out the disABILITIES FAQs thread - especially post 3 and the posts on page 2 that talk about transfers. There is a link to an interactive video in post 3 that has a tour of all the parks - with video of most attractions that even gives a view of boarding. Post 6 of that thread is about Guest Assistance Cards nd using strollers as wheelchairs.

You can find the thread close to the top of this board or follow the link in my signature.

 

[mommaof3girls]

My youngest DD is a young adult with CP.
She has been coming to WDW with us since she was 11 months old. She got her first wheelchair when she was not quite 3, so we have. Lot of trips with a wheelchair. She is non verbal, but understands everything. Can't sit without support, can't stand unless she is held up. She does eat, but we have to feed her most things. She is considered to have mixed CP, but is predominantly a spastic quad.

Besides the advice already given, my suggestion would be to look at general information for preschool age children because a lot of it will apply to her despite her special needs. A 4 yr old is small enough to be lifted into rides and sit next to you, which will help support her.

Check out the disABILITIES FAQs thread - especially post 3 and the posts on page 2 that talk about transfers. There is a link to an interactive video in post 3 that has a tour of all the parks - with video of most attractions that even gives a view of boarding. Post 6 of that thread is about Guest Assistance Cards nd using strollers as wheelchairs.

You can find the thread close to the top of this board or follow the link in my signature.

Thank you for the advice!

Everything is very helpful! I will head to check out that thread soon!

DD 4 will be needing to move to a pediatric wheelchair soon. We are trying to hold off as long as possible, though, as she is tiny and fits comfortably in the Maclaren.

 

[dragonfly57005]

One of my kids has multiple food allergies and when we had the dining plan we just let our not quit 3 yr old eat her food.

 

[WheeledTraveler]

DD 4 will be needing to move to a pediatric wheelchair soon. We are trying to hold off as long as possible, though, as she is tiny and fits comfortably in the Maclaren.

Slightly OT: while I totally understand the easy of use (and cost) thing with keeping her in the Maclaren, have you thought at all about the social aspects of her being in a stroller rather than a wheelchair at this point? Certainly it's not going to matter somewhere like Disney where loads of kids use strollers even up to 6 or 7. I just know it was harder socially for some of my friends with CP (just using it as an example because it's where I know the most people who couldn't walk as kids) because they didn't get a wheelchair until they were 4 or 5. This meant that in places like preschool they weren't independently mobile when everyone else was and kept them more reliant on other people when they maybe didn't have to be. It's a lot harder to make friends as a kid when there's an adult always around so that you can be pushed somewhere.

I'm an adult, but I can't self-propel my own manual wheelchair much which means any time I go anywhere in it, I have to have someone with me (I own a powerchair, but can't transport it anywhere). This means that for me to go out anywhere larger than about a grocery store, I generally have to have one of my parents with me to push or be with friends willing to push. It makes it harder to meet new people and have any sort of social life (especially a private social life!). I'm lucky in that I can still walk enough that I can do some things on my own, but the entire situation has made me a bit sensitive to the experiences of other people in similar situations and always looking for ways to make things better

 

[SueM in MN]

Slightly OT: while I totally understand the easy of use (and cost) thing with keeping her in the Maclaren, have you thought at all about the social aspects of her being in a stroller rather than a wheelchair at this point? Certainly it's not going to matter somewhere like Disney where loads of kids use strollers even up to 6 or 7. I just know it was harder socially for some of my friends with CP (just using it as an example because it's where I know the most people who couldn't walk as kids) because they didn't get a wheelchair until they were 4 or 5. This meant that in places like preschool they weren't independently mobile when everyone else was and kept them more reliant on other people when they maybe didn't have to be. It's a lot harder to make friends as a kid when there's an adult always around so that you can be pushed somewhere.

I'm an adult, but I can't self-propel my own manual wheelchair much which means any time I go anywhere in it, I have to have someone with me (I own a powerchair, but can't transport it anywhere). This means that for me to go out anywhere larger than about a grocery store, I generally have to have one of my parents with me to push or be with friends willing to push. It makes it harder to meet new people and have any sort of social life (especially a private social life!). I'm lucky in that I can still walk enough that I can do some things on my own, but the entire situation has made me a bit sensitive to the experiences of other people in similar situations and always looking for ways to make things better

That was one of the reasons we did get DD a manual wheelchair when she was not quite 3.
A special needs stroller was recommended, but we decided against it because she was capable of propelling a wheelchair - although she has never been able to go long distances. Some children are not/will not be able to independently propel a wheelchair, but for those who are, it does give more independence than a special needs stroller.

 

[disneyobessed]

Have a great trip! My son is 12 and also has mixed/moderate CP. We have been taking him since he was 4 in his COnvaid stroller and next year he will have his motorized scooter. Get an extra ponch to put over stroller if it rains to keep her dry. We used many just to do this. What reosrt will you be staying in?

 

[disneymom04]

Wheeled Traveler,

Thank you so very much for your input. I am the mom of an almost 3 year old daughter. Her PT is suggesting a power chair for the reasons you describe (independance at her little playgroup). And, as a mom, I'd rather see her in a "more normal looking" stroller. I think your input just pushed me over the edge. She is very social and will love the idea of driving her own little chair.

They did warn me though, to be sure to continue her walking practice in her gait trainer. Can't let her get lazy.

Thanks again!!!

 

[goofieslonglostsis]

Wheeled Traveler,

Thank you so very much for your input. I am the mom of an almost 3 year old daughter. Her PT is suggesting a power chair for the reasons you describe (independance at her little playgroup). And, as a mom, I'd rather see her in a "more normal looking" stroller. I think your input just pushed me over the edge. She is very social and will love the idea of driving her own little chair.

They did warn me though, to be sure to continue her walking practice in her gait trainer. Can't let her get lazy.

Thanks again!!!

Grief over the bump of her disability being more visable (it is something that is very normal to grief about, don't feel bad), but indeed never let those emotions make the decision where facts ought to do so.

Apart from the independance -which is HUGE- there are all kinds of other positive effects. You are leading by example for daugther. Even without saying, you are "pushing" her to learn to grow up and not stay a youngster depending more than need be on her parents. Very important part of raising a child, even more so when raising a disabled child. They even more need the ability to become as independant as can be and they can be fighting an uphill battle while doing this (society and loved ones all have ideas that might come from best intentions but easily will slow down this process by a threating a child younger then they are and capable of functioning as).

"Pushing" her out of the stroller and into a chair sends her a message; go out. Walk. Explore the world, you are no longer a baby that needs her parents 24/7 to get anywhere.

Apart from that all, it's not a reason to get a child a powerchair, but a nice bonus can be the wow-factor it can have on other kids. I mean; she will have a powered thing! At her age! That is huge with many kids, even more so when every once in a while hopping onto the back for instance and hitching a hike while playing a running game for instance. I can honestly say I've seen young kids be one of the most popular in a group because of this play-power-factor.


And while I know you probably consider your own benefits as less important; it will be a good thing for parents also. You also need that process of slowly growing up together and her becoming less dependant where possible. Having your own freedom back again, one step at a time. Giving her control over a huge part of her mobility will result in you as parents having a piece of freedom back, no longer constantly having to push her around. You'll lovingly do it, but if not needed...... Being able to go shopping together, her looking at something that she likes and you being able to look at something else in that area because you no longer have to decide between pushing her to what she wants to see and putting yourself 2nd or the other way round.

Helping your child to become as independant as she can be -obviously age apropriately- is the biggest gift you can give both her and yourself. Going for the powerchair will be a huge positive influence for you all. In the end you might just find that those positive effects help overcoming the grief of needing to resort to such a visable thing and one day perhaps shockingly realise that you have no negative sentiment about the chair at all anymore.

 

[humancatapult4]

i know it iss hard I cried when my son got his first wheelchair rather than a buggy.Becuase his disability became more obvious .But he felt so much better about it that people saw him as a little boy not a baby .

Ironic thing last year due to accident i became full time wheelchair user and i use powerchair outdoors and your daughter will have a blast in it .Hope you got your running shoes on to catch her

 

[retired and happy]

We have fostered and/or adopted 25 special needs children. Many have started in KidsKarts and graduated to wheel chairs. Some have had large wheels, some have had small wheels, depending on their needs. Our son got his first chair when he was a year old. He went through a power chair, but was never comfortable with it. He now pushes his own manual chair most of the time, although gets lazy in Wal Mart at times. His power chair is now resized for his sister using a head array, and although she may never become independent with it, she tries. Usually she is pushed in her manual chair. The important thing is for them to progress at their own rate/capabilities. Don't try to hold them back because of a perceived social stigma you may not like. As my DW likes to say (paraphrasing) They are not handicapped because they are in a wheel chair, they are handicapped if they can't get what they need, such as a wheelchair.

 

[mommaof3girls]

Slightly OT: while I totally understand the easy of use (and cost) thing with keeping her in the Maclaren, have you thought at all about the social aspects of her being in a stroller rather than a wheelchair at this point? Certainly it's not going to matter somewhere like Disney where loads of kids use strollers even up to 6 or 7. I just know it was harder socially for some of my friends with CP (just using it as an example because it's where I know the most people who couldn't walk as kids) because they didn't get a wheelchair until they were 4 or 5. This meant that in places like preschool they weren't independently mobile when everyone else was and kept them more reliant on other people when they maybe didn't have to be. It's a lot harder to make friends as a kid when there's an adult always around so that you can be pushed somewhere.

I'm an adult, but I can't self-propel my own manual wheelchair much which means any time I go anywhere in it, I have to have someone with me (I own a powerchair, but can't transport it anywhere). This means that for me to go out anywhere larger than about a grocery store, I generally have to have one of my parents with me to push or be with friends willing to push. It makes it harder to meet new people and have any sort of social life (especially a private social life!). I'm lucky in that I can still walk enough that I can do some things on my own, but the entire situation has made me a bit sensitive to the experiences of other people in similar situations and always looking for ways to make things better

Thanks for the advice. We have actually slowly begun the process of researching chairs, etc. Insurance will cover the chair and everything, we are just trying to decide between moving to a special needs stroller versuses first moving to a manual chair (even though there is no way she will be able to self propel (She has spastic quad CP with athetoid characteristics- mixed type). Her PT is strongly suggesting moving to a special needs stroller first, whereas her OT reccomends going straight to a pediatric wheelchair).

Any advice?

Either way, she won't have a chair by the trip in June, but we hope to have it by September when she will start pre-k. (She just turned 4 last month).

 

[Forevryoung]

Thanks for the advice. We have actually slowly begun the process of researching chairs, etc. Insurance will cover the chair and everything, we are just trying to decide between moving to a special needs stroller versuses first moving to a manual chair (even though there is no way she will be able to self propel (She has spastic quad CP with athetoid characteristics- mixed type). Her PT is strongly suggesting moving to a special needs stroller first, whereas her OT reccomends going straight to a pediatric wheelchair).

Any advice?

Either way, she won't have a chair by the trip in June, but we hope to have it by September when she will start pre-k. (She just turned 4 last month).

If insurance is paying for it, it will be several years before they pay for a replacement. A special needs stroller is great at 4 but is it still wonderful at 6, 7, 8?

A close friend chose the special needs stroller option for her daughter and that meant that she didn't get a wheelchair until she was 7.5 or 8. By then, she was waaaay too old to be in a stroller at school.

 

[mommaof3girls]

If insurance is paying for it, it will be several years before they pay for a replacement. A special needs stroller is great at 4 but is it still wonderful at 6, 7, 8?

A close friend chose the special needs stroller option for her daughter and that meant that she didn't get a wheelchair until she was 7.5 or 8. By then, she was waaaay too old to be in a stroller at school.

That is a very good point and something friends have pointed out as well.

What our train of thought is right now is moving to a manual first, then going to a power wheelchair when it's time for a replacement.

The chair we are heavily considering (because it seems to fit her needs well) is an Invacare Orbit tilt in space chair.

Has anyone used this chair for their kiddos?

 

[disneyobessed]

I would go with the stroller. My son had one at the age of 4 as well and we went through 2. He is now 12 and he just got a motorized scooter. He had 2 Convaid Strollers. The second one held up to 100lbs and the wheels were all terrain. It was great but very heavy. He needed and wanted more independence so last year we looked into the scooter and despite the fact he isnt near 100lbs insurance covered it.

 

[SueM in MN]

Thanks for the advice. We have actually slowly begun the process of researching chairs, etc. Insurance will cover the chair and everything, we are just trying to decide between moving to a special needs stroller versuses first moving to a manual chair (even though there is no way she will be able to self propel (She has spastic quad CP with athetoid characteristics- mixed type). Her PT is strongly suggesting moving to a special needs stroller first, whereas her OT reccomends going straight to a pediatric wheelchair).

Any advice?

Either way, she won't have a chair by the trip in June, but we hope to have it by September when she will start pre-k. (She just turned 4 last month).

My DD also is spastic quad - mixed with dystonic movements. When you see her somewhere where her feet are not fastened down, she has a lot of athetoid type movements with her legs. When she is excited, we have legs and arms all over the place - so quite athetoid looking. When she is at rest, she looks much different. Her tone can go from normal to rag doll loose to Barbie doll stiff, all in the course of a few minutes. Most of her doctors have not seen anyone before with as much variation as she has.

She has never gotten to the point of being able to fully propel her manual wheelchair for a whole day without someone pushing her, but is able to self propel for short distances. Like in the house, when we are out if she wants to go up to 10 feet from us. Just being able to do that little bit is very nice for her (she can move around her room and not need to pound on her desk to get us to move her).

THe chair you are looking at is not one she would be able to self propel anyway. It does have a lot more support and seating adjustments available than some of the special needs strollers do.

I would see if you can get the OT and PT together to hash out what would be best. If nothing else, get a ‘advantages/disadvantages’ of each type from both of them.
As others pointed out, whatever you get, she is going to be using it for a pretty long time before it gets replaced.

I know children as young as 3 who have gotten power wheelchairs - power requires a lot of thought. Like, do you have the ability to get it into your house?
What about transporting it? (you can’t just sling it into a trunk or back of a van). Is the inside of your house set up to be able to use a power wheelchair inside?

Even with a power wheelchair, there are times where a manual is needed/better.
There are a lot more options available now than there were when my DD got her first manual and power wheelchairs, so happy hunting.