Tips when traveling with a toddler wheelchair user (CP)?

[rjthkids]

We have done Disney many times, but our next trip is going to be our first one traveling with a pediatric wheelchair. My youngest daughter will still be a bitty thing at only 2 years of age, but she has a multitude of medical issues and a brain malformation called holoprosencephaly. Holoprosencephaly is unfamiliar to most people, but it leads to significant motor impairment seen in moderate to severe cerebral palsy.

At any rate, she has an OttoBock wheelchair/adaptive stroller and it is equipped with tie downs and is obviously safety tested to be tied down in vehicles. Ones this mean that we will be able to have her wheelchair tied down on disney transportation? Technically, she is small enough that I can easily take her out and cradle her in my arms while sitting, but my biggest concern is having to breakdown her wheelchair and haul it on a bus. The thing weighs well over 40 pounds, and have to disassemble and reassemble it every time we got on a bus is not practical. Do I need to bring anything with me in terms of paperwork? I am nervous because she is so little, and her OttoBock is so little, I don't want people mistaking it for a stroller. It has the look of a stroller but it is not. It is a pediatric wheelchair and safety/crash tested as such.

Also, if we are to transfer her out for rides, can we push her wheelchair in line and then have it waiting there for when we get off? She is small enough I can carry her onto most rides, but it is a process to get her in and out so we just some space and time to get her unbuckled and rebuckled, that's all. I can't envision is needing to take her wheelchair directly on a ride so long as she is little enough to be carried, but have others who have BTDT with the tiniest wheelchair users tell me how that has worked for them? Thanks so much!

 

[disney david]

We have done Disney many times, but our next trip is going to be our first one traveling with a pediatric wheelchair. My youngest daughter will still be a bitty thing at only 2 years of age, but she has a multitude of medical issues and a brain malformation called holoprosencephaly. Holoprosencephaly is unfamiliar to most people, but it leads to significant motor impairment seen in moderate to severe cerebral palsy.

At any rate, she has an OttoBock wheelchair/adaptive stroller and it is equipped with tie downs and is obviously safety tested to be tied down in vehicles. Ones this mean that we will be able to have her wheelchair tied down on disney transportation? Technically, she is small enough that I can easily take her out and cradle her in my arms while sitting, but my biggest concern is having to breakdown her wheelchair and haul it on a bus. The thing weighs well over 40 pounds, and have to disassemble and reassemble it every time we got on a bus is not practical. Do I need to bring anything with me in terms of paperwork? I am nervous because she is so little, and her OttoBock is so little, I don't want people mistaking it for a stroller. It has the look of a stroller but it is not. It is a pediatric wheelchair and safety/crash tested as such.

Also, if we are to transfer her out for rides, can we push her wheelchair in line and then have it waiting there for when we get off? She is small enough I can carry her onto most rides, but it is a process to get her in and out so we just some space and time to get her unbuckled and rebuckled, that's all. I can't envision is needing to take her wheelchair directly on a ride so long as she is little enough to be carried, but have others who have BTDT with the tiniest wheelchair users tell me how that has worked for them? Thanks so much!

they will tie it down since you said it has tie down point already you are all set need to break it down she can stay in it or you can take her out and hold her that is up to you. you will still use the back door and the driver will tie the stroller down so don't worry about that. you won't need any thing in terms of paper work maybe just let the driver know it can be tied down but you won't be denied boarding or made to take it apart. the drivers have dealt with them before and should know what to do.

 

[lanejudy]

If I'm thinking of the right piece of equipment, the OttoBock looks a lot like a heavy duty stroller and not much like a pediatric wheelchair. You may want to bring documentation to prove it is approved for transport and tie-down, as the standard policy is that strollers must be folded. I've also read recommendations to use colored tape to clearly mark the tie-down spots so the drivers know exactly the right location and don't end up damaging the frame by tying down in the wrong place.

Also, because it looks much like a stroller, you should stop at Guest Services and get a "stroller-as-wheelchair" tag and GAC. This will allow you to use the stroller in lines and shows where strollers are not usually allowed. You'll need both the tag (like a luggage tag, wraps around the handle or part of the frame) and the GAC for this.

If you can transfer her easily for rides, that's a plus as you won't have to wait for the accessible ride vehicle. CMs will direct you where to park it so you'll have easy access when you get off the ride vehicle.

Enjoy your vacation!

 

[rjthkids]

She has a modified MPS seat on an Otto Bock Kimba Springs base. I don't know if live linking is allowed here, but this is the closest approximation of what we have--- the pictures below the main one, where you can click on them-- the one with the teddy bear is strapped in with a chest enclosure is the closest, but she has a lot more constraints to keep her properly supported http://tadpoleadaptive.com/special-...k-kimba-spring-pediatric-mobility-system.html

I probably will bring the documentation with me, because there is no way I can disassemble/reassemble the thing getting on and off a bus every time. The frame folds but the seat needs to be attached or separated, which leaves me carrying a folded base, a huge, 20+ pound seat and a toddler who needs her head supported.

Brightly colored tape around the tie-downs is a brilliant idea. Thank you!

 

[disney david]

She has a modified MPS seat on an Otto Bock Kimba Springs base. I don't know if live linking is allowed here, but this is the closest approximation of what we have--- the pictures below the main one, where you can click on them-- the one with the teddy bear is strapped in with a chest enclosure is the closest, but she has a lot more constraints to keep her properly supported http://tadpoleadaptive.com/special-needs-strollers/tilt-recline/ottobock-kimba-spring-pediatric-mobility-system.html

I probably will bring the documentation with me, because there is no way I can disassemble/reassemble the thing getting on and off a bus every time. The frame folds but the seat needs to be attached or separated, which leaves me carrying a folded base, a huge, 20+ pound seat and a toddler who needs her head supported.

Brightly colored tape around the tie-downs is a brilliant idea. Thank you!

If you want to bring something you can or just let the driver know when they pull up they do a scan to see if their any wheelchair needing boarding. If it looks like a stroller they may miss by accident not on purpose so just let the driver know. You have a special needs stroller that needs to be tied down. Most will trust you that you know it can be without be damaged but if you want to have something extra you can.


You won't have a problem their are drivers that have tied down special needs strollers that was not meant to and thy got damaged so I don't see them giving you a hard time.

 

[SueM in MN]

Follow the link in my signature to the disABILITIES FAQs thread. Post 6 of that thread is about GACs (Guest Assistance Cards) and has information about using a stroller as a wheelchair.
Because your child's stroller really looks very much like a stroller, you will want to get a GAC and sticker that shows it is being used as a wheelchair.
Basically doing that will allow you to bring it into all attractions and it will be handled exactly like a wheelchair. All attractions (except a couple where guests need to be ambulatory) are wheelchair accessible to the point of boarding.
If you will be boarding in the same place as you unload, it will be right where you left it.
If boarding is in one place and unload is in bother, they will bring it or you and it will be waiting at the exit when you get off.

For the buses, there is information in the disABILITIES FAQs about using buses. The issue I can see is that since it does look like a stroller, you may have some difficulty getting the bus driver's attention. The stroller as wheelchair tag will help, but if you have enough in your party, what works well is to send part of the group up to the door of the bus to let the driver know there is a wheelchair waiting to board.
As for the tiedown loops on the wheelchair, I can see them on the picture you posted. Seem of the companies paint them a bright color so they are easier to find. We had put ribbons on the safe tiedown points on DD's manual wheelchair since it does not have the tiedown points attached. A few years ago, we went to neon colored duct tape instead. It's bright, easy to see and stays exactly where you want the driver to attach.
Even though you have built in loops, I would still recommend using some bright tape on them. It really makes things faster.
The problem with bus drivers is that most would be willing to tie down a regular or special needs stroller that is not meant for transport. So, I really doubt that they would need any proof. My DD's power wheelchair does have built in loops and there is a little label near them that says something about being approved for transport. If yours has that, that should be all you need.
If it doesn't or you feel you need something more, I would copy the page about transport from your owner's manual, laminate it and attach it to the wheelchair with zip ties or something. You may need to shrink it to avoid having it too big.

This is a picture of my youngest DD when she was between 3 and 4 at Caribbean Beach Resort. She has Cerebral Palsy, spastic quad and mixed type with dystonia. Her muscle tone varies from rag doll to Barbie doll. She has a seat belly with extra straps, a supportive seat that kind of circles around her a bit and foot straps to hold her feet down.

She had a more 'traditional' looking wheelchair - just small - with big rear tires and small front tires. We had no problems with CMs because they could see that it was a wheelchair. We did have some trouble with other guests who just saw a small child and assumed what she was sitting in was a stroller.
I have to give DD a shower now, but will write more over the weekend.

 

[rjthkids]

Thanks Sue, that is helpful and I'll look forward to other tips you have to share. Your daughter was (and I'm sure still is!) an absolute *doll*!

The double edged sword of the Otto Bock is that it does look like a stroller. However, we got her first seat when she was 7 months old, and because of her other medical stuff she is T-I-N-Y. She is over one now and still only weighs 12 pounds. The Otto Bock was the only provider that had a base/seat combo small enough for Little Miss Little Bit.

To give people an idea of how she looks in her seat, this is a couple of pictures. I'll take them down later, but this is our setup! The first is in the wheelchair base, and the second is her seat as a hi/lo chair. You can see how *little* she is! No one can believe she is as old as she is when they look at her.



and

 

[livndisney]

Follow the link in my signature to the disABILITIES FAQs thread. Post 6 of that thread is about GACs (Guest Assistance Cards) and has information about using a stroller as a wheelchair.
Because your child's stroller really looks very much like a stroller, you will want to get a GAC and sticker that shows it is being used as a wheelchair.
Basically doing that will allow you to bring it into all attractions and it will be handled exactly like a wheelchair. All attractions (except a couple where guests need to be ambulatory) are wheelchair accessible to the point of boarding.
If you will be boarding in the same place as you unload, it will be right where you left it.
If boarding is in one place and unload is in bother, they will bring it or you and it will be waiting at the exit when you get off.

For the buses, there is information in the disABILITIES FAQs about using buses. The issue I can see is that since it does look like a stroller, you may have some difficulty getting the bus driver's attention. The stroller as wheelchair tag will help, but if you have enough in your party, what works well is to send part of the group up to the door of the bus to let the driver know there is a wheelchair waiting to board.
As for the tiedown loops on the wheelchair, I can see them on the picture you posted. Seem of the companies paint them a bright color so they are easier to find. We had put ribbons on the safe tiedown points on DD's manual wheelchair since it does not have the tiedown points attached. A few years ago, we went to neon colored duct tape instead. It's bright, easy to see and stays exactly where you want the driver to attach.
Even though you have built in loops, I would still recommend using some bright tape on them. It really makes things faster.
The problem with bus drivers is that most would be willing to tie down a regular or special needs stroller that is not meant for transport. So, I really doubt that they would need any proof. My DD's power wheelchair does have built in loops and there is a little label near them that says something about being approved for transport. If yours has that, that should be all you need.
If it doesn't or you feel you need something more, I would copy the page about transport from your owner's manual, laminate it and attach it to the wheelchair with zip ties or something. You may need to shrink it to avoid having it too big.

This is a picture of my youngest DD when she was between 3 and 4 at Caribbean Beach Resort. She has Cerebral Palsy, spastic quad and mixed type with dystonia. Her muscle tone varies from rag doll to Barbie doll. She has a seat belly with extra straps, a supportive seat that kind of circles around her a bit and foot straps to hold her feet down.

She had a more 'traditional' looking wheelchair - just small - with big rear tires and small front tires. We had no problems with CMs because they could see that it was a wheelchair. We did have some trouble with other guests who just saw a small child and assumed what she was sitting in was a stroller.
I have to give DD a shower now, but will write more over the weekend.

Sue she is adorable!!!!

 

[SueM in MN]

She is tiny.

She looks very happy and comfy in her seat though.

It would be helpful to me to know a couple of things to give you more advice on which attractions you might want to keep her in the chair for and which to hold her.
1) How high is she sitting in the chair? Is the set height similar to a regular chirp height - if she's at a table is she the appropriate hight o reach the table?

2) Is her head control pretty good with you holding her against your body on your lap? How about in the chair?

3) Does he need just very gentle rides or does she tolerate and like a little more movement?

Thanks.

 

[SueM in MN]

Sue she is adorable!!!!

Thanks. I will admit to being biased, but she was a pretty cute little pumpkin.

Here's a more recent one with one of her favorite fairies - that picture is almost 3 years old though.

And, one of my favorites, a bit newer:

This also shows Jungle Cruise, which is one I would suggest the OP use the wheelchair boat for.

 

[rjthkids]

Her chair, when on the kimba base is just slightly below regular chair height.

She has pretty decent head control when I hold her supported on my lap or in arms. Her biggest challenge end up being head drop due to fatigue and spasticity when she gets excited. I like how phrased it as "Barbie doll" in terms of rigidity, because that is a perfect descriptor. When she gets excited her tone really kicks in and makes it hard to hold her well. Otherwise, she does very well sitting on my lap with just some gentle pressure/support of her head.

She likes movement!

Thanks for your willingness to help!