Nervous and Excited

[The Sunrise Student]

Hello Everyone,

I am a very experience Disney Traveler finding herself in unfamiliar territory. My wheelchair bound cousin asked me to come on vacation with her and be her helper. My cousin could hire someone and pay their expenses but would rather have a vacation with me and pay my way. I almost wasn’t going to do it with my own family WDW trip planned for in October I was worried about getting the additional time off. But hubby and I talked and he said I should go if I wanted to because my cousin and I rarely get to spend time with each other and this would be perfect. After working out the details at my job I told my cousin to start planning, that I could go.

Now that I have had time to think I am overwhelmed. Do not mistake me here, I still want to go!!!! I love my cousin dearly, I just want to make sure I do this right!!! I want to be a GOOD HELPER and I want her to experence as much of the magic as she can.

Being an experienced traveler I will not be frazzled getting myself together so this is a plus, but I am not naive and do realize I am in new territory here!

I have read through “SueM in MN - FAQ” (THANK YOU SUE!!!! ) and will continue to re-read it, but I still feel like I need more input.

Can those of you whom are helpers or rely on helpers give me tips? Even if it is I hate it when my helper does _______. Or I wish my helper would do ______.

Any advice you are willing to give would be most helpful.

Sincerely Grateful,

 

[Disneylvr]

I know there are lots of people here who will offer you tips but I just wanted to give you a big for being your cousin's "helper" and and also a good friend. This trip will be special for both of you! Enjoy your bonding time together.

 

[The Sunrise Student]

Thank You Disneylvr! I really am looking forward to this trip. I find myself on a roller coaster of excitement and butterfies.

 

[WheeledTraveler]

As someone who has used helpers (not at Disney, but in other situations) I'd say the biggest things I really need from helpers is for them to ask and let me lead. Don't assume I can't do something or don't want to and if I'm the person whose trip it is, let me decide what we're doing. I'm not going to force you onto something you're not comfortable riding, but don't plan my day unless I ask you to.

Otherwise, I'd really ask your cousin what she wants you to do and what she expects and take that as more important than anything the rest of us could say not knowing her or you. I don't know a single person who uses PCAs/carers/helpers in the exact same way as anyone else.

(Also as a side note, I don't know anything about your cousin or her situation, but personally I don't like the term "wheelchair bound". I'm a wheelchair user, but I'm not bound to it or confined to it, instead my wheelchair has opened my world way up and allowed me to experience and do much more than I could without it.)

Have you suggested she look at disboards in case she has any questions herself? Has she been to Disney before?

 

[Cheshire Figment]

One phrase to remember (and say whenever needed) is: "X can hear and talk, why not ask her what she wants or needs!" or similar words to that effect. You will find that (too) many people think that a person in a wheelchair is incapable of mental activity.

 

[The Sunrise Student]

As someone who has used helpers (not at Disney, but in other situations) I'd say the biggest things I really need from helpers is for them to ask and let me lead. Don't assume I can't do something or don't want to and if I'm the person whose trip it is, let me decide what we're doing. I'm not going to force you onto something you're not comfortable riding, but don't plan my day unless I ask you to.

I totally agree, I am there to help her (and enjoy just hanging out with her), if she asks my advice and/or opinion because I am a Experienced Disney Traveler that is one thing, but this is her trip! And since I travel a lot on my own, and plan my own trips to Disney (Including one this October 2010) I think, and I could be wrong here, with me being a person whom has been to Disney several times, and can afford to travel, I think it’s might be much easier for me to let her do what she wants because this isn’t my first Disney Dance.

Otherwise, I'd really ask your cousin what she wants you to do and what she expects and take that as more important than anything the rest of us could say not knowing her or you. I don't know a single person who uses PCAs/carers/helpers in the exact same way as anyone else.

I am so scared that with all my Disney knowledge I will bombard her with too many questions. I do know I want her to tell me what she wants. And I want to make sure she has a good time and that I do what I am suppose to do! The only experience I have had with this sort of situation was in a nursing home when I was younger, and people really liked me, and families would request me, and it made me feel really good! However going to Disney World is an entirely different situation.

(Also as a side note, I don't know anything about your cousin or her situation, but personally I don't like the term "wheelchair bound". I'm a wheelchair user, but I'm not bound to it or confined to it, instead my wheelchair has opened my world way up and allowed me to experience and do much more than I could without it.

It’s very hard to know how to describe situations. As you have said everyone is different. My cousin and I grew up very normal, healthy kids (less than a year apart). Her situation came upon her as an adult. She is a very educated person, was before her situation changed and still has every bit of her mental capacity she ever did, extremely intelligent. So when I described her as wheelchair bound it was merely because she must uses one, and must use one, she can not walk and will need me to transfer if she chooses to do so. And she has indicated that she would transfer if she wanted to ride something, so I am just trying to prepare, and maybe I am over nervous, and an over planner, which I know I am, I live by planners or PDAs or my outlook calendars! All I know is that I am very eager to get it right. To me helping her on this trip feels like a once in a life time vacation the two of us can share.

Have you suggested she look at disboards in case she has any questions herself? Has she been to Disney before?

She has been to Disney before but for a long weekend type trip, this time it will be a 7 day trip with two of them being travel days. She has mentioned some things she liked from her last trip. But we have just started planning this trip, she just asked me this week, and I just told her yesterday day that I could go… so, I am sure there will be more conversations to come. I have offered to send her links to the DISboards and have mentioned I read them A LOT.

 

[The Sunrise Student]

One phrase to remember (and say whenever needed) is: "X can hear and talk, why not ask her what she wants or needs!" or similar words to that effect. You will find that (too) many people think that a person in a wheelchair is incapable of mental activity.

That is a good point and I will make sure when someone asks me something (if I know my cousin has heard them) I will look straight my cousin and see that she is the one that answers them. Or I will state it as you have suggested, after all she knows best what she needs!

 

[goofieslonglostsis]

While I can totally see where you are coming from and it's with all the best intentions and love, this topic isn't the place to ask the question you asked. Not for what you are looking for with your intentions. You only have to ask 1 person; your cousin.

Every person is different. What one loves can be hated by another and vice versa. One person is annoyed if another person didn't simply 'smell' the can't open a door themselves and let them struggle before helping, another person gets furious if another person always does everything not allowing them to try and ask/get help if failing to succeed. One person is hyper on "I'm independent", another person kinda likes to lean back and be pampered a bit. It takes all kind of folks.

She is the one person that can tell you what to expect. Simply be frank. She's your cousin and asked you on this trip as both a companion and help. She wouldn't do that if she didn't think you're a valued person in her live. Asking somebody for help, she should be very capable of answering your question and appreciate you being frank.

Simply sit down, and talk to her. Great to be going with you cous, looking forward to it. What do you expect of me, what to do and what not to?

She can also tell you if she likes being bombarded with WDW info or not. If she claims she does; warn her once. She's still up to it? Her risk to take. (I'm one of those that can bombared )

Have fun!

 

[BillSears]

It’s very hard to know how to describe situations. As you have said everyone is different. My cousin and I grew up very normal, healthy kids (less than a year apart). Her situation came upon her as an adult. She is a very educated person, was before her situation changed and still has every bit of her mental capacity she ever did, extremely intelligent. So when I described her as wheelchair bound it was merely because she must uses one, and must use one, she can not walk and will need me to transfer if she chooses to do so. And she has indicated that she would transfer if she wanted to ride something...

I prefer the term wheelchair user. I'm a paraplegic who can't walk and must do transfers to get out of my chair. But I'm not wheelchair bound, I'm not forced to stay in it 24 hours a day. That would be like calling someone who drives Car Bound. My wheelchair is my form of transportation. But it's not me.

 

[KPeveler]

I prefer the term wheelchair user. I'm a paraplegic who can't walk and must do transfers to get out of my chair. But I'm not wheelchair bound, I'm not forced to stay in it 24 hours a day. That would be like calling someone who drives Car Bound. My wheelchair is my form of transportation. But it's not me.

I agree - And to the OP - I was a healthy child too - my condition also happened as an adult. In general, I think the term that best describes most wheelchair users is "full-time wheelchair user." This says she must use the chair, but she is not "bound" by anything.

I am anything but "bound" and when I get my new powerchair, I will have even more freedom!

 

[The Sunrise Student]

I think I might need to state my questions better, because yes everyone is correct my cousin is the only one who can really tell me what she wants, and what hurts if I move her certain ways, how she likes to be transferred, and if she likes to be pampered or let be to do it herself.

However, although my cousin can tell me all of her needs the real question I guess would be what obstacles at WDW would you find more difficult than others for both my cousin and myself as her Helper? What way of being transferred into certain rides or situations did you find best? What lessons learned can you tell me? Statements like “I’ll never try ____ that way again!” or “It was easier when we did something this way…”

As for my incorrect use of terminology, my sincerest apologies to all. To me when I talk to my cousin, or see her she is just my cousin, I never describe her any other way than call her by her name, because that is who she is. I was merely trying to paint a picture of the situation and the possible obstacles ahead of us, nothing more. I’m sorry

 

[KPeveler]

I think I might need to state my questions better, because yes everyone is correct my cousin is the only one who can really tell me what she wants, and what hurts if I move her certain ways, how she likes to be transferred, and if she likes to be pampered or let be to do it herself.

However, although my cousin can tell me all of her needs the real question I guess would be what obstacles at WDW would you find more difficult than others for both my cousin and myself as her Helper? What way of being transferred into certain rides or situations did you find best? What lessons learned can you tell me? Statements like “I’ll never try ____ that way again!” or “It was easier when we did something this way…”

As for my incorrect use of terminology, my sincerest apologies to all. To me when I talk to my cousin, or see her she is just my cousin, I never describe her any other way than call her by her name, because that is who she is. I was merely trying to paint a picture of the situation and the possible obstacles ahead of us, nothing more. I’m sorry

I guess we need to know more about her abilities and needs. Saying 'she is in a wheelchair" does not tell us much... Can she stand at all? Can she walk a step or two or a few? Does she do a slide transfer or a stand a pivot transfer?

I use a wheelchair I can do a "stand and pivot" transfer, and I used to use a wheelchair but I could still do a few steps. Bill uses a wheelchair but cannot walk at all.

How is her trunk control? Can she sit up out of her wheelchair? Does jerking motion really bother her?

Lots of us have different needs and disabilities, but I cannot tell you much about what "I would never do again" or something unless we have a little more information about her needs...

 

[OneLittleSpark]

Hey there, and welcome to the world of WDW with a disability . Firstly, DON'T PANIC!! Disney are absolutely wonderful about disabilities, and it's the one place where I no longer feel 'disabled'. You don't need to worry about whether you'll be able to get here, or go there - you just know that it will be fine!

I'll start off by loading you up with resources (I'm a 'planner' too, and I like nice websites filled with information!). The Mouse on Wheels is a great site, and describes the transfers in a fair bit of detail, which will probably be very helpful for you as a 'first timer'. You'd also do well to look at the All Ears photo gallery, as this can let you both see what you'll be dealing with.

For a lot of rides and all the shows your cousin will be able to stay in her chair. The maps have symbols for each attraction showing how it is accessed for people with mobility issues. They've got a lot of really cool ride cars that let you roll the chair straight on (can you tell I'm an engineer? ).Try and spread the trickier transfers out over the trip, and use the non-transfers as a break between them. I'm partially mobile, and can manage to transfer myself with a person on hand if I need them, but I find frequent transfers are exhausting; as you're new to this, you may find it pretty tiring at first.

Make sure when you book the room that you ask for one with a roll-in shower. There are two types of wheelchair accessible rooms, one with a tub one with a shower you can roll the chair into, and I think the latter would suit her better.

Good luck and I hope you guys have a great trip!

 

[The Sunrise Student]

I guess we need to know more about her abilities and needs. Saying 'she is in a wheelchair" does not tell us much... Can she stand at all? Can she walk a step or two or a few? Does she do a slide transfer or a stand a pivot transfer?

I use a wheelchair I can do a "stand and pivot" transfer, and I used to use a wheelchair but I could still do a few steps. Bill uses a wheelchair but cannot walk at all.

How is her trunk control? Can she sit up out of her wheelchair? Does jerking motion really bother her?

Lots of us have different needs and disabilities, but I cannot tell you much about what "I would never do again" or something unless we have a little more information about her needs...

My Cousin can sit forward and has pretty good control of her trunk. She is very thin, in fact we have been known to say she needs a sandwich, but she has always been concerned with putting too much strain on her helpers so lifting her shouldn't be hard, I am a fairly strong person. Where my concerns are is when I have to pivot with her to put her into a ride that I worry about the most, making sure I don't misstep in ride areas that are tricky is what concerns me. She has some control of her legs but not any weight baring ability.

I hope I am answering you correctly, is there a certain term I should ask her?

When you are asking me if Jerking bothers her, are you refereing to me lifting and jerking or rides?

As for me, I am rather tall with extremely long arms and legs, so reach isn't to much of a problem, I hope, not sure about all that when it comes to rides/ride areas.

I am also going down to where she lives the day before to get farmiliar with her routine and then we will be flying out from her location.

 

[KPeveler]

My Cousin can sit forward and has pretty good control of her trunk. She is very thin, in fact we have been known to say she needs a sandwich, but she has always been concerned with putting too much strain on her helpers so lifting her shouldn't be hard, I am a fairly strong person. Where my concerns are is when I have to pivot with her to put her into a ride that I worry about the most, making sure I don't misstep in ride areas that are tricky is what concerns me. She has some control of her legs but not any weight baring ability.

I hope I am answering you correctly, is there a certain term I should ask her?

When you are asking me if Jerking bothers her, are you refereing to me lifting and jerking or rides?

As for me, I am rather tall with extremely long arms and legs, so reach isn't to much of a problem, I hope, not sure about all that when it comes to rides/ride areas.

I am also going down to where she lives the day before to get farmiliar with her routine and then we will be flying out from her location.

On a lot of rides she can take the wheelchair right on, so she no worry about transfers there.

If she has good trunk control and can handle a jerky ride, there will probably be little she cannot do because of disability. It sounds like Peter Pan and TTA will be out, because these rides cannot be stopped, and you cannot take the wheelchair right up next to the ride.

Also you will go in the exit of the HM and not do the stretching room...

My suggestion is to ask her how best to get her into ride cars (I believe there are photos on allearsnet.com of all the ride vehicles), and then practice in her home. Pull her chair up to a couch or kitchen seat and see what she needs.

Overall, take your time... they can stop the ride to give you more time...

I suggest getting a copy of Passporter's Open Mouse, a very valuable guide for Disney and people with disabilities...

 

[The Sunrise Student]

For a lot of rides and all the shows your cousin will be able to stay in her chair. The maps have symbols for each attraction showing how it is accessed for people with mobility issues. They've got a lot of really cool ride cars that let you roll the chair straight on (can you tell I'm an engineer? ).Try and spread the trickier transfers out over the trip, and use the non-transfers as a break between them. I'm partially mobile, and can manage to transfer myself with a person on hand if I need them, but I find frequent transfers are exhausting; as you're new to this, you may find it pretty tiring at first.

Your tip about spacing out rides that require transfers is a GOOD idea , I will have to do my homework and make sure I know which is which so that we/she can plan that out.

Pst.... I'm a Network Engineer and work with alot of Engineers!

Make sure when you book the room that you ask for one with a roll-in shower. There are two types of wheelchair accessible rooms, one with a tub one with a shower you can roll the chair into, and I think the latter would suit her better.

My cousin just e-mailed me our reservations and she has already booked our flight and room. We are staying a Port Orleans River Side and it does have a roll in shower!!! I have never stayed at Port Orleans, and I have never used magical express, nor relied on the Disney transport so I will need lots of advice there!

I will be check out those websites you listed directly. I had seen some of the pictures on allearsnet before but never paid attention to them for this type of detals.

Thanks

 

[The Sunrise Student]

I suggest getting a copy of Passporter's Open Mouse, a very valuable guide for Disney and people with disabilities...

I will be sure to pick this up! My DH and I always pick up the "Unoffical Guide" as a yearly treat for ourselves whether we are going or not that year, I know we are terrible! In any event, we are pretty good about taking in guide books and seeing what best fits us

Thank you!

 

[OneLittleSpark]

My Cousin can sit forward and has pretty good control of her trunk. She is very thin, in fact we have been known to say she needs a sandwich, but she has always been concerned with putting too much strain on her helpers so lifting her shouldn't be hard, I am a fairly strong person. Where my concerns are is when I have to pivot with her to put her into a ride that I worry about the most, making sure I don't misstep in ride areas that are tricky is what concerns me. She has some control of her legs but not any weight baring ability.

For a lot of the rides, you will be able to work together to do a slide transfer. To do this, park the chair up right next to the ride car, so it's facing the same way as the ride seat. She will then be able to shuffle sideways on the the seat, with you assisting as necessary. By the sounds of it, she has fairly good upper-body mobility, so should be able to assist you in the transfer by using her arms.

Some of the rides that do not have wheelchair-accessible ride cars, have ones that have been modified to make a slide transfer easier. They will have a low cut side on them, so that there is no wall between the wheelchair and the ride seat. The ones that I can recall off the top of my head are HM, EE and Spaceship Earth, but I'm pretty sure there are others too. Do ask about these at each ride, as there is only usually one or two of these cars per ride, and I think they'll be a big help to you.

I know that some of the rides with trickier transfers have practice cars tucked away somewhere, which would allow you to work out the best way to do the transfer, without any time pressures. You probably won't need to do this on every ride with a test car, but things like Space Mountain, that have tricky transfers and very tight dispatch windows, this would be a help (does SM have a test car, anyone?).

For Test Track, load at the seatbelt check point, rather than the regular loading bay. They may ask you whether you want to do it, but if they don't, you can ask for it yourself. This makes the transfer easier, as it's more like a transfer into a bath, whereas the standard loading bay is a step down in to it.

K's suggestion of practicing before your trip is a good one!

Your tip about spacing out rides that require transfers is a GOOD idea , I will have to do my homework and make sure I know which is which so that we/she can plan that out.

I've learnt this one the hard way ! A lot of the newer rides will have easier transfers than the older ones, which means that MK will probably be your most tiring park. I know that Pirates and Space Mountain are both tricky, though Pirates is easiest if you sit in the back row of the boat (the seat is a bit higher there, so it's an up-and-over transfer, like a tub). You'll need to make a pact between you, that neither of you will try to 'soldier on' when they're tired; if things are getting too much for either you, make sure you say. There's no point in running yourself into the ground on the first day, and then no being able to enjoy the rest of the trip because you're so tired.

Pst.... I'm a Network Engineer and work with alot of Engineers!

What is it with us Engineers and planning?!

My cousin just e-mailed me our reservations and she has already booked our flight and room. We are staying a Port Orleans River Side and it does have a roll in shower!!! I have never stayed at Port Orleans, and I have never used magical express, nor relied on the Disney transport so I will need lots of advice there!

Just to be on the safe side, you'll probably want to phone them a few times between now and leaving (e.g. a month before, a week before, and the day before) to make sure that they've got that room blocked off for you. They're very good about this, but mistakes and glitches can happen, and it would be awful to find out when you arrived that there was no room available . If she needs any special equipment, such as a hoist, in the room, you can arrange with external rental companies to deliver them to your hotel.

Magical Express is great! They have some coaches with wheelchair lifts and tie-down points, so she can stay in her chair all the way there. They will collect your bags for you (you get special tags to put on them before you travel) on US flights, and deliver them to your room after you've arrived, which is one less thing to worry about.

I will be check out those websites you listed directly. I had seen some of the pictures on allearsnet before but never paid attention to them for this type of detals. QUOTE]

They're both really good websites, and make it a lot easier to plan things. I can understand how daunting it can be to do Disney with a disability for the first time, even for a Disney pro like yourself, and hopefully being prepared will help relieve some of this stress. If you have any more questions, even if they seem silly to you (we've all been there!), please do ask!

Have a great trip!

 

[OneLittleSpark]

A few random things I thought of since last posting...

If she needs assistance transfering to and from a toilet, you will need to use the companion restrooms. These are located around all of the parks, though aren't at every restroom location. I think they are shown on the map for Guests with disabilities, or you can find a full list here. All of the regular restrooms have a larger cubicle, though I've found some of them to be a very tight squeeze by myself, in a small-ish manual chair. Be warned that you may well have to queue for any of the accessible toilets (whether the larger cubicle in the regular restroom, or the companion restrooms), so make sure you go in plenty of time.

When you're watching parades, and the Illumination show at EPCOT, you can use the wheelchair viewing areas. These are roped off areas along the parade route (or around the lake), that are manned by CMs, reserved for wheelchair users and their parties' (marked on the maps). They can fill up just as quickly as the regular curb spots, so get there early, but they will stop anyone coming along and standing in front of your cousin (yup, some people really are that dumb!). My favourites are Liberty Square in MK; the spots between Future World and World Showcase in EPCOT (either side); and Discover Island, near Pizzafari in AK.

 

[The Sunrise Student]

A few random things I thought of since last posting...

If she needs assistance transfering to and from a toilet, you will need to use the companion restrooms. These are located around all of the parks, though aren't at every restroom location. I think they are shown on the map for Guests with disabilities, or you can find a full list here. All of the regular restrooms have a larger cubicle, though I've found some of them to be a very tight squeeze by myself, in a small-ish manual chair. Be warned that you may well have to queue for any of the accessible toilets (whether the larger cubicle in the regular restroom, or the companion restrooms), so make sure you go in plenty of time.

When you're watching parades, and the Illumination show at EPCOT, you can use the wheelchair viewing areas. These are roped off areas along the parade route (or around the lake), that are manned by CMs, reserved for wheelchair users and their parties' (marked on the maps). They can fill up just as quickly as the regular curb spots, so get there early, but they will stop anyone coming along and standing in front of your cousin (yup, some people really are that dumb!). My favourites are Liberty Square in MK; the spots between Future World and World Showcase in EPCOT (either side); and Discover Island, near Pizzafari in AK.

Thank you for all these, Great infor this post and all your other posts!