Ahhhh... I am overwhelmed and panicking a bit. Disney with my son in a wheelchair

[BrettS]

So as a bit of a back story, I live in the Orlando area and consider myself a bit of a Disney veteran. My family has had annual passes for a number of years and we would typically go to one of the parks at least once a month, and often more frequently. I consider myself pretty good at throwing together a Disney plan at the last minute or even going to the parks and having fun without much of a plan at all.

However, life changed for my family at the beginning of this year when my 14 year old son was diagnosed with AFM and was completely paralyzed from the shoulders down. In the months since the initial onset he has been going to physical therapy every day and he has been regaining some movement in his hands and arms and getting some trunk control, but right now he still can’t move his feet or legs at all. He is in a power wheelchair that he can control with a joystick.

My parents and my brother and his family are coming to visit soon and they plan to spend some time at Disney. I am planing to stay at Saratoga Springs with the kids (my 14 year old in the wheelchair and his 12 year old brother) for 4 nights over labor day weekend so they can spend some time with the extended family.

In the past I wouldn’t really spend a lot of time planning for a trip like this... I’d let my brother and his family plan out the dining and the fast passes and such and we would just do what they wanted to do. My kids have always been OK with this since we live in the Orlando area and we can always go back and do the things that they want to do at another time.

However, this is going to be the first trip we’ve taken to Disney since my son has been in the wheelchair and I’ve gotta admit that I’m kind of panicking a bit because I really don’t know what to expect or where we might run into difficulties. Additionally I want to make sure that he has fun and doesn’t feel left out or anything. This is really going to be our first major outing since everything happened and I want to make sure that he wants to go out and do other things in the future as well.

So all that said, I don’t even know if I know the right questions to ask, but in no particular order, here are some of my questions -

1 - I don’t know that we really need a DAS pass. As I said above, he’s in an electric wheelchair. He cannot walk or move on his own at all. It is possible to transfer him from the wheelchair, but it is not quick or easy and it requires that his wheelchair be positioned right next to whatever he is going to be transferred into. He can’t take even a single step on his own and requires someone (me) to physically lift and move him. He also needs to be catheterized about every 4 hours. He needs help with this, but I’m thinking that we should be able to do this in the family restrooms. Is there anything that a DAS pass might be able to help us with that I’m not thinking of?

2 - Transferring onto rides... For rides where he would need to be transferred is it possible to get his wheelchair right up to the ride? Looking at the disney mobility disability website it mentions that some rides, such as rockin roller coaster have a “transfer device” available, but it doesn’t really say what the transfer device is. Does anyone have any experiences with those transfer devices?

3 - I’m sure there are going to be some rides that he is not able to do or be transferred on to. Any ideas for things that he and grandma (since she doesn’t usually ride the thrill rides anyway) could do while they are waiting for the rest of the group. Obviously just spending his time sitting and waiting in the hot sun while the rest of the family has fun will probably not be a good experience for him.

4 - What else am I missing? Anything I should or shouldn’t do? Any general tips?

Thanks much

 

[SueM in MN]

Can’t write much now, but will tonight.

We travel with my daughter in a manual wheelchair. (She has power at home, but we’ve never brought to WDW).
She needs to be lifted into attractions by us because she can’t transfer herself.
The transfer devices are mostly useful for paraplegics or people who can transfer themselves, but are unsteady.
Some have extensions to the ride seat that someone who can transfer themselves can use as a bridge between their wheelchair and the seat. Some have a transfer tier (I call bump steps) that someone transfers to sit on the step closest to the wheelchair then bumps up or down the steps to get in/out.
The ones that are useful are attractions with wider opening doors and more space for transferring.

My daughter is catheterized every 4 hours. You can use the Companion Restrooms or First Aid. You may have a long wait for the Companion Restrooms. We try to avoid using them in MK because people with children have been incredibly rude to us there - they assume they are just for families and we’ve been yelled at for using ‘their’ restrooms.
It’s mostly a MK thing.

 

[gap2368]

So as a bit of a back story, I live in the Orlando area and consider myself a bit of a Disney veteran. My family has had annual passes for a number of years and we would typically go to one of the parks at least once a month, and often more frequently. I consider myself pretty good at throwing together a Disney plan at the last minute or even going to the parks and having fun without much of a plan at all.

However, life changed for my family at the beginning of this year when my 14 year old son was diagnosed with AFM and was completely paralyzed from the shoulders down. In the months since the initial onset he has been going to physical therapy every day and he has been regaining some movement in his hands and arms and getting some trunk control, but right now he still can’t move his feet or legs at all. He is in a power wheelchair that he can control with a joystick.

My parents and my brother and his family are coming to visit soon and they plan to spend some time at Disney. I am planing to stay at Saratoga Springs with the kids (my 14 year old in the wheelchair and his 12 year old brother) for 4 nights over labor day weekend so they can spend some time with the extended family.

In the past I wouldn’t really spend a lot of time planning for a trip like this... I’d let my brother and his family plan out the dining and the fast passes and such and we would just do what they wanted to do. My kids have always been OK with this since we live in the Orlando area and we can always go back and do the things that they want to do at another time.

However, this is going to be the first trip we’ve taken to Disney since my son has been in the wheelchair and I’ve gotta admit that I’m kind of panicking a bit because I really don’t know what to expect or where we might run into difficulties. Additionally I want to make sure that he has fun and doesn’t feel left out or anything. This is really going to be our first major outing since everything happened and I want to make sure that he wants to go out and do other things in the future as well.

So all that said, I don’t even know if I know the right questions to ask, but in no particular order, here are some of my questions -

1 - I don’t know that we really need a DAS pass. As I said above, he’s in an electric wheelchair. He cannot walk or move on his own at all. It is possible to transfer him from the wheelchair, but it is not quick or easy and it requires that his wheelchair be positioned right next to whatever he is going to be transferred into. He can’t take even a single step on his own and requires someone (me) to physically lift and move him. He also needs to be catheterized about every 4 hours. He needs help with this, but I’m thinking that we should be able to do this in the family restrooms. Is there anything that a DAS pass might be able to help us with that I’m not thinking of?

2 - Transferring onto rides... For rides where he would need to be transferred is it possible to get his wheelchair right up to the ride? Looking at the disney mobility disability website it mentions that some rides, such as rockin roller coaster have a “transfer device” available, but it doesn’t really say what the transfer device is. Does anyone have any experiences with those transfer devices?

3 - I’m sure there are going to be some rides that he is not able to do or be transferred on to. Any ideas for things that he and grandma (since she doesn’t usually ride the thrill rides anyway) could do while they are waiting for the rest of the group. Obviously just spending his time sitting and waiting in the hot sun while the rest of the family has fun will probably not be a good experience for him.

4 - What else am I missing? Anything I should or shouldn’t do? Any general tips?

Thanks much

I am so sorry to hear about what happened to your son

so to answer your question

1 If his only need is that he has to be in his wheelchair then no he will not need a DAS pass. all the parks have a first aid where if you need to you cn Cath him there it might be easer for you and him as fair as the transfer device I think it is more for people to transfer them self there should be youtube video on then some where, I can look. All the DAS pass dose is let you wait out side the line it does not make your wait shorter at all ( in fact it can make it longer) it will not stop the moving walkways you will need to let the CM know you need it stoped or they should offer it to you ( Peter Pan and the people move can not be stoped)

2 for the most part yes you can get his wheelchair right up to the ride and someone would have to lift him and and out of the ride ( I would ask the CM at the ride entrance to make sure you can do this.

3 they could do a show close by like if he can not do space motion maybe the two of them do master taught floor or get a special treat ( Ice cream ) maybe shop for a little if he is into pins they could trade pins with CM, see if there is a showing on like at EPCOT the jammier are quite entertaining or at HS the citizens of Hollywood something special make it fun for him something he

 

[geek+nerd]

Would he be into Sorcerers of the Magic Kingdom? You can make sure to pick up some cards at the fire station at the start of your day, and then he and grandma can do the windows near whatever attraction you’re on that he can’t do.

 

[Disneyfan754321]

Have you looked into getting him a wish granted he should qualify. I know this is off topic soery

If i were you i would still get the das, gets you up the exits and gives you a reason (like you need one ) to take more time. You dont have to use it.

 

[DisneyOma]

Have you looked into getting him a wish granted he should qualify. I know this is off topic soery

If i were you i would still get the das, gets you up the exits and gives you a reason (like you need one ) to take more time. You dont have to use it.

Actually, the DAS does not get you in through the exit. It gets you in the FP queue after you wait the standby time. The OP does not say the child cannot wait in a queue, so would not be eligible for DAS, IMO.

 

[gap2368]

Have you looked into getting him a wish granted he should qualify. I know this is off topic soery

If i were you i would still get the das, gets you up the exits and gives you a reason (like you need one ) to take more time. You dont have to use it.

He might not qualify for a wish trip it really depends on where you live I know in my area they are very strict on giving wishes out but in other place not so much much

The DAS dose not let you go in the exit ( a few rides for people in wheelchair do go in the exit for) but having the DAS dose not. OP if you feel your son could use the DAS you will need to exsplain his need that has to do with waiting in the line that dose not have to do with mobility problems

 

[bopper]

@BrettS How did it go? What was your son able to do?

 

[Groot]

So all that said, I don’t even know if I know the right questions to ask, but in no particular order, here are some of my questions -

1 - I don’t know that we really need a DAS pass. As I said above, he’s in an electric wheelchair. He cannot walk or move on his own at all. It is possible to transfer him from the wheelchair, but it is not quick or easy and it requires that his wheelchair be positioned right next to whatever he is going to be transferred into. He can’t take even a single step on his own and requires someone (me) to physically lift and move him. He also needs to be catheterized about every 4 hours. He needs help with this, but I’m thinking that we should be able to do this in the family restrooms. Is there anything that a DAS pass might be able to help us with that I’m not thinking of?

2 - Transferring onto rides... For rides where he would need to be transferred is it possible to get his wheelchair right up to the ride? Looking at the disney mobility disability website it mentions that some rides, such as rockin roller coaster have a “transfer device” available, but it doesn’t really say what the transfer device is. Does anyone have any experiences with those transfer devices?

3 - I’m sure there are going to be some rides that he is not able to do or be transferred on to. Any ideas for things that he and grandma (since she doesn’t usually ride the thrill rides anyway) could do while they are waiting for the rest of the group. Obviously just spending his time sitting and waiting in the hot sun while the rest of the family has fun will probably not be a good experience for him.

4 - What else am I missing? Anything I should or shouldn’t do? Any general tips?

Thanks much

1-The DAS might be able to save you a spot in line should you need to do something for him at that time.

2- My guess to the transfer device would be with the the Star Wars ride they have an aisle wheelchair, like what you see on airplanes. Also, for the Star Wars ride, there’s a ride vehicle that’s designated for handicap needs. As to the other rides, that transfer device might be something like a patient lift.

3- You guys could do some shopping. (especially since all Disney rides lead out into a gift shop anyway, lol.) Plus, most rides are inside buildings too.

 

[DisneyOma]

1-The DAS might be able to save you a spot in line should you need to do something for him at that time.

Why would that be a reason to be given a DAS? That could be an issue for anybody, right?

 

[gap2368]

1-The DAS might be able to save you a spot in line should you need to do something for him at that time.

No the DAS dose not save your place in line it lets you wait your time, but the last 10 or so minutes , outside the line. If you need to leave the line talk to the CM. When I was getting on RNR the guest I front of me go to where you wait for the next train ( I was in the front row line) when they had to use the bathroom. The CM should then the exit and then had another CM call over to the exit to
Let them know to let them back in. They also told the guest to let the CM know At the exit that they were going to get on but had to use the bathroom and they would let them back on the exit.

 

[seashoreCM]

(snip) ... So all that said, I don’t even know if I know the right questions to ask, but in no particular order, here are some of my questions -

1 - I don’t know that we really need a DAS pass. (snip)

Between (not during) two of those sleeps before the big day heading down, let me send you on a journey into your imagination.

Imagine that you are strolling through the park one day (in the merry month of May) following (or leading) DS as he manipulates the joystick on his ECV. Imagine every move, every sight, every sound, etc.

Where, in your imagination, might you hit a snag? Can you figure out a workaround without DAS? Write it down.

Having to stop and wait some number of minutes or slow to a crawl for some number of minutes and then move on along the same intended path normally, does not all by itself count as a snag.

This exercise should be enough to figure out whether you need DAS. Note: One purpose of DAS is to eliminate the desire to have CMs in a ride area escort you to a rest room and back.

I will add a few things.

45. Go ahead and use companion rest rooms if you can, and ignore what anyone else says. Two people can constitute or comprise a family although you may find a third member handy to help lift DS onto the toilet.

46. You can catheterize before the 4 hour scheduled time to synchronize with arriving at a ride and waiting in the line.

47. If you ask for DAS, start by very briefly describing the issue or snag or problem without using any medical terms. Then say that you think that DAS will solve the problem without restating what DAS consists of. and not adding any coarse or fine details.

 

[SueM in MN]

Between (not during) two of those sleeps before the big day heading down, let me send you on a journey into your imagination.

Imagine that you are strolling through the park one day (in the merry month of May) following (or leading) DS as he manipulates the joystick on his ECV. Imagine every move, every sight, every sound, etc.

Where, in your imagination, might you hit a snag? Can you figure out a workaround without DAS? Write it down.

Just to clarify, ECVs are power mobility scooters and don’t have joysticks. Power wheelchairs are controlled by joystick.

The accommodation provided by DAS is ability to wait outside of lines; any ‘snags’ outside of the actual line are not things DAS can assist with.
DAS is for people whose disability prevents them from waiting in the regular lines. So, the question is not ‘what snags’, but what prevents the Guest from being able to wait in the regular line.

Having to stop and wait some number of minutes or slow to a crawl for some number of minutes and then move on along the same intended path normally, does not all by itself count as a snag.

This exercise should be enough to figure out whether you need DAS. Note: One purpose of DAS is to eliminate the desire to have CMs in a ride area escort you to a rest room and back.

CMs do not escort guests in a ride area to rest rooms and back.
ANY guest who needs to leave the line to use the rest room should talk to a CM before leaving, if possible. The CM may have some advice for getting back into line - for example, at Flights of Passage at Animal Kingdom, CMs can provide line passes to use the restroom and return.

I will add a few things.

45. Go ahead and use companion rest rooms if you can, and ignore what anyone else says. Two people can constitute or comprise a family although you may find a third member handy to help lift DS onto the toilet.

46. You can catheterize before the 4 hour scheduled time to synchronize with arriving at a ride and waiting in the line.

That is literally what Companion Restrooms are for - people who need someone else in the restroom to assist them or need the facilities in the Companion Restroom - extra space, a sink in the same room as the toilet.
Just to clarify for people who don’t have experience with catheterization, the person doesn’t need to transfer to the toilet for catheterization. They just need to be able to uncover the necessary parts of their anatomy to do the catheterization.
Most people schedule to catheterize every 3.5 to 4 hours during waking hours, but can do it at any time period. We frequently do our daughter’s earlier if the next scheduled time is not going to be convenient. When we are out, I usually set a timer for about 3.5 hours after the last catheterization. That gives time to get from wherever we are to the restroom and wait a bit if we need to.

47. If you ask for DAS, start by very briefly describing the issue or snag or problem without using any medical terms. Then say that you think that DAS will solve the problem without restating what DAS consists of. and not adding any coarse or fine details.