Advice needed - traveling to WDW with my severely mentally disabled brother

DisneyOma said:
Definitely get a wheelchair from an offsite vendor for your brother, and then tell him it's his safe spot and that if he feels like stuff is too much, he can sit in his chair. How is he with waiting his turn? I know you said he likes to interact with people and doesn't recognize social cues, but does he understand waiting? There are social stories available to help people with mental/social disabilities understand scenarios that might come up. Other posters here may have an idea what to google? Things that can cause concerns - thunderstorms, rides closing down just before you get on, long waits to get food, loud noises in big food courts, sound effects on some rides and shows, crowds after a parade or fireworks, long lines at the monorail, etc. Sadly, you can't walk from the parks to the Poly, so you have to depend on the monorail and ferries. Is he ok on a boat?

It's great that you have so much support from your family! Would your mom consider getting an ECV instead of a wheelchair? Of course, if you have lots of family members going, you'll have plenty of push-power, unless there are a lot of strollers too?
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He loves boats! That's one area our family agrees on. We grew up fishing for our dinner and Markie was the first to volunteer. Although we will need to let him know he doesn't have to wear a life jacket on the ferry!

Thank you for the ECV idea. That's a great idea! We will have push power (all kids are out of strollers - all but Markie from that photo just went to Japan for my youngest brother's wedding and we all walked. Only Mom was winded though.) but either way, I'm taking another posters suggestion of gloves.

Good point on the food courts. I'll make sure to review the best places for him and take him there at off times. I personally like 11:15 am at Columbia Harbour house on the second floor (hopefully the wheelchair can be parked with the strollers.)
 
Yes, you can park wheelchairs with the strollers in most places. One of the places that does not like the wheelchairs with the strollers is in Animal Kingdom on Kilimanjaro Safaris. They have a separate area for parties with wheelchairs /ECV's.
 
My advice is to go and forget what anyone around you is seeing or saying.

My mother had vascular dementia and traveling anywhere with her required lots of planning. She could walk but we needed a way to contain her so we always used a wheel chair. She reached a point where she liked the wheel chair and enjoyed doing 360's and going fast down hills. He learned she had to stay seated unless we were helping her out of it.

We used the GAC pass at the time and now you should get a DAS. We needed one to keep her waiting away from other people. You never knew what she would say or do. She would swear and make very rude insulting comments to people near her. This is something she would have never done before her disease. If someone got in her way it could be very messy. At Candle Light Processional one year she grabbed a male CM in a certain place because he blocked her view. It was not pretty. She was a biter, and got me several times when I was trying to get her meds in her. I am sure people around us were horrified but it was normal for us. It was not all bad and I do not want it to sound that way. My mom loved every aspect of Disney including the coasters and TOT and rode them into her 90's!

We did learn several things. We needed that wheelchair for everything not just the parks. We needed to be aware of the view that she was getting from the wheelchair as there were times we could see well and her view was other peoples butts. We learned to always get at least a second floor room. She escaped from a main floor room at Beach Club one day as we were checking in. Before we noticed she was gone she had made it almost all the way to the lighthouse docks. We immediately had them switch us to a second floor room. We always hung bells on the door to the room so we could hear if she went wandering. I always carried a change of cloths and often put the bag in the park lockers. Changes in diet, activity and sleeping often made for accidents. We took advantage of deluxe resort valet parking. There is no charge to valet with a handicapped sticker but you still pay the valet tip. This was so helpful for us as just getting everyone in the car was a chore and having a valet to get the car, open doors, and just be another set of eyes was wonderful. We tried to stick to meal routines as much as possible as it helped with giving meds. By making your ADR's at the 180 day mark you can usually get what you need. I learned to ask for a glass of water as soon as we were shown our table and verbalized that it was needed for meds. Most places got us water right away. I also carried water in a filter water bottle. It could be refilled at any drinking fountain and because it was filtered it meant for less change. I also carried things that could be used to distract my mom. This could be anything from a small toy, a plastic twisting puzzle, or a tube of bubbles. My mom loved bubbles and they would calm her down as soon as she saw them.

Practicing with the wheel chair is great advice and since you will need a push wheelchair make sure your pushers are practicing too. Some of the Disney ramps are difficult. The ones going into The Land in Epcot are particularly hard to navigate. Plus there is only one elevator in that building and it is hidden IMO, LOL! Make sure you know how to push some one in a wheel chair. For example enter elevators by turning around and going backwards. This prevents the smaller front wheels from getting caught in the grooves of the sliding door. I learned to open doors and then use my hip to bump that door while pulling my mom in backwards and behind me. It took some practice but was the only way to get her into many bathrooms. For attractions, many wheelchair spots are way in the back or way up front. Also some attractions will take you a much longer time to board when you have a wheel chair. Kilimanjaro Safari in one that takes much longer, normally. Check out Haunted Mansion in MK and decide which entrance is best for your brother. My mom did not like the crowds and darkness of the stretching room so we avoided that and entered through the exit so she could board the doombuggies.

I hope this helps. This group of DisMembers are very knowledgeable and helpful so ask away and happy planning!
 
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@Twende: My Mom had Vascular (stroke-related) Dementia as well, so I fully understand what you went through.

@Tinkerbellie16 @Twende gave some SUPER great advice about the chair - especially backing into elevators! Another quick tip for some of the steeper ramps (especially The Land at Epcot, and the amazing ramp system at Beauty & The Beast at Hollywood Studios) is to try to start up a steeper ramp or hill at a *slight* angle. Oftentimes folks think that you should just get up speed, and "power through" but that can actually be harder than going at it at just a slight angle, and then curving your path on the slope towards the top as you push up. (I hope that makes sense!)

Also - Disney now has LOTS of "Family" restrooms that are accessible - and in the regular restrooms there are wheelchair accessible stalls that INCLUDE a sink in most of them! I know how important that can be! :)

Finally, remember that there are TONS of boat rides all over WDW - some of my favorites are to/from Hollywood Studios to The Boardwalk, and to/from either of the Port Orleans Resorts to Downtown Disney/Disney Springs. There is a free show most nights at Port Orleans Riverside by a piano player that is very family friendly; Yee Haw Bob is a Disney legend! (literally!) There's also a great boat ride to/from Wilderness Lodge or Ft Wilderness from the Magic Kingdom docks - and if you are over there at night, around 9:15 to 9:30 or so, you can see the Electrical Water Parade, with all of the boats lit up, and music playing! (You can watch it on YouTube first to see if it is appropriate) If by chance, he becomes worried about not having his life jacket, ask the boat Captain to give him special permission to ride without his life jacket any time he is at WDW.

I can't wait to read your trip report, and see all those priceless smiles on your brother's face! :)
 
OP, your post made me cry. I think it's wonderful that your brother has a family who loves and cares so much for him. I hope you work it all out and he has a wonderful, magical time at DW! Everyone deserves to experience this wonderful place, especially special people like your brother. God Bless. :daisy:
 
you guys will have an excellent vacation!! and with that big of a group, you're right, markie will blend right in.

i've been twice with my brother, who is severely disabled. disney really does take great care of our special family members. one thing i would ask, is does he get fixated on ideas? i.e., when my brother wants to go on X ride, or see X show, or eat, he's determined and we can do nothing else until that mission is completed. if so, i really would recommend a DAS, as it comes quite in handy for pretty much everything but eating.

this obviously depends on a lot of factors (your brother's birthday being one of them!) but try to pick a quieter time to go, and use the various websites offering crowd calendars to determine the best days for each park/your overall schedule. crowds are manageable, obviously, but it just makes it much more relaxing to not have to worry about encountering a sea of people when you've already got a lot of other things to manage.

if you do stay on-site, i would recommend using your vehicle to go to and from the parks. i'm not sure what the rule/status quo is recently, but often if you're waiting for the buses with a wheelchair and a big group, they limit the number of people who can board with the wheelchair. it may be better to avoid any issues there entirely by driving yourself.

i can't wait to hear your report!
 
Twende said:
We used the GAC pass at the time and now you should get a DAS. We needed one to keep her waiting away from other people. You never knew what she would say or do. She would swear and make very rude insulting comments to people near her. This is something she would have never done before her disease.
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All of your advice is so great. You make such a good point about the DAS. Even though we will use FP+ and stick to a lot of the attractions that don't have long waits, it would be much better to have a separate area to wait. My brother won't usually approach people or touch them, but the extra people may agitate him more (and his seizures). And I love your tips on the wheelchair, especially about those front wheels getting stuck in the grooves of the elevators. Thank you for the advice!
 


mamabunny said:
@Twende: My Mom had Vascular (stroke-related) Dementia as well, so I fully understand what you went through.

@Tinkerbellie16 @Twende gave some SUPER great advice about the chair - especially backing into elevators! Another quick tip for some of the steeper ramps (especially The Land at Epcot, and the amazing ramp system at Beauty & The Beast at Hollywood Studios) is to try to start up a steeper ramp or hill at a *slight* angle. Oftentimes folks think that you should just get up speed, and "power through" but that can actually be harder than going at it at just a slight angle, and then curving your path on the slope towards the top as you push up. (I hope that makes sense!)

Also - Disney now has LOTS of "Family" restrooms that are accessible - and in the regular restrooms there are wheelchair accessible stalls that INCLUDE a sink in most of them! I know how important that can be! :)

Finally, remember that there are TONS of boat rides all over WDW - some of my favorites are to/from Hollywood Studios to The Boardwalk, and to/from either of the Port Orleans Resorts to Downtown Disney/Disney Springs. There is a free show most nights at Port Orleans Riverside by a piano player that is very family friendly; Yee Haw Bob is a Disney legend! (literally!) There's also a great boat ride to/from Wilderness Lodge or Ft Wilderness from the Magic Kingdom docks - and if you are over there at night, around 9:15 to 9:30 or so, you can see the Electrical Water Parade, with all of the boats lit up, and music playing! (You can watch it on YouTube first to see if it is appropriate) If by chance, he becomes worried about not having his life jacket, ask the boat Captain to give him special permission to ride without his life jacket any time he is at WDW.

I can't wait to read your trip report, and see all those priceless smiles on your brother's face! :)
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Ok, The Land advice is really important because we think Markie will just love Soarin'. What a fabulous way for him to experience something like that while being safe and cool and buckled in :)

I am also looking into some extra boat rides too. I was treated by work one year to an Epcot Illuminations cruise and it was amazing! I think my mom and brother would both like it. It only lasted an hour and a half and it was a leisurely boat ride to HS, then to park at EP and watch Illuminations with special glasses so the bits didn't get in your eyes. Due to the short cruise time and that we wouldn't have to walk around to find a good spot for Illuminations, I think it would be a great splurge for the family.

And I can't believe I'm saying this but I've NEVER seen YEE HAW BOB!!! My mother is a piano teacher and a retired chamber singer and I was also a chamber singer so we would adore this show. Excellent idea - this is something that Markie would be entertained with and enjoy because he's used to us all singing and he likes to listen to it.
 
afnaechiquita said:
you guys will have an excellent vacation!! and with that big of a group, you're right, markie will blend right in.

i've been twice with my brother, who is severely disabled. disney really does take great care of our special family members. one thing i would ask, is does he get fixated on ideas? i.e., when my brother wants to go on X ride, or see X show, or eat, he's determined and we can do nothing else until that mission is completed. if so, i really would recommend a DAS, as it comes quite in handy for pretty much everything but eating.

this obviously depends on a lot of factors (your brother's birthday being one of them!) but try to pick a quieter time to go, and use the various websites offering crowd calendars to determine the best days for each park/your overall schedule. crowds are manageable, obviously, but it just makes it much more relaxing to not have to worry about encountering a sea of people when you've already got a lot of other things to manage.

if you do stay on-site, i would recommend using your vehicle to go to and from the parks. i'm not sure what the rule/status quo is recently, but often if you're waiting for the buses with a wheelchair and a big group, they limit the number of people who can board with the wheelchair. it may be better to avoid any issues there entirely by driving yourself.

i can't wait to hear your report!
Click to expand...

He does get fixated on ideas and getting a DAS makes a lot of sense after hearing you and others post about it. My mom still refuses to get a handicapped parking sticker for my brother because he can walk and she doesn't want to take away those spots from people who need to be closer to an entrance. So I kept thinking we shouldn't get a DAS but it makes sense to do that, and even if we didn't use it, I'd feel better having that option (especially of a different waiting area in some spots).

We are bound by my mom's piano teaching so we are looking at mid-June. I'm trying to get her to move up the piano recital next year so we can go first week of June but we'll see. I'm also debating on whether to go during Star Wars Weekends. OH I KNOW - it is CRAZY. But my dad took us to see the first 2 movies before his accident took him from us and my brother remembers that (we all do). My brother is a huge Star Wars fan and sci-fi geek like the rest of us so this might just blow him away. Hopefully in a good, non-seizure inducing way! But that is still TBD. If we have more family members come with us, we would probably do that. And then the least-nutty person in our traveling party will be Markie because my other siblings and I will be running around screaming and pointing and fighting for the last popcorn souvenir bucket :)

If we go, we will stay at the Polynesian. My mom already said that would be the best as we could use the monorail to MK and Epcot. We probably wouldn't go to AK due to the heat and how crowded it gets in those walkways. And we'd go to HS for one morning. The Polynesian is great because we can watch fireworks on the beach, see the EWP, and walk to GF to see the band.
 
Tinkerbellie16 said:
I am also looking into some extra boat rides too. I was treated by work one year to an Epcot Illuminations cruise and it was amazing! I think my mom and brother would both like it. It only lasted an hour and a half and it was a leisurely boat ride to HS, then to park at EP and watch Illuminations with special glasses so the bits didn't get in your eyes. Due to the short cruise time and that we wouldn't have to walk around to find a good spot for Illuminations, I think it would be a great splurge for the family.

And I can't believe I'm saying this but I've NEVER seen YEE HAW BOB!!! My mother is a piano teacher and a retired chamber singer and I was also a chamber singer so we would adore this show. Excellent idea - this is something that Markie would be entertained with and enjoy because he's used to us all singing and he likes to listen to it.
Click to expand...

If you plan to go see Yee Haw Bob, then you can definitely take the boat to and/or from DTD/Disney Springs - it will be an extra treat for Markie!

And, if you are looking for an extra fun boat ride, DD and I did the Pirates & Pals fireworks cruise a couple of years ago. We had a BLAST! You get to meet Captain Hook & Smee before the cruise, and munch on pirate-themed goodies; it departs from Contemporary Resort, and they pipe the music for the fireworks through the boat speakers. You also get to see the Electrical Water Parade up close too.

Y'all are going to have so much fun! I hope that Markie gets to make all of his Disney dreams come true! :)
 
I am also planning a trip for my special needs sister and I was directed to this thread. I just finished reading through all the post and there is a lot of great information here! My sister is 31 years old, with down syndrome, and mentally about 6 yrs old. I too worry about other people's reaction to her (especially the characters - she loves to hug!), how keeping her on a schedule will effect everyone else in the group (I have 4 other children), and how using a wheel chair will change how we tour. So thanks for posting all the helpful info and the encouragement. It will be helping more than just the OP. :thanks:

(And as a side note - I saw a few comments about being afraid that using the medical term Mental Retardation is not PC. Remember the definition of retardation is "the process of slowing down" and there is nothing wrong with the word it's self - it's not a cuss word. And it's never wrong to use a word properly if it's a medical diagnoses. The problem with using retarded or retard is when it's used as an insult, or to put down someone.)
 
I don't have any first hand advice but I have been many times and have seen kids and adults of all abilities and disabilities having a great time. I totally agree about rides. You can easily fill a whole day with characters, parades, shows, live music, food!

I would avoid holiday peak times and extreme heat.
 
If you haven't looked at the disABILITIES FAQs thread, I would advise checking it out. There is a link in my signature or you can find it near the top of this board.
The first post in that thread is an index that tells which post includes which information. Even though the beginning date for each post is a long time ago, that is when the post was originally written. They are updated regularly, but the updated dates don't show.
 
Tinkerbellie16 said:
He does get fixated on ideas and getting a DAS makes a lot of sense after hearing you and others post about it. My mom still refuses to get a handicapped parking sticker for my brother because he can walk and she doesn't want to take away those spots from people who need to be closer to an entrance. So I kept thinking we shouldn't get a DAS but it makes sense to do that, and even if we didn't use it, I'd feel better having that option (especially of a different waiting area in some spots).

We are bound by my mom's piano teaching so we are looking at mid-June. I'm trying to get her to move up the piano recital next year so we can go first week of June but we'll see. I'm also debating on whether to go during Star Wars Weekends. OH I KNOW - it is CRAZY. But my dad took us to see the first 2 movies before his accident took him from us and my brother remembers that (we all do). My brother is a huge Star Wars fan and sci-fi geek like the rest of us so this might just blow him away. Hopefully in a good, non-seizure inducing way! But that is still TBD. If we have more family members come with us, we would probably do that. And then the least-nutty person in our traveling party will be Markie because my other siblings and I will be running around screaming and pointing and fighting for the last popcorn souvenir bucket :)

If we go, we will stay at the Polynesian. My mom already said that would be the best as we could use the monorail to MK and Epcot. We probably wouldn't go to AK due to the heat and how crowded it gets in those walkways. And we'd go to HS for one morning. The Polynesian is great because we can watch fireworks on the beach, see the EWP, and walk to GF to see the band.
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If you stay at the Poly there are also boats! You meantioned your brother loves them. There is a smaller boat that goes to MK or you can take the shortish walk to the TTC and get the ferry to MK there. Would be a treat! Also if he gets overwhelmed being in the parks you can just ride boats all over seven seas lagoon weather permitting of course. You could take the one that goes over to wilderness lodge, the one that goes to the grand Floridian and poly or even the one that goes to the TTC. We have used many a boat ride as a relaxing time in the middle of the day since they aren't that busy then.
 
rosedolph said:
I am also planning a trip for my special needs sister and I was directed to this thread. I just finished reading through all the post and there is a lot of great information here! My sister is 31 years old, with down syndrome, and mentally about 6 yrs old. I too worry about other people's reaction to her (especially the characters - she loves to hug!), how keeping her on a schedule will effect everyone else in the group (I have 4 other children), and how using a wheel chair will change how we tour. So thanks for posting all the helpful info and the encouragement. It will be helping more than just the OP. :thanks:

(And as a side note - I saw a few comments about being afraid that using the medical term Mental Retardation is not PC. Remember the definition of retardation is "the process of slowing down" and there is nothing wrong with the word it's self - it's not a cuss word. And it's never wrong to use a word properly if it's a medical diagnoses. The problem with using retarded or retard is when it's used as an insult, or to put down someone.)
Click to expand...
 
You shouldn't worry about other peoples reactions especially the characters. The first time I went to the Magic Kingdom as a 35 year old adult, I just happened to be standing in the spot where the line forms to meet Mickey and Minnie. I was so super excited when Mickey was walking up I completely lost my head, ran over and gave him the biggest hug!! Everyone was completely cool with it. The mouse himself,the CM's and even the other guests waiting. I have a feeling they get this reaction a lot.
 
Tinkerbellie16 said:
Good point on the food courts. I'll make sure to review the best places for him and take him there at off times. I personally like 11:15 am at Columbia Harbour house on the second floor (hopefully the wheelchair can be parked with the strollers.)
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FYI, Columbia Harbour House is the only quick service I have found with a reserved area downstairs for WC/EVC guests. Perhaps because second floor is not accessible. It is a great place for lunch.
 
I hope you have all have a great time. I'd check the monorail schedules I ended up at the Polynesian once with no monorails running to Epcot and a quite long walk because I wasn't told until i was told to get off at another stop to change to a bus. If he likes Chuck E's have you thought of a character meal? I've seen them being wonderful with adults and childrens of all abilities at the meals and it be calm way to start introducing Disney fun since you said it's a first trip. O'hana at the Polynesian is quite good with Stitch and Pluto.
 
FeralCatRogue said:
I hope you have all have a great time. I'd check the monorail schedules I ended up at the Polynesian once with no monorails running to Epcot and a quite long walk because I wasn't told until i was told to get off at another stop to change to a bus. If he likes Chuck E's have you thought of a character meal? I've seen them being wonderful with adults and childrens of all abilities at the meals and it be calm way to start introducing Disney fun since you said it's a first trip. O'hana at the Polynesian is quite good with Stitch and Pluto.
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We are hoping they will have a Star Wars character meal while we are there (First weekend in June) as he would love that! If they have the one at Sci-Fi again, that would be ideal but of course we won't know for sure for a couple more months.

The Ohana character breakfast is great - and quick! We may do that as well. I've got to get planning! ;)
 
I don't have any advice but I just want to say you are an AWESOME sister!
 
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