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

[gap2368]

I have to agree with Rusty 100% on this I think disney is the best place to vacation with any disability at all. It might take a bit more planning on your part but you can do it The CM there are beyond great you just have to let them know what you need ( and even if you do not know what you need, you just have to be able to say what is not working for you) since he goes to Chuck-e-cheese for his birthday that should give you some idea on how he will handle Disney ( I know they are not the same but with crowds nosies and a lot of things going on) do not try and do it all as you can't really do that take breaks ( your hotel room first aid a sit down restaurant/ or a quick survive one) talk to CM they are a lot of fun ( I like the ones on main street) do some fun photos.

 

[tobikaye]

If your brother loves Chuck-e's then he should enjoy WDW. My sister is developmental delayed, but is quite high functioning. With her, her likes run the gamete from stuff preschools love to something other 30 somethings enjoy.

When we went with her during the ages of 7-16, she was would ride anything. When we went for a half day when she was 18, she was resistant to some of the attractions she normally enjoyed. I took her and my parents when she was 31 and she barely did attractions, but enjoyed the shows and characters. Knowing this, I took here again the next year and we barely did any attractions, but she had a blast meeting characters and seeing shows and doing the attractions she did love. She is not big on the attractions at WDW, unless the queue is mainly outside, as she tends to panic if she cannot see either the loading or exit. We have not been back in about 4 years, we did a Disney cruise instead last year.

So, here are things I have found that I did to help my sister, mainly based on her needs during our trip in 2010:

1. Since she was a early riser, we would go to the parks early, but not right at RD.
2. Take afternoon breaks, either at the resort for a long TS lunch.
3. Planned character meals at resorts for breakfast or lunch so she could look around at resorts she had not seen before.
4. Kept up with the character greeting times and show times and let her met the same characters over again at different places.
5. Willingly rode Small World, Jungle Cruise, Safari multiple times.
6. Drove to the parks instead of taking the buses as she has a slight fear of being left.
7. Watched the parades multiple times, luckily there were quite a few then.
8. Left before the fireworks started, even if we stayed late.

 

[blondietink]

How wonderful to know how CM's really feel! We are headed to Disneyland for the first time in November and I hope their CM's are as wonderful as the ones in WDW!

1) People have been good at expressing views from a GUEST STANDPOINT.
2) Let me talk from a CONCIERGE/CM STANDPOINT.
. . . almost every CM will recognize the situation and react favorably
. . . even the biggest curmudgeons melt when they see a handicapped person enjoying themselves
. . . the other guests seldom make problems or rude comments to an obviously encumbered individual
. . . in situations like this, the "MAGIC" of Disney really comes through
3) From my observations of other severely handicapped kids at WDW (including my work at Give-Kids-The-World)
. . . even if they cannot ride man attractions, they can have great fun just people-watching
. . . getting autographs from "ordinary" CM's is always a great game for them - and a real treat for the CM's
. . . stop at every Guest Service and Concierge Desk and see what they might have for him (we always have treats or games)
. . . GIVE US A CHANCE TO SHINE FOR HIM !

PS - I sent you a PM.

 

[wilkeliza]

Sorry I did mean DAS. I don't use the system personally and am no longer a CM so I do get the card name messed up. Glad you found the information though.

 

[DisneyNutMary]

I don't have anything to add, I just want to add my support for what you are undertaking. The memories for your whole family will be worth more than money can buy. And if your brother likes looking at pictures of himself, the pictures from the trip will be amazing for him.
My brother just turned 50, and is severely brain damaged from cerebral palsy, he has a mental age of about 8, he is basically a quadriplegic from the palsy, and lives in a group home since my mom couldn't physically care for him anymore. Though he hasn't been to WDW, he has been to Hersheypark a number of times, and I think your brothers experiences might mirror my brothers. It's usually a slow day, taking time to get places, and making sure he is always shaded and hydrated. He rides nothing since about the age of 17 when he became too big to transfer wheelchair to ride, but he sees shows, meets characters, watches parades, eats in restaurants (a rare treat for him) and every trip is a life altering experience from him to hear him talk so excitedly about it.
Enjoy your planning and enjoy every second of what should be the most magical trip you will ever take.

 

[SMD]

How long is it going to take you to drive there? How will he handle 2-3 days of a different routine before you even get to WDW? If he's only vacationed at a family cabin has he been on a road trip or stayed in a hotel before? Some airlines or airports offer short practice flights or practice going through security and getting on and off a plane. You might want to try a short practice road trip to get an idea of what issues might come up.

 

[Random Ninja]

You've gotten a lot of good advice already but I also wanted to point out that Disney does have a fairly new guide for guests with cognitive disabilities that might be helpful. It lists every attraction and whether or not it has flashing lights, fog or mist, and a whole bunch of other tips that might come in handy that you might not have considered yet. This is an awesome thing you are doing for your brother and I'm sure it'll mean the world to him. Bless you!

https://wdpromedia.disney.go.com/me...bilities-services/wdw_cognitive_guide_rev.pdf

 

[Tinkerbellie16]

How long is it going to take you to drive there? How will he handle 2-3 days of a different routine before you even get to WDW? If he's only vacationed at a family cabin has he been on a road trip or stayed in a hotel before? Some airlines or airports offer short practice flights or practice going through security and getting on and off a plane. You might want to try a short practice road trip to get an idea of what issues might come up.

The drive to WDW is 17 hours and we will break it over 2 days. My mother is adamant that he can't fly and she doesn't want to do that. It isn't a matter of him sitting still necessarily but rather the potential for a medical issue that others tend to be overly concerned about. She doesn't want them making some emergency landing because he has a seizure - which is normal. Also, the potential that he gets so agitated we can't calm him down and there is no where to go and decompress. I will pursue the possibility of flying but I'm not sure if that will happen.

As for a break in the routine, he's had so much disruption in his life (different homes, caregivers, hospital stays, surgeries, medications, jobs, etc.) that I think a drive to Disney would be tolerable. The drive to the cabin is 5 hours so he's ok with a long drive as long as we have breaks - sit down meals, rest area parks, seeing the biggest ball of yarn But I hadn't considered 'prep' work for it and that makes a lot of sense. Thank you for that suggestion!

Oh, and he does stay in hotels occasionally! Usually just one night though. He stays multiple nights at the family cabin and at my mom's house other than his apartment but also a good point, we'll want to make sure he's prepped for being away for a week.

 

[tobikaye]

Since you are probably going to need downtime, you might want to consider the Cabins at FW, a suite at AoA, or a DVC villa if you want to stay on site. If you consider staying off-site, I would definitely look into a house or condo rental. This might give your brother, and everyone else, a bit more space versus a regular style hotel room. When it is just my sister and I, we are fine in a regular room, but add even one person and it gets cramped when we need to hang out there for a bit to decompress.

As for the drive down, it sounds like you have a good plan. As long as you make sure to take plenty of breaks and have some things that he might enjoy, you should be good. I can understand your mom's concerns and even if everything were to work out, I can see that the worry leading up to the flight could be more stressful than it is worth.

 

[Disneylvr]

My 12 year old daughter is on the severe side of the autism spectrum and she has also been diagnosed as having moderate MR (not PC, I know, but that is what the paperwork says :-() Even though she isn't quite an adult, like your brother, I think this might be for him. We prepare her for the parks, rides and what to expect in Disney by watching You Tube videos, in particularly the ones produced by Big Fat Panda. They are excellent and have really helped to make our trips more successful. I think it is wonderful that you are going to make this trip!

 

[MakiraMarlena]

Most people will understand that he is a disabled person. Some will probably be jerks. If you see jerks, ignore them. You have ways to work it out where your biggest issues would be if he has a medical emergency or if he is prone to engage in behavior that might hurt himself or someone else. If crowds are a problem for him, you can use DAS to wait somewhere else for all attractions with fastpass lines. You'd have to wait in character lines that don't have FP. I think I'd recommend a wheelchair rental company. Then you can keep the wheelchair with you and take it everywhere. Are you using any Disney transportation? Is he used to riding buses? I think he might like the monorail though, maybe the big ferry boat. Maybe not if he doens't like crowds.

There's plenty of things at the parks and the resports he would enjoy, even if he isn't up to going on rides.

 

[JennyDrake]

I'll echo what others are saying:

1. Don't give what others think or how they react a second thought.
2. DAS would serve you well.
3. There is SO MUCH he can do!! I have been as a (paid) companion to a senior with mobility and memory issues and she can only ride a handful of rides, but she LOVED the shows and pictures with Mickey and people watching.
4. STAY ON WDW PROPERTY.
5. Consider renting a wheel chair from an off site vendor. they are lighter weight and you will have its use 24/7.
6. Consider going the first week in December--lower crowds, cooler weather and CHRISTMAS stuff!
7. Rope drop is your best friend. Lower crowds, lowest wait times of the day.
8. If you stay on property, develop a strategy in advance for the food court. Food courts are BEDLAM to some degree at all hours. Instead of having brother go through the lines (which can be long and hectic), have one person wait with him at a table in a quieter area while 2 more people order and bring the food.
9. If you want to look into help while there, contact home health services (private) and ask around. It will take some digging and will be expensive, but an adult respite provider expereinced with special needs should be able to be found, but expect to pay at least $25/hour plus park admission and meals.

Keep us posted and we are delighted to be a small part of your dream.

 

[Tinkerbellie16]

You've gotten a lot of good advice already but I also wanted to point out that Disney does have a fairly new guide for guests with cognitive disabilities that might be helpful.

https://wdpromedia.disney.go.com/me...bilities-services/wdw_cognitive_guide_rev.pdf

Thank you! The attraction info is so great. Another poster mentioned it too and this is really helpful.

 

[Tinkerbellie16]

If your brother loves Chuck-e's then he should enjoy WDW.

I never thought of that until you posted it. I know, it would seem so obvious but I think my mind is working on worst case scenarios - not the fact that he can totally handle a 'non-face' character! Thanks

 

[Tinkerbellie16]

I don't have anything to add, I just want to add my support for what you are undertaking. The memories for your whole family will be worth more than money can buy. And if your brother likes looking at pictures of himself, the pictures from the trip will be amazing for him.
My brother just turned 50, and is severely brain damaged from cerebral palsy, he has a mental age of about 8, he is basically a quadriplegic from the palsy, and lives in a group home since my mom couldn't physically care for him anymore. Though he hasn't been to WDW, he has been to Hersheypark a number of times, and I think your brothers experiences might mirror my brothers. It's usually a slow day, taking time to get places, and making sure he is always shaded and hydrated. He rides nothing since about the age of 17 when he became too big to transfer wheelchair to ride, but he sees shows, meets characters, watches parades, eats in restaurants (a rare treat for him) and every trip is a life altering experience from him to hear him talk so excitedly about it.
Enjoy your planning and enjoy every second of what should be the most magical trip you will ever take.

Hydrated - so key, thank you. And you have plenty to add in addition to support and both are appreciated! I can empathize with you and your situation (as well you can with me It's great to hear your brother likes HersheyPark. And that your family can do it all while he is in a wheelchair. Markie can walk but we figured the wheelchair would be good for when he wants to sit and if he gets tired of walking. I am an avid runner and even my muscles HURT at the end of a WDW day!

 

[Tinkerbellie16]

Since you are probably going to need downtime, you might want to consider the Cabins at FW, a suite at AoA, or a DVC villa if you want to stay on site. If you consider staying off-site, I would definitely look into a house or condo rental. This might give your brother, and everyone else, a bit more space versus a regular style hotel room. When it is just my sister and I, we are fine in a regular room, but add even one person and it gets cramped when we need to hang out there for a bit to decompress.

As for the drive down, it sounds like you have a good plan. As long as you make sure to take plenty of breaks and have some things that he might enjoy, you should be good. I can understand your mom's concerns and even if everything were to work out, I can see that the worry leading up to the flight could be more stressful than it is worth.

Mom and I are thinking the Polynesian. We will have the monorail to MK and EP and those are the two parks we'll spend our time in. We want an indoor hallway and nothing with too many high floors. The walking is minimal around the resort and even then, it is calming. Unfortunately, they don't have the full kitchen villas but we also don't mind NOT cooking! We will have a few rooms so we are ok with the space. We'd prefer a villa but we are looking at the trade-off of the monorail vs. some more room. I will look into GF and Contemporary villas but my mom's dream resort is the Poly and my husband will only stay there (or so he says every time I plan a WDW vacation). So it might sway that way!

 

[Tinkerbellie16]

Some of my other siblings and their families are also considering going so we may be more of a spectacle and no one will notice quiet Markie. Here's a photo from a few years ago with Markie (bottom far right) and all of us siblings, spouses (most), and children with my Mom. So if we have our crew all go, the biggest issue might not end up being about Markie - and that's ok!

 

[Tinkerbellie16]

Not sure the photo came through so I'm trying again.

 

[DisneyOma]

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?

 

[mamabunny]

View attachment 114173 Not sure the photo came through so I'm trying again.

It came through beautifully!

What an adorable, wonderful family!