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

[Tinkerbellie16]

My brother (52) is severely mentally disabled (so much that they call it something that is not PC). He had a brain tumor removed (and partial lobotomy) 4 decades ago. He has the mental capacity of a 6 year old, gets very agitated quickly, is epileptic, and has health issues. He does walk on his own, talk (sometimes converses), and even works (with state supervision at a janitorial job). His vacations are limited to our family cabin on the lake and we shield him - from the stares and whispers of others and from him upsetting folks who don't understand.

For the first time ever, he has asked to go to DisneyWorld (several times!) My mother would really like to take him and I really want to see him enjoy the shows, see the castle, and experience what I, and our 4 other siblings, have enjoyed. He has outlived the doctors' predictions by 30 years so we know everyday is a gift and realistically, we know it could be the last. We want to give him this - but oh my, it is an adventure!

Our father died in a car accident a long time ago so my mother is contemplating doing this on her own. I want to go with her and will find any siblings/in-laws that will help as well. But I'm really worried! I don't care about the stares or about the effort for us, but I am worried about how to pull this off! My brother needs a lot of care and supervision. I know Disney makes an effort for everyone to enjoy their parks - but what about someone who's smile is fleeting and may be disruptive to others (maybe he's too loud as he talks or wants to talk to others who are afraid of him)? He is not gentle and does not blend in - he is flat out mentally disabled and you can see it and experience it in all its glory. He very likely will have a seizure, or several, while at the parks - "normal" for us, but not for others trying to enjoy their vacation. I could really use some personal experiences from others who have taken a severely mentally disabled person to Disney. And definitely some advice! My mother and I (and our siblings) are frequent WDW visitors, but the most extreme family member we've dealt with there has ADHD (which is a piece of cake compared to my brother).

And if we decide to do this, does anyone know of services that may be able to assist? That is, are there legitimate services out there that would help us with his care while we travel (drive from Michigan) or while we are there? Depending on which family members can help (that is, the big & strong men -husband, brothers, brother-in-laws) and the price, we may opt for this. My brother trusts my mother but she is 72 and needs to rest often herself. She says she needs to get my brother a wheelchair and I'm thinking they both might need one for a Disney trip

As someone who helps others prepare and plan for their WDW trips, I can't believe I am at a loss on what to do. So I greatly appreciate any advice or tips you may have - thank you!

 

[craigkerstiens]

I wish I could offer some better advice in terms of services that would help, but sadly inexperienced here. The one thing I can offer that hopefully helps is some words of encouragement. Disney seems to cater extremely well to all walks of life as do so many of the guests that stay there. Wish I had some better advice, but at the least I'd say go for it and you'll likely be pleasantly surprised at the good times and memories.

 

[Tinkerbellie16]

And here is my brother on his 50th birthday in 2013. He goes to Chuck-e-cheese every year - it is his favorite place to celebrate!

 

[Tinkerbellie16]

I wish I could offer some better advice in terms of services that would help, but sadly inexperienced here. The one thing I can offer that hopefully helps is some words of encouragement. Disney seems to cater extremely well to all walks of life as do so many of the guests that stay there. Wish I had some better advice, but at the least I'd say go for it and you'll likely be pleasantly surprised at the good times and memories.

Thank you for the encouragement! My mother said she would like to contact Disney to find out what they recommend. Is there a number or department I can call that will get me to someone that would understand? Their customer service department is great at directing me to someone that will make a dinner or resort reservation, but information on disabled visitors is something I've never inquired about! This isn't about asking for some 'pass' either. There is no way my brother can go on a roller coaster, no matter how mundane. He will be at all the sit-down shows which rarely have a line anyway My son said he's most excited to see Markie get his first dole whip. So simple for us, so HUGE for him!

 

[wilkeliza]

Check out information on the DAC. It would be worth researching and possibly getting one for your brother since a wheelchair won't be the only thing necessary for his comfort and ability to tour the parks.

I'm not sure what would be best for help wise. Just know with lots of planning you guys can make your brother's wish come true!

 

[Tinkerbellie16]

Check out information on the DAC. It would be worth researching and possibly getting one for your brother since a wheelchair won't be the only thing necessary for his comfort and ability to tour the parks.

I'm not sure what would be best for help wise. Just know with lots of planning you guys can make your brother's wish come true!

What is DAC? Is that the new DAS? I searched Disney DAC and actually came up with a great Disney link regarding their DAS (that card they give out to get a return wait time to attractions). I'm pretty sure we won't need to use one of those but I still read the whole page and they do have an email address for specific disabilities questions. As we won't just be day guests, we have a lot of resort questions! Here is what I found - http://disneyparks.disney.go.com/blog/disney-parks-disability-access-service-card-fact-sheet/

 

[craigkerstiens]

Thank you for the encouragement! My mother said she would like to contact Disney to find out what they recommend. Is there a number or department I can call that will get me to someone that would understand?

There may very much be a more direct number or email address, but per the Disney website this seemed to be the best source: For questions concerning Guests with cognitive disabilities, or for more information, please email Disability.Services@DisneyParks.com or call (407) 560-2547. Guests under the age of 18 must have parent or guardian permission to call.

My son said he's most excited to see Markie get his first dole whip. So simple for us, so HUGE for him!

Speak for yourself, I'm always pretty excited about a dole whip

 

[disneydude365]

Disney is awesome for all alms of life the staff never treats anyone any different despite illnesses
My advice take the DAS card whether you think you will use it or not some of those shows get long wait times as well so the fast lines come in handy.

As for your worries about other guests reactions? Ignore them. This is your family's trip, there may be a few odd guests that don't understand what's going on and show it but for the most part Disney goers are usually very understanding.

email Disability.Services@DisneyParks.com or call (407) 560-2547. is the info I've found

The resort staff are also very accommodating to special needs if informed.

I don't have mental problems but the illness that I have does have some people with them. I do have my own issues to deal with when going on vacation. And honestly Disney always is my must go to pick, it's like when your there it's a different reality.

 

[mamabunny]

I have no direct experience to offer - other than the fact that my Mom was a Special Needs teacher for many years, so I hope I have a realistic view of your brother's potential behavior.

First of all - don't worry about the other guests. I promise you; most of them are so self-absorbed, and busy taking "selfies" that I swear you could set off fireworks right in front of them, and most wouldn't notice. Unless they happened to look up - and then they would only take a picture to post on Instagram...

In all seriousness, please don't worry about anyone else. Your brother - who has a great smile, and definite twinkle in his eye - is what matters. The fact that you, your Mom, and your family are determined to help him experience WDW is so wonderful and so loving. He is truly a lucky guy!

If you do decide to get a wheelchair for him, please make sure that he is used to riding around in one before you get to WDW. "Practice trips" with wheelchairs at stores might help him get used to the motion, and the idea that we have to keep our seat on the bottom, and our bottom on the seat! Also - and I can't stress this enough - bring along bike gloves (don't spend a fortune, cheap ones from Walmart are just fine) for the wheelchair pushers. The hard plastic grips on the rental chairs will blister your hands in no time flat. I speak from personal experience!

So, he doesn't ride many rides - that's OK! You know there are TONS of things he is going to LOVE about WDW! In addition to that Dole Whip, don't forget to take along a bag of pennies and quarters - "Smashed penny" machines are all over WDW, and kids of all ages love them! Another thing he may enjoy (if it is safe for him) is to trade pins! Buy him a handful of pins to trade with Cast Members; and ask at your Resort in the gift shop - most of the Resort gift shops still have "pin boards" where you can trade one pin for another!

Collecting autographs might be fun for him - even from Cast Members! Maybe take along a small map of the US, and try to find a Cast Member from every state to sign his map! Lots of fun interactions that way, since all CM's have their hometown on their badge! You can also play "Pooh Sticks" on the bridges around Cinderellas Castle, and create a simple scavenger hunt for him (maybe half a dozen pictures) of things he is sure to see while he is at the parks - like Mickey head balloons, a cup of soda, etc.

Last suggestion is very simply let him do Disney his way. He may spend the entire time fascinated by the flowers, or just riding the train over and over. Whatever it is that he finds Magical, will become Magical for everyone in the family too!

I hope that his trip is every bit as special as he is.

(((hugs)))

 

[Michy]

When my mom took me and my little sister when we were younger she had no issues with us being treated different and as long as she told the cm that I was fine just needed a quite area to recover from a seizure things were good. I was having 25+ seizures a day when we went. I know also about having a sibling who's diagnoses is that it's not PC to call it by its medical name so we just say low function developmental disability. She is now 22 but functions similar to a 5 year old level with no clue for boundaries and safety. While I have physical and a form of autism. So I can understand how hard it can be. Right now we are redoing my trip that we did back then but this time without my sister or family. Will now be both my husband and myself and two friends who will be providing attendant care.

If your brother is on any waiver program that provides any help with personal care I would look into seeing if you could use some of that assistance to help cover some extra help while there if your able too. I know with us we have direct funding which allows to help pay for attendant care even if we travel.

I would second the idea of practicing to see if he could handle being in a wheelchair for any length of time to see what his limits to that might be as that would also help you know how the trip might go.

 

[Gracie09]

I have a cw with a mentally disabled adult daughter that sounds similar to your brother. He and his often bring her to Disney. They are very adept at using the das and fp to make sure she rides what she wants without much of a wait. She too likes shows and characters, especially princesses so they make those a priority. The cm are great.
A few tips, first aid is great. It's a place he can chill out literally and figuratively especially if he needs to rest after a seizure. Like others said, most guests are in their own bubble so they probably would not notice anything. The most you may get is a whisper or look but he won't notice. Look at renting dvc points. You may be able to get a larger villa that will allow you mother to have help in the same area also it has a kitchen and if he's likes routine, it's helpful to be able to have the usual breakfast etc.

 

[blondietink]

Both of my sons are developmentally disabled with my 25 year old more severely. He has Down syndrome, is non verbal, has seizures and a heart condition in addition to having the mental capacity of a 6 year old. We use a wheelchair for him at Disney all the time. He fears crowds and if he did not use the wheelchair, he would sit down on the ground and refuse to move if is was crowded (and it almost always is). Characters are wonderful with both of my sons. We usually get a DVC villa with a kitchen that gives us more space to chill out. The parks are very stimulating and it is nice to get away from it all every day. We use a combination of the DAS and the new FP+ system, but really if you go to the parks when they open in the morning, most of the rides had less than a 10 minute wait. We used our FP+ for mid-day rides that we knew would have a long wait, like the Seven Dwarfs Mine Train. If you brother's seizures can be triggered by flashing lights, then there are probably some things you need to avoid. I think on the Disney website there is a guide for people with disabilities that you can read and print off and the rides are described so you would be able to determine if they could trigger a seizure, panic attack, etc. As others have mentioned, first aid is a great place to go if your brother has a seizure or needs to cool off, etc. Good luck and I am sure you will have a fabulous time!

 

[gap2368]

how net that you are taking your brother to Disney world. I think you know your bother the best and what he need I would suggest you go to the park with what you think you need ( like you said a wheel chair)and if you find this is not working for you then I would go to Guest survive in any park and say my bother has ____ and when ________ is happening around him __________ happens ( and please use your own words and be as pacific as you can) there may be things that the cast member can do that none of us know I know for me different noises bother me so I bring ear plugs or list ion to my music, also light a hat and sunglasses helps with that. but like I said you have to tell Disney what your needs are. as fair as the seizers go disney is good about helping guess with medical problems but not telling you what to do if there is something your brother need to help him then they will get it for you ( I have sat in the middle of the magic kingdom with a plat for a table survive restaurant ) first aid is a great place to go if your bother needs to get away.

I hope you have a great time

 

[blondietink]

If your brother is on any waiver program that provides any help with personal care I would look into seeing if you could use some of that assistance to help cover some extra help while there if your able too. I know with us we have direct funding which allows to help pay for attendant care even if we travel.

I would second the idea of practicing to see if he could handle being in a wheelchair for any length of time to see what his limits to that might be as that would also help you know how the trip might go.

Wow, you are lucky that your waiver will allow you to take an attendant when you travel. We have a waiver for both of my sons and they will not pay for travel, even if we travel within our state.

 

[Tinkerbellie16]

My eyes are welling up right now - you guys are fantastic! It is so wonderful to find sympathetic and empathetic people regarding my brother. And to find people that know what I mean when I don't say it or don't write it quite right

It really makes me feel better to know that there are people that go to WDW with severe disabilities and that they and their families enjoy it!

LOVE the tips!!!! I never thought of having him practice in a wheelchair but once I read that - I just know that is what he needs to do. And thank you for the information on the first aid stations. We don't need help with his seizures but having a cool place to get our bearings and help him wash up and cool off his head for a few minutes is just what he'll need.

And the idea about the scavenger hunt with pictures is PERFECT! What a great idea! It can be done outside, no lines, and something that he will greatly enjoy 'discovering'! My daughter and son love to pin trade so we can see how he reacts to that although I think he really would like to do that - just with some help. He'd be fine with a pin but he can have trouble with small objects sometimes.

As for a wheelchair, we think we should have one for the entire trip, not just at the parks (you know sometimes even Gaston has trouble with that long walk back to the room!). Does WDW offer a wheelchair rental for the week? Or does anyone recommend a rental company?

Did I say thank you? Because THANK YOU!!! I really struggled with whether I should post this thread and you guys have made me so happy I posted. Even without the tips, it is so nice to have people's encouragement!

 

[Tinkerbellie16]

When my mom took me and my little sister when we were younger she had no issues with us being treated different and as long as she told the cm that I was fine just needed a quite area to recover from a seizure things were good. I was having 25+ seizures a day when we went. I know also about having a sibling who's diagnoses is that it's not PC to call it by its medical name so we just say low function developmental disability. She is now 22 but functions similar to a 5 year old level with no clue for boundaries and safety. While I have physical and a form of autism. So I can understand how hard it can be. Right now we are redoing my trip that we did back then but this time without my sister or family. Will now be both my husband and myself and two friends who will be providing attendant care.

If your brother is on any waiver program that provides any help with personal care I would look into seeing if you could use some of that assistance to help cover some extra help while there if your able too. I know with us we have direct funding which allows to help pay for attendant care even if we travel.

I would second the idea of practicing to see if he could handle being in a wheelchair for any length of time to see what his limits to that might be as that would also help you know how the trip might go.

Thank you for understanding how hard it can be and for letting me know that it can be done! I will ask if his assistance covers any extra help while we travel. I hadn't thought of that and those are the things I want to look into. At the end of the day, if it is just us, that's OK too! But if there is any assistance we can get, I'm certainly willing to pursue it

 

[dismom57]

My only other suggestion to you would be to consider the Cabins at FW. We always go there with my adult son (in wheelchair because he needs it) and also developmentally delayed. We love Disney and utilize a DAS as needed. Many airlines can provide companion fares if needed, and many places have funding for a helper. Thankfully my daughter loves Disney and her brother. There are so many shows and accessible rides, and forms of transportation. Our funding covers a helper, but not room costs etc.
Good luck, this is the place to come for ideas and just company.

 

[Gracie09]

My eyes are welling up right now - you guys are fantastic! It is so wonderful to find sympathetic and empathetic people regarding my brother. And to find people that know what I mean when I don't say it or don't write it quite right

It really makes me feel better to know that there are people that go to WDW with severe disabilities and that they and their families enjoy it!

LOVE the tips!!!! I never thought of having him practice in a wheelchair but once I read that - I just know that is what he needs to do. And thank you for the information on the first aid stations. We don't need help with his seizures but having a cool place to get our bearings and help him wash up and cool off his head for a few minutes is just what he'll need.

And the idea about the scavenger hunt with pictures is PERFECT! What a great idea! It can be done outside, no lines, and something that he will greatly enjoy 'discovering'! My daughter and son love to pin trade so we can see how he reacts to that although I think he really would like to do that - just with some help. He'd be fine with a pin but he can have trouble with small objects sometimes.

As for a wheelchair, we think we should have one for the entire trip, not just at the parks (you know sometimes even Gaston has trouble with that long walk back to the room!). Does WDW offer a wheelchair rental for the week? Or does anyone recommend a rental company?

Did I say thank you? Because THANK YOU!!! I really struggled with whether I should post this thread and you guys have made me so happy I posted. Even without the tips, it is so nice to have people's encouragement!

There is a big sticky thread at the top with information about the different companies that rent wheelchairs and ecvs. I would recommend getting on off-site company as opposed to renting for Disney. It is cheaper and the disney wheelchairs can't leave the parks. You may want to consider and ecv for your mother if you think the walking may be too much for her. Also look at the sorcerers of magic kingdom and even the Perry game in epcot and wilderness explorers in animal kingdom. They are all adventure type games that he can play with little wait at each station. Maybe also look at getting a passport in epcot. He can get it stamped in all the countries and the other adults can enjoy come beverages as they go around.

 

[StitchesGr8Fan]

My brother is turning 50, has severe brain damage (half his brain is dead), has seizures and diabetes, and is going to Disney world with us for the second time. My parents are in their 70's so this is probably the last family trip. We took my brother to WDW for the first time in 2007 and he loved it (mentally he's about 6, 8 on a good day). The big difference is that my brother is only 100 lbs and I can overpower him if he has a tantrum. My tip is to try and keep his diet and routine close to normal. Of course you have to have treats, it is vacation after all, but don't stretch out the time between meals, get dehydrated, or overdo the sugar. That can make anyone cranky. My brother can walk so no wheelchair needed, but we rented an ECV for my dad from Apple Scooter for our upcoming trip. My brother can wait forever if it's something he wants to do, so a DAS won't help him, but you should get one if crowded waits could be a problem. You might not need it, but get it just in case. You can do this. Just pay attention to your brother's queues and use those to determine what to do next.

 

[TheRustyScupper]

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.