DisneyWorld with a Profoundly Developmentally Disabled Adult?

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I read your post and must tell you , you are not alone. My DS is 16 his sister is 14 and I always worry about the day when we are not here to care for him and it is up to her. I have a notebook in my drawer that has all info about him (he likes to listen to Barney music in the car, he likes apple juice at room temp etc) If anything should happen to us she knows this is there. We have talked to her on many occasions about the future. She is a very mature little girl. She knows that she is not to feel guilty if she cannot care for her brother etc. She is very close to him. Two years ago we found out we were having another baby..... :goodvibes It was a big surprise to us all! We all thought it was a boy but when we found out it was a little my daughter said,"I need a sister so that when we are older we can take care of David together". I just love this!! No matter what we tell her the BOND is there and always will be.
Troy you area wonderful brother to do this for you brother. I am wondering if an association like Make A Wish can help you out? I bet they have connections to nurses and aides in the WDW area. Can Make a Wish help out with your wish for your brother? Might be worth a call.....God Bless You.
 
I have no advice, except to say: Do what makes you and your brother the happiest people on earth. If anyone looks at him or makes you feel uncomfortable -- ignore them and just keep on going. You are incredible for wanting to give your brother this experience, and you will have the best memories in your heart forever.

Remember that everyone has a handicap -- some people just have invisible ones.
 
HopperFan said:
You have given me hope that the bond they have is stronger than any physical, medical or any other obstacle they may face. Thank you.

You have to understand, I grew up with this perpetual little boy. I know what makes him happy and what makes him cry. When our mom passed it was devastating for both of us. He lost his mommy, had to be moved from his home, it was heartbreaking. While I was dealing with the loss of our mother, I had a picnic compared to this little boy. I stayed with him in the group home for a week and a half to make the transition easier for him. The hardest part for me was when he would wake up in the middle of the night crying for mommy. All I could do was hold his bottle and cuddle him as she used to do. Thank God it worked.

SueM in MN was concerned that I am not ready for a trip of this length with Billy. I have no problems with being with him, I just am uncomfortable with changing or bathing him.
It must be a guy thing. When we were kids I could do this with no problem. If he was still physically a child I would have no problem. Because he is a physical adult, this is where it becomes uncomfortable for me. I just don't think a guy has any business messing with another guy's lower half if you know what I mean. There has been 2 different times that I had no choice and had to change him but I would not voluntarily put us in a situation where that would be necessary. It makes me uncomfortable and he senses it and gets uncomfortable. This is what I am trying to avoid.
The reason I only take him for 2 hours is so this doesn't become an issue. With an Aide along, this is not an issue. The most I would have to do is be there the first time to explain how things work best with him. When changing him, he will turn when you put your hand on his hip and apply gentle pressure in one direction or another. My mom did a really great job in teaching him things that would minimize the physical workload on whoever was caring for him (pragmatism I am sure. She knew as she got older she would be able to do less physically for him).

I do think I am able to and am actually starting to look forward to taking him to disney thanks to all of your encouragement and insight from those who have been down this road.

Thank you all so very much!!

Troy
 
Troy3357 said:
I have no problems with being with him, I just am uncomfortable with changing or bathing him.
It must be a guy thing. When we were kids I could do this with no problem. If he was still physically a child I would have no problem. Because he is a physical adult, this is where it becomes uncomfortable for me. I just don't think a guy has any business messing with another guy's lower half if you know what I mean. There has been 2 different times that I had no choice and had to change him but I would not voluntarily put us in a situation where that would be necessary. It makes me uncomfortable and he senses it and gets uncomfortable. This is what I am trying to avoid.
I can understand that. My oldest DD is very capable of taking care of her younger sister (who has multiple disabilities). While the whole family was at WDW, the 2 of them have gone to a park for the day together and they have stayed at home together for long weekends when my DH and I were gone (both are adults). But, there are things my older DD could do, but would prefer not to do.

I just wanted to make sure all the bases were covered. In my "life outside these boards", I'm a nurse and a mom; it's my job to think up the things that might be roadblocks, so they can be thought about and taken care of while they are just potential roadblocks. If you look at them and say "OK, I can deal with that, I don't see they you are worried" it's much better than saying after you come back "why didn't someone tell me about that so I could plan?"
Some of the things I mentioned are things I know I forget when we haven't done it for a while- we have family who live 5 hours away by car. Each time we travel, I have to remember all the things that help DD to deal with that (or I have to put up with 5 hours of her hitting the back of my seat while we are driving, so she can point out that she is trying to sign something to me). On a short trip, she's OK, but after 5 hours, I'm ready to pound the back of someone's seat myself. I've done the 5 hour trip with just her and me, but it's much more pleasant if someone else is along.

Anyway, do you have a resort picked out?
Do you have questions we can help you with about attractions?

I have an extra copy of the Passporter Book for your Special Needs that someone else mentioned. I'd like to send it to you (free - I got some for being a peer reviewer of the book). If you would like it, PM me or send me an email with information on how to get it to you.
 
D said:
See...this is why I LOVE LOVE LOVE these boards!!!!!!!!
Now, eveyone, please keep in mind that I only have a few free books. If you get a PM or message from me about one, you have been hit with magic pixie dust (at least until I run out of books).

D said:
I am wondering if an association like Make A Wish can help you out? I bet they have connections to nurses and aides in the WDW area. Can Make a Wish help out with your wish for your brother? Might be worth a call.....God Bless You.
Make a Wish couldn't help because he is an adult (they only do wishes for kids 18 and over) and since MAW is national with state offices, the MAW in his area may not have any information about resources in Orlando.

Your post gave me a good idea though.
Give Kids the World ( www.gktw.org ) is the place where many MAW kids stay in Orlando. Their website has a "Contact Us" link. If you email them and say you realize they can't directly help because of his age, but you are just looking for some information, they may be able to help with connections to nurses and aides in the WDW area. They may also have some suggestions for volunteer organizations in the WDW area that could help.
 
One hint I wanted to throw in is that if the parks seem to be too much stimulation for him at one time, you can get away from the parks. We find MK especially can get overwhelming. It's a lot of people, a lot of noise and constant music. Getting away from it for a while really helps sometimes.

A lot of special needs people really like the monorails - they are wheelchair accessible and you can easily take a monorail from MK to any of the resorts around MK. They all have nice lobbies where you can sit for a while (often with one area where Disney videos are playing), or you can stroll around the grounds. Epcot is another monorail ride away.
 
One thing that will help with overstimulation is that he naps every day at around noon for about 2 hours. This will give him some quiet time before we venture out again.

I am thinking 4 days with most of that time in MK because he loves mickey and especially pooh bear so much. You could read him a pooh bear book 20 times in a row and he would want you to do it again.

I am thinking of some specific things in the other parks, like the lion king (is this loud? might have to bring ear muffs to that one. We have used them before in places where sound is the only issue he would have) or the show in MGM with Mickey...can't remember the name right now. I was looking at the attractions this morning.

I think unless it is a ride that he would really enjoy we will stick with stuff he can do from his chair.

I will give GKTW an e-mail and see if they can put me in touch with an aide or volunteer that has experience with folks like my brother. In talking with a couple of agencies, I specifically asked if they had folks on staff that had experience with folks in Billy's situation and there was some effort on their part to group all disabled folks in the same category. Needless to say this really made me angry as there is a big difference between an adult that is paralized and an adult that is for all practical purposes a toddler. it goes without saying that I won't be using either of those agencies. Both are in Florida.

Also one of the benefits to Billy's size is he can ride in the front seat of a car which makes it ALOT easier. He can see out the windows so he gets bored alot less I think than smaller children would. Of course that makes for some interesting looks from folks on the highway, but that doesn't bother me. People that get nasty spouting about how he has no business with a pacifier or bottle even if he is "slow" as they tend to put it and make him scared are what I was worried about in Disney.

There has been some questions or suggestions about Medicaid or Medicare covering the cost of some of this. I make Way too much money to be asking anyone to help with this. Money wasn't the problem, figuring out if this would be a fun time for him was what I was trying to do.

I thank you for the offer of the Passporter book but wish you to hold on to the one you offered me for someone that may need the help. I have ordered one today though!

Again, Thank you all very much!

Troy
 
cometzero said:
Troy if you would like me to get some postcards signed and mailed to your brother, I would love to help, Justin has his wish trip so we will be seeing lots of characters, if you'd like just email me a few of the ones you think he would like best ad I'll look for post cards with there pics and and try to get them signed. I don't mind at all, people have been such a help to me here I would like to give back, lyn

Sorry I forgot to say thank you for the offer. I think post cards would be a waste because he would EAT them... :earseek: and there is no place in his room with all of the pooh bear stuff he has already!! I really do thank you for the offer though.

Troy
 
Troy3357 said:
One thing that will help with overstimulation is that he naps every day at around noon for about 2 hours. This will give him some quiet time before we venture out again.
If you don't actually want to leave the park, he could rest at First Aid. Not quite as comfy as a bed, but they do have cots in individual curtained cubicles.
I am thinking 4 days with most of that time in MK because he loves mickey and especially pooh bear so much. You could read him a pooh bear book 20 times in a row and he would want you to do it again.......
I think unless it is a ride that he would really enjoy we will stick with stuff he can do from his chair.
I was home sick today with a cold, so I have lots of time today to post. I'm going thru each park, area by area. The things I don't list are either hard to board, turbulent thrill rides or scary (mostly dark).
MK probably has the most things he would like, if he loves Mickey and Pooh.
MK Attractions he might like:
Fantasyland
Pooh's Playful spot playground and a Many Adventures of Winnie the Pooh ride. The Pooh ride is very gentle and he will recognize everything - the ride looks just like the illustrations from the books. That ride has a wheelchair accessible car. He may be too large for some of the things in the playground, but just looking around it should be fun.
Small World is good, with easy access (roll the wheelchair right on). The music can get on your nerves though because it's repetitive.
Mickey's Philharmagic has all the characters in a 3D movie with lots of good music. If he won't wear the 3D glasses, that's OK. You might want the ear muffs for that because it is pretty loud.

He might like Peter Pan's Flight , but that's a hard transfer - a moving walkway that can't be stopped and limited time to transfer. Also, the ride car holds 2. If you get on with him and the aide gets on the next car, when you have to get out, he/she won't be getting out yet. The ride car is a flying boat and ends up above the ground, which he might not like. If you decide to try it, watch the boarding and unloading process for a while. It helps a lot to get ideas on how best to get on and off.
If he likes the Little Mermaid, Ariel's grotto is a character greeting area.

Toontown is great. There are walk thrus of Mickey and Minnie's house. There are a lot of things to look at; be sure to look in Minnie's stove and refrigerator. There are charcter greetings in the Toontown Hall of Fame.
The only thing I would not recommend is the Barnstormer. It is a short roller coaster, but would probably be too scary for him. Loading would not be that hard, but the cars are kind of small for 2 to sit (especially if you are as big as he is).

Tomorrowland
Buzz Lightyear is easy to get on (wheelchair car) and there is video at the link, so you can watch and see if he would like it.

He might like the Tomorrowland Speedway, but it is loud and smelly and it's possible your car might get rear-ended if the people behind you are not watching where they go. It requires a transfer.
Tomorrowland Transit Authority is a good ride, but nearly impossible to get to unless you can stand on a moving walkway ramp that goes from the ground to the second floor boarding area. We've done it many times, but my DD is only 5 feet tall and 86 pounds, so we can still pick her up.

Adventureland
The Enchanted Tiki Room has good music, but is about 12 minutes long. There are some dark parts and some simulated thunderstorms along with a Tiki godess yelling at the other characters.
I agree with people who already posted that he's probably like Jungle Cruise, plus there is a wheelchair boat.
The Magic Carpets of Aladdin is good and has a wheelchair car. You can either make it go high up or keep it flying close to the ground.
Pirates of the Caribbean says it's wheelchair accessible on this page, but it actually isn't. It's not an easy transfer -step down to the seat of the boat, then another step down to the floor of the boat. If the wheelchair folds, it can be thrown onto the boat onto the back seat. The first part of the ride includes skeletons, a skeleton head saying "Dead men tell no tales" , a drop in the dark and a ship shooting cannonballs across the scene as you go by. My nephew was really scared of this when he was about 5.

Frontierland doesn't have a lot.
Country Bear Jamboree is kind of loud, but has cute bears and music.

Liberty Square
The only thing he might like is the Riverboat. When you get on, pay attention to the chimneys (some drip hot water) and the horns.
I am thinking of some specific things in the other parks, like the lion king (is this loud? might have to bring ear muffs to that one. We have used them before in places where sound is the only issue he would have) or the show in MGM with Mickey...can't remember the name right now. I was looking at the attractions this morning.
Festival of the Lion King is a good one. Parts of it are loud, but if he knows the Lion King music and characters, he will like it. There is one point where they have people twirling fire batons.

Is Fantasmic what you mean about the show at MGM with Mickey? It's a night show with fireworks, fire and screens made of water that movies are reflected on. The theme of it is that it is Mickey's dream, that sort of turns into a nightmare. It is noisy and some kids get scared from the noise, the fireworks and the villans on the screens.

Epcot
The Living Seas is closed for renovation right now, but is scheduled to re-open on Nov 22. 2005. It's very relaxing to most people - like being inside an aquarium. Skip the movie - it's very dark and loud, with a lot of sudden noises. At one point, you will be invited to go "down" to the bottom of the "ocean" in hydrolators. They are actually large elevators that simulate a trip down. They are just for theming, not to actually take you anywhere. You can ask the CM to bypass the elevators.
The Land has a boat ride that is wheelchair accessible. Nothing scary.
Soarin wasn't open yet the last time we went. from what I have read, it's an easy transfer, but it does actually go into the air, so he may not like it. There is a "crotch" strap that is normally used for kids, but some people have posted that it makes adults feel more secure too.
Test Track might be too scary or he may love it - there are several fast stops and some swerves. There is one point where it looks like a truck is coming toward you in the dark. Many people say it is no scarier than driving on a highway. The normal boarding area requires 2 steps down to the level of the car. There is a separate wheelchair boarding area (ask if you want to try it) The ride car has a side to it about like a bathtub, so it's a bit like transferring to a bathtub at that wheelchair boarding area. The seat will fit 3 people. My DD loves it, but she is a daredevil.
Imagination is kind of iffy. It is easy to get on, with a wheelchair car. But it has a few elements that he might not like (there is a dark area with a simulated train going by you and there is a point where you get "sprayed" by skunk spray.
The only attraction in World Showcase I think he would like (besides just looking around) is the boat ride in Mexico. The wheelchair can be driven right on. There are a few things that might be a bit scary, but I have been on that ride many times and have never heard any little kids who were scared - just to warn you. The beginning is dark. As you get into the area with upbeat music, there are some sort of stylized skeletons (most kids probably don't even notice the skeletons - it's a celebration of Day of the Dead). At the end there are some simulated fireworks.

If you do go to Epcot, there are character interactions at various times and places. If you ask in Guest Services, they can usually give you an idea of when/where some of them will be.

Animal Kingdom
Besides the lion King, he would probably enjoy everything at Camp Mickey Minnie. There is a Pocohontas Show Pocohontas Show that shows a lot of animals. There is also a Mickey and Minnie meet and greet area in Camp Mickey Minnie.
He might like the Safari, which can be ridden in the wheelchair. It is rather bumpy though.

There are nature trails in Africa and in Asia that he may enjoy.

MGM
Beauty and the Beast is a very good show, especially if he knows the music. There are seats in the front and the back of the outdoor (covered) theater.

If he knows the Muppets, he might like Muppet 3D. There is one point at the end with pretend cannons and it is sometimes loud.

If he likes Little Mermaid, the Voyage of the Little Mermaid is good. It is pretty dark and some kids get scared when Ursula is on the stage. There is also water spray at points.
I thank you for the offer of the Passporter book but wish you to hold on to the one you offered me for someone that may need the help. I have ordered one today though!
Thanks for letting me know. I will save it for someone else.

Indiana Jones is a stunt show; some points are very loud with explosions and fire.
 
I re-read your post. SO YOU HAVE AN EATER TOO!!!! My DS eats everything...well chews it. We get notes from school that say "Today David ingested another button". We cut them off but sometimes we forget or he will be wearing an art smock etc.....
If you have time write a quick note to Pooh and he will send Billy an autographed photo. We did this for David. The address is in my previous post.
David likes Mickey and we bought some of those static window clings with Mickey on them for the car window...I am sure you can find Pooh somewhere. It may help with the car ride. It does for us.
I thought of a few other things. Call your hotel after you make your ressies and ask for a late check out. This gives you a little extra time before you leave to change diapers , nap etc. We always do this and we have never had a problem. Also, you may have to wait for check in (we waited 6 hours at POR last trip) We asked if they had a room we could just use for a diaper change and they found one for us. After the quick change we headed to the parks (they held our luggage) and then when we returned the rooms were ready.
Dont forget to ask for a fridge in the room if your brother likes to snack. We kept the fridge full of snacks for after nap and before bed.
Another great place to see Pooh is in Toontown in the "Tent" tell one of the CMs there about your brothers love for Pooh and they probably can arrange for him to se all the characters without waiting in each individual line. They did this for DS and it was so much easier!
Make sure you go to other hotels to see the decorations. David loved the ginerbread house in the Grand Floridian. He loved the smell and the bright lights and colors!!!! The monorail is great. They will push a ramp for you to push on the wheelchair and then call ahead so it is waiting for you at your destination.
Dont forget a "leash " for the pacifier. We forgot one for Davids chewie and we lost a few that way!!!
Dont forget to eat at the Crystal Palace for the Pooh characters and the Pooh and Tigger waffles!!
Have a great trip!!! HAve you decided where you will be staying? We have stayed at the Poly , Dolphin, Y and B Club and the POR. I think the Y and B Club was our favorite. They were all fantastic to David though.
 
I did not think of the static window stickers. That is a great idea.

The late check out is also a good idea. Will probably hold his nap for a bit so he is tired when we leave and sleeps a part of the way home.

I am glad to see that they helped with finding a room just to take care of a diaper change.

I definately will do the room fridge. He takes a bottle so that is a must have. He also takes chocolate pudding or applesauce for his medications and wont take either of them or his ensurewarm.

I have two pacifier holders to try and prevent losing them. I have ordered 2 pacifiers (orpro trainers) just to have 2 spares.

I am probably taking twice the amount of stuff than I need but would rather pay shipping on these things than come up short. Packing half of the necessities to ship and the other half to carry (pacifiers, bottles, diapers, wipes, blanket etc...) We use the Abri Form diapers that are more expensive but they are better for his skin and do a better job but can't buy them in most pharmacies so have to ship them and take a bunch of spares.

I talked with an Aide by telephone today that will go with. I want to see how she interacts with Billy before I say ok though. I Also called and made a reservation at the Contemporary. I chose that hotel more for it's location (walking distance to MK) and the fact it is on the monorail than for any other reason. I would rather have stayed at the Pop Century because everything I read says the rooms are colorful and well decorated and the Contemporary is an aging hotel.

This afternoon when I saw Billy I finally commited my self to this :earseek: I told him we are going to see pooh bear and he got so excited! Probably should have waited to do that though as he wanted to go RIGHT NOW! :)

I really wish to thank all of you for your help with all of this. You took an overwhelming idea and made it manageable.

Troy
 
Troy3357 said:
I Also called and made a reservation at the Contemporary. I chose that hotel more for it's location (walking distance to MK) and the fact it is on the monorail than for any other reason. I would rather have stayed at the Pop Century because everything I read says the rooms are colorful and well decorated and the Contemporary is an aging hotel.
I think you made a good choice. Going back to Contemporary for a few hours from MK would be fast/easy and you can either walk or take the monorail. You can also take the monorail to Epcot and get to MGM by taking the monorail to Epcot and then the boat from World Showcase in Epcot to MGM (and then reverse the process to get back to Contemporary). Pop Century would require buses to get anywhere.

Also, from Contemporary, you could watch the fireworks if you want without having to be in the park.
 
Troy3357 said:
I definately will do the room fridge. He takes a bottle so that is a must have. He also takes chocolate pudding or applesauce for his medications and wont take either of them or his ensurewarm.
The First Aid station in each of the parks has a refrigerator and will hold things like Ensure for you. (Although since you are so close, you may just choose to come back to the room for his food, i thought I would mention it).

Also, I don't know if anything about food came up, but if you are at full service restaurants, the checf can prepare things for him if he doesn't like/can't eat the food that is on the menu. I'm pretty sure they would also be able to blend foods for him at the full service restaurants.

Crystal Palace has a character meal with the Pooh characters.
 
It is good to know that the aid stations have a refridgerator! Billy takes a bottle of Ensure when he wakes up and another in the evening so those will be in the room. He likes chocolate pudding though so might make use of the fridge for that as that is how we give him meds.

He loves french fries!! This is one of the few foods he will eat without having to be coerced into it. Eggs are another food he loves but only scrambled with cheese. And of course any sweet pastry...LOL. After my mom passed he lost a good deal of weight. We could not get it above 140 pounds for some time. At his height that is way to thin. The Ensure helped alot with getting his weight back up. The chemotherapy did a number on him all the way around but he has come back around to eating again.

How late do the character breakfasts run? He takes his ensure when he wakes up at about 8 and then normally has a late breakfast about 9:30 or 10:00am. Do they run that late or am I going to have to wake him an hour earlier than his norm?

I haven't done any meal reservations as of yet. I am not really all that concerned about doing the restaraunt thing in the parks unless it is a character meal that Billy will enjoy. I can eat on the run or get room service when he is down for a nap or the night. I am hoping the Aide will see things this way too. From my perspective, this trip is entirely about that little boy. The entire goal is for him to have as good a time as possible.

Well I guess I should get back to work.

Troy
 
Most character breakfasts will run to about 10:30, so that is no problem.

Also, most of the character breakfasts have a station that will make omelets and/or scrambled eggs to order. So he can have all the egg and cheese omelets he wants!!!

Carol
 
ok, i don't want to seem rude by butting in... but i jsut wanted to say,i'm kinda new around here, and being a UKer i don't move off the UK boards much but this thread has really touched me... it's nice to know such caring and kind people still exist...

I really hope you guys have a fantastic time @ disney... and you are a great sister for doing this! Hopefully there'll be no bumps along the way...

(((Hugs)))
 
You can get chocolate pudding that needs no refridgeration, you can carry around with you. Gives you a snack to have on hand whenever you need it. I buy bulk box at Sams but they sell in 6 packs I think at the grocery stores.

If his true love is Pooh - eat at the Crystal Palace for the character meal (and last time we went all three meals served there are character meals). I would make sure you tell them your situation when making ADR so they could possiby get you a table as private as possible, not sitting out in the middle of the room. By the windows is very nice. Also at Toontown, Pooh & Friends are in one room for visits. When we went to ToonTown, 2 out of 3 rooms they let us go in alone (usually a few families at at time). Pooh ride of course is wonderful, and over by Splash Mountain is a shop I think is called Briar Patch, but it is the Hundred Acre Wood store and decorated in theme. He may enjoy being inside the tree trunk house. And the new playground may be fun to look at.

ps My son always takes his favorite Dis Character doll with him to have on the ride there and in the room.
 
urglewurgle said:
ok, i don't want to seem rude by butting in... but i jsut wanted to say,i'm kinda new around here, and being a UKer i don't move off the UK boards much but this thread has really touched me... it's nice to know such caring and kind people still exist...

I really hope you guys have a fantastic time @ disney... and you are a great sister for doing this! Hopefully there'll be no bumps along the way...

(((Hugs)))

Butting in?? Not at all!!!
Ummm...but last I checked....(whispered very quietly) I am his brother. :rolleyes1

Thank you for your kind words!

Troy
 
clkelley said:
Most character breakfasts will run to about 10:30, so that is no problem.

Also, most of the character breakfasts have a station that will make omelets and/or scrambled eggs to order. So he can have all the egg and cheese omelets he wants!!!

Carol

Excellent! I will call and make reservations this afternoon then.

Thank you!

Troy
 
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