DisneyWorld with a Profoundly Developmentally Disabled Adult?

[Troy3357]

Hi,

I am the brother of a developmentally disabled, wheelchair bound adult that is functionally and emotionally like a 2 year old. He finished chemotherapy about a month ago as he has a brain tumor and his projected outcome is not great. He loves Pooh Bear and Mickey and I wanted to take him to DisneyWorld because he would so enjoy it I think.

My concern is that there would be problems as he takes a pacifier and drinks from a bottle. My mother (who passed away 3 years ago) would never require he give these things up. It would be counterproductive (even cruel) I think to even consider trying to make that happen at this point.

So my question is has anyone had any experience bringing a profoundly develpmentally disabled adult to Disney? I can't imagine there would be a problem with the Disney staff, but what about other guests in the Magic Kingdom?

Also can anyone recommend an agency that could provide a Nurses Aide in Orlando while we are there?

Please let me know your thoughts on this,

Thank you,

Troy

[ZippyDooDah]

I'm sorry I can't offer you any help with your questions as I have no experience with handicapped/disabled persons. But you do what makes you and your brother happy. Our days with our family are precious and we never know when it might be our last so we should live each day accordingly. Live so you won't have any regrets later. Go, have fun, and God Bless You!

[SueM in MN]

You will find people of all types and abilities at WDW, some with abilities similar to your brother, some with more abilities. There may be some people who look at/stare at your brother, but most will be seeing his enjoyment and enjoying that.

I don't have time to write a lot right now, but some things that would be helpful in giving you advice would be:
Can he walk at all, even a few steps?
If not, is he small enough to lift?
Can he sit outside of his wheelchair (like for rides that require someone to sit in a ride car?
Do you need to to rent any special equipment (like lift, bath chair, hospital bed)?
How comfortable are you in caring for him and explaining his care (at the very least you will need to be able to assist/teach the Nursing Assistant)?
Will the funding source that pays for his care at home pay for his care when you are at WDW?
Will it just be you and him or will you have additional people in your party?

[JenJen]

Troy I just want to applaud you for taking your brother to Disney. It will be a lot of work but it will mean so much to him. Don't worry about what other people think who cares. People are going to give you looks because this world is that way. I would Go to Guest relations as soon as you get to WDW and explain his needs and get a GAC because I don't think that at his developmental level he can understand the concept of waiting in a line. Also I am not sure how moble he is but you may need to get him a wheel chair because not only will it help if he has a mobility issues but it will give him a sense of security in a confined space. I really hope you two have a wonderful time (I know you will) and please give us more information about his needs so that we can better assist you.
(((((((((((((((((((((hugs))))))))))))))))))))))))
JenJen!

[YangYang]

I have been to WDW many times with my sister. She is 22 years old and is developmentally about 18 months old. Although she can walk, she is very unsteady on her feet so we use a wheel chair at WDW. She has her own which we push - she could never manage an electric one. Many of the rides/shows can be enjoyed from a chair. I would definitely recommend doing a character meal if he enjoys the characters. The ones at the resorts are sometimes less hectic than the ones at the parks. Although people do stare at her (and us) it is no worse at WDW than it is here at home. WDW is by far the most handicapped friendly place we have ever been. The CMs are wonderful to my sister and we have had numerous special moments with characters who make a special effort with her. Make sure when you make your hotel reservations that you let them know of any special needs you may have. I would strongly urge you to find out as much as you can before going. The people on this board are wonderful and know so much about traveling with people with special needs. I don't contribute much but I have gotten loads of information from reading the posts. I think probably the most important piece o fadvice may be to ask for help from CMs if you need it. They are fantastic! Once when traveling with an epileptic friend, I had to ask for a ride back to our resort - he was having seizures and could not possibly have made the trip by resort bus. The found someone to drive us back to our resort in a van.
I could write a book on this subject but I'll let you decide if you have any questions that you think that I might could answer Feel free to pm me if you would like.

[Troy3357]

I really, REALLY want to thank all of you that responded to my questions. You have no idea how much it helps to have folks that understand. I have had some difficult times in public places with rude people and while this might happen at Disney, I think it will be less of an issue. I just want to make him happy.

To answer some of your questions though:

He is 6 feet tall and weighs about 170 pounds.
He has his own wheelchair.
Yes he can take about 4 steps with assistance. Can only stand for like 20 or 30 seconds though.
He can even transfer from his wheelchair to another chair with guidance.
We will bring a bath chair with as we are driving. The airline would be a nightmare for him I think.
I have no problem with feeding him or explaining his care, but am not comfortable with providing some of his care (diaper changes, baths etc).
As for a hospital bed, I would rather not go that route as again I want to get away from the institutional feel. He has been in the hospital for about 4 months now and I really want this to be about as far from hospital like as possible. Just lots of hugs and giggles with a few wide eyed stares at the wonder of Disney is what I am hoping for.
I am covering the cost of his care while at disney. I will need to find an Aide to do this though.
It will be just he and I and an Aide.

He resides in a residential facility. I have taken him on outings for an hour or two before but nothing like this.

Again I am very grateful to all of you for your understanding and your support with this. I want to go around December 1st or so. Less crowded I am told and that would be better for him.

With any luck he will be in heaven being able to see pooh bear and mickey and all.

[Cheshire Figment]

I have no problem with feeding him or explaining his care, but am not comfortable with providing some of his care (diaper changes, baths etc).
For diaper chages if needed while in the parks, each has a First Aid station you can go to and they will provide a private space and an examining table he can lie on stretched out.

[D,L and K's Mom]

We have a 16 year old son who is at an 18 month level after having a stroke when he was 6 months old. He is in diapers and can only walk for a short time. We bring his chair with us. HE LOVES WDW and the CMs are FANTASTIC...... We always take him when we go and have never, ever regreted a minute!!!! A few things to remember



HEAT!!!! it is so hot in the summer time. Make sure to take breaks.
The First Aid stations are fantastic for letting you have a room and a bed to change diapers. Just go in an explain the situation. They are wonderful.
The baby changing stations are great too. They have let us use the nice quiet dark rooms for an hour or so to calm DS down and cool off.

Make sure you get a GAC pass....they are a God send.

Make sure you are in a handicapped access room. Call a few days ahead to make sure everything is correct on your reservations.

Use the Special Services person when making the reservations. They are fantastic. Call the Disney World ressies number and then ask for special services.

Does you brother like tv or videos? We always bring a portable DVD player with us to watch familiar DVD's while in the restaurants etc...it keeps DS calm when things are familiar. We also eat early to avoid large crowds.

We wanted DS to see Mickey so we waited in line at Toon Town in the "Tent" the CM pulled us out and let us go in the back entrance and we were able to see all 9 people (Mickey, Minnie, Pluto, Pooh, Tigger, Piglet, Cinderella, Belle, and Aurora) without waiting in the line. I know this sounds like we were taking advantage of the situation but it is a special circumstance...waiting it very hard. DS loved POOH and Mickey. The smile was priceless.

Make sure to bring baby wipes or hand sanitizer and use it afte every ride. DS puts his hands in his mouth and after touching the ride handles I made sure to clean his hands.

Make sure you have the number for Turner Drugs handy and a copy of any perscription you may need while you are there. DS pills got spilled into the sink and we had to get a new perscription filled. We had the perscription and got them at Turner Drug (they will deliver to the rooms for I think $5.00) Also )I hope you don tneed this but) there is a great Dr service that comes to the hotels. We used it a few trips ago. We called down to the front desk and they had the #. We called and the Dr came within 1/2 hour right to the hotel. HE also had the perscriptions with him. We had to pay the $250 and then we were given the money back by our insurnace company after submitting the reciept.


Make sure to bring extra rain gear and shoes. After the rain DS feet were always soaked from sticking out from under his rain coat. We put water shoes on him at teh first sign of rain and then changed him back to sneakers as soon as it cleared so his feet were warm and dry.

If you are eating out and there may be some problems make sure you tell your server. On a few occasions DS would not eat in the restaurant (too noisy, too bright, too colorful etc) We were not charged for his meals and on a few occasions they boxed them up for us for later. He did eat outside when we left The Prime Time and when we went back to try to pay they said "no" and smiled at David and said they were glad he enjoyed his meal.

Have a great time. Make sure to tell all CM's at the attractions that you have speical needs as soon as you see someone. They will make waiting as comfortable as possible and they will make some extra MAGIC for your brother. When DS got off the Rocking Roller Coaster they had a picture and a certificate waiting for him!! He loves the FAST rides.

Make sure you have the Disney Photo people take photos with your brother with the characters!!! They come out great!!!! Also if you can write to Pooh and Mickey before you go...they will send a photo and and autograph for your brother. We have Mickey, Minnie and Bear fromt he Big Blue House! the address is.....


The Walt Disney Company
Attn: Fan Mail Dept. - (Character Name)
500 South Buena Vista Street
Burbank, CA 91521

If you don't get the photos in time ask at the desk at your hotel and they may surprise your brother. We spoke to the CM at the desk and DS had a photo of Mickey on his pillow that night!!! We were at the POR.

Unfortunatly we have seen and HEARD from a few Rude people but....ignore them. We have learned to smile and ignore them. DD says things like....I know he's handsome isnt he" to people who stare. I have just learned to ignore comments. When we are being ushered into the back entrances we have heard things like that is not fair etc. but doesnt bother me anymore. I just figure they have never had to deal with what we have to deal with so they don't know. Most people you encounter will be WONDERFUL and will hold doors, move over to make room etc. Ignore the rest and have fun!!!!



Have a great time!!! You won't regret it at all. The smiles will be payment for all of our hard work!!!!!

[kaytieeldr]

Troy - is there a Social Worker at your brother's residential facility who can help you with the arrangements for a nurse's aide?
I was at first thinking that somebody at the facility might be in a better position or have better contacts in other states to make such arrangements, but then it occured to me - is there an Aide at the facility whom you could bring with you, one who your brother likes and who takes good care of him? I don't know how that all works, but it might be worth considering.

[D,L and K's Mom]

I am not sure but check to see if your brother's insurance (medicaid, private health insurance, etc.) would help to cover the cost of a nurse or health aide for your trip. If he is in a residence it may cover some of it for you.....if the company that you choose takes benefits. Also, make sure you take advantage of shipping down some of your supplies (diapers, wipes, etc.) We ship a large box to the hotel before we go so our stuff is there waiting for us! Even though you are driving it sounds like you will need room for shower seat, wheelchair etc. I would ask special services about bed rails and even the shower chair they may have one or have a room with a shower seat built in the shower.......it does not hurt to ask. Good Luck!!

If you are taking bottles etc don't forget to take dish soap etc to wash them out. Things like dish soap are hard to find in WDW and when you find them they are $$$$.
We keep a list of everything we use in a day with our DS and then we doulbe check to make sure we pack it! For instance we use rubber lap pads on the bed at night, we also use a swim diaper for the pools (they wont let diapers go in the pools) a mini fan for the parks, a baby gate for the room (we ship this), nightlights, hand sanitizer, wipes, huggies bath wipes, baby shampoo (the hotel shampoo hurts his eyes), if your brother uses a pacifier make sure you have extras (David uses a chew toy and we have to bring backup ones in case we lose it in the park), a big diaper bag to carry all his supplies into the park, we buy a case of H2O and carry 6 bottles into the park with us to keep costs down.


Make sure you bring insurance info with you in case you need midical care. Also a list of medications if your brother is on any. As I have said before we have used the in room health care once and the Celebration Hospital twice. They are great and treated David wonderfully. The ambulance service was fantastic and they were super to David. I hope you dont need them but if you do they are very very nice.

Make sure you make a ressie for Chef Mickeys or The Crystal Palace. The Chef Mickey breakfast is great but LOUD. They have Mickey Mouse, Minnie Mouse, Goofy, Chip and Dale and Pluto. The Crystal Palace has Pooh, Eeyore, Piglet and Tigger. It is calmer and more low key. My DS prefers this one. It is an all you can eat brunch and he loves to eat!!! If you cant get ressies talk to special services they may have a few hints as to when would be a good walk in time for you.

DS also loves the breakfast at BOMA (also buffet) after we walk around the hotel and see the animals. He loves that!

Have you ever been to WDW before? Just curious. I know there is a guide for people with speical needs. If may be very very helpful for you. We have been 8 times with David throughout the years. I would be glad to help you anyway I can. Just PM me and I will respond! I think it is wonderful that you are doing this for your brother! :)

[eternaldisneyfan]

These two agencies have travel companions for hire. The first one specializes with developmentally disabled adults:

http://members.tripod.com/~Travel_us/index.html
http://www.disabilitytravel.com/companions.htm

Ride accessibility:

I use an electric wheelchair full-time and can't sit up without complete support. Our last trip to Disney World I spent about 10 hours researching wheelchair accessible rides. I didn’t transfer for any rides and still had a fantastic time.

Here is a list of rides that you can drive your wheelchair directly onto without transferring, sorted by park:

Magic Kingdom---

Buzz Lightyear's Space Ranger Spin: (note:the shooter is hard to reach, especially with contractures)

Stitches Great Escape (note-the bars that come down on the shoulders could be painful, especially if they are drawn up like mine-I haven’t ridden it-this ride has got a lot of bad reviews)

Many Adventures of Winnie the Pooh (Takes you through several classic scenes-awesome-easy access)

it’s a small world (easy access)

Liberty Belle Riverboat (Tour around a lake with some props and animatronics-kinda long-chair sits below level of bars, partially blocking view)

Main Street U.S.A.-Railroad-steam train ride (I loved it. Round trip is best, there are scenes along the way. )

Jungle Cruise (recently converted-but you have to request the wheelchair boat)

The Magic Carpets of Aladdin (too short for some chairs)

All the Character Greeting Areas and shows are wheelchair accessible. There are always spaces for wheelchairs with seats for family members adjoining
(Storytime with Belle, etc. all children sit on the floor up front)

Swiss Family Treehouse and Tom Sawyer Island are impossible for wheelchairs (you can do a roundtrip on the raft that goes to Tom Sawyer Island)

All night-time shows and parades have special wheelchair viewing areas-ask a CM, they're marked on a map- nighttime shows are my favorite and are well worth the wait


Epcot—

Ellen’s Energy Adventure (easily accessible-cute Jeapordy style beginning that then takes you back in time to Dinosaurs)

Journey Into Your Imagination (easily accessible-really cute/fun ride with a fully accessible interactive special effects playground afterwards)

Living with the Land (informational tour about various climates and agriculture)

El Rio Del Tiempo (accessible-boat ride tour of Mexico)

The Living Seas (all areas accessible, although some areas may have alternate access. At your own pace viewing of a live sea aquarium and the new Crush attraction)

The World Showcase (all areas (accept Maelstrom in Norway) accessible, although some areas may have alternate access)

Street shows are hard to see unless you arrive a little early to sit in front

All the Character Greeting Areas and shows (including Innoventions) are wheelchair accessible (*note: The Kid cot fun stop crafts will be difficult to do unless you have a tray on your wheelchair because the table and chairs are low and the supplies are scattered)

All night-time shows and parades have special wheelchair viewing areas-ask a CM- nighttime shows are my favorite and are well worth the wait

MGM Studios—

Great Movie Ride (note-this ride doesn't fit all wheelchairs-my standard Invacare action electric wheelchair didn't fit and I had to ride sideways)

All the Character Greeting Areas and shows are wheelchair accessible

MGM has a lot of good shows.

All night-time shows and parades have special wheelchair viewing areas-ask a CM- nighttime shows are my favorite and are well worth the wait

Fantasmic-(The best nighttime/overall show. Note: Use the wheelchair seats in the back and get there early to ensure a good seat)

Animal Kingdom-

Wildlife Express Train (train that shows you how Disney cares for their animals and takes you to the Conservation Station-may have to back on)

Triceratop Spin (similar to Aladdin's Flying Carpet)

Kilimanjaro Safaris (mild thrill ride with a guide that drives you through authentic habitats to view real exotic animals-best experienced in the morning).

All the Character Greeting Areas and shows are wheelchair accessible (*the Boneyard is not. *Conservation is listed as accessible but I didn’t visit it.)

All the nature trails are accessible and have beautiful wildlife. There are many exhibits-a few viewing areas are a little difficult to get to.

The parade has a special wheelchair viewing area-ask a CM

I only transferred to rides when I was younger and stronger. The last trip I didn’t transfer to any rides and still had a fabulous, magical trip with the plentiful wheelchair accessible rides and awesome shows. Always carefully weigh out the risks of transferring.

I hope I helped.

Remember all shows are wheelchair accessible-don't miss the nighttime shows-especially Fantasmic-and don't miss Festival of the Lion King.

If there is anyway he can transfer, I would do it for Soarin’ in Epcot. The ride is awesome. Even I was able to do it. You can pull your chair right up to seat and the movements of the ride are smooth.

Have a great trip!


Christamae

[cabowser]

When we were at Disneyworld in June with our kids we got a Guest Assistance Card for our son with severe autism. He is on a much higher level of functioning, but it was really handy. You don't have to stand in any lines, just to to the handicapped entrance and flash the card, they will do it all for you.

I encourage you to go, you will enjoy it and I bet he will too. Our son made so many gains in his speech and his behavior while we were there that we were stunned. This is a child who at 5 had never said more than 2 words at any time. The day after we got home he took me to the car and said, "Go fly airplane go walt disney world, mommy?" This child had never even called me Mommy before.

There is magic there and those who feel it the most are those who are closest to childhood, I believe. Take him and bless you for doing it.

Jan :earsboy:

[Poohs Pal]

Troy, I agree with a previous poster. Try the residence where your DB is residing,maybe they can help you with finding caregivers. You may be Happy to find that someone from the residence may want to go and help. I'm taking my adult DS to disney for the first time since he was severly brain injured in a auto accident at age 13. If you choose to stay at disney explain your situation and your reservation will be done through special needs. You can get bed rails for the bed if needed. They don't provide shower chairs so we are bringing our own. Another thing we are doing is using codomn cathaders so he won't need a diaper change while in the parks(hopefully). If he does we will utilize the first aide stations. When making dining reservations I've asked that we be seated at a table(if possible) close to the exit just in case DS can't handle the noise and I must make a quik exit(he may start to holler). We are going in December to avoid the extreme heat. We will get a GAC. We are also driving as flying really isn't an option for DS. We are also bringing caregivers so I can just be his Mom for a change and enjoy the experience with him. This is a graduation trip for DS so we have done a lot of planning and we also have many family members coming with us. You are doing a great thing not just for your DB but for you self :cheer2: . If you have any specific question's on our planning I will be glad to help if I can. Also for your DB supplies you may be able to contact a DME in the area and have them delivered to your hotel. Susan

[Troy3357]

Again I wish to thank everyone for their valuable insight on this.

Katieeldr you asked about an aide from the facility he lives at coming along. He lives in a residential facility (a group home) not a large facility so the staffing is tight as it is. I have inquired about someone they could refer me to.

D, L and K's Mom you pointed out some things I had not thought about. Shipping supplies ahead of time, night lights and such. Thank you!!

Eternaldisneyfan you gave me information on the rides that would be easiest for him to enjoy. Thank you!!

Cabowser I agree with your statement "There is magic there and those who feel it the most are those who are closest to childhood, I believe." whole heartedly.

Pooh's Pal That is a good tip about being close to an exit when making reservations. I am very reluctant to use condom catheters on Billy as he is susceptable to infection post Chemo and they raise the risk alot of urinary tract infection. He has only had 3 UTI's in his entire life with the diapers so I think I will stick with what works.

Again thank all of you for your help with this. If you can think of anything else that would be helpful, please pass it on!! I will let you all know how the Aide search goes.

Thank you again,

Troy

[SueM in MN]

WOW. A lot of good information.
EDITED TO ADD: I starting writing this before your last post. After I posted, I saw what you had written.

I'm going to try to cover some things other people didn't yet.
He is 6 feet tall and weighs about 170 pounds.
He has his own wheelchair.
Yes he can take about 4 steps with assistance. Can only stand for like 20 or 30 seconds though.
He can even transfer from his wheelchair to another chair with guidance.
Because of his size and that he can only stand for a few seconds, I'd suggest you stick to things you won't need to transfer for.
Some of the rides that require transfers are not easy transfers, even with my 5 foot tall 86 pound DD who can stand for a long time as long as she is supported. Some of the ones that are fairly easy transfers (like Tower of Terror and Star Tours) would be way to scary for someone at a 2 yr level. As you can see from what eternaldisneyfan posted, there are still a lot of things in each park that he will enjoy.
If there are any rides that require transfers that you think he would like, post them here and you will get more information on what that ride is like for transfers.
Also, if there are any that you have questions about as far as whether there is anything that might scare him in a ride, post those too.
The DIS site has good overview/information pages about each park.
Here's a link for the Magic Kingdom page. (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/tomorrow.htm)
And here's one for Epcot. (http://www.wdwinfo.com/wdwinfo/guides/epcot/ep-overview.htm)
And one for the Studio. (http://www.wdwinfo.com/wdwinfo/guides/mgm/st-overview.htm)
And one for Animal Kingdom. (http://www.wdwinfo.com/wdwinfo/guides/animalkingdom/ak-overview.htm)
Someone suggested a portable DVD player. Here are 2 DVDs that he might like:
Flik's Musical Adventure (http://www.amazon.com/gp/product/B0009X75XS/103-9460461-6946208?v=glance&n=130), which is a sing along DVD showing Animal Kingdom and another sing along called Disneyland Fun (http://www.amazon.com/gp/product/B0009X75W4/103-9460461-6946208?v=glance&n=130) . Even though it is Disneyland, many of the things you will see are very similar to WDW. It also is a good introduction to how big the characters are. It might not be as a problem for him because of his physical size, but the size of the characters is intimidating for many children, and since he will be in a wheelchair, they will be tall compared to his eye level. My DD feels kind of "smothered" by those big characters and usually doesn't want to see them. Your brother might like to watch from a distance before he actually has any interaction. The character meals are good for that - you can see other people interacting with the characters before they get to you.
The characters themselves are very gentle and god at interacting with people with disabilities.
We will bring a bath chair with as we are driving. The airline would be a nightmare for him I think.....
As for a hospital bed, I would rather not go that route as again I want to get away from the institutional feel.
If you need other equipment for him you can rent other things from:
http://www.caremedicalequipment.com/
The reason I asked about the hospital bed is that hospital beds are adjustable height; this makes it easier for a caregiver to transfer him in and out and do his cares without worrying about back injuries. Depending on how he transfers and how high (or low) the bed is, without a height adjustable bed, you may need a lift.
I have no problem with feeding him or explaining his care, but am not comfortable with providing some of his care (diaper changes, baths etc).
I am covering the cost of his care while at disney. I will need to find an Aide to do this though.
It will be just he and I and an Aide.
He resides in a residential facility. I have taken him on outings for an hour or two before but nothing like this.

I also thought like some of the other posters that you should check with the residential facility to see if any of the aides who know him would be able to come with you.
I think it would be very important to have someone he is used to besides you coming on the trip. His security is with the routines and the same people around him. If you can bring one (or even more) of those same people with you, that would help immensely. Especially since at a 2 yr level, he can't really understand why things are happening. One of his caregivers might be very willing to accompany you to WDW. Many times the caregivers get very attached to the residents they are assigned. You might find if you ask, that you will find some more than willing accomplices in your plan.

However you travel, you will need to have someone with you while you travel to help you with him. I don't know where you are traveling from, but a drive of even a few hours with just you and him might be very difficult, especially if you don't know how he travels - like does he like riding in the car for long distances or not? Is he likely to do distracting things, like pulling on your arm or your seat while you are driving? Depending on how he is in the car, you may find that the advantages of flying outweigh the disavantages.

As was already mentioned, the place he is living at might have some "connections" in Orlando that would be helpful to you. If you are able to bring one caregiver with you, you will still need some additional caregivers to give the one you brought at least a bit of time off. You need to know how much care your brother needs at night too; for example, once he's in bed, is he set for the night or does he normally get turned and/or have diaper changes. His facility should be able to help you with some care plans to direct his care.
If there is not a social worker at the facility, he will have a county caseworker who can help you sort things out. As was already mentioned, they may also be able to help you with getting his care paid or partailly paid for. You also want to make sure that your trip doesn't put his placement at the facility or his payment sources into an jeapardy. The social worker or case worker can help make sure that's taken care of too.

Another thing to think about is who is his legal guardian. If it's you, you are all set. If it's someone else, you will need to get their agreemant for your plan and you'll also need to get a notarized letter from them that allows you to authorize medical care if any is needed while on your trip.

The last thing I have to say is something no one else has said and you might not want to hear....
If you have taken him for outings of 1-2 hours at a time, but no longer, you are not ready for a WDW trip, at least not yet.
Think of going to WDW like running a marathon. You would not go out and run 26 miles without doing a lot of training and preparation. Getting information like you are getting here is very good preparation, but going at this point would be like running a marathon when the farthest you had ever run before was 2 miles; the more training you get, the more chance you have of success.
So, before trying the "marathon", I'd suggest you go on some "shorter runs" first. Take a few long drives, have an overnight trip, work up to a long weekend. Those kinds of things will help you see things that will help you on the "marathon".

Good luck and keep asking questions. Also PM me because I have something helpful I would like to send to you.

[SueM in MN]

I am very reluctant to use condom catheters on Billy as he is susceptable to infection post Chemo and they raise the risk alot of urinary tract infection. He has only had 3 UTI's in his entire life with the diapers so I think I will stick with what works.
Being an Infection Control Nurse, I thought I would mention that condom catheters (which sort of stick on the out side and are just what they sound like for people who are not familar with them) have a lower risk of infection than indwelling (the kind of catheters that are inserted into the body). As long as the patient is not pulling on or manipulating the catheter, the risk of infection is low. Here's a link to one article abstract summary. (http://jama.ama-assn.org/cgi/content/abstract/242/4/340) Just in case you want to explore the possibility with his doctor.

[HopperFan]

Troy,

I am getting off the computer now, you made me cry. My oldest is disabled and while no where near the issues you are dealing with physically, will never be independent. His younger siblings are wonderful with him now, and I always worry that they will continue to be there for him when they are older. They are his entire world ! I'm already worried that in two years his brother will be at college and will he be able to handle that emotionally. It is one thing when they are living together, but what will it be like when they are all on their own somehwere. 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 are an incredible brother, taking on such a task to see joy on his face ! I hope you have the most magical trip possible ! Please keep us posted on your plans !

Much pixie dust your way :wizard: :wizard: :wizard:

[BCV23]

Troy, I just wanted to say God bless you. :grouphug: Much pixie dust to you and your brother for a wonderful trip! :wizard:

[clkelley]

You mentioned you might want to go on December 1st. If it is THIS December 1st, you might be in trouble as far as room availability if you want a Disney resort.

They are very booked up in the Value and Moderate levels, for that week and most certainly by now all of the accessible rooms are full.

Also, since you have lots of other care issues to take care of, maybe late January, early February might be a better time. It is still Value season then.

Carol

[cometzero]

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

[D,L and K's Mom]

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.

[FergieTCat]

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.

[Troy3357]

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

[SueM in MN]

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,L and K's Mom]

See...this is why I LOVE LOVE LOVE these boards!!!!!!!!

[SueM in MN]

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).

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.

[SueM in MN]

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.

[Troy3357]

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

[Troy3357]

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

[SueM in MN]

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. (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/fan-pooh.htm#ppspot) 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). (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/fan-small.htm) The music can get on your nerves though because it's repetitive.
Mickey's Philharmagic (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/fan-philharmagic.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/fan-flight.htm) , 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. (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/fan-grotto.htm)

Toontown is great. There are walk thrus of Mickey and Minnie's house. (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/toontown.htm) 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) (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/tom-buzz-lightyear.htm) and there is video at the link, so you can watch and see if he would like it.

He might like the Tomorrowland Speedway (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/tom-speed.htm), 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, (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/tom-tta.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/adv-tiki.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/adv-jungle.htm), plus there is a wheelchair boat.
The Magic Carpets of Aladdin (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/advaladdin.htm) 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, (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/adv-pirates.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/fro-country.htm) is kind of loud, but has cute bears and music.

Liberty Square
The only thing he might like is the Riverboat (http://www.wdwinfo.com/wdwinfo/guides/magickingdom/lib-riverboat.htm). 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 (http://www.wdwinfo.com/wdwinfo/guides/animalkingdom/ak-camp-fest.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/epcot/epfw-livingseas.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/epcot/epfw-theland.htm) that is wheelchair accessible. Nothing scary.
Soarin (http://www.wdwinfo.com/wdwinfo/guides/epcot/epfw-soarin.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/epcot/epfw-testtrack.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/epcot/epfw-imagination.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/epcot/epws-mexico.htm). 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 (http://www.wdwinfo.com/wdwinfo/guides/animalkingdom/ak-camp-poca.htm) Pocohontas Show (http://www.wdwinfo.com/wdwinfo/guides/animalkingdom/ak-camp-poca.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/animalkingdom/ak-africa-safari.htm), 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 (http://www.wdwinfo.com/wdwinfo/guides/mgm/st-batb.htm) 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 (http://www.wdwinfo.com/wdwinfo/guides/mgm/st-muppet.htm), 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 (http://www.wdwinfo.com/wdwinfo/guides/mgm/st-mermaid.htm) 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. (http://www.wdwinfo.com/wdwinfo/guides/mgm/st-indiana.htm)

[D,L and K's Mom]

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.

[Troy3357]

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

[SueM in MN]

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.

[SueM in MN]

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.

[Troy3357]

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

[clkelley]

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

[urglewurgle]

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)))

[HopperFan]

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.

[Troy3357]

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

[Troy3357]

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

[Troy3357]

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. .

Needs to be refridgerated. He won't eat it warm. Don't ask me why :)


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.

Good ideas!

Billy won't go anywhere without his Pooh Bear! I need to get another one while I am there. Probably two just in case they stop making them. The one he has is not the regular brownish one but the really soft cream colored one they make for babies. A friend of my Mom's got the one he has at Disney 5 or 6 years ago and it's time for a replacement I think. I have tried to find these at the Disney Store over the last few days so we could take one that doesn't look so worn but they don't carry them there. Said they would have them in Disney though.

Thank you!

Troy

[D,L and K's Mom]

We put a small name tag on DS stuffed animal just in case it got lost. We put our name and our cell # on it. We also put a tag of DS shoe (one of those pet tags you can make at Walmart). We did this just in case.....I am always paranoid even though he can't run far. I just fear that I may somehow get seperated from him.
The contemporary if a very nice hotel. We have a dinner there when we go. I love the monorail. If you can try to get over to the Poly to see the birds...it is lovely to sit in the beach and watch the electric parade on the lagoon. I bet Billy will love the monorail! It is a nice quiet ride and it is soothing. I think the Poly is only one stop away from the Contemporary.
In Down Town Disney they have a Pooh store. DTD is nice to walk around and get and ice cream etc.
Sounds like you have a great trip planned! Have a great time!!!

[HopperFan]

I need to get another one while I am there. Probably two just in case they stop making them. The one he has is not the regular brownish one but the really soft cream colored one they make for babies. A friend of my Mom's got the one he has at Disney 5 or 6 years ago and it's time for a replacement I think. I have tried to find these at the Disney Store over the last few days so we could take one that doesn't look so worn but they don't carry them there. Said they would have them in Disney though.



My son's is QUASIMODO, not common. AND the doll was a Burger King puppet that was sold when the movie came out, 1996. No other will do. A friend thought to get an extra at a garage sale and then I got nervous as the doll became more and more important, so I bought several off ebay. Finally 8 years, many doll surgeries and one less arm later, he allowed himself to attach to a new one. His sister actually did the transition with him over a weeks time. I do have the old pitiful soul put away, maybe to put in a plexiglass box. He went through many hardtimes and even in surgical rooms with him, he deserves the honor. Sorry, my point, YES buy a few !

[SueM in MN]

I need to get another one while I am there. Probably two just in case they stop making them. The one he has is not the regular brownish one but the really soft cream colored one they make for babies. A friend of my Mom's got the one he has at Disney 5 or 6 years ago and it's time for a replacement I think. I have tried to find these at the Disney Store over the last few days so we could take one that doesn't look so worn but they don't carry them there. Said they would have them in Disney though.

Thank you!

Troy
There is Pooh stuff in lots of places (I think it sounds like what he has is called "Classic Pooh").
There is a Pooh shop in MK around the Winnie the Pooh ride (many of the rides end in gift shops). Also, in the UK area of World Showcase in Epcot, they have one gift shop that has Pooh stuff (look for the shop called "the Tin Soldier").
There are also shops in the Contemporary and you may be able to find a Pooh there. When we were there last, they did have baby stuff.
You may have already found this page on the DIS site, but it has video of the Contemporary. (http://www.wdwinfo.com/wdwinfo/resorts/contemp.htm) I couldn't get the link for the "Real" clip to connect (so the link might be broke), but the WMP link worked fine.

[Troy3357]

We put a small name tag on DS stuffed animal just in case it got lost. We put our name and our cell # on it. We also put a tag of DS shoe (one of those pet tags you can make at Walmart). We did this just in case.....I am always paranoid even though he can't run far. I just fear that I may somehow get seperated from him.


That is a really great idea. Tag the bear!

Hmmm...now you got me worried. Never occurred to me that we could be seperated. Actually I rather doubt that would happen as I never let him out of my sight when I take him anywhere. Still not a bad idea to put something on his person and on his wheelchair just in case. Although I can't see both the aide and myself getting seperated from Billy but better safe than sorry.

Troy

[Troy3357]

I do have the old pitiful soul put away, maybe to put in a plexiglass box. He went through many hardtimes and even in surgical rooms with him, he deserves the honor.

A shrine I say!!!

I will get several just in case and I will put up his current one so that I will always have it.

Troy

[cometzero]

does he have a medic alert bracelet? maybe you could look into one of those for the trip and whenever you take him out at home,Lyn

[Troy3357]

does he have a medic alert bracelet? maybe you could look into one of those for the trip and whenever you take him out at home,Lyn

He does have a medic alert bracelet that has his name and medical history and meds on a paper inside. No contact info though. I guess I should have seen to it that the contat info was there. This never occurred to me because he cannot really walk off. Heck he can't get out of his wheelchair unless someone releases his belt. But it should be there. I am curious why the staff at his home didn't put that info in there. They ordered the new one. The old one was the old style that didn't open. I will ask about that when I see him tomorrow.

Thank you for pointing this out!

Troy

[joanchris]

I
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.


Troy


Troy, I've been reading this thread tonight and I must say you are a wonderful brother and I do hope that someday my daughter will care for her sister similarly.

We just returned from our first family trip to WDW, and stayed at the Contemporary, for just the reasons you mentioned. Nothing beat the ability to just walk over to the Magic Kingdom, or to just hop on the monorail with the wheelchair. The bus transport was very good, but nothing beat the convenience of the times we could use the monorail.

You have been getting wonderful advice here. We shipped supplies ahead of time and when I was checking in the CM at the desk had a note in the computer noting that we had two packages waiting in the package center. Just fabulous having things there that we would need.

We, too, had more supplies than we needed, but especially since we didn't have a car while there it was necessary, there was no running out to the store for diapers and such.

Good luck!

[lil.disney.princess]

aw reading your posts have been very moving...........i hope that you and Billy have a fantastic holiday-what a lovely thing for you to do for your brother.....and he has great taste-i love pooh too :D :love:

[Poohs Pal]

Troy, For our trip in december I am taking a sheet of small poster paper and gluing a picture with DS name next to it. Then i'm adding any allergies along with what meds he takes and the time and amount. Also adding a short medical history and doctors name and phone numbers. I will have this laminated and kept in his wheelchair bag in case of any emergencies that may occur on our drive down and during our time in the park. I will also carry in a plastic bag a copy of guardianship papers for just in case he needs medical treatment. I would have never thought of the guardianship papers but I took DS to get feeding tube replaced(i always replace it myself now)and the person checking us in wouldn't even let me register because I didn't have the papers with me. She was trying to send us home and DS doctor came out and heard the conversation and just took us back to the outpatient rooma and changed the tube. I'll probably be a little over prepared but it is DS's first trip out of state since the injury. We went on short trips with in our state and this has helped to prepare us. susan

[SueM in MN]

I will also carry in a plastic bag a copy of guardianship papers for just in case he needs medical treatment. I would have never thought of the guardianship papers but I took DS to get feeding tube replaced(i always replace it myself now)and the person checking us in wouldn't even let me register because I didn't have the papers with me.
We were actually told to always have a copy of the guardianship papers on us. We were told that by the attorney that handled our guardianship and the judge also mentioned it. The copy has to be one of those official certified copies, not just a copy made on a copy machine.

[Troy3357]

Hi All,

Sorry I have not been on as of late, Billy has had a rough time of it over the last week. He's been in the hospital. I got a call from a nurse at his home at 3:30 in the morning that he woke up crying and appeared to be in pain. I ran down to the facility and he was just being loaded on an ambulance. That is the hardest part for me, watching him hurt with no way to make it all better. He finally came home today.

That little boy is my hero. He has been through so much and can still smile. He's not a brat or mean or anything. Even when they poke him for an IV or blood he cries for a bit and I cuddle him and then he's ok and back to prattling to his pooh bear. Sometimes I just sit and watch him sleep all cuddled up with his pooh bear and his "blanky", nursing on his "binky" occasionally and I wonder if I have a right to continue to put him through any more treatments. God knows I don't want him to hurt anymore. I pray that he has no more problems until after the trip. I just want to take him to see Pooh Bear. To see his face when we get in the magic kingdom. I should have done this long ago. I was worried about caring for him. What is a diaper change when compared to spending time in a place I am almost certain he will love.

Please forgive me for rambling on. It's just been a long week.

Troy

[MommytoMJM]

Important note about the Winnie the Pooh ride.: the wheelchair car has the option of having the movements turned off or on. MJ likes them on, but they may startle someone who has never been on it before. Make sure to ask the ride attendant about turning them off or on (It is the red button in the left front corner of the car. You also can't change your mind mid ride)

[MommytoMJM]

PS there is a Pooh Bear shop in MGM too.....

[SueM in MN]

Sorryto hear about your brother's set back. Hope things turn out OK.

[D,L and K's Mom]

I am so sorry to hear about your brother Troy. I hope he is feeling better soon. I know how you feel about feeling helpless when the one you love is hurting. I hate when David looks at us with pain and fear and we can't tell him we are TRYING to make it better. I fell horrible when they are taking blood or doing tests. I just can't get over the guilt of him not knowing we are putting him through the pain to make him well...I know in my head we are doing it for all the right reasons but in my heart...well you know, my heart is breaking. We just returned from the ER an hour ago. David had another grand mal on the school bus on his way to school. I was called and followed the ambulance to the ER. This one was much worse. They seem to be getting longer and more frequent. I hate these...they are too long and now too frequent. I hate the drugs who are slowly stealing my happy -go-lucky "dude" and leaving a doped up sad shell of the little laughing , giggling, guy we know and love. I am so angry that we can't stop these. I am so sad that we can't stop these. I am so frustrated that we can't stop these and I am so scared that we can't stop these.
You make sure you get your brother well and you take him on his trip. Make sure he sees all the wonderful things he can see in WDW. Take lots and lots of photos and hug and kiss him over and over. Spoil him ROTTEN!! Give him, buy him, show him everything to make him smile, giggle and laugh. We may not be able to tell them why they are hurting but darn it we can show them how much we LOVE THEM!!!! I know that they do understand that ...that we love them for now ,for always, forever.
Hugs to you and your brother!! :grouphug: I know things will get better and you will get to relax and enjoy your trip.
Do you have a photo of your brother you could post? I would love to see him. I am to computer dumb to post a photo but I love seeing other peoples.

[D,L and K's Mom]

Hurray a seizure free day. Troy, how is your brother today? Is he any better. I am praying for him and for you.....

[Troy3357]

Hurray a seizure free day. Troy, how is your brother today? Is he any better. I am praying for him and for you.....

Thank you for your concern.

Billy has been doing better over the last couple of days. He is taking his bottle again and that is always a good sign. The IV should come out tomorrow if nothing changes. With any luck he will be himself again in a couple of days.

How is David doing? I am sorry to hear about his seizure activity increasing. I know that seizure meds can have a profound effect on a person's personality as I had a best friend in high school that was on Phenobarbitol. He had not taken meds in 8 years and started with siezures again so had to go on it again. This changed his personality alot. Unfortunately, it is the lesser of all evils I guess. I wish you and David my prayers and the best.

I have been trying to catch up on work and spending time with Billy. Need to get everything in order so that I can take the time to take him to Disney. If I have to I will take him with a heplock and contract an RN there! We will make this trip.

Thank you for your prayers,

Troy

[D,L and K's Mom]

Yeah!! go, go go. YEAH!!! Enjoy the trip. Keep us posted on Billy and post a photo of possible!!!

[twocat]

Troy,

Your posts and the replies from the great people on these boards has once again brought tears to my eyes.
If you're going to be there the first of THIS December, I hope to run into you and your brother and give you a big hug for this wonderful thing you are doing for Billy. I'll be there Dec. 4-11.

Donna

[lil.disney.princess]

i hope Billy is feeling better :love:

[Troy3357]

YES!!! The IV is out today! Billy's appetite is improving (he ate eggs today!) and he is alot more like himself, just a bit more clingy than normal but that is probably the steroids. He will be on steroids in Disney I think. But hey we will deal with that... Just lots of hugs that's all.

I don't understand how I missed it but I never put the dates up on here. We will be in Disney from December 12th to the 17th. I wanted the first week in December but there was no availability. I also wanted to avoid the weekend if possible. We may extend to the 19th if there is availability at that time and Billy is up to it and enjoying himself. After all I am not sure we will be able to go on another trip when this is done so want to make the best of this one.

I really want to thank all of you for your help and support with this!

Thank you so much.

Troy

[SueM in MN]

I don't understand how I missed it but I never put the dates up on here. We will be in Disney from December 12th to the 17th. I wanted the first week in December but there was no availability. I also wanted to avoid the weekend if possible. We may extend to the 19th if there is availability at that time and Billy is up to it and enjoying himself. After all I am not sure we will be able to go on another trip when this is done so want to make the best of this one.

I really want to thank all of you for your help and support with this!

Thank you so much.

Troy
You should miss the crowds, so that should be a good time.

[Talking Hands]

Troy which night are you going to MVMCP? There are several of us going the night of Dec 15.
16th we will probably go to Candlelight Processional but not do the dinner package

[michellex2]

Troy,
My mother and I will be there December 7th to December 14th. She will be the tiny silver haired lady in the bright blue wheelchair. :paw: Best of luck for Billy's continued recovery and your trip.

[D,L and K's Mom]

YEAH! So happy to hear the good news about the IV. Sounds like Billy is back on the road to feeling better. I can't remember what Meds David was on on our last trip but make sure you lather on the sunscreen (EVEN IN DEC.) I know some of the meds made him burn really easily! YEAH!

[MommytoMJM]

Troy which night are you going to MVMCP? There are several of us going the night of Dec 15.
16th we will probably go to Candlelight Processional but not do the dinner package

Yeah! We'd love you meet you guys! I have a little girl with several disabilities that TalkingHands is "Nana" to!!! My bday is the 14th, so we are celebrating that weekend (15-18) and one of the gals from this board (DCLFun) Kathy is singing in the CP that night (I think) we are going to aim for the 6:45 shoe I think :) I love that you are doing this for Billy, Disney has been pure magic for my little girl and family.

[MommytoMJM]

Troy,
My mother and I will be there December 7th to December 14th. She will be the tiny silver haired lady in the bright blue wheelchair. :paw: Best of luck for Billy's continued recovery and your trip.

We'll be in the parks the 8th and 9th, if you see us, say hi! We are a family of three, dad is big and has a beard (dark hair) I am in a silver scooter and MJ is ion her hot pink wheelchair!

[Troy3357]

Yeah! We'd love you meet you guys! I have a little girl with several disabilities that TalkingHands is "Nana" to!!! My bday is the 14th, so we are celebrating that weekend (15-18) and one of the gals from this board (DCLFun) Kathy is singing in the CP that night (I think) we are going to aim for the 6:45 shoe I think :) I love that you are doing this for Billy, Disney has been pure magic for my little girl and family.

I'm sorry I took so long to respond, I just have been trying to get everything arranged and get as much work out of the way as possible.

I would enjoy meeting some of the folks that have been so helpful! I am a bit reluctant only for the fact that Billy is shy around strangers though. I am not sure how he would do in a group. It's worth a shot though, worst thing that would happen is that we would meet and then split. It would be great to be able to talk with some folks that have children with special needs as you would know what is happening.

One of the biggest barriers to going out is the nasty comments. You have to bear with me as I was around with Billy most of his life, but up until the last 3 years I had not been out with him. My mom took him everywhere he needed to go. I am not ashamed of him, I would just tell folks where to go (and not very nicely)...:mad: but when folks get nasty because they think a 30 something year old has no business with a bottle or pacifier no matter what their disability, it scares him and makes him upset. If I get angry then he gets even more upset.

I thought about putting a surgical mask on him but changed my mind. At first because it would cause him to rebreathe a certain amount of his CO2. This would cause the pressure in his head to go up and that would cause problems with the tumor I think. But the more I thought about it, the more I was concerned about the fact he wouldn't like it and this entire trip is about making him happy. I just wish everyone would understand. I thought about making a bunch of shirts that say "I know I look like an adult but I am really just a toddler inside so please treat me as one".

Anyway, please forgive my rambling. I just get really angry and frustrated at the lack of understanding of some people at times and this became an issue this last weekend when I took him to the park on Saturday. A rather rude woman just went off on me because I allowed Billy to have his pacifier.

We as adults could learn so much from kids. A little girl of 5 or 6 came over on Saturday and asked Billy why he was drinking a bottle. I explained that while his body grew up his insides stayed a baby. She just said "oh" and preceeded to play with him. Her mom was really nice and we sat and chatted while they played.

Well I have ranted long enough.

Troy

[Joanna71985]

That last part was so sweet about the little girl. I love the innocence of little children.

[MommytoMJM]

Troy, I just had a friend over who has 4 typical children, MJ was, well, MJ and we had to keep explaining to the kids that even tho she looked big like them on the inside she is still little and doesn't understand.

She (and I) would love to meet you and Billy. She is inherently understnading of other people with diabilities and I have been around disabled people all my life, nothing will shock or horrify us, I promise.

Nana is awesome too, she teaches disabled kids and has been nothing but AMAZING to MJ and I and is now an integral part of our lives.

We have pften set up meets and then had to leave because MJ wasn't coping well, we also have to follow the "MJ touring plan" if we are with people for extended periods of time. I often find myself apologizing for this (a habit Nana is trying to break me of) If you want to give it a try, let us know and we'll figure it out!

HUGS, I know how very hard it can be.

[Talking Hands]

Troy, I have absolutely no problems with Billy using a pacifier or a bottle. He needs it for whatever reason, physical or emotional. It doesn't matter. You'll not be getting nasty comments from or my family. People who make nasty remarks are uninformed and have never had to be around someone with disabilities. Ignore the comments and enjoy your time with your brother. The both of you are welcome to join us anytime.
Hugs to you.

[phillybeth]

Honestly, if I were touring the part and saw an adult in a w/c with a bottle or pacifer, I would think it was sweet, not disturbing. But maybe that's because like so many on this board I've been around differently abled people most of my life.
I've been lurking on this thread for a bit and am I so glad you are doing this for your brother. I've been to Disney with my uncle who has Down Syndrome and it is like going with a child- you see the World through their eyes and it is never the same again.

[Troy3357]

Troy, I have absolutely no problems with Billy using a pacifier or a bottle. He needs it for whatever reason, physical or emotional. It doesn't matter. You'll not be getting nasty comments from or my family. People who make nasty remarks are uninformed and have never had to be around someone with disabilities. Ignore the comments and enjoy your time with your brother. The both of you are welcome to join us anytime.
Hugs to you.

Please forgive me if I led you to believe that I was concerned that you or any of the nice folks here would make nasty comments :earseek: . That was not it at all. My concern was that you may hear an ignorant person being just that...ignorant. I would enjoy at least getting together to meet and if Billy is cooperative then spending some time together.

Again, please forgive me if I didn't express myself well enough.

Troy

[luvmyeor]

Troy,
I wish that I was able to read these boards more often. I would have been able to help you with your brother if you would have been going the same days I am going. I own a business where we take special needs adults on trips all over the US and neighboring countries. I happen to be going with a group of 23 to WDW 12/9-12/14 so maybe we will run into each other. We are staying in the handicapped accessible cabins at Fort Wildereness. I will be wearing my Eeyore ears and most of my travelers will be wearing pin trading lanyards.

Don't worry about the rude people. We always have people stare at us...we just stare back!!! The worst problem we have is the rude people who think they can jump over the feet of our travelers in wheelchairs. I can't believe the nerve of some people.

I know you said your brother can only stand for a few seconds so I don't know if he is able to have his diaper changed without lying down...but if he is able to then make sure the aide takes advantage of the companion bathrooms. They are much bigger than a handicapped stall and there is plenty of room to help someone who uses a wheelchair.

If you decide to park hop... most busses are wheelchair accessible. They will load your brother and the rest of your party first. You just have to stand in front of the queue and near where the back of the bus will stop. Most drivers are very helpful...the only thing is you must ride on the lift with him or already be on the bus as the driver will not move him off the lift.

Make sure you let the hotel know that you need a refrigerator for medical purposes and they usually will not charge you for it.

I hope you and your brother have a great time!!!!

Mary

[Talking Hands]

Please forgive me if I led you to believe that I was concerned that you or any of the nice folks here would make nasty comments :earseek: . That was not it at all. My concern was that you may hear an ignorant person being just that...ignorant. I would enjoy at least getting together to meet and if Billy is cooperative then spending some time together.

Again, please forgive me if I didn't express myself well enough.

Troy
Don't worry I don't really hear that well but my husband has heard them and related them to me. We ignore them. Like the bozo who started screaming at me because I would not load the bus in an unsafe manner for my power chair and insisted that a manager be called. I was called all manner of foul names. I now have a letter from Disney stating that the driver is to follow my instructions on loading me. Thought the air would turn blue that day.

[D,L and K's Mom]

My advice is ignore the rude people. If they stare, stare back. If they make a comment about the pacifier or the bottle, look at them and pop one into your own mouth and stare, stare, stare. People stare at DS all the time. My oldest DD says things like " Get a good look, we get to look and see how cute his is all the time". I have told this story here before. Once we were at the dentist for David. David was rokcing and making his "happy sounds" there was a little boy sitting near us and he was looking (little ones look and I smile.....they are just curious) Well, he said something like "What's wrong with him " to his Mom. She "Shushed" him. He kept asking. I finally gave the smile and the David was born with a "boo Boo" in his head " speech. He just looked at me and said "no, not that what's wrong with him, doesnt he know he is at the DENTIST!" He was shocked that anyone would be happy!! :) Sooo cute.


Remember with the bad there is good. There are good people out there. Please don't forget about them. They are there but they are usually the "quiet" people who smile and nod. They are the people who just take a step back as you pass so you can fit more comfortable. They are the people who stop to pick up the "chewie" that DS has dropped. They are the ones who nod and wink as you push the chair through. They tear and smile right along with you as your DS (or brother) smiles at Mickey. They open doors, they step back to make room on the parade route, they talk to DS not about DE.They are there.....they are just quiet. Last year someone bought DS a Mickey balloon because they saw him laughing as they all blew in the breeze (I didnt tell them he has one back at the hotel :) ) I just smiled (and cried ) as they handed it to him and said, "H"ere you go little man...enjoy. They are there. The wonderful , compassionate, caring people. You just have to take a step back and look for them.

Have a great time!!!

Luvmyeor...you sound like a great person. God bless you for taking those wonderful trips!! I wish you were in NY!!!

[lovetoscrap]

One of the biggest barriers to going out is the nasty comments. You have to bear with me as I was around with Billy most of his life, but up until the last 3 years I had not been out with him. My mom took him everywhere he needed to go. I am not ashamed of him, I would just tell folks where to go (and not very nicely)...:mad: but when folks get nasty because they think a 30 something year old has no business with a bottle or pacifier no matter what their disability, it scares him and makes him upset. If I get angry then he gets even more upset.

Troy


Hi :wave2:

I found this thread yesterday and was completely touched by everything and everyone on this thread. I have not been able to stop thinking about all that I have read here since yesterday.

Troy--you are an INCREDIBLE brother. You are a true testament and honor to your beloved mother.

I am the half-sister to a mentally challenged adult "boy". While he doesn't have nearly the problems that you and many others here have to experience, he is totally dependant on my parents for his care, and one day that responsibility will pass to me. While I worry about that day, mostly for his sake, it is a responsibility that I have been prepared for since I was a child, and I take it on quite willingly.

I am also a former teacher, special ed aide, and the mother to 2 wonderful homeschooled girls. As a homeschooling parent I am also often on the receiving end of much unsolicited "advice" about how I am chosing to raise my children. I am in NO WAY trying to compare the seriousness of what I experience to what you have to put up with, but I want to share some specific stratagies that I hope can help you.

I spent a lot of my childhood defending my brother to others. I was asked the rude questions, saw the funny looks, and defended him against teasing. I know how frustrating it is and how angry it can make you. BUT, you know that your temperment affects your brother, and he is your number 1 priority. For his sake you need to find some less confrontational ways to difuse the situations.

You have ABSOLUTELY not need to discuss, defend or justify your brother's upbringing, personal habits, or situation to ANYONE--and certainly not a totaly stranger!

The first thing you need to do is take a deep breath. Then you need to find your biggest, most cheerful smile. :teeth: (in Disney that isn't hard!) If someone speaks to you directly in a negative way, you need a response that clearly sets a boundary and lets them know you will not be discussing this. I suggest something like:

:teeth: "I appreciate (understand) your concern, but I prefer not to discuss my personal family business with strangers."

:teeth: "I understand your concern, but Billy has excellent medical care and I only discuss him with his doctors."

:teeth: "I appreciate your concern, but I have made my choice on how to raise Billy based on his unique needs and there is no need for debate."

You HAVE to say this with a huge, caring smile and light tone. That way Billy won't get agitated. You also let the other person know you are not going to be rude and sucked into a debate or defense of him.

After you say this you have 3 choices.
1. physically remove yourself from the situation by walking away.

2. Make it obvious you will ignore them by turning your back and talking to Billy or the aide (but not about the comments just made!), or someone else around.

3. If you are "stuck" with this person in line or at a parade and think you need to continue a conversation IMMEDIATELY change the subject after making the comment above.

:teeth: " I would love to hear about your day here. What rides have you been on so far?"

or, since they obviously LOVE to share their opinions:
:teeth: " I would like to know where you recommend you we might go for lunch?"

(remember to keep that big smile and cheerful tone at all times!)

Often that will change the conversation (people love to talk about themselves and now you are asking for their opinion!).

If they continue to make comments (but not directly to you) after you have turned away then you will just have to ignore it. From how you have described your Brother he probably won't notice/understand them, and he will take your cue from your behavior. And if you keep him distracted he will hopefully be fine.

IF they continue to be rude TO YOU and offer advice/comments then you may need to go another level--but you need to continue to have that big smile!

:teeth: "WOW! I didn't realize that you have raised a child with (insert some big words to describe Billy's condition) also!"

Most likely you will get "Well, no but. ." at which point you cut them off (still cheerful and smiling) with :teeth: "Oh, then you have no experience with the joys and hardships of raising a severely handicapped child and really are not in a position to offer advice. Again, I understand your concerns, but do not discuss personal issues with strangers."

IF they try to answer "yes" (and no parent who has EVER been in that postion ever would, because they know better than to offer advice like that!) it will probably be something like "well, my sister's child has XXX condition" or "my child was ADD and I never. . ." at which point you go right back to the above. OR you can get really excited and begin to engage them in a long in depth, technical discussion (since they just told you have been in the EXACT same situation) of some of the issues (but not the pacifier and bottle). :chat: I suggest you start with medical tests or diapers! :teeth: "What brand did you use? We prefer XX because of less leakage etc..." Basically, the "gross out" factor! You have still changed the subject from what they wanted to lecture you about, and I guarantee they will lose interest and move on pretty quick!

I really can't stress enough that you have to remain upbeat and cheerful. Billy will take his cue from you. Also, that signals to the "offender" that you are not going to be sucked into a debate.

As for those that stare. I have to admit to sometimes being one that stares, especially at Disneyworld. Why? Because I love to see the joy on people's faces. From how you have described Billy I am guessing that I would probably really enjoy seeing the joy and awe on his face. Please don't assume that all those who stare are doing it to be rude, or are thinking terrible things. Unfortunatly, as a parent or sibling of a special person, you have to develop thick skin along with all the other adaptations you must make in your life.

You CAN NOT change others, you don't have the time, energy or need to educate every single person about your situation. I must respectfully disagree with the idea that the answer is to stare or make a rude comment back. As advocates for our special loved ones I think we "kill more flies with honey than vinegar". I think being rude back just "confirms" to those offenders that special children are weird and different and their families are nasty and bitter and therefore are in need of their advice and opinions.

I will be praying for you and Billy. I hope you have an incredible time! I would LOVE to see photos when you get back. Especially when he meets Pooh Bear in person for the first time! Please keep us updated.

:grouphug: :wizard: :flower:

[lil.disney.princess]

Last year someone bought DS a Mickey balloon because they saw him laughing as they all blew in the breeze (I didnt tell them he has one back at the hotel ) I just smiled (and cried ) as they handed it to him and said, "H"ere you go little man...enjoy.-awww D,L and K's Mom that is so sweet it brought tears to my eyes!!

Troy ignore them-they are just idiots who havent got a clue!!i hope you both have a fantastic time and i would love to see a photo of BIlly with pooh bear!! :D


and get him a t-shirt that says "go on stare-im so cute you cant help it!"

[lil.disney.princess]

Hi troy havent seen you post for a few days hope all is ok and only 12 more days to go!!!!! :Pinkbounc :Pinkbounc

[Troy3357]

Hi Folks,

This has had to have been one of the most frustrating weeks I have had in a long time. It seems that my work is going to REQUIRE me to attend meetings in orlando with our biggest customer while Billy and I are there. This has had a big impact on this trip obviously.

What this means is, I have changed the hotel from the Contemporary at 280 bucks a night to the pop century at 77 bucks a night X 2 rooms with a connecting door so I can get work done late when Billy is sleeping. The hotel change was necessary because I will need to get 2 Aides instead of one beecause I cannot leave Billy with one person all day, it's just too much. Add the Nurse to run the meds once a day and the cost of just the staff is just over $2000 for the 6 days. I figured it was better to change hotels and have more hands.

I will have breakfast with him most days and will spend the entire first day we are in orlando with him. I hate my job sometimes! But without it none of this would have been possible. I just want to be sure he has a good time. I will be with him and one of the Aides at the christmas party on the 15th. I will walk out of a meeting if necessary to be there for that.

I have packed everything I can think of that I have on hand into the boxes to ship down. Every day I think of something else that I need to go get so Walmart and target and Toys are Us are really getting to know me :)

It seems they cannot locate his foot pedals for his wheelchair so we are renting one for the trip. The one good thing about this is it will recline and his won't. Also the one he has has the bigger wheels in the back and the one we are renting is a companion chair that has small wheels so he cannot get his hand stuck or push him self and I feel better about that in a strange place. I am not worried about him pushing himself away from me because his coordination is not good enough to do that. I worry about him moving the chair at the most inopportune time (like on a ride).

The Steroids have helped with his overall situation. He is more tired now than he was before he went into the hospital, and a bit more clingy. We will probably be making regular use of the aid station at this point because the hotel would be a hike now.

I feel like I am letting him down. My boss left no room for discussion on this. These meetings could last 6 hours each day. I may extend to the 19th just to get the time with him in the parks.

Sorry I have not been posting in a while, it's just been a handful trying to get everything ready and keep up with work and argue with my boss.

Thanks for listening to me go on about this.

Troy

[SueM in MN]

Well, hope you have fun anyway.
Good luck on your trip.

[lil.disney.princess]

:guilty: @your boss for doing this to you-but im sure that billy will still have a fab time m8 xxxxxxxxxx love to you both xxxxxx

[D,L and K's Mom]

I was just checking in to see if there were any new posts. I hope the lack of posts is because things are going according to schedule and you are packing and getting things all ready for your trip!! How is everything? How is Billy? Post to let us know........

[SaratogaShan]

I think they are at WDW now. If I remember correctly they left on the 4th. I too have been thinking about Troy and Billy. I said a little prayer that all is going well despite the last minute work obligations. Pixie dust for a magical trip! :wizard:


ETA: The trip dates are the 4th - 11th!

[SueM in MN]

ETA: The trip dates are the 4th - 11th!
Yes. That was the time period I thought too.

[Troy3357]

Hi folks,

Our trip will be from the 12th to the 19th.

Billy is doing better. He is much more like himself but I am pretty certain this will be his only trip to Disney. He is alot more tired than before the last trip to the hospital.

I have decided that we will get hospice involved and stop poking and prodding this little boy. This was the hardest decision I have ever had to make. I believe it is the right one though. The doctors think that his condition will only deteriorate. There are no more treatments that can be done that would do any lasting good and the little time they would give would be in the hospital. I refuse to put him through anymore.

We will go to Disney and I will see to it that he will have a good time. We may spend half the time in the Aid station but he will meet pooh bear and have breakfast every day at the crystal palace with pooh bear. I have made the reservations for this. We will be at the christmas party on the 16th. If he enjoys this I may get tickets for the 18th as well. I just want to see his smile when he sees pooh bear. The boxes of supplies will go out tomorrow.

Thank you all for your kind help and advice.

Troy

[SueM in MN]

Sometimes what is best is not the thing that is easy.

Good luck on your trip.

[Twende]

Troy, I will be in the world some of the same time as you.

My family is joining me on the 15 th and we are staying until the 20th. We will be in the Magic Kingdom the same night as you!

If I see you I will be sure to stop and say hello! :cool1:

[Troy3357]

Hi Folks,

I have packed everything I can pack, have shipped 3 boxes, have lists out the ying yang and hope I have not forgotten anything.

Of the three boxes 2 will not be coming back (one is a case of diapers and the other is his ensure and tang that can be mixed in bottled water on the fly). Can anyone tell me how I ship the one box back? Also has anyone ever been able to check in before 3pm? I was planning on getting to Disney at around 10 or 11am.

Thank you,

Troy

[Cheshire Figment]

A lot depends on if the room they have you blocked into was used the previous night, or if not, the people checked out early and housekeeping is done. Or, if you can take any available room.

As far as shipping, the hotels with convention centers all have business centers which will handle the shipping. Otherwise it may be possible to leave it at the desk and get a price quote from UPS and leave a check payable to UPS. Of course if you have your own UPS or FedEx account it can be shipped and billed to you as the recipient.

[dclfun]

Troy- we'll be there too during that time. If you see a lady with a labrador service dog wearing gold Mickey ears who is in a big red wheelchair with a ventilator and feeding pump on the back, it's me...so please say hello if you get a chance since I'd like to meet you and your brother. As Mommy to MJM mentioned I'll be singing in the Candlelight processional on both the 15th and 16th ( barring inclement weather) at the late shows. I'll be working at a Diversity Summit over at the Contemporary as a volunteer on the 16th all day but otherwise we'll be in the parks enjoying the Christmas atmosphere. Have a magical trip and take lots of photos when Troy meets Pooh bear! ---Kathy

[lil.disney.princess]

Not long to go now!!!

hope you have a safe journey and a fabulous trip!!! take care :earsboy:

[D,L and K's Mom]

have a great time. We also ship diapers etc down. When we ship it back we bring it down to the front desk and they ahve always shipped it for us. Last time we were at POR we waited so long in line they shipped it for us FREE!!! When you get to your hotel as about a room. On many occasions we have been able to go to a room and change DS and get him situated until our room was ready. They will probably put you in a small room not handicapped access until yours is ready. They also have let us have access to a room after we check out so we can do afinal diaper change or bathingsuit change after checking out. Have a wonderful time!!! Please let us know how things go!! Take many many photos. Let the Disney photographers take some photos. They are a bit expensive but they are worth it!!! The photopass people are wonderful!!! Have a great time!!!!

[D,L and K's Mom]

Troy just wondering if you and Billy are back from your trip? How was is? Please post........

[Troy3357]

Hi All

It's late so I have just a minute to post a quick note. I will post alot more tomorrow, I promise.

The trip was an incredible success! Billy had such a wonderful time! I had to keep tissues with me as seeing him smile and clap his hands brought tears to my eyes more than once.

His favorite thing was breakfast at the crystal palace. I had made reservations for every morning we were there. When we got to the area that you check in with your reservation, Pooh bear was on that side of the restaraunt and he saw Pooh trhough the window and got soooo excited I didn't think we would be able to get any food in him! The CM's there were so wonderful! One of them gave Billy her hat which is a christmas hat with pooh bear ears on it. The manager on duty said they don't even make that hat any more. He said that she had been wearing that hat ever since she started working there 15 years ago. From that point on every time Billy saw pooh bear he would reach up and bat the left ear on the hat and say "ear!" and smile! It was truly a wonderful thing she did. Her name is Susan.

Well I could go on for quite a while, but must get some sleep. I will post a full account tomorrow.

Thank all of you for helping make this a truly wonderful experience for that little boy. And a big thank you to MommytoMJM and Talkinghands for taking the time to come over and say hi to us and for saving a wonderful spot for us for the parade! Billy loved the parade (especially when pooh bear showed up!).

Troy

[SueM in MN]

:flower: :sunny: :flower: :sunny:
Glad to hear your trip was a success.

[lecach]

I just came over to the disABILITIES board to see if you had posted yet. I am glad the trip was a great success. I look forward to reading your report.

[Sue & Co.]

Glad to hear it went well - look forward to hearing more details in due course.

Sue

[hallie615]

Glad to hear your trip went well, Can't wait to hear more about it. :flower:

[Talking Hands]

It was so nice to meet TRoy3357 and his brother Billy. Billy's eyes just sparkled and you could tell he was enjoying himself. Glad you had such a great trip.

[Troy3357]

Hi All,

I am sorry for not having posted qas of yet with the details on the trip but am trying to get everything ready for christmas. I will do so after the holiday.

Thanks,

Troy

[SueM in MN]

Hi All,

I am sorry for not having posted qas of yet with the details on the trip but am trying to get everything ready for christmas. I will do so after the holiday.

Thanks,

Troy
Oh, we are anxious to hear, but totally understand.
It's hard enough to either get ready for the holidays or get back to reality after a vacation. Doing both at the same time is nearly impossible.

[lil.disney.princess]

so glad Billy and you had a fab time

merry christmas to you both xxxxxx :wave:

[D,L and K's Mom]

I was so happy to see a post from you. I am so looking forward to hearing the detials of the trip. I understand how busy you are with the holiday but I am excited to hear all about the trip!!! I am so glad it was a nice time!

[D,L and K's Mom]

all is well with you and your brother.

[BionicEar]

Troy, I stumbled upon this thread tonight and it just literally brought tears to my eyes. You are truly an angel to Billy and God has certainly blessed him and you.

I can't wait to hear more about your trip! I hope you'll have pictures. :cool1:

[SueOKW]

I just saw this too - and I am so happy for you. I remember the first time I took our son - I was such a nervous nellie.

WDW or DL - - they make it so nice for us, don't they? I am so glad you went through with it. Just watching our disabled relatives being treated so well, so kindly - and to see them having such a good time is so heartwarming and rewarding.

God bless you thousands and thousands of times!!

[D,L and K's Mom]

I am home on a short break while DH sits with DS at the hospital. Any more news? I am waiting to hear all the details!!! Ok I will check bak later.

[lil.disney.princess]

:wave: Hello Troy hope all is well,still looking forward to reading your trip report and seeing the photos xx

[pampam]

Details. We need details. I really hope you made some wonderful memories. sometimes that's what keeps us going.

[D,L and K's Mom]

I was just curious if anyone had heard from TROY about his trip. I keep him and his brother in my prayers and I hope they had a trip of a lifetime!!!

[SueM in MN]

No. I haven't heard anything.

[riu girl]

Troy seemed to put a tremendous effort into planning for the holiday, I just hope that everything went well.

[eeyore45]

Adding my thoughts and prayers...

[eeyore45]

anything?

[D,L and K's Mom]

Troy, I hope all is well. My thoughts and prayers are with you.

[terri01p]

I have followed this thread from the beginning, my heart going out to these folks, I so know first hand the joy and pain life can bring, I hope Troy and Billy are doing fine, it made my day when I read the trip was a great one, I hope Troy can grab a free minute to update us, I feel as if I were a family member watching for updates. GOD speed !

[lil.disney.princess]

i keep looking in to see if there are any more posts from troy,i hope all is well with troy and billy,i think of them often xxxxxxxxx

[D,L and K's Mom]

and I still think about and wonder about the trip......

[Joanna71985]

Me too.

[SereneOne]

Hi folks,

Our trip will be from the 12th to the 19th.

Billy is doing better. He is much more like himself but I am pretty certain this will be his only trip to Disney. He is alot more tired than before the last trip to the hospital.

I have decided that we will get hospice involved and stop poking and prodding this little boy. This was the hardest decision I have ever had to make. I believe it is the right one though. The doctors think that his condition will only deteriorate. There are no more treatments that can be done that would do any lasting good and the little time they would give would be in the hospital. I refuse to put him through anymore.

We will go to Disney and I will see to it that he will have a good time. We may spend half the time in the Aid station but he will meet pooh bear and have breakfast every day at the crystal palace with pooh bear. I have made the reservations for this. We will be at the christmas party on the 16th. If he enjoys this I may get tickets for the 18th as well. I just want to see his smile when he sees pooh bear. The boxes of supplies will go out tomorrow.

Thank you all for your kind help and advice.

Troy


We will be there from the 7th to the 18th, I hope to see you and Billy there! My daughter is special needs, she has multiple physical defects and is having heart surgery May 12th. I get stares when I tubefeed her and comments made that she has a pacifier (it is comforting to her because she has had a lot of procedures done, to have one) and is still in diapers, albiet she is four, but people still feel the need to say something. I give them a good dressing down so to speak, what some people zone in on to make themselves feel superior just gets ridiculous. Hospice is WONDERFUL! My daughter is a twin, but her sister died shortly after birth, and Hospice was involved with counseling--anticipatory grief. I pray that both of you have the time of your lives and for you to have extra strength and peace during the times ahead. God bless you, He has already blessed Billy.:hug:

[SereneOne]

Oops...I only read the first several pages and did not check the date. I hope it went wonderfully.:lmao:

[SueM in MN]

Oops...I only read the first several pages and did not check the date. I hope it went wonderfully.:lmao:
That happens sometimes.
Actually, I am going to lock this one so it doesn't get found again and thought to be new.
I guess after 2 years, the chance of knowing anything more is not too likely.