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

 

[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 . 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.
And here's one for Epcot.
And one for the Studio.
And one for Animal Kingdom.
Someone suggested a portable DVD player. Here are 2 DVDs that he might like:
Flik's Musical Adventure, which is a sing along DVD showing Animal Kingdom and another sing along called Disneyland Fun . 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. 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

 

[BCV23]

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

 

[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