DisneyWorld with a Profoundly Developmentally Disabled Adult?

[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. 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

 

[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!! 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!!!