Facing a few challenges on upcoming family trip, advice needed. a bit lengthy :)

[LovesTimone]

And just a comment that the Treehouses are not WC accessible unless you reserve the special WC accessible ones. There are 4 of them total, two set of two.

I'm pretty sure that they reserved one of them. But I will pass this along just in case. Thanks for the info.

 

[ariel71]

It seems like DS1/DDIL1 are very dedicated, but one thing I haven't seen mentioned when coming up with these scenarios is making sure the rest of the family is on board with any plans. Are your friend, her DH, and the other couple equipped to manage DGS during a meltdown/shutdown? If not and it always has to be the parents, can the rest of the group to do their own thing while his parents are calming him down? Will DGS accept being watched by the other adults when his parents are having their one-on-one time with the other children? Will that one-on-one time cause problems because he's not included? Do DS2 and DDIL2 expect to have some time together doing things on their own? Will it cause resentment if the trip seems to revolve around DGS's needs?

Even though it sounds like the extended family is close, I think the adults need to be very open and honest with each other about plans and expectations. I'm very close with my siblings, but I don't live near them. If I didn't really experience these issues on a daily basis, it might throw me for a loop when everyone's in such close quarters, no matter how much I knew about the situation.

 

[LovesTimone]

9

It seems like DS1/DDIL1 are very dedicated, but one thing I haven't seen mentioned when coming up with these scenarios is making sure the rest of the family is on board with any plans. Are your friend, her DH, and the other couple equipped to manage DGS during a meltdown/shutdown? If not and it always has to be the parents, can the rest of the group to do their own thing while his parents are calming him down? Will DGS accept being watched by the other adults when his parents are having their one-on-one time with the other children? Will that one-on-one time cause problems because he's not included? Do DS2 and DDIL2 expect to have some time together doing things on their own? Will it cause resentment if the trip seems to revolve around DGS's needs?

Even though it sounds like the extended family is close, I think the adults need to be very open and honest with each other about plans and expectations. I'm very close with my siblings, but I don't live near them. If I didn't really experience these issues on a daily basis, it might throw me for a loop when everyone's in such close quarters, no matter how much I knew about the situation.

They are extremely close family and all of them have cared for all the kiddos and understand GDS9, and are comfortable taking care of them. DGS9 is used to being with them so being alone with them is not a problem.

DDIL2 is an Physician Assistant to the Specialist that takes care of DG9, actually DDIL1 became such good friends with her, she was at a cookout at DS1 and DDIL1 house and met DS2, it was honestly love at 1st sight. There might have been some match making going on....

They have been working with a family counselor/therapist, as the older 2 children have started having some behavior issues at school and at home. They are trying to reel everything back in. They have started putting words into action, such as every night try they have dinner at the table, not in front of the TV, no phones - each meal each child gets a chance to talk about their day, what's going on with them, completely uninterrupted. Also they have created a boards and calendar joint calendar so that nothing gets dropped or forgotten. DGS 9 does better with seeing what is happening, and knowing what is expected, such as what to wear, like the board in his room will say - Monday School day - Cold out, Uniform/ school clothes - long pants, long sleeves, jacket, sock and shoes, grab your back pack and soccer bag. I know that what to wear in the morning doesn't seem like it should be an issue, most people are like just give him the clothes or lay them out, it didn't work for him, for instance if gets up and did not like what was laid out or decided to ignore it, he might put on cowboy boots, with shorts and a long sleeve church shirt, when its 40 degree out and he goes to a special school and they have uniforms, he will not change clothes and has had a complete meltdown, so now when he gets up he read the board, and picks out what is on the board and also gives him something to be proud of he dressed himself and did a good job. This is making getting out of the house easier and less stressful with 3 kids. Also they have started including him in on the chores, dishwasher, bathroom, feeding & walking the dog. Which is helping with the 2 other kids. It really is a work in progress and changes are made as they arise.

Structure is the name of the game right now. They are actual bringing one of those large meeting paper board with rip off sheet of paper with a schedule, and a smaller one for his room so he know what he is to wear and keep up with the progress that they have made.

He will not feel left out with the one on ones with the parents and other 2 children, as they will present it as okay today your hanging out with your uncle and aunt and are going on the safari and to pet some animals. He will focus on what he is "getting to do" and not really what the other 2 are "getting to do". Then Uncle and Aunt will take him and head to AK, while the others wave and then they will divide up for their time. They won't present it like your sister is doing this and your brother is doing that and you have to stay with us.

 

[ErinTwinmom]

So last year I took twin mostly non verbal autistics who are extremely picky eaters on a dining plan and with some research it went really well. So my first suggestion as it sounds like food cross contamination is your biggest problem is get a heavy divided plate (I like Ikea's) and take it with you in a ziplock bag to sit down, put a nice note on the outside of the bag, explaining my sons autistic and how he feels about food touching and would the chefs please serve him on his special plate.
Second piece of advice, pb&j at Disney is uncrustables, you have been warned.
Biergarden Mac and cheese and hot dogs look different and would not enter their mouth. (All other Mac and hotdogs were fine)
We took a lot of lunches but if he will eat a sub lunchables makes a sub one now.
All I got right now

 

[DisneyOma]

So last year I took twin mostly non verbal autistics who are extremely picky eaters on a dining plan and with some research it went really well. So my first suggestion as it sounds like food cross contamination is your biggest problem is get a heavy divided plate (I like Ikea's) and take it with you in a ziplock bag to sit down, put a nice note on the outside of the bag, explaining my sons autistic and how he feels about food touching and would the chefs please serve him on his special plate.
Second piece of advice, pb&j at Disney is uncrustables, you have been warned.
Biergarden Mac and cheese and hot dogs look different and would not enter their mouth. (All other Mac and hotdogs were fine)
We took a lot of lunches but if he will eat a sub lunchables makes a sub one now.
All I got right now

I didn't think the Disney chefs would take anything from a guest into the kitchen - did they take your divided plate into every kitchen, or replate at a station?

 

[LovesTimone]

So last year I took twin mostly non verbal autistics who are extremely picky eaters on a dining plan and with some research it went really well. So my first suggestion as it sounds like food cross contamination is your biggest problem is get a heavy divided plate (I like Ikea's) and take it with you in a ziplock bag to sit down, put a nice note on the outside of the bag, explaining my sons autistic and how he feels about food touching and would the chefs please serve him on his special plate.
Second piece of advice, pb&j at Disney is uncrustables, you have been warned.
Biergarden Mac and cheese and hot dogs look different and would not enter their mouth. (All other Mac and hotdogs were fine)
We took a lot of lunches but if he will eat a sub lunchables makes a sub one now.
All I got right now

My friend is taking some divided paper plates to take with them for use at the treehouses and QS, and was wondering how to handle TS restaurants. I will give her your suggestion and also suggest that once seated she talk to the server or whoever to find out the best way to handle it. They are planning on bring in his fav's, and they will have a kitchen to keep everything fresh. He won't eat anything but orange kind of macaroni and cheese, so I don't know how this will work out. They have been working with him on a shinning star system for doing different things, chores, good behavior, and trying new foods, taking turns and other daily tasks. There are goals and rewards so to speak, they are small things like match box cars or DVDs.

As a practice for going to WDW, they all went over to Alabama to see the USS Alabama and went on the tour, and even out for a early dinner ( which was not planned they just decided to try it), and he did very well. They are practicing as much as possible to get him prepared for Disney.

 

[Betty Rohrer]

not sure if they can take plate to kitchen same rules about outside food. even if they can take it to kitchen no way to prevent food from touching or dropping on as this is not same as allergy

 

[MakiraMarlena]

They will probably have to bring food that they know he will eat. Restaurants won't be able to provide anything they don't actually stock. One big issue will be if they plan to do any character meals or AYCE restaurants, they'll be charged for him whether he eats or not. Food will need to be ready to eat - restaurants will not prepare or serve food from the kitchen that guests have brought in with them.

 

[ErinTwinmom]

My kids are younger don't care about most things touching but are throwers so I had plastic plates but I never asked them to plate, however every place we went was so helpful that if I thought I needed it I wouldn't have hesitated to ask. If they can't take your plate to the kitchen I would ask if each item could be served on side plates so mom can serve on his divided plate. Also not sure how a Disney kitchen is set up, but several nice servers saw me cleaning the plates with wipes after the meal, and offered to go wash them real quick, which I accepted and was very nice.