Gastroparesis & Autism related restrictive diets: Do better Disney!

[Notreallyaustralian]

I’m sitting here in tears. I posted in a disability form hoping to get some support from a community who can understand where I’m coming from. It is okay to disagree with my feelings about feeding issues and TS dining, but when I felt that someone was insinuating I was trying to unfairly take advantage, it hurts. When the poster said that it is like them Disney for 95% off a park ticket due to their mobility issues. I felt attacked, not supported. Feeling supported doesn’t mean I expect people to just agree. It means. I hear you. It must be hard, but it isn’t going to change because it isn’t plausible.

I personally think you were attacked and then gaslighted. I'm sorry this has happened to you here. Hugs.

 

[OurBigTrip]

I’m sitting here in tears. I posted in a disability form hoping to get some support from a community who can understand where I’m coming from. It is okay to disagree with my feelings about feeding issues and TS dining, but when I felt that someone was insinuating I was trying to unfairly take advantage, it hurts. When the poster said that it is like them Disney for 95% off a park ticket due to their mobility issues. I felt attacked, not supported. Feeling supported doesn’t mean I expect people to just agree. It means. I hear you. It must be hard, but it isn’t going to change because it isn’t plausible.

Only you can control how you feel…feeling attacked isn’t the same as being attacked.

Hopefully you’ll be able to utilize better dining options for your family on your next trip. Best wishes on that, sincerely.

 

[OurBigTrip]

I agree with you!! I think this accommodation should be provided to your family and any other autistic family that needs it. I also think families that are not autistic or not officially autistic should be given the accommodation. It would not only benefit disabled and neurodivergent people but also prevent food waste.

I could see it only being a challenge at all-you-can-eat-situations. Then I wouldn't blame Disney for being suspicious/skeptical. It would be easy for someone to pretend they want to eat small amounts and then pile up their plate. It would be hard to police this. At the same time, I would feel bad for autistic families having to miss out on character meals and those kind of dining experiences. Maybe a solution could be having autistic-dining times for character meals. Low lighting, less commotion, plated meals (for everyone) instead of all-you-can-eat. Maybe a couple of times a week?

The small to-go box at the buffet also sounds like a reasonable request. Maybe the size of the little cupcake containers? It might actually reduce vomiting in ALL people if this was allowed. My only concern (and maybe Disney's) is people taking perishable food around the park in warm weather, eating it three hours later and getting food poisoning. So...maybe limit it to non-perishable stuff only. I'm not sure how to regulate. Maybe there can be a special section of the buffet with crackers, cookies, dried fruit, etc. And each person is offered one container before they check out.

Simply not feasible someplace the size of Disney.

 

[Mackenzie Click-Mickelson]

I don't even go to buffets or AYCTE because most times the cost for value of what I personally would eat isn't there. We actually prefer the flexibility in QS the most.

But the truth is you're not asking for an accommodation based on your child's situation, you're asking for something that other patrons actively choose to do (pay even if they don't eat much or choose somewhere else). For Disney there is also bringing in food on your own. That is why you're going to get responses.

People are not trying to be unsympathetic but at this point in time many of us know someone with cognitive disorders. I have an aunt with autism (no eating issues), my husband's cousin's child has autism (eating issues) and speaks but not very much, my husband's dad's sister-in-law's son has autism and is completely non-verbal (large eating issues). My cousin's child has a cognitive disorder. And none of them would ask what you're asking nor expect it nor even want it. There's a lot of consideration they work with with their children a lot of feedback but they do not take on the stance this place doesn't support because of what you want them to do. That is a different mentality and although one some people share def. not all those who have children with disabilities or restrictions due to them share that opinion.

 

[Mackenzie Click-Mickelson]

Meals at WDW are not just able the food but the theming, entertainment and 'fun'.
The guest has to weigh the cost vs the experience/enjoyment for their family.
You know the price before you book.
My mother eats very little due to her age. We have to pay the same price as others but it worth it for her to be with family.

I've been kicking ourselves for not trying out BOG before all the changes and crazy pricing. Back then the ADRs were too hard to get and now the cost is just too high no matter how many times I saw walk up availability in May. I'd like the ambience more at BOG than CRT. As much as we'd want that ambiance we don't feel the cost is in line with our comfort zone.

 

[Betty Rohrer]

I never said they should serve a full adult sized meal at half price. My kid has mobility & sensory issues and I’m not demanding they lower the lights or push her chair around. Why are you so rude?

I read what he posted as another place where what you want with foods could also be wanted. so you are okay with paying full price to get into park knowing there are plenty she can not do? why not make rates for ones that can not do most things in Parks not just food

 

[Mia22]

I don't even go to buffets or AYCTE because most times the cost for value of what I personally would eat isn't there. We actually prefer the flexibility in QS the most.

But the truth is you're not asking for an accommodation based on your child's situation, you're asking for something that other patrons actively choose to do (pay even if they don't eat much or choose somewhere else). For Disney there is also bringing in food on your own. That is why you're going to get responses.

People are not trying to be unsympathetic but at this point in time many of us know someone with cognitive disorders. I have an aunt with autism (no eating issues), my husband's cousin's child has autism (eating issues) and speaks but not very much, my husband's dad's sister-in-law's son has autism and is completely non-verbal (large eating issues). My cousin's child has a cognitive disorder. And none of them would ask what you're asking nor expect it nor even want it. There's a lot of consideration they work with with their children a lot of feedback but they do not take on the stance this place doesn't support because of what you want them to do. That is a different mentality and although one some people share def. not all those who have children with disabilities or restrictions due to them share that opinion.

I think you’re confused about what I was advocating for and why. Gastroparesis is when the stomach doesn’t empty like ours so one could only eat a little at a time. So if she can’t eat but a few bites, I thought let the kid take a small container or let those with similar medical issues order a small portion, like a kid’s meal. The eating issues due to sensory processing are very much secondary to the severity of gastroparesis. I find it difficult to understand what would compel you to list the people in your life with “cognitive” disorders and say “And none of them would ask what you're asking nor expect it nor even want it.” What did you mean by that?

 

[lanejudy]

Feeling supported doesn’t mean I expect people to just agree. It means. I hear you. It must be hard, but it isn’t going to change because it isn’t plausible.

I hear you. It can be very challenging to dine out with disabilities that impact diet. It takes planning and preparation.

I’m not sure if you are at WDW and found your expectations were different than your actual experience now. Or if you are planning and came here to vent frustration as you plan. I will say that in our experience - and based on many others who post here - it IS possible for a teen/adult to order from the kids’ menu at many restaurants. If you tried somewhere that didn’t allow it, I suspect it was one of the few restaurants that don’t. Fixed price, buffets, AYCTE restaurants will be a challenge for you. You may need to decide if that restaurant is worth the full cost for your family’s experience — usually that is characters or a show, so think of it as a ticket to the entertainment with the food as a bonus. Or maybe those meals simply aren’t right for your needs. We typically only do 1-2 TS meals and mostly CS or resort food courts.

Take-out boxes aren’t really a viable option for WDW for multiple reasons. Neither is modified pricing. You can always ask a manager, but I would not advise planning your meals with expectation of any price accommodation. This gets discussed here every so often, ranging from people who are tube-fed to those with gastric bypass and those with eating disorders. The flat pricing should be expected for everyone at the table regardless of what is consumed.

As to other posts…I don’t see an attack. I see a comparison. Paying full price without “full” participation. WDW makes information available so guests can make informed decisions ahead, knowing what to expect.

 

[PAsFab5]

@Mia22 please don’t get upset, I hear what your saying and understand.

My teen daughter has physical limitations but not dietary. She does however eat a total of about 5 foods.

As much as I, personally, would love to enjoy a TS meal or a buffet while we are in Disney I know I am simply wasting my money because my daughter will eat only chicken fingers and fries…then it’s also a certain type of chicken fingers…I just can’t take the risk and justify the cost, so I had to adjust.

We eat quick service 100% of the time. That way, I know my daughter will eat and I won’t be frustrated by the cost/loss of money. You just have to manage and adjust your expectations unfortunately.

 

[Mackenzie Click-Mickelson]

I think you’re confused about what I was advocating for and why. Gastroparesis is when the stomach doesn’t empty like ours so one could only eat a little at a time. So if she can’t eat but a few bites, I thought let the kid take a small container or let those with similar medical issues order a small portion, like a kid’s meal. The eating issues due to sensory processing are very much secondary to the severity of gastroparesis. I find it difficult to understand what would compel you to list the people in your life with “cognitive” disorders and say “And none of them would ask what you're asking nor expect it nor even want it.” What did you mean by that?

Respectfully I do know what you're going for, I also read the comments of the thread before responding, I drew from my own life as well (and I also know someone with Celiac's Disease who only goes to very specific places or she cooks at home because of this).

And while I do not remember any of it and it's not truly related to your daughter I was born with pyloric stenosis where I projectile vomited everything I ate and I was flat out not getting any nutrition into my body due to the condition I had. Without catching it (eventually because it was thought to be cholic at first) it would have led to malnutrition and an electrolyte imbalance. These days I just carry a scar (which in the 80s was not as neat at you get these days) on my stomach. No I didn't have the exact experience you presently have and yes my issue was corrected with surgery. With modern medical interventions the mortality rate is rare but medical intervention is required.

I'm trying to find a way to say this without you taking offense truly. You may think your child has something so particular no one could understand. However the difficulties on a broad sense aren't unique in this world. Her condition may be something few if anyone you personally knows has but others around have their own issues. Issues that mean difficulties for them when it comes to dining out. That could be portion sizes, the types of food, the way in which the food is prepared and how it is prepared, etc.

Most people here on the DIS (throughout different threads) and my personal experience IRL they don't try to fit a round peg in a square hole. I totally get you asking a manager, I think most of us were responding to the more indignant flair to your posts because people want to help you on the Boards and sometimes that help comes in the form of answers you're not really wanting to hear. The answer here is really don't expect a yes, even better probably something to just avoid all together or do what others have done and pay the price. Not everyone divulges their personal stuff here either and some who post in various threads may have their own medical conditions (or they are just vague about it).

You can still have a great time at Disney even if you choose to avoid AYCTE or fixe-prixe places

 

[piccolopat]

I do NOT want a discount for simply eating less. We are lucky she’s not on a feeding tube. She is medically complex and eats TODDLER sized meals. She vomits 24/7 and is on home tutoring due to her illness. She is puking as I write this! If they won’t allow us to order a kids meal, I have every right to express my disappointment and should be able to without dealing with negativity.

Whether you realize it or not, asking to get a child's meal for an adult is the same as asking for a discount since they are priced significantly less than adult meals. Many people can't eat adult portions or even some child portions. Think of the number of people who have had weight loss surgery as one example. It may not make financial sense for your family to go to any of the buffets but you still have access to those places. For table service, you can ask if child portions are available to your child. If not, consider just ordering an appetizer or get a side dish for your meal and make it their meal or see if you can share a meal.

 

[Mia22]

No rudeness intended. I am simply presenting information about why what you suggest isn’t reasonable from the operator’s perspective. I did not suggest that you had any malicious intent, just the complexities that limit your suggestion‘s resonableness.

I might add that while I would like Disney to discount my ticket, or go back to the A,B,C,D, and key ticketing from the 1970s as that would better suit my current needs, I don’t really expect Disney to make that adjustment. It’s not reasonable, given the current admissions model in use.

No rudeness intended. I am simply presenting information about why what you suggest isn’t reasonable from the operator’s perspective. I did not suggest that you had any malicious intent, just the complexities that limit your suggestion‘s resonableness.

I might add that while I would like Disney to discount my ticket, or go back to the A,B,C,D, and key ticketing from the 1970s as that would better suit my current needs, I don’t really expect Disney to make that adjustment. It’s not reasonable, given the current admissions model in use.

Steve, I sincerely apologize for mistaking your posts as rude if they were not written with that intention. When you said I just want a discount, all reason went out the window. Now I understand you were just trying to speak factually. At the time I honestly felt it was a jab. Sorry for my harsh response.

 

[PinkPixel]

I’ve heard such wonderful things about how Disney handles special diets for those with allergies, special diets due to religious beliefs and those with lifestyle choices such as vegan diets. We love WDW and feel supported by the DAS system in the parks and are grateful that my daughter has reasonable accommodations so that she can enjoy herself.

I’m surprised and disappointed in the response to disability-related dietary needs.

Selective or restrictive eating is the most common eating challenge faced by autistic people and disability-related digestion issues such as gastroparesis (delayed gastric emptying), that requires eating smaller portions could be easily accommodated. They could accommodate by allowing a small to-go box at an all you care to enjoy or buffet meal, allow a guest to select a kids item or if feeling generous, could allow for a 1/2 portion and price accordingly.

Instead, families like mine are left to make reservations months in advance without knowing if the manager will take mercy on us and make reasonable accommodations to adult meals.

I can’t sit and eat a meal in front of my hungry daughter while she eats bread and water.

When I reached out to the special diets team about my daughter’s diagnosed gastroparesis & restrictive palate due to autism, they responded by informing me that kid’s meals are designed for a child 3-9. Ouch!

I have a young adult and I know a kid’s meal wasn’t designed with her in mind. She can’t ingest an adult sized meal and has to eat small meals frequently. It sounds like Disney’s view is that we would somehow be cheating the system to order a kid’s meal or take her fare share in a to-go box at a restaurant like O’hana.

I would love to see Disney allow guests with such disabilities to make dietary requests (and have reasonable requests granted) in advance, so we don’t need to haggle with busy restaurant managers who may confuse us with simply having an overgrown “picky eater” or someone who is trying to cheat the system and save money by requesting a kid’s meal.

I sincerely wish Disney will do more to support autistic people with eating difficulties and those with severe digestive conditions in the future. After all, inclusion is one of the five keys, is it not?

Thanks for taking the time to hear me out. I really hope that a reasonable positive change will be made in this regard.

My young daughter has multiple life-threatening food allergies to common top 9 foods that she carries an epi-pen for, she is also highly selective. There have been times the only food she could safely and would eat at a sit down or prix-fixe was bacon and strawberries, or a roll. They never charged us less. I had to jump through many hoops to try and achieve a "normal experience", sometimes months in advance and repeatedly (galactic starcruiser). We were never charged less or differently. Not saying it's ok by any means, just sharing that we were not treated differently regarding price.

 

[Mia22]

My young daughter has multiple life-threatening food allergies to common top 9 foods that she carries an epi-pen for, she is also highly selective. There have been times the only food she could safely and would eat at a sit down or prix-fixe was bacon and strawberries, or a roll. They never charged us less. I had to jump through many hoops to try and achieve a "normal experience", sometimes months in advance and repeatedly (galactic starcruiser). We were never charged less or differently. Not saying it's ok by any means, just sharing that we were not treated differently regarding price.

I hear you. My daughter has always had eating issues related to her autism and we’ve visited the world many, many times. I’ve never asked for a discount or anything special, ever. The gastric medical issues she has are new. I really was hoping for some reasonable accommodation and listed a few ideas such as a smaller portion (not a discount on a full meal) or being able to have the special diets team add a note to allow a kids meal at a TS restaurant. We wouldn’t even take a small boxed to-go portion as it would go bad and logistically wouldn’t really work for us, but for some might work and that’s why I mentioned it, although if we were dining at our resort it would be helpful. We always pack non perishables and I read all the menus ahead of time. It is what it is. We are still super excited to return to the Disney bubble regardless!

 

[piccolopat]

I hear you. My daughter has always had eating issues related to her autism and we’ve visited the world many, many times. I’ve never asked for a discount or anything special, ever. The gastric medical issues she has are new. I really was hoping for some reasonable accommodation and listed a few ideas such as a smaller portion (not a discount on a full meal) or being able to have the special diets team add a note to allow a kids meal at a TS restaurant. We wouldn’t even take a small boxed to-go portion as it would go bad and logistically wouldn’t really work for us, but for some might work and that’s why I mentioned it, although if we were dining at our resort it would be helpful. We always pack non perishables and I read all the menus ahead of time. It is what it is. We are still super excited to return to the Disney bubble regardless!

If they officially allowed adults to order a child's meal due to medical conditions like the one your daughter is dealing with, it would open up a new can or worms. Under the ADA Disney can't ask for proof of a medical condition. Anyone who wanted smaller portions for any reason could call and say they needed this accommodation. Lots of people who want to eat less or spend less would take advantage of this. Many places will voluntarily accommodate your request, but if not you can always just order what your child will eat and pay for it, even if quite a bit of it is left behind. For other than AYCE places, you can bring a container and ice pack to take leftovers with you so they can be eaten later on.

 

[Genie+]

You are not alone. Many parties have guests with very small appetites. Makes it harder to justify expensive buffet and family style meals, but there are many decent alternatives. People split meals, order appetizers, do QS, visit lounges instead and save the ‘hard to justify’ places for a special occasion or when they still find value.

I think most dietary accommodations at WDW strive to give options in areas where people had few outside of bringing their own or having the family go back to the room and prepare their own food. Disney is very skilled at making pragmatic look altruistic. Food portions doesn’t really fit since there are still many options available.

 

[Mackenzie Click-Mickelson]

You are not alone. Many parties have guests with very small appetites. Makes it harder to justify expensive buffet and family style meals, but there are many decent alternatives. People split meals, order appetizers, do QS, visit lounges instead and save the ‘hard to justify’ places for a special occasion or when they still find value.

I think most dietary accommodations at WDW strive to give options in areas where people had few outside of bringing their own or having the family go back to the room and prepare their own food. Disney is very skilled at making pragmatic look altruistic. Food portions doesn’t really fit since there are still many options available.

Lounges are another good idea (someone else may have mentioned it already and I missed that, my bad if they did)

 

[easyas123]

While I do not have Autism, I do have Gastroparesis. I don't do buffets - mostly because I don't care for them. If I was with a group that wanted to go to a buffet I'd decide if I wanted to go or not...if I did I'd suck it up, nibble on a bit and pay my bill - but that is a choice I have, as there are many many places to eat at WDW that aren't buffets. I've both been able to order a childs meal (I've only done this a time or two to be honest because the child meals are kind of blah) and I've been able to get something to go in the non-buffet restaurants. But what I usually do is just order a app OR I just have a few bites of a full meal and don't finish my meal/my husband has some. I feel like it is very doable, at WDW or elsewhere with some flexibility.

 

[5disneymama]

I agree it’s frustrating to spend a lot of money and not eat much food. I have Crohn’s and have been to WDW while I was very sick and couldn’t eat much at all. I also have a child with gastroparesis and she eats small amounts all day.

We have just eaten what we are able to and pay for the experience at the AYCTE places. While I’d love to pay less for a smaller portion, I do understand why that isn’t a can of worms Disney is able to open.

 

[robinb]

I hear you. My daughter has always had eating issues related to her autism and we’ve visited the world many, many times. I’ve never asked for a discount or anything special, ever. The gastric medical issues she has are new. I really was hoping for some reasonable accommodation and listed a few ideas such as a smaller portion (not a discount on a full meal) or being able to have the special diets team add a note to allow a kids meal at a TS restaurant. We wouldn’t even take a small boxed to-go portion as it would go bad and logistically wouldn’t really work for us, but for some might work and that’s why I mentioned it, although if we were dining at our resort it would be helpful. We always pack non perishables and I read all the menus ahead of time. It is what it is. We are still super excited to return to the Disney bubble regardless!

Many non-AYCE restaurants will allow your daughter to order kids meals. Just ask for the kids menu when you are seated. Like I said, I got occasional pushback from some restaurants when my DD wanted to order from the kids menu as a teen, but most places are perfectly OK with it. Like most things at WDW, the telephone CMs don't really know what is really happening in the parks. They have to tell you the "Guests 9 and under" party line while in reality the rules are very fluid. Good luck and I hope you have a great time!