Is Disney possible for us? (multiple moderate to severe invisible disabilities)

Unfortunately, no :( the kids nite out sitter's according to the line you call aren't supposed to use their annual pass even if they have one.....not sure why. I can tell you that I have had only one sitter that actually had an annual pass....you won't know until they get there and then they won't have brought it with them ( evidently they aren't supposed to use it while working) even if they do have one.....maybe someone else will know the reason why?If you need a sitter multiple days you can ask for the same sitter though. You are also HIGHLY encouraged to tip the sitter each day.

Because it would violate the rules of the AP - they aren't supposed to be used for commercial purposes.
 
Here is a break-down of us...
Mom: Ehlers-Danlos Syndrome. Disability placard (I know it doesn't matter to them, but am just communicating the level of need to you and mentioning in case it affects parking considerations). Moderately impacts hips, hands, and feet; significantly impacts shoulders and spine which makes holding the arm out at extension to control a scooter quickly cause numbness and pain, and leads to migraine. (Often can't wash hair or pass a cup of coffee.) Prominent dysautonomia (blood pressure, gut, and heart rate problems causing exhaustion and passing out). Mornings are slow, walking is fine, but walking and talking (like needed to manage and coordinate children with multiple disabilities), much less in humidity while weight-bearing (pushing a stroller, carrying a child or bag, etc) is moderately disabling at first and becomes completely incapacitating within a couple days.

[...] I would love to find some sort of electronic wheelchair that doesn't require arm extension to navigate AND has a means of carrying the toddler with me (attachable side car or stroller or second seat kind of thing) if that exists.

the learning curve for a motorized wheelchair is very steep. no one will rent one to you unless you already use one every day at home. NO attachments are permitted..they have even banned wagons now. your accommodation as far as Disney is concerned is a Wheelchair or ECV. they are not going to combine everyone;s issues and provide one encompassing accommodation. each person will be assessed separately

Dad:
Autism spectrum, the only significant impact of which is that all executive functioning and emotional management of the children is Mom's domain as Dad cannot see or respond to those needs. not Disney's problem. you'd be better off bringing one of your at home support agents with you to wrangle the kids

Teen:
Prominent anxiety that is mildly disabling when Mom can manage the emotions, but severely disabling to incapacitating when Mom cannot talk through, organize, and direct. (The art class at Disneyland being fast-paced led to a panic attack years ago, to give a gauge.) That means the teen is using all the spoons to self-regulate so cannot offer any meaningful support for siblings. Also, hard of hearing and needs to be able to see closed captioning, supertitles, or faces. And MCAS with multiple food and environmental allergies. allergies are fairly easy to be handled. you would need to ask each Cast member at the beginning of any show entrances where you can sit , or ask at Guest services about the personal device fo hard of hearing guests

Child:
Significant autism, globally impaired. Chatty, social, looks like a model. Loves rollercoasters. Cannot regulate emotions in response to expectations or disappointments which worsens when tired, excited, or bored, and causes thrashing meltdowns that can involve hitting, kicking, throwing, etc. Sensory-seeking, especially when bored (like when in a long line), which is a very predictable place for behavioral symptoms. Many neurological implications including elopement, bladder (urgency and frequency causing us to have to abandon whatever we're doing and run often just 10 minutes after a last bathroom stop), discoordination and poor tone (wears AFOs), stuttering, challenged executive functioning which makes for difficulty in morning and evening routines (getting dressed, etc) and in having realistic expectations, and so on. Modified diet. This kid is super competent until totally not so it is difficult to believe the level of need in the first 5 minutes but over a day it is very obvious to anyone that it is an all-encompassing level of need. MIGHT be eligible for a DAS. you must be able to explain to a Cast Member why they cannot wait in the regular line.

Preschooler:
Wants to dress up and have conversations with the princes and princesses, especially Elsa. Has Tourette Syndrome, making for a child in perpetual speech and motion with taboo words/phrases, including punching and kicking tics which are moderately disabling (needs space and understanding). Tics increase when bored, tired, etc and decrease when focused and calm. Insect anaphylaxis and severe MCAS with dietary and cholinergic triggers to heat, exercise, activity, pressure, friction, strong emotions, etc causing allergic reactions in a sensitive child who has sobbing meltdowns and bouncing off the walls excitement, needing lots of physical and emotional regulation support. Also possibly DAS eligible. but if any of the kids becomes disruptive or a danger to themselves or others you will be asked to leave.

Toddler: Global developmental delay, rigid repetitions, mostly non-verbal, poor tone, pretty chill.

Edited to add a skipped word.


quite frankly, unless you bring a team of people with you.. one to handle each kid, I cannot see how you can handle everything on your own without dad's assistance and still be able to function yourself. so either JUST bring the pre schooler, or choose another vacation option. not even sure spending the money on a personal Tour guide that skips all the liners would help.
 
I don't mean to be a Debby downer but with even just your mobility issues this trip would be near impossible and painful. Disney is HUGE. With kids in strollers panicking due to anxiety or sensory overload and you unable to react fast enough and your husband lacking the ability to pretty much take care of the kids alone I feel this trip would be hell.
Most family's have to plan a year to make sure things are set for a family with just 1 disability .

I had a trip with my mom who is just unable to walk long distances and she was very taken back by how big it is. We rented a scooter but between the heat and amount of moving around people with her scooter she just didn't really enjoy herself.

I hope you can figure out a great family vacation but I feel Disney is not for your family. The extra money you would need to spend for extra help could alone pay for a nice weekend trip somewhere.
 
quite frankly, unless you bring a team of people with you.. one to handle each kid, I cannot see how you can handle everything on your own without dad's assistance and still be able to function yourself. so either JUST bring the pre schooler, or choose another vacation option. not even sure spending the money on a personal Tour guide that skips all the liners would help.
I don't mean to be a Debby downer but with even just your mobility issues this trip would be near impossible and painful. Disney is HUGE. With kids in strollers panicking due to anxiety or sensory overload and you unable to react fast enough and your husband lacking the ability to pretty much take care of the kids alone I feel this trip would be hell.
Most family's have to plan a year to make sure things are set for a family with just 1 disability .

I had a trip with my mom who is just unable to walk long distances and she was very taken back by how big it is. We rented a scooter but between the heat and amount of moving around people with her scooter she just didn't really enjoy herself.

I hope you can figure out a great family vacation but I feel Disney is not for your family. The extra money you would need to spend for extra help could alone pay for a nice weekend trip somewhere.
Thank you. I appreciate your honest feedback.

On the flipside is the reality that this is our everyday and we do take many nice weekend and weeklong trips. Amusements parks add stresses which I'm well aware of (concrete, heat, external timeframes, crowds, waits, etc), and massive never-ending amusement parks could be a black hole, which is the reason for my own reservation. I'm more than willing to say absolutely not if I know we will be miserable.

The suggestions here of using a power wheelchair over a scooter will hugely ease fatigue for me (hips and shoulders are really problematic on ECVs) and I am willing to spend the money, and wait until we have the money to spend, to really make it work with an attendant, on-property stay, etc.

After watching a tour of the Fort Wilderness campground and reading how much can be done on-property without a ticket, I feel comfortable with planned half and down days. I also know my preschooler will make it all worthwhile if I can figure out how to make it happen. So I'm in a place of active neutrality, trying to figure out how it can happen for us.
 
Thank you. I appreciate your honest feedback.

On the flipside is the reality that this is our everyday and we do take many nice weekend and weeklong trips. Amusements parks add stresses which I'm well aware of (concrete, heat, external timeframes, crowds, waits, etc), and massive never-ending amusement parks could be a black hole, which is the reason for my own reservation. I'm more than willing to say absolutely not if I know we will be miserable.

The suggestions here of using a power wheelchair over a scooter will hugely ease fatigue for me (hips and shoulders are really problematic on ECVs) and I am willing to spend the money, and wait until we have the money to spend, to really make it work with an attendant, on-property stay, etc.

After watching a tour of the Fort Wilderness campground and reading how much can be done on-property without a ticket, I feel comfortable with planned half and down days. I also know my preschooler will make it all worthwhile if I can figure out how to make it happen. So I'm in a place of active neutrality, trying to figure out how it can happen for us.
Seems you answered your own question. I hope you the best of times when you do decide to go!
 
Seems you answered your own question. I hope you the best of times when you do decide to go!
Thank you! I am not sure how or when, and that it can be possible with realistic expectations and supports only came about through the wonderful help I've had here, for which I'm really grateful. I still have a lot to figure out.
 


Have you tried a theme park close to you? Before we ever took on Disney we went to Six flags.
Also I really suggest after hours parties they are low on attendance, the sun is down it was all together a better experience for our special needs child.
Six Flags is very discouraging of accommodations. We've spoken with their top staff and got it straight from the horse's mouth. It made us stop going many years ago. Cedar Fair is wonderful in consistent and intuitive accommodations so we continued going to their parks until the little ones joined the family. So we haven't been on park-centric vacations in over 5 years and haven't been to any amusement park in probably 3 years or so.

We need to make some regional visits with everyone but we've been to amusement parks extensively enough to know you just can't compare a park that tries to make your visit like everyone else's with one that tries to shoo you away.

Thank you for the after hours party tip! I'll google the options!
 
Hmm. Maybe instead of Disney, SeaWorld? You could still camp at Fort Wilderness, but recently somebody posted about a week at SW for $1,000 including hotel and tickets. Smaller park, less crowded
 
Six Flags is very discouraging of accommodations. We've spoken with their top staff and got it straight from the horse's mouth. It made us stop going many years ago. Cedar Fair is wonderful in consistent and intuitive accommodations so we continued going to their parks until the little ones joined the family. So we haven't been on park-centric vacations in over 5 years and haven't been to any amusement park in probably 3 years or so.

We need to make some regional visits with everyone but we've been to amusement parks extensively enough to know you just can't compare a park that tries to make your visit like everyone else's with one that tries to shoo you away.

Thank you for the after hours party tip! I'll google the options!
Six flags does the same thing the other parks do, gives you a card tells you when to come back to the ride. For our son heat just made things worse. So untill we started going to the parties our days at disney were short anyways going at ropedrop leaving coming back later in the afternoon/night. I always went to the parks that had the longest days but it was so tiring its not like your car is right outside the gate. It seems like you cant get much done at the pary but you really can. No fast passes a lot less people just walking right onto rides.
 
Six flags does the same thing the other parks do, gives you a card tells you when to come back to the ride. For our son heat just made things worse. So untill we started going to the parties our days at disney were short anyways going at ropedrop leaving coming back later in the afternoon/night. I always went to the parks that had the longest days but it was so tiring its not like your car is right outside the gate. It seems like you cant get much done at the pary but you really can. No fast passes a lot less people just walking right onto rides.
Six Flags requires a signed doctor note, make you walk all the way up the exit for a return time which is then arbitrarily assigned in practice, intentionally has those in the disability access line wait longer than the regular line on some rides, limits access to only certain undesirable seats independent of wait time, or gives pre-assigned times for each ride in 15 or so minute increments which don't allow for breaks. The staff is actively obstructionist and unhelpful, having adopted the culture of the management that people requesting any accommodations are the parks' problems.

That is nothing like Cedar Fair, which has a realistic wait to return time given at the staffed entrance to a ride, allows a longer wait time in order to choose premium seats (like front row) and then general access to any other seat, allows return any time after the wait time so breaks can be taken as needed, and generally has a helpful attitude in interactions. It's a very different experience.
 
Hmm. Maybe instead of Disney, SeaWorld? You could still camp at Fort Wilderness, but recently somebody posted about a week at SW for $1,000 including hotel and tickets. Smaller park, less crowded
Thank you for the brainstorming! That it is smaller and less crowded is a plus. (Really? Is it because Orlando has such competition? The Sea World closer to home was always much more crowded than my Disneyland trips as a child or adult, though that was probably down to the times of year.)

But it is really the Disney royalty and imagination that is the draw as we have a child who comes to life with it, and Sea World just has no competition: water park, big person rollercoasters, caged sea mammals, and endless functional concrete without any imagination or beauty is not something I ever have a desire to visit again.

I remember visiting a theme park as a child (now bought out by a chain) where we'd go to a lot of shows with some intertwined rides. We loved it. I didn't realize until I re-visited as an adult that is was unusually show-heavy and that my family was intentionally taking advantage of that. It isn't the usual for Disney but I think with the right accommodations, expectations, and supports, that kind of trip could be doable. Somehow. And I'm willing (and insisting) to wait until we can afford to do that justice, whatever that will look like.
 
As for the “right accommodations”, the accommodations are what they are...wheelchair/ECV access, DAS, dietary for allergies, and closer seating for visual needs. That’s all Disney can or will do - the expectations and supports are up to you. And when you mention that two of your four children might become physical, again, that’s something you will need to closet manage, since disability or not, Disney isn’t going to permit guests who they see as potentially dangerous to others to remain in the park.
 
As for the “right accommodations”, the accommodations are what they are...wheelchair/ECV access, DAS, dietary for allergies, and closer seating for visual needs. That’s all Disney can or will do - the expectations and supports are up to you. And when you mention that two of your four children might become physical, again, that’s something you will need to closet manage, since disability or not, Disney isn’t going to permit guests who they see as potentially dangerous to others to remain in the park.
I don't understand the tone but looking past that to the content, I think you and I have consistent expectations.

I do not believe the only accommodations can be from the park's side. I can choose to let a child who needs a chill-out spot to sit in the stroller/wheelchair, in a cool corner, in our room/campsite, etc or I can choose to be a hardlined jerk who says children of this age should be able to stand in line and will either do so on the longest ride or will stay in the room/campground. There are middle grounds that can be explored. In addition to park accommodations and services like DAS and fast passes and VIP tours (information I haven't even scratched the surface on understanding), I can bring ear muffs and weighted clothing, I can modify our schedule, I can plan for consistent foods to be delivered, I can do gross motor and sensory exercises in the morning before going into the parks, I can take it ride by ride, I can make visual schedules and social stories to prepare....

These are not magic wands that make limitations disappear but they are helpful tools which can be layered together. The ultimate goal of any person with limitations or impairments is that accommodations can be made for the person to function with age-appropriate independence without being disabled. It would be my goal that the accommodations, expectations, and supports together would make our time in the park look as close to a typical family as possible, not that we would extend beyond that. I would not put a child in an environment the child could not manage, and would not leave a child in an environment without accommodation or support that was needed. This is our life, day in and day out, which means being in society and a part of a community no matter where we are. That includes being at Disney if I decide that those accommodations, expectations, resources, and supports can make that a viable option, however it needs to look for us.
 
I am reading every bit and searching all the acronyms and place names to match them up. I am very grateful!

One question off the bat is if we hire a helper (which is most likely for an additional adult), would the party of 7 instead of being 6 create issues in possible accommodations? It seems like that's a cut-off point for normal to exceptional for them from what I'm understanding. Would it be treated differently if we hired someone at home to travel with us or if we hired someone for certain times from the sitter services, for example to allow us to split up occasionally (for example, would the hired periodic helper not be included in our group)?
Yes with 7 people you need 2 rooms. If you go with a 2br deluxe resort you can fit 7 people in one room. Those rooms go for round $400 - $500 a night. Plus factor in that you will be buying park tickets for people who may or may not be able to go into the park that day because of their disabilities so that could be a waste of a ticket which cost $133 per person per day. Or paying $133 and the person can only be in the park for a few hours. And if that person must leave the park that means 2 people will be leaving the park there would be $266 wasted. Also factor in that you can easily walk or cover 5-8 miles a day for a Disney park visit. It may not be a good idea to hire someone to come and sit with your child if you say your child can get physical. Since one child has issues with the heat you would be better off going in Jan or Feb. The fall is very hot and humid.
 
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I suggest if you can't do the whole family then bring the little one. Each year that passes by you may have a harder time with your disabilities so this may be the time to go to give your little one the opportunity. Why not stay at Fort Wilderness, just do a day or two at the Disney parks and like a PP said, go to SeaWorld. The park has a lot of shows giving you downtime. They are also a certified autism center and have an awesome new Sesame Street area. Good luck and enjoy your memories with your children.
 

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