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

Skipadeedoodaa

Earning My Ears
Joined
Jun 15, 2019
My husband and preschooler are seriously talking about Disney World. The preschooler is the kind of creative, phantasmagoric, wonder and awe, dress up type that is stereotypical of being a Disney kid. It really is a shame the child hasn't been, but I have a lot of reservations about going. I thought I'd ask here (hello!) to get a realistic picture of what Disney World would or could look like for us from families similar to ours.

DH is talking about taking our camper to Fort Wilderness this Autumn. (Don't you have to plan a year out and call for reservations competitively? Or have I misunderstood?) For perspective, we went on a weeklong trip in it recently and basically had one day at the conference then we required one down day in the campground and we were not able to do a single thing on our "must/want/can see" list for the area outside the every-other-day activities we managed at the conference itself. Executive functioning and lack of sufficient sleep is a major issue on trips. Go to bed late, sleep poorly, get up and moving around 9-10 am in response, coordinate everything to get out by about 2 pm, by that point we need to clean up the disorganization that's occurred and start preparing for the next day, so we stay in, play at the campground, go to bed early, and we make it to the next day's activities.

When I took the older two by myself to Disneyland many years ago before the babies (using a stroller as wheelchair for the then-toddler-now-child), I was so grateful to have a great Californialand view and to to have a room that was front and center for the light show at night to not feel locked away because our pattern was basically about 3-4 hours in the park in the morning as our max, with one night out in addition in the week. And now that child has the same needs but in a body three times as big and we have two more with special needs.

I've heard so much about the parks being less friendly and more skeptical of disabilities now than ever and it seems like so. much. money. to risk being in my camper with the toddler while my family goes to Fort Wilderness activities, the preschooler excluded and melting down without me, or something like that as our experience of Disney World. I have heard of disability guides but the context I heard about them in was their scamming for the non-disabled so I have reservation there as well. I don't want to be mixed up in drama, I just want to figure out how a Disney trip could be feasible and what realistic expectations would be for us. I completely understand the process of asking for needed accommodations (not explaining medical labels), but I have no idea how these dynamics tend to be disabling in an environment in which we've never been but it is my previous experience that trying to describe one person's limitations is overwhelming to our general society which cannot at all understand or be allies for when it is 6 people. I'd be grateful if anyone could give me a realistic idea of what our trip could look like and what things could make or break such a trip for us.

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.

We have many therapists and supports at home we don't have while traveling. Behavioral symptoms are usually less incapacitating while traveling because of the novelty of travel and singular focus, but pain and exhaustion are usually far worse. We use an inline double stroller with adjustable height bar and seat placement to allow me to use it as a walking aid when only having light bags or the toddler and it can be used as a chill out spot for the preschooler or child with Dad pushing when needed. (The child is getting too big to squeeze in. Are there alternatives for this?) I also try to pre-plan and/or pre-cook foods for travel to not have gut issues. When we went to Disneyland ages ago, I had water bottles and safe cereal and all that delivered and had a fridge put in the room and that went very well. 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.

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.

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.

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.

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.

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

Edited to add a skipped word.
 
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I would love to find some sort of electronic wheelchair that doesn't require arm extension to navigate
Power wheelchair, through your insurance (because no rental company will rent you one without experience) or see if there is a service organization - Masons, Knights of Columbus... - that loans equipment.
AND has a means of carrying the toddler with me (attachable side car or stroller or second seat kind of thing) if that exists.
No. Even if such a thing exists, it is NOT SAFE especially in a crowded theme park!!!!

maybe somebody else will have suggestions, but it sounds not doable without additional adults.
 
Power wheelchair, through your insurance (because no rental company will rent you one without experience) or see if there is a service organization - Masons, Knights of Columbus... - that loans equipment.
That's a great idea! I'll look into it. Thanks!

maybe somebody else will have suggestions, but it sounds not doable without additional adults.
Do you know anything about the services for hire with additional adults? I don't want to think it is a solution and then find in reality they bring resistance and suspicion because of their shady history.
 
Absent significant support from other adults, I see no way to make this work.

I recommend speaking with your physicians/therapists about possibilities for assistance, as anyone you hire will need to have specialized training in the areas for which you need assistance.

No idea what you mean by "shady history".
 
Absent significant support from other adults, I see no way to make this work.

I recommend speaking with your physicians/therapists about possibilities for assistance, as anyone you hire will need to have specialized training in the areas for which you need assistance.

No idea what you mean by "shady history".
Thanks! Can you tell me which spots you foresee to be the bottlenecks?

I haven't read up on Disney parks at all so everything I know comes from cultural absorption. I just googled Disney disability scam and all the hits look about like this:
Disney World Scam: Wealthy Moms 'Rent' Disabled Guides To Skip ...
May 14, 2013 - The New York Post reports that the latest “must have” for wealthy parents, is a “disabled” guide at Disney World, so that their darling children …

Disneyland Cracks Down on Fake Disabilities, Forgets Real Ones
Apr 6, 2016 - In the past, we once chose to go to Disney World. A Disney resort can be a relief for a parent if one of your kids has a disability. You are in a …

Undercover at Disney: 'Deplorable' scheme to skip lines - Today Show
May 31, 2013 - They're hiring disabled tour guides so they can cut right to the front. ... Rossen Reports: Scheme to skip lines at Disney ... Know a scam?
 
Thanks! Can you tell me which spots you foresee to be the bottlenecks?
Really, as @OutBigTrip recommended, you need to discuss all this with your specific medical teams. Nobody here who hasn't visited with your specific party makeup can give you definitive answers.
May 14, 2013 May 31, 2013 Apr 6, 2016
See a common factor? Those articles are three or did years old. They're also not in any way the kind of help we're advising or that You need.

You want to
  • Talk to your medical teams/caregivers about help with the trip
  • Talk to family/friends about help with the trip
  • Talk to a reputable caregiving company (Kids Night Out, care.com, etc.) about help with the trip
Given the multiple needs by every individual in your party, this does NOT sound like a trip you can manage with just two adults.
 
As fair as forth wilderness goes you can get a spot but it can be hard, ( I would try as fair out as you can maybe go next year February- early march Monday - Friday as park days if you can)

I would see if another adult you know what to go to help out ( I do not know about your budget) but offer a free stay if they can do there own ticket or something like that. I just do not see being able to do Disney any other way for you.

get a mobility device for you ( sounds like a power wheelchair will work best for you some ECV can have the tiller very close to you that you might find this works for you. you can call the ECV rental companies and ask them how much the tiller comes to the back of the set

depending on how your families disability is in crowds they might qualify for the DAS ( the DAS does nothing for mobility problem so it sounds like it would not help you but maybe another family member) you will need to go to GR and talk to the CM there they do not care about DX but needs in line that do not have to do with mobility or stamina ( so cannot walk a long time cannot stand a long time) are things that CM do not need to hear And some times they hear this and do not hear the other needs and will just say no. No Dr note is needed but if you find writing down need ( like child one has a hard time in line because of ABC and XYZ )


since you know you take a while to get going in the morning I would not plan on anything in the morning but have your first FP for a little while after you will get to the park ( so if you think you can get to the park at 11 maybe do your first FP for 12) this way you are not stressed that you might miss your first FP, I would plan a day in between park day to rest pick you must do thing and FP those maybe have each family member pick one thing they must do for the trip ( the younger one might not be able to)

a few other things that might help is using lyft or something similar since staying at the fort you have to take the internal bus to the main bus stop then another bus ( this can take a long time) so it might be better not to use Disney ( if you drive then use your car) get touring plans ( you can find a discount for it online if you google it) and use it to help find what ride to go on when you can set it so that you do as little walking or waiting to fit your needs

also, do not even think you will do and see everything if you get your 3 FP and maybe one other thing then that might be all you do and that is fine. it is really hard for anyone to do everything at Disney anyway. If you can not find someone you know you might be able to find someone in orlando ( they have a few privet tour groups to help you out) and see if this is something ( just having the extra help with the kids.) or wait until your youngest are older and can maybe be more help
 


Really, as @OutBigTrip recommended, you need to discuss all this with your specific medical teams. Nobody here who hasn't visited with your specific party makeup can give you definitive answers.

See a common factor? Those articles are three or did years old. They're also not in any way the kind of help we're advising or that You need.

You want to
  • Talk to your medical teams/caregivers about help with the trip
  • Talk to family/friends about help with the trip
  • Talk to a reputable caregiving company (Kids Night Out, care.com, etc.) about help with the trip
Given the multiple needs by every individual in your party, this does NOT sound like a trip you can manage with just two adults.
Thanks! I have reservations and know I do not have a clue or good info which is why I'm here. I'm hoping some with similar experiences will be able to tell me about their stays, what they encountered and what worked and what didn't for them, so that I can compare to what I know of our family to have a better guess at how it might look for us.

For example, many people with disabilities seem to be saying that a monorail hotel is a huge help for mid-day breaks. I mentioned this to my husband and he said Fort Wilderness is on the boat and provides equal accessibility. Gap2368's info on the Fort Wilderness accessibility makes it clear it is not the same as the monorail and I know how much we'd struggle to load and unload stroller, chair, etc from multiple buses based on what I know of our family. Info like that is what I will be able to discuss with our care team and what I'm looking forward to learning more about to be able to decide if we could feasibly go and what it could realistically look like. I really appreciate your help!
 
You might want to look into CBR or POP if you go after the gondola open this will give you easy access to two parks. There is a difference load unload area for people with disabilities. Pop is my go to resort it is small enough to walk every where unlike CBR where you might have to take a bus to the gondola
 
You might want to look into CBR or POP if you go after the gondola open this will give you easy access to two parks. There is a difference load unload area for people with disabilities. Pop is my go to resort it is small enough to walk every where unlike CBR where you might have to take a bus to the gondola
I just googled CBR, POP, and gondola. I am so glad I came here! I'd never have known a sky transit system is coming. Thank you!
 
Kudos to you for coming here and laying it all out - as Disney parents we all want to our children to experience all the joy that Disney offers. As other have said, this trip really sounds like it needs additional adult support. If there are no relatives who can travel with you perhaps you can check with your doctors - they may know of medical support that can travel with you. You can also contact your local Autism Speaks and see if they can direct you to travel support. Good luck!
 
I by no means have experience with severe disabilities, my DS has a chronic disorder which can be disabling...but he isn't disabled. With that said, if you want to do this, then it probably can be done. I would suggest two things......one, plan for a three hour park window then rest of the day free. Two, call kidsnite out...they are sitters for hire, but will accompany you into parks as well. They do have sitters that are trained/ capable of handling special needs. You would need to call them and ask about specifics. They are a bit pricey....but may be a huge help to your family. I wish you well whatever you decide to do!
 
I will reiterate a bit of what others have said, but, hopefully add some useful tips. I would definitely consider either a monorail resort or an Epcot area resort and would pick the area based on which parks you plan on visiting the most. If you are planning on visiting MK the most, pick a monorail resort (I would probably lean toward CR for your family). If you plan on visiting Epcot and DHS the most, pick an EP area resort - I would probably lean toward Boardwalk Inn simply for pool safety reasons as the pool at Beach Club/Yacht Club is quite spread out.

With the Contemporary Resort, you can walk back and forth to MK (or take the monorail) and also take the monorail to TTC to get on the monorail to Epcot. You would take a bus to AK and DHS.

From Boardwalk Inn, you can boat or walk to both Epcot and DHS and bus to MK and AK.

I would definitely ask your doctors, family, friends, etc. for any help they could provide (or resources they could recommend) in order for 1 or 2 more adults to travel with you. If no one can go, as PP's suggested, look into Kids Nite Out - they are the WDW recommended child care providers for the resort and have people on staff who could accompany you into the parks.

I would definitely ask for the DAS at guest services at your first park and make your 3 FP+ per day prior to arriving. I would schedule your first FP+ for the time you think you can realistically get to the park. If it's in the afternoon, it's ok. My DS11 can really only handle half days in the parks and we typically do our 3 FP+, 1 DAS ride and then he is done. I can, sometimes, keep him in longer if the time is spent doing very leisurely things, (having a snack, looking in shops, etc.) but he just can't handle the lines and crowds for very long.
 
@Skipadeedoodaa

As far as your situation goes, given the fact that every member of your family - including you - are disabled (albeit in different ways) I think that you should certainly consider taking along at least one extra adult (perhaps a grandparent, or aunt?) if not two.

Absent bringing along other adults, or hiring a local sitting service, your next choice might be to split up, and you and your husband take turns taking one child at a time into a Park while the rest of the family stays at the Resort. If you want the entire family to stay together, you may need to look at going to a Park for a couple of hours, then returning to your Resort for a break, and then going back later. You could do this as many times as you want (and can fit in) during normal operating hours. Disney buses run about every 20 minutes to every one of the 4 Parks from every Resort hotel, all day long from a couple of hours before the Parks open, until a couple of hours after they close.

While there is a company that makes an ECV with "towable" trailers, and even an additional towable seat as accessories, Disney World (and most public venues in the US) don't allow anything to be towed behind a personal mobility device, including ice chests. Disney World has a clearly stated rule of one person per device (or as we put it at our house, "one seat, one butt"). As you will see at WDW, it is for safety reasons.

There *are* things that Disney World does that can benefit you and your family. For example, they have a "stroller as a wheelchair" tag that will allow you to put your two littlest ones into a stroller, and it will be treated like a wheelchair everywhere (except on actual rides - then the kids will have to ride like everyone else).

They have the DAS system (there is a lot more info on that here - look at the first page of the DISabilites forum for a "pinned" post about the DAS) which may, or may not be helpful to you and your family. No one here can give you a "script" on how to obtain one, so please don't ask, but we can tell you that the DAS is typically not issued for mobility issues, so plan accordingly.

Disney World has different types of Handicapped Accessible rooms at each Resort. Some have grab bars in the tub/shower, others have roll-in showers for wheelchair users. Those can be found at every "level" of Resort - from Values, through Moderates, and Deluxes, and even the Cabins at Fort Wilderness. If you are concerned that your family might need more privacy and quiet, personally, I would recommend the Cabins; each Cabin stands alone, and does not share walls with any other building, so you don't have to worry if someone is having a meltdown that is louder than might typically be tolerated in a "traditional" hotel setting.

But, if your personal RV is more comfortable - and familiar - for your family, then that is where you should stay. :) The "worst" thing you can say about Fort Wilderness is that you have to take either 2 buses, or a bus and a boat, to get anywhere outside the Fort. But it is so beautiful and tranquil, and the people are all so friendly that you don't care - I speak from experience :)

Almost every boat is wheelchair accessible (there are some smaller boats, that have steps down into them that are not, but those boats run routes that are served by other, accessible transportation) and every bus, Monorail and Gondola is. There are also accessible "Minnie Vans" that you can call (works like Lyft or Uber) to transport your travel group from one part of WDW to another.

There are First Aid stations in every Park if you need one. You can find them on every map at Disney World, and they are open until just before fireworks every night.

You won't find any "scams" here, and unless you are trying to cheat the system somehow (and I don't think you are) then you will be fine. The folks in this corner of the DIS try to give out current, realistic advice. We don't talk about "Pixie Dust" (when a Disney Cast member "magically" makes something happen for your or your family on a one-time, surprise basis) because that sets an inappropriate expectation for you; not everyone gets "Pixie Dusted". We tell the truth, and we will all do everything we can to help you. The DISboards, in general, are a great place to get realistic information about every aspect of your WDW vacation.
 
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)?
 
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)?
If you mean ' included' on dining reservations in parks....I would say yes. You must provide a meal for a KNO sitter after 6 hours, however if your family is dining and you won't have the sitter for a full 6 hour window you aren't required to pay for a meal. Personally I would feel awkward though if you needed help in a restaurant, so sitter came in to help but she wasn't invited to eat with you.
However, if you mean including the sitter on your resort reservation, no, you do not need to include her in your count. She is a ' visitor' at the resort. Be advised the sitter will not help in water activities...no baths, no pools or even pool areas.
We use kids nite out often, have always had great experiences with them. I hope this answers your question, but if you have any others about Kids nite out, I'm more than happy to answer! Hope trip planning goes well, that's part of the fun :)
 
We are a family of 3 with moderate/severe physical and invisible disabilities and we are going to make it work.
We have planned for about 3 years before the trip. Done small scale practice runs at regional theme parks. YouTube videos to assist those of us with anxiety/on the spectrum and gleaned a ton of information from these boards.
Some of our strategies:
Booking rooms we want/need in advance (will do same for adr and FP)
We are planning on daily afternoon break of at least 4 hours and 10 hours between getting home one night and leaving next morning. We have two 1/2 water park days and 2 resort days.
We became very familiar with what resort does/does not have. Will have grocery and Amazon delivery to supplement what we need.
Rented medical supplies/mobility device.
Going to book non -stop flights and utilize TSA cares services.
YouTube, for planning, getting people to know what to expect of rides/food.
Physical conditioning: getting ourselves in top (for us) condition.
We are using a service to make a personalized plan for park days.
We will ask about a wheelchair tag and DAS when we arrive our first day.

We wanted to be pampered and are opting for using Disney transportation. I’d rather not worry about a rental. We are also going to do the dining plan. It works for our situation.

I found that for our family a lot of information was going to be read and use what applies in our particular mixed situation. I found videos to be the most helpful because oftentimes it was a fluke that the information I needed was there ( saw a dad handle two toddlers and a double stroller on the bus and that was one of my biggest anxieties until I saw this person do it), a post here finally helped us answer if our custom wheelchair was too wide for the resort room door ( it was). So we rented. We elected not to bring any extra people because we do us just fine day to day and in all our practices the personality mix of adding another person, even one without special needs, was too much on all of us, we had a better time going at a slower pace. But ymmv.

FWIW, we looked long and hard at Fort Wilderness and if we had the $ to do a cabin, car and golf cart rental I would have gone for it in a heartbeat. With a family of 6 people you would be limited somewhat if you all wanted to stay in 1 room.
 

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