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

[Skipadeedoodaa]

FYI, there is no such thing as a right to “freedom of speech” in a Disney park, or in any other non-governmental space.

As for your children lashing out at others, true enough that you never said that. But you did say it requires “understanding”...understanding of whom? Because not too many people are going to be understanding of a child that is hitting, kicking, and biting, ADA or no ADA.

I said the tics require understanding and that ADA protects coprolalia, not freedom of speech. I am here in good will. The questions you're raising are basically about our existence and participation in society, not specific to Disneyworld. I would appreciate the charitable assumption that we are somehow making it work at home without being kicked out of places, arrested, having our children removed, or whatever else and that I therefore have some understanding of our own abilities and of what kinds of accommodations and expectations are needed which I can use to continue to make good judgements with an accurate picture of the parks with its ups and downs and beauties and stresses and joys and frustrations and whatever appeal it is that keeps you coming back.

 

[redberyl]

How do you balance the cost of going with what you're able to do while there? Do you just enjoy sitting with your feet up there? Use the sitters? Choose a cost-effective resort? Maximize savings to reduce the gap? Just accept the cost as is?
[/QUOTE

I just accept the cost as is. I have 3 choices: 1. just don't go to the parks at all, 2. go to the parks and make everyone miserable trying to get my moneys worth to justify the cost of going or 3. just accept that its part of living with a disability and enjoy what we can. I save until I can afford all the things we need to make the trip work. I have to bring a mothers helper with us (I can't use the park sitters because I need help in the airport). Getting out of the parks and back to the hotel quickly is a priority, so we stay onsite to be close by and rent a car because thats faster than the buses. a hotel on the monorail line would be ideal, but my oldest loves some of the themes at some of the other hotels so we haven't done a monorail hotel yet. I plan sit down meals at least once every day, and if I"m going to try to do a "long" day at the park (5 hours is a long day for us, lol) I will plan 2 dining reservations. There are some really fun restaurants at disney, so making dining reservations is a great way to allow my daughters to rest while still enjoying the whole disney atmosphere. We fly with an incredible amount of equipment so I pay to have a lot of supplies shipped so that I don't have to deal with it in the airport. We book extra days at the hotel where we don't have anything planned just to have some downtime and allow the kids to recharge physically and mentally. There are a lot of extra costs to make it work for us, but I won't go until I can afford to have all those things in place. It is possible to go to Disney and have a great time without actually "doing" anything. There are these awesome water fountains at epcot that my kids just love playing in (we always bring an extra set of clothes and shoes to epcot!), and there are drums in both epcot and animal kingdom that the kids love banging on, sometimes there will be cast members blowing bubbles and my kids both love to stop to chase bubbles (even though we have tons of bubbles at home), and we are rarely at epcot at night but if you are there is this area where they have fiberoptic lights in the sidewalks, and those are a huge hit with both my kids! Simple little things that my kids love, there is no line and no wait and no rush, just simple fun where the kids can unwind for as long as we need to. my kids love all those little things just as much as the big attractions, and its such a nice way to de-stress. When we aren't in the parks the kids sleep, we swim, play on the playground and explore the hotel. some of the hotels have really neat themes and it can be fun just to wander around. there are a lot of nice restaurants that you don't need a park ticket for so we do those. if its a nonpark day and the kids are rested and feeling bored we go to disney springs. The key is to just enjoy the moment and don't rush around trying to get it all done.

 

[redberyl]

I most wanted to visit Animal Kingdom and was thinking maybe we could just take a date night safari or something and I had to tell myself I wouldn't even look into it. I

If you don't think you can do a whole day at animal kingdom, you can plan a date at Sanaa. Its a restaurant that serves indian-inspired food at animal kindom lodge (its part of the hotel so you don't need a park ticket) that has big windows overlooking the Savannah, so you can see the animals while you eat.

 

[Skipadeedoodaa]

I just accept the cost as is. I have 3 choices: 1. just don't go to the parks at all, 2. go to the parks and make everyone miserable trying to get my moneys worth to justify the cost of going or 3. just accept that its part of living with a disability and enjoy what we can. I save until I can afford all the things we need to make the trip work. I have to bring a mothers helper with us (I can't use the park sitters because I need help in the airport). Getting out of the parks and back to the hotel quickly is a priority, so we stay onsite to be close by and rent a car because thats faster than the buses. a hotel on the monorail line would be ideal, but my oldest loves some of the themes at some of the other hotels so we haven't done a monorail hotel yet. I plan sit down meals at least once every day, and if I"m going to try to do a "long" day at the park (5 hours is a long day for us, lol) I will plan 2 dining reservations. There are some really fun restaurants at disney, so making dining reservations is a great way to allow my daughters to rest while still enjoying the whole disney atmosphere. We fly with an incredible amount of equipment so I pay to have a lot of supplies shipped so that I don't have to deal with it in the airport. We book extra days at the hotel where we don't have anything planned just to have some downtime and allow the kids to recharge physically and mentally. There are a lot of extra costs to make it work for us, but I won't go until I can afford to have all those things in place. It is possible to go to Disney and have a great time without actually "doing" anything. There are these awesome water fountains at epcot that my kids just love playing in (we always bring an extra set of clothes and shoes to epcot!), and there are drums in both epcot and animal kingdom that the kids love banging on, sometimes there will be cast members blowing bubbles and my kids both love to stop to chase bubbles (even though we have tons of bubbles at home), and we are rarely at epcot at night but if you are there is this area where they have fiberoptic lights in the sidewalks, and those are a huge hit with both my kids! Simple little things that my kids love, there is no line and no wait and no rush, just simple fun where the kids can unwind for as long as we need to. my kids love all those little things just as much as the big attractions, and its such a nice way to de-stress. When we aren't in the parks the kids sleep, we swim, play on the playground and explore the hotel. some of the hotels have really neat themes and it can be fun just to wander around. there are a lot of nice restaurants that you don't need a park ticket for so we do those. if its a nonpark day and the kids are rested and feeling bored we go to disney springs. The key is to just enjoy the moment and don't rush around trying to get it all done.

Thank you for sharing your experiences! This sounds very much in line with my values and approach to life so doable with the right planning. The balance of hotel to campground pro vs con will be quite the discussion should we decide to go!

If you don't think you can do a whole day at animal kingdom, you can plan a date at Sanaa. Its a restaurant that serves indian-inspired food at animal kindom lodge (its part of the hotel so you don't need a park ticket) that has big windows overlooking the Savannah, so you can see the animals while you eat.

Ooooh. We LOVE Indian food. I'll definitely tuck that idea away. Thank you!

 

[bababear_50]

Hi Skipadeedoodaa
My take on "How do you balance the cost of going with what you're able to do while there"
I think only you can set what goals(s) you are trying to achieve for you and your family.

I do know from being the person who accompanied an individual on a *dream trip* that we spent a year planning it out and 2 years saving for it. (This was just one individual and two support staff).

The first BIG mistake we made was going in the Fall time,,,while we are accustomed to heat the Florida humidity and heat finished all of us in about 2 hours. We were early morning people though so this helped
us get 2 extra attractions,,however we never did more than 4-5 things in a Park, (with break in between).

Is your own family physician onboard with you attempting this with your medical conditions?
I know the heat and humidity can be very hard on people with ehlers-danlos syndrome.

I would discuss your plans with the people who know your family the best (your current home support care team) and have them help you with planning and realistic expectations for each person.
Park PECS schedules
Sensory Park and Travel Tool kits
Daily schedule visuals
Character interaction role playing
etc

I wonder about adding *new* (sitters,helpers) to your family vacation and how the kids would respond to this, especially since the environment is going to also be new.
Best wishes to you and your family

Mel

 

[Skipadeedoodaa]

Hi Skipadeedoodaa
My take on "How do you balance the cost of going with what you're able to do while there"
I think only you can set what goals(s) you are trying to achieve for you and your family.

I do know from being the person who accompanied an individual on a *dream trip* that we spent a year planning it out and 2 years saving for it. (This was just one individual and two support staff).

The first BIG mistake we made was going in the Fall time,,,while we are accustomed to heat the Florida humidity and heat finished all of us in about 2 hours. We were early morning people though so this helped
us get 2 extra attractions,,however we never did more than 4-5 things in a Park, (with break in between).

Is your own family physician onboard with you attempting this with your medical conditions?
I know the heat and humidity can be very hard on people with ehlers-danlos syndrome.

I would discuss your plans with the people who know your family the best (your current home support care team) and have them help you with planning and realistic expectations for each person.
Park PECS schedules
Sensory Park and Travel Tool kits
Daily schedule visuals
Character interaction role playing
etc

I wonder about adding *new* (sitters,helpers) to your family vacation and how the kids would respond to this, especially since the environment is going to also be new.
Best wishes to you and your family

Mel

Thank you! I am most concerned about the youngest two with a sitter and wouldn't leave them without the oldest as well. The middle would be great one-on-one but if we wanted a date night alone I'd probably hire two sitters to be able to maintain one-on-one for that one and to keep the other three together.

The autistic child's care team all cheered when discussed this week and said they'd help prepare. My docs are all for anything that keeps us out and active and I've put in a request for a travel electric wheelchair. It's me who has the reservations. And rightly so as there are a lot of logistics to consider and plan out that couldn't be figured out on the fly. I'm at peace that it will take however long it will take if it will happen. And I'll wait for lower humidity times! I so appreciate the warning!

Park PECS schedules
Sensory Park and Travel Tool kits
Daily schedule visuals
Character interaction role playing
etc

Do you know of resources for these?

 

[bababear_50]

Thank you! I am most concerned about the youngest two with a sitter and wouldn't leave them without the oldest as well. The middle would be great one-on-one but if we wanted a date night alone I'd probably hire two sitters to be able to maintain one-on-one for that one and to keep the other three together.

The autistic child's care team all cheered when discussed this week and said they'd help prepare. My docs are all for anything that keeps us out and active and I've put in a request for a travel electric wheelchair. It's me who has the reservations. And rightly so as there are a lot of logistics to consider and plan out that couldn't be figured out on the fly. I'm at peace that it will take however long it will take if it will happen. And I'll wait for lower humidity times! I so appreciate the warning!


Do you know of resources for these?

Hi
Park PECS schedules
Sensory Park and Travel Tool kits
Daily schedule visuals
Character interaction role playing
etc
The above should be something tailored to each individual child's need by their support team
I would access them for help when planning.
Regards
Mel

 

[Skipadeedoodaa]

Hi
Park PECS schedules
Sensory Park and Travel Tool kits
Daily schedule visuals
Character interaction role playing
etc
The above should be something tailored to each individual child's need by their support team
I would access them for help when planning.
Regards
Mel

Thanks! I didn't know if someone had already collected images to select from to drop in.

 

[bababear_50]

Thanks! I didn't know if someone had already collected images to select from to drop in.

Hi
Here is a thread on the subject that may help
Here are some past threads that might be helpful (copied from post 3 of the disABILITIES FAQs thread)
https://www.disboards.com/threads/disney-pecs.3102471/https://www.pinterest.ca/pin/125326802110087925/https://www.thedibb.co.uk/forums/showthread.php?t=694508
Regards
Mel

 

[Hopefully]

You asked if Disney was possible for your family. If you truly want honest opinions I believe it could be possible, I do not think it is doable.
You described multiple significant disabilities for all, including the adults.
You talked about a recent trip in the Camper to a conference. You were only able to manage later in the day, every other day. You stated you were not able to accomplish anything outside of these every other days.
I understand this is your day to day life.
I understand wanting to do things and please your children.
I am empathetic to these needs of family members.
But realistically I believe for all reasons already stated by others, you should focus your goals and energy on a far less stressful experience.

 

[sweetpeama]

This is what I would recommend with the eventual goal of being able to someday do a 5-7 day trip at Disney staying at Fort Wilderness in a camp visiting the parks for half days. Warning it is a long term plan but I think this would make it more manageable to see how things go and revamp plans if necessary.

Within the next year ( so by end of June 2020) visit Morgan's Wonderland in San Antonio TX. This park was designed from the ground up for people with disabilities and even has free admission for those with disabilities. Your expenses would be travel to there, lodging (either a hotel or a camper), food, and maybe a little memory item to purchase for each person. There is also a water park connected with Morgan's Wonderland. Another thing that you can do in the San Antonio area is the Alamo as well as I believe there is a zoo and a downtown walking area with shops.

Set your next goal to by the end of June 2022 to take a 4 night Disney Cruise out of Port Canaveral. Fly or Drive depending on where you live into Orlando arriving 2 days prior to your cruise start date and spend those 2 days at Sea World concentrating on the shows and the Sesame Street area. Spend the day after your cruise at a Disney Resort or even a couple of resorts.

After this you should have a better idea of if your family can handle a longer Disney Trip or if you need to revamp to something along the lines of one parent takes one child along with paying for an aid either arranged closer to the park or someone to travel with you. I know you want to stay in your camper trailer and that one of their familiar aids traveling with you is not an option due to their not having a place for privacy during breaks. What about the option of renting a 2nd camper trailer from a vendor approved to set up the unit right at Fort Wilderness a few sites away that way they are close but still have their space. That combined with 1-2 people hired from kids night out might give you the flexibility that you need.

 

[Mrsjvb]

I didn't say they lash out violently at others, I said a meltdown (not lash out) can involve hitting and kicking which I wouldn't put/leave them in the position to be doing in a way that could hurt themselves or others.

if a CM disagrees with your version of what constitutes not being in a position to hurt anything one, you will be asked to leave. ADA will not protect your family. this includes escalated voices, belligerent tones of voice and yes, 'taboo' words. doesn't even need to be a swear word. if your family is a significant disruption to others, CM will get involved. if your kid has a Meltdown in line , blocking it so that no one can move forward past you, that is a major problem. if a meltdown means he won't get on the ride, that's a problem. if he freaks out while ON the ride.. HUGE problem in many instances. meltdown smack dab in the middle of the parade route? yeah. problem. can you honestly and objectively say you , by yourself with all your own personal issues, are able to handle any and all problems that may arise? without any assistance from Dad or the other kids? all who;le wrangling THEM as well?

Disney is a majorly stressful experience for perfectly healthy neurotypical people. some handle that stress better than others.

 

[gap2368]

if a CM disagrees with your version of what constitutes not being in a position to hurt anything one, you will be asked to leave. ADA will not protect your family. this includes escalated voices, belligerent tones of voice and yes, 'taboo' words. doesn't even need to be a swear word. if your family is a significant disruption to others, CM will get involved. if your kid has a Meltdown in line , blocking it so that no one can move forward past you, that is a major problem. if a meltdown means he won't get on the ride, that's a problem. if he freaks out while ON the ride.. HUGE problem in many instances. meltdown smack dab in the middle of the parade route? yeah. problem. can you honestly and objectively say you , by yourself with all your own personal issues, are able to handle any and all problems that may arise? without any assistance from Dad or the other kids? all who;le wrangling THEM as well?

Disney is a majorly stressful experience for perfectly healthy neurotypical people. some handle that stress better than others.

Just to go off if this I was walking into MK one day( I was at the turn style when my finger would not work beside me was the exit) and a little kids was screaming and mom was dragging him out while two severity guards was behind her mom was yelling he had a disability he did not mean to hit that guest the guard just said you need some time for your son to claim down. By this point I got my finger to to work and I walked it.

So yes they might ask someone to leave the park

 

[Tallis]

I didn't say they lash out violently at others, I said a meltdown (not lash out) can involve hitting and kicking which I wouldn't put/leave them in the position to be doing in a way that could hurt themselves or others.

While coprolalia is covered under ADA, I also never said my children curse, I said they can use taboo words and phrases. Not that it matters. Would you have your child with coprolalia literally never leave the house to go in stores, religious houses, school, the park, or other places in life for their first 20-odd years or more? Recreation and public access are human rights.

You did say that you are physically disabled, and had to be in an electric wheelchair, and that dad was unable to help. Therefore, I was under the impression that, in the absence of other adult helpers, there would be nobody to stop the children from hitting, kicking, throwing thing, or whatever was going on at the moment.

I wouldn't expect children to be locked down for 20 years or for any amount of time, but certainly kept out of situations that that exasperate their disabilities.

My own son has ASD and we didn't do Disney from the time he was 3 months old until he was 11, and was able to self regulate enough to handle it, and it would be more fun than nightmare for him. We did many vacations, but I was cautious about making sure they were as low stress as possible, and judged by what was appropriate for him at any given time. Just a change of routine and familiar places was stressful for him, so sure didn't want to add crowds, waiting, exhaustion, and extreme stimuli to that.

I still don't understand why you chose Fort Wilderness with one child with environmental allergies and another with insect anaphylaxis. With everything else you will be dealing with at Disney, this just seems like it could really put things over the edge. Is it the familiarity of the camper for the ASD child? I can understand it from that standpoint, but rigid diligence will be needed for the children with allergies. Keep in mind that it's against the rules to spray your site with anything. But nothing keeping you from spraying down the outside of your camper.

I know you think I'm being rude and not understanding. True, I don't understand your daily life or some of the disabilities you deal with. Even so, I would love nothing more than Disney to be accessible to your children, I'm just trying to be honest about what I hope would not be a giant waste of money for your family.

You seem to have been to quite a few other amusement parks, so perhaps this will go better than what your original post seems to indicate. I hope so.

 

[smartlabelprint]

I sadly say no, it sounds like a disaster waiting to happen. Our 2 kids are not neurotypical. In addition our challenges are poor executive function, including slow processing time. SPD, including visual overstimulation. Emotional dysregulation, impulsivity, and more...so much more. (We parents are neurotypical and have no disabilities).

We have been to Disneyland at least once a year for over a decade. Point being, we know our way around the parks, we know how to minimize wait times and have now figured out how to use DAS and Maxpass. Our kids have come 3 times. It’s SO.MUCH.WORK! Our favorite trips have come to be local hotel staycations. We will go again to Disneyland after we get a service dog (4 paws for ability-check them out!).

On each of these trips we have had *at least* one family member come (aunts, grandparents). We spend 2 hours in the parks twice a day. We stay at a hotel that provides breakfast and dinner (homewood suites).

Just my $.02.

I’d recommend taking the dress up toddler (preschooler?) with both parents and calling it a day.

 

[Elephantay]

If you don't think you can do a whole day at animal kingdom, you can plan a date at Sanaa. Its a restaurant that serves indian-inspired food at animal kindom lodge (its part of the hotel so you don't need a park ticket) that has big windows overlooking the Savannah, so you can see the animals while you eat.

SOME tables give you the view, others don't. We asked to wait for a table by a window and were denied, so I wouldn't count on it, sadly. But if you get one, they are great!

 

[Elephantay]

Okay, I've read every post...
I understand that you are used to amusement parks, and you have a child who you feel would love Disney.
A few considerations:

-Would Disney be your preferred choice for a vacation for every one of your children? Do they all like rides and have the ability to handle sensory overstimulation and fatigue? If not, I would maybe make a list of pros and cons for each child, to help you to be sure to focus on their individual needs in a detailed way ( you did highlight in your first post, but I think that this may help us to help you).

-I would recommend looking into renting a DVC property. You would be able to get a two bedroom unit with a full kitchen, have two bathrooms, privacy and quiet when someone needs it for chilling or a nap or early bed...Bay Lake would be my recommendation for a monorail resort, because you can take a short walk to the MK and avoid monorails and buses if you'd like. Several DVC properties would probably work for you, although the cost is much higher than FW.

-Unless there is an urgency to taking your trip, take your time. We took our son on his first trip when he was five, and while that was a good age, it was just as magical at eight. Might your kids be more able to cope and adjust and enjoy if they were a little older? I'm thinking that when they are younger, the stroller is a good option that you may not have when they are bigger, correct?

-Disney is so much more than theme parks. There are so many things to enjoy, everywhere you look and in hidden corners you need to seek out. Consider how your kids would react when told they cannot do something wonderful they see, because someone else in your family may need to leave. Would they be ok? I'm guessing that you've had to deal with this before on your outings, but you realize this trip would cost thousands and although cost may not determine your decisions, it may be a factor. Days full of upsets wouldn't be fun for anyone.

-Ideally I would suggest- divide and conquer! When someones having a hard time, they get 100% support and the attention they need while the other adult keeps the others going. That seems tricky in your case. Could you consider hiring someone to join you? Maybe one or two college kids ( interested in special needs!). They could get to know your family ahead of time and you could have hands on support with familiar, competent people. When I was in college I did respite care- do you have that for your family? One of my families had a teen daughter a little younger than I , and a little one with ASD. They paid for my entire trip, and we alternated days/care of their son. One day ( or for several hours) the parents had the little one, and we older girls did Disney. The next day, we had the child, and the parents went off on their own for awhile. It worked perfectly! We all had a wonderful trip. But this was 4 adults for one ( tricky, yes) kid. I could see something like this being a huge help for your family. They could stay in your space with you, or you could get them another room and arrange meet up times and a schedule. Just know that if they are not in your resort, they could not help or join you at the pool.