Asked to Prove you are ASD or turned away?

[bookwormde]

One thing to remember is that GAC is just a tool and methodology the WDW uses to assist individuals with disabilities and to comply with ADA.
Just because there is not standard GAC method to accommodate you at an attraction, does to mean that WDW is somehow not required to. Well trained or creative CMs almost always find a way to help, even if it is not a perfect solution. I think all that any of us would be asking for is some level of understating and concern, and the CMs be creative or at least open to solutions that meets the needs. There is no one size fits all and never will be.

 

[SueM in MN]

Your child was not allowed to remain in the stroller on the bus for their own safety. Most "regular" strollers are not made with tiedowns. It is a DOT reg that strollers must be folded to board a bus.

That is correct.
It is not safe to use the tiedown system on a stroller that was not designed for transport.
NO regular strollers are designed for transport and only some special needs strollers are. The special needs strollers that are ‘transport ready’ are designed to have loops welded or bolted onto sturdy parts of the frame. They are also designed so that if they fold, they would not fold in a dangerous way to someone riding in it during an accident.

The frame of strollers that are not designed for transport can bend or pull apart just from the tension of the tiedown straps. They have big metal hooks that attach to the mobility device and the straps are then tightened so they are tight. Without being tight, the stroller will just tip over during turns, etc. (even something as big and heavy as an ECV can tip if not tied down well).
I do know of several people who got the bus driver to tie their stroller down, which bent the stroller and meant they could not use it for the rest of their trip.

Even with the wheelchairs that are designed more like strollers, I would check very carefully to find sturdy metal parts of the wheelchair frame that are welded together and do not move. Some (especially those with tilt capability), do not have any frame areas that hooks could be safely attached to.

All this GAC CM stuff is making me embarrassed to ask for a GAC card when we go in Sept. I don't look particularly unhealthy but I do have issues. I use a ECV (4 back surgeries) and I have something really stupid that I have had my whole life since I was 4.

When I went to Dis last time I just asked for a GAC for mobility issue. Don't remember using it but a few times and usually had to wait longer than main line due to it being off peak time but that is fine by me. I thought that GAC card covered everything as far as AE was concerned. I couldn't ride a few rides because the CM wanted me to ride my ECV through the line (TSM). We tried and I had to make every person behind me move so I could get out of that line. It was awful.

I have stress induced vase o vagel syncope (sp) and if I get the feeling of claustrophobia or too hot or pain (not all pain but I can't choose) or scared (panic attack), I will pass out and hit the floor and convulse. This is stupid and it doesn't scare me (other than the falling part, many goose eggs and cuts) because I know I am going to wake up and be OK, and honestly it doesn't hurt being "out" either but I know it's not good for me and scares the heck out of people around me.

I am embarrassed asking for a GAC card and if the CM treats me like I am lying I'll just die. I FEEL the need to explain WHY (willing to provide proof also)but I know they don't want to hear it (rules)....what to do, what to do?

As I've gotten older (50) I can tell when it's starting usually and know to lay down to prevent injury but hard to do in a queue.

I hate that so many people are cheating that they are making others like me feel bad for asking for one.

You may also want to look into the touring plans that I mentioned in an earlier post. That would help you to shorten your waits in line and could help in many ways more than a GAC would. Using Fastpasses also is very helpful.

Also, some attractions do have wheelchairs available if someone wants to switch from an ECV to a wheelchair or feels they are not able to walk the whole line. Explain that you have anxiety attacks related to the stress of maneuvering the ECV in line and ask at the entrance whether they have a wheelchair you can transfer to.
The important thing is to be polite, confident and clear about what you need.

Don't be embarrassed to ask for GAC. They are made for people who need them, and it is the ones who don't need them that should be embarrassed. Just tell the CM what your needs are - I don't think they can legally deny you if they have that accommodation. They can't give it to some people with needs and not to others with those needs because that would be discrimination. So go in, tell them your needs, and if there is any rudeness, complain to a manager. But really, if you know your needs and state them clearly, I doubt they will be anything but pleasant.

A lot is perception. If people feel they will be embarrassed, ridiculed or made uncomfortable before they go in, many will feel that way when they come out, even if the CM is very nice and helpful.
It may help to look at it like security screening at the airport. Some people feel
it is a tremendous hassle or, even worse, demeaning or a violation of their space (or even stronger terms). People who look at it that way will feel that is how the experience is.
e look at it as a necessary piece to get what we need (getting on the airplane). We give as much assistance and information as possible about DD (she can’t talk, she can understand. She can’t stand, she will try to help you by leaning forward if she can) to get it done as soon as possible.

The ADA does not require accommodation for every need - some people have needs that there is no accommodation for. The clearer you can be about what you need, the better chance they may be able to find something to fit. For many people, a significant amount of stress comes from worrying about what the accommodation offered for an attraction may be. That can change because of things you can’t see - like staffing, emergencies or the accommodation not being available.
But, be aware that in some cases, the best assistance is going to come from things like using touring plans and Fastpass, which will shorten your wait in line and will ensure the least number of people at an attraction. It is also consistent - because it is Mainstream, it is unlikely to change.

 

[justtobeme2]

Thanks all for your input. I will try to ask for what I need. I totally understand that Disney nor any establishment may not for whatever reason be able to offer everything I need. That's part of having a disability. I don't stress over having to miss out on some things as long as if what they do have works for me I am able to utilize it.

Last time we used Ridemaxx and that really helped. I am going to do that again. We will skip lots of things just because I can't ride them but the things I can ride I hope I can get a GAC just so I can get to the ride without and issue. lol trust me the people behind should want me to be able to utilize one also because if I "go out" they'll have a even longer wait..lol...

Some crazy times:
I have "gone out" when I took a drink of soda and it went down wrong and hurt, down I went. I woke up once from what must have been a heck of a dream (didn't remember it) got to the bathroom splashed water on my face, barely made it to the chair and woke up not sure how much later (definitely not asleep). In a line that took a long time at WM I left everything and made it as far as the bench up front then ....bloop! Funny after I come to I am much calmer and relaxed,well I am weak. Doc said it's from the BP drop. The thing is no one would ever know this about me unless they see it so I am one of those "hidden" disabilities.

I'm going to ask for a GAC, I am...if they don't give me one, we'll do the best I can! Still a bit nervous about asking though. Dishonest people ruin lots of things. I do believe you reap what you sow though so one day when they need something like this they'll understand.

 

[Nik's Mom]

Thanks all for your input. I will try to ask for what I need. I totally understand that Disney nor any establishment may not for whatever reason be able to offer everything I need. That's part of having a disability. I don't stress over having to miss out on some things as long as if what they do have works for me I am able to utilize it.

Last time we used Ridemaxx and that really helped. I am going to do that again. We will skip lots of things just because I can't ride them but the things I can ride I hope I can get a GAC just so I can get to the ride without and issue. lol trust me the people behind should want me to be able to utilize one also because if I "go out" they'll have a even longer wait..lol...

Some crazy times:
I have "gone out" when I took a drink of soda and it went down wrong and hurt, down I went. I woke up once from what must have been a heck of a dream (didn't remember it) got to the bathroom splashed water on my face, barely made it to the chair and woke up not sure how much later (definitely not asleep). In a line that took a long time at WM I left everything and made it as far as the bench up front then ....bloop! Funny after I come to I am much calmer and relaxed,well I am weak. Doc said it's from the BP drop. The thing is no one would ever know this about me unless they see it so I am one of those "hidden" disabilities.

I'm going to ask for a GAC, I am...if they don't give me one, we'll do the best I can! Still a bit nervous about asking though. Dishonest people ruin lots of things. I do believe you reap what you sow though so one day when they need something like this they'll understand.

I was really nervous about asking for a GAC for the first time. My sons were recently diagnosed, so it was all so new to me, and I was afraid to ask for what my boys needed. That first time, it was a bad experience. But it was because I did not articulate what my boys needs were. When we went on a future trip, I was more confident in explaining my needs, and it was probably very obvious that there was something wrong with my boys. One was scared and covering his ears and the other was nervously rocking back and forth. That cm was very kind. He really explained the GAC process and it was smooth sailing from there. Just be clear about what you need and you will be fine.

 

[dntd]

Your child was not allowed to remain in the stroller on the bus for their own safety. Most "regular" strollers are not made with tiedowns. It is a DOT reg that strollers must be folded to board a bus.

I was forced to fold the stroller before getting on the bus, I asked if I could sit then fold it as I was alone and I was tole no. Her other stroller is transport ready and has tie downs which we used this time.

 

[sarahkate60120]

It's better to have a dozen people get GAC's when they don;t need them, than to have one person not get one when he really does. There's no such thing as an abuse-proof system. All a crackdown does is make a few self-righteous people feel better.

Totally agree!

 

[utterrandomness]

Totally agree!

Me too. If they start cracking down on the people they think are faking, who is going to lose out? The people who really need them.

 

[livndisney]

I was forced to fold the stroller before getting on the bus, I asked if I could sit then fold it as I was alone and I was tole no. Her other stroller is transport ready and has tie downs which we used this time.

That is correct, the stroller must be folded to board the bus.

 

[goofieslonglostsis]

We do know that it is not Autism of Asperger's. I don't think she has a sensory problem, but I'm not closed to the idea... One of her little quirks is that nobody can figure out what sets her off. She is just perfectly happy, then panicky, violent and usually extremely sad. With my older son suddenly developing a number of food allergies and intolerances I've been reading about that so of course I suspect maybe it's a food issue. At least it's worth testing (why not rule more out?)
She seems to be unique to everybody too. One of the fun ones is that most people, when learning a skill, will gradually get better. She will suddenly jump forward, then regress for a few months. Then jump forward and regress for a while. It makes no sense whatsoever. I felt like I was crazy before she got to Kindergarten, but now I at least have the comfort that every year her teacher sits me down, shows me what seems to be happening and asks if this is what we see because she's never seen this before. (4th such conference was a few weeks ago)

As anyone ever considered you might not be looking at one thing, but perhaps 2 or more that might be blending or for instance overlapping?

If we go back over 32 years, my mom gave birth to a girl. That girl was what the GP called "it's a special child, a special one indeed". And that was simply it. Some -many- weird stuff going on, some noticable others "just" not the norm. Ranging from physical stuff (or as I simply came to the conclusion of being WorldClumbs and finding it a norm that things hurt) to emotional and behavioural. Esp. the latter wasn't always easy for anybody. I could go off at moments, nobody could predict. Sometimes we knew it would be a "trigger" but not why, other times it seemed to be totally out of nowhere.

Not until I was 20 did we know we were actually looking for anything! I was 24 before my GP had a lightbulb moment and decided to suspect a certain type of syndrome. Turns out not the right one, but right group and sure enough about a year later it was clear. OK, so the diagnoses was there. We knew what it was, something called Ehlers-Danlos Syndrome. OK, so you learn about it. It has so many aaaaaaaaaaaaaaaaah-moments. Why would I sit so weird as a baby, why move the way I did or refuse to do something? Why all the accidents?

But still; one person with a manual nobody knows where to find it or how to read it. Years go on. It's clear that with the eds came along something called postural orthostatic tachycardia syndrome. Simply put; my autonomic nervous system gives out at moments when it shouldn't. Some expected, some totally not. It explained more, including some behavioural but again; not all.

Forward to 2007. I run into yet another OT for yet another chairfitting, my first powerchair. She noticed something nobody noticed before. My senses are out of whack. Sure enough; sensory integration scr*wed up enough to out itself in problems like overreacting of emotions at times and momentarily "loosing all control" because of out of whack. Mostly overstimulation, but still not all can be linked to "ah, that triggered it". It's a mix of some caused by the eds and some of it being a problem of itsown that would be there with or without eds. To make it more interesting; both make eachother worse.

The latter was most difficult to find as I would keep hushhush about the emotional and behavioural stuff out of shame. And with only outing the physical effects that doesn't make it easier. It was almost literally out there like a stamp on my head. But, when not looking for a stamp on a head but elsewhere you will not see such a big stamp. The eds? It's still too little known in medical professionals and can take decades to diagnose, if at all. In at least 3 generations, I was the first to be diagnosed and the other three were found back because of me (hereditary). While very scarsely known, I was and am a textbook case of eds. Would be missed by hundreds of medical professionals. Not until I myself was faced with the wake up of multiple things going on it started to make more sense. Within no time we could place some other stuff also, thanks to some other secundairy diagnoses that can come along with the eds. Still, I don't always know why and what, esp. when it comes to what makes my head go "snap".

While "in the dark" about there being a cause for those moments I would appear to have periods of better and worse times. Why? Because I would try to be as "should be" and it would burst. Because other times physical problems worsening would also lower my tolerance level and more of those puzzle pieces that now make it logic but totally "lost the manual and let's try and fly a plane while at 30.000 feet without training" until I started to be able to make the links.


If not already done, the one message I want to sent you is to keep a totally open focus. Sometimes you are the "oddball out" that hits the jackpot against all odds. If al the logical odds come up empty handed, try the oddball. Perhaps there are multiple things going on. Perhaps it simply is impossible to make any sense (even if that is going to be that "package such and such is called this and will many times be impossible to find sense into why") as medical science is not there yet. Or she has not reached the age yet where that last all important puzzle piece comes available.

Hopefully you will find more answers rather soon than later. But never feel alone. I know it can be overwhelming at moments but you are NOT alone. For instance, did you know that of "just" those with chronic pain the majority will not find a diagnosis? We all know how common pain is. Let alone if we count up all those dealing with other physical, mental and whatever problem that might not fit current labels or simply haven't come across it (yet).

Having done years without the label (and that still comes without a manual and many more questions, like many labels do), I can say it is not an absolute black place. In the end finding quality of life is the most important. For each that will be different and it comes in the smallest to the biggest forms. Acceptance is a huge part of that. For/from oneself but also within the close community of loved ones. Building upon that, learning how to stay focussed on that and not let outside stop you in your tracks. If she has the skills and is aware of how others sometimes can react; for her obviously. But not in the least also for you. You're surviving and deserve living again. I know how far out there it can sound, but I am a firm believer that living is possible for all when that quality of life is back again. Anyway, I'm starting to yep way to much. Just started posted to tip about keeping an open eye to sometimes there being more than one "culprit".

Good luck!

 

[SueM in MN]

I'm going to close this thread at this time because I feel it has run its course.