Here right now. have the GAC ... Life is still h*ll. can Disney help??

[ppony]

This is our second trip using a GAC for our severely autistic son. This is the first time though he is having a whole new set of "problems". . Not only have we not done more than 3 rides a day because he now will NOT leave his stroller, but he isn't able to go more that 3 hours tops in this heat and humidity. We've been letting him sleep and call the shots on when we go to a park because we've been faced w/ massive meltdowns unless he gets enough sleep. We do go back to the park for an hour or 2 after the sun goes behind the trees, but he still is having huge meltdowns , particularly when we pass ANY ligt selling cart. It's his trigger can Disney do anything to help us get h out of the sun and heat as much as possible? My GAC right now is just for his stroller but I'm not sure what if anything they can do and I hoped you experts might know.

The trip has been miserable. People are staring at us when he melts down and when things fall off our pack mule (AKA stroller) almost moone has lifted a finger to help. Not that they HAVE to, but I've been surprised at how rude and unfriendly people have been. A few kind souls have, but most just stand around me and stare. it's been horrible. And you wouldn't believe how much we've spent in 4 days on light up toys. Yes, we're giving in more now to keep everyone happy, but its unbelievably out of hand and he's got the scrapes and bruises to prove it. So do we. Lots of bites, scratches and hits.

 

[ppony]

Oh, and I should mention... he won't wear hats or tolerate a stroller canopy. That's been really bad.

 

[goofieslonglostsis]

Very little Disney can di about sun/heat. Most of it is out of their control, moving around within the parks etc. While most of the few rides not covered can offer shaded waiting with.proper gac, that will be off too little help for the most time spent in sun.

Think of options like umbrella or cooling vest etc. Latter could've be adjusted to his liking if having sensitivity issues and you are handt enough. Tried icecream strategy yet? Keeping

 

[goofieslonglostsis]

Dang phone. Was saying that keeping hydrated is big and easily overlooked thinking one is fine. Also cooling from within, neck and head help best for general cooling.

And big thing; seriously lower expectations. I know, but it is what it is. Anything else will just leave you even more frustrated. Dont go for hours or rides, but hout or minutes. No rides is ok too if that means less frustration for all involved.

 

[LockShockBarrel]

I don't see what else Disney could do for you. They have no control over heat and humidity and it's really your responsibility to keep cool you know? I don't mean that in a mean way.

As far as others not stopping to help, I wouldn't say that's out of rudeness. They have no idea what's going on so how are they to know what's going on and if their interfering would be welcomed or rebuffed.

This probably comes across jerky but I just mean it from an outsiders out of few. When things are stressful it's hard to look at them objectively.

 

[ppony]

Thanks goofyslonglostsis. I had a feeling that was the case. I WISH he'd eat cold things, but no go on that one. We've been giving him cold water, juice and occasionally pop(at his insistence) but he won't drink slushies or eat ice cream or Popsicles. sensory issues as tou suspected. All he's eaten on this trip is the 8 dry (uncookd)cheeseburger Hamber Helper single servings, a few Cheerios cereal bars , a hand full of fruit loops and a truckload of fries. I'm thrilled that Disney has made most of the question covered. That has helped tremendously. I'm interest in this vest. He probably won't wear it as we could even get him to wear a jacket all last winter. (take a look at where I live for a tip on how big if an issue that was.eek!! But we try anything and everything.

And trp, you're right. Expectations are waaaaaay lowered. As you said, it is what it is. Thankfully my older son hasn't complained at ALL about that.

 

[goofieslonglostsis]

Fwiw, see your intentions are well meant, LSB

 

[ppony]

I don't see what else Disney could do for you. They have no control over heat and humidity and it's really your responsibility to keep cool you know? I don't mean that in a mean way.

As far as others not stopping to help, I wouldn't say that's out of rudeness. They have no idea what's going on so how are they to know what's going on and if their interfering would be welcomed or rebuffed.

This probably comes across jerky but I just mean it from an outsiders out of few. When things are stressful it's hard to look at them objectively.

You are right in that its really hard to be objective when you eyes are filled w/ tears and your stroller is dumping over as you struggle to keep you son from bolting and he's biting, scratching and hitting you and all you feel is eyes on you as you can see a dozen bodies in a circle around you.

 

[goofieslonglostsis]

Has he hot a fav clothing? Not helping now perhaps but might be worth turning an exact replica info coolingclothing. Could be light or heavy depending on likes.

Tried loads of swimming yet?

Know what it can be like. Also here, had stroke 2 weekse ago and since out

 

[goofieslonglostsis]

Argh phone. Anyway, being out an hour is much so no parks and need to jeep face out of sun which is interesting with needing one hand to steer powerchair and still some residu weakness on other half.

This shouldve been a farewell trip, but clearly no such thing

 

[canopynut66]

on the lite up toys have you tried to pretend you bought another one and give that to him? now that would not work with my nephew as he a counter.. counts everything he is also autistic. he also will not keep on a hat or does not want anything over his head. as for people who stare you just have to do what you have to do as it is what it is with your son. and since I found out I had MS several yearas ago and had to start using a EVC I just smile at the rude ones and say a prayer that "they that stare are never in this chair". and then also you will never see those people again. so try and have fun. you might try ice packs for his head if he will leave them on.

 

[goofieslonglostsis]

By now I might try to murder a phone, but you know what? It is what it is sometimes. Accepting and going from there makes it always a lot easier.


Good luck

 

[SueM in MN]

I'd suggest you go back to Guest Relations and explain the issues you are having. No one can tell you exactly what will happen at each attraction because each has different things available. It is also possible that an accommodation that is available on one visit to an attraction may not be the next time you return.

If you have a smartphone, there are wait time apps for iPhones and Android. Those can help you to be in the quietest areas with the shortest waits.
Also, visit http://www.undercovertourist.com/planning/when-to-visit.html where you will be able to find cowd planning calendars for the rest of your stay. You want to avoid the 'red' parks as much as possible. Those will be busiest, which increases wait times and also makes it more likely you will encounter more frustrated, upset people who are more likely to react negatively to your child.

There won't be a lot they can do for heat, humidity and sun - most lines are shaded and a lot of your sun/heat exposure will be out of lines anyway.

I noticed you are letting him sleep - but doing that is getting you to the parks at the hottest time when the sun is brightest. The earlier you can get to the park, the shorter the waits will be. Even during Spring break, it's possible to get all the Fantasyland rides done with very short waits - less than 15 minutes.
So, you may be better off going early and not going back.

For light up toys - you could find them anywhere, but the largest concentration will be along parade or night show areas. If you have enough people in your party, you may be able to use some of them as 'human screens'. My DD is drawn to candy and water fountains - she seems to have radar for finding them. The 'human screen' has helped us a lot with that.

As far as refusing to get out of the stroller, if he feels safe there and just feels there is too much stimulation, he may refuse to get out.
Some kids who don't like a stroller canopy might be OK with an umbrella held above them or something they can pull over - like a lightweight towel. The thing they don't like about the canopy is that it seems to stiff and too close.

 

[ppony]

I DO appreciate your responses and understand the way they were meant. it IS our responsibility to cool off and our choice as to when we visit. We just had no idea he would be like this. We never have done anything like this in heat before. We just wanted to try food & wine and this reaction fr him didn't even occur to me. Thanks. I just had to ask yanno. I could think of what they could do, but I didn't even know about the GAC the first trip w/ him where it was a huge wake up call and then on our DCL cruise that followed a few park days, that I'd spend almost the whole cruise, including meals in my room. It was a very lonely time for me. lonely and a BIG learning experience. Thanks to DIS for learning about the GAC. Could do a thing w/o it.

 

[goofieslonglostsis]

What about splitting up for some moments? Not perfect by far but that way both of you van do food and wine, eldest can get some special time, both of you have a care"free" moment and son van focus on quite, relaxed, colder options at the resort for instance.

 

[ppony]

on the lite up toys have you tried to pretend you bought another one and give that to him? now that would not work with my nephew as he a counter.. counts everything he is also autistic. he also will not keep on a hat or does not want anything over his head. as for people who stare you just have to do what you have to do as it is what it is with your son. and since I found out I had MS several yearas ago and had to start using a EVC I just smile at the rude ones and say a prayer that "they that stare are never in this chair". and then also you will never see those people again. so try and have fun. you might try ice packs for his head if he will leave them on.

We haven't but that's a great idea. Well have to figure out a way to get the CM to play along. There isn't a light up toy on property we don't own 2 order of now. Weird that we were so surprised by how fast the money went!!! Holy buckets!!!! But yes, he is a counter. He has to have 5 band aids on each leg, just because... he has to. No boo boos under them. He just has to have them. And the magic number has been 2 this trip. He has to have 2 of everything with him. It's not enough to know he has one or 2 back in the hotel or even at home. but, we have enough if all things now, we might be able to pull it off.
I wish we could use an umbrella but sadly, he destroyed the last one we tried to do that with. Ice packs. Haven't tried that. It's worth a shot.

I'm so glad you guys understand. It can feel do lonely sometimes as most people just don't, and I don't expect th to. I just wish they wouldn't judge.

Thank you again!!


Oh, PS
I've happily been able to fill out a few fanatic cards already for CMs that went way above and beyond for us when we had big meltdowns. Thank heavens for the CMs.

 

[ppony]

By now I might try to murder a phone, but you know what? It is what it is sometimes. Accepting and going from there makes it always a lot easier.


Good luck

HUGS
I'm with you. I'm tapping out these replies on my wittle phone here and it's "fun" . I'm getting to the rest of you guys!! I have to go sit at an outlet to recharge and type.

Hate not having the emoticons at my fingertips on this phone.

 

[ttintagel]

In EPCOT, you could go hang out in the Land pavilion a while.

Do you think he would like shows,like the Hall of Presidents, Carousel of Progress, or Country Bear Jamboree? That would be a place to sit out of the sun and heat. Maybe a ride on the Monorail, railroad, or riverboat would be soothing. (I would have suggested the PeopleMover, but I'm not sure if you can get a stroller up there.)

Would it be helpful for everyone to carry a couple of items so there's less stuff to fall off the stroller?

 

[SueM in MN]

In EPCOT, you could go hang out in the Land pavilion a while.

Do you think he would like shows,like the Hall of Presidents, Carousel of Progress, or Country Bear Jamboree? That would be a place to sit out of the sun and heat. Maybe a ride on the Monorail, railroad, or riverboat would be soothing. (I would have suggested the PeopleMover, but I'm not sure if you can get a stroller up there.)

Would it be helpful for everyone to carry a couple of items so there's less stuff to fall off the stroller?

That used to be a favorite of ours when our DD was small enough to carry up there - no strollers or wheelchairs can go up there.

 

[ppony]

Has he hot a fav clothing? Not helping now perhaps but might be worth turning an exact replica info coolingclothing. Could be light or heavy depending on likes.

Tried loads of swimming yet?

Know what it can be like. Also here, had stroke 2 weekse ago and since out

I'll look into that cooling clothing for later. Thank you!

As for swimming, we stayed at the BCV and he loved the sand and at least sitting in the water. We're at AKV now and he won't leave his stroller. he thought the splash pad at DTD was funny, but again, wanted nothing to do w/ getting wet there. He's so unpredictable w/ water. He can love it or hate it. It's so hard to know, so we just try again and again. He HATES his head getting wet ( makes hair washing fun) , so it's on thing at a time. Sidebar: We did bring dry shampoo this time tho. Haven't tried it yet.


He does like the boats we have discovered. Not a lot of chances to use them , but we're trying to work them in.