Trip Report: MNSSHP w/Autism - Nearly a Nightmare

maburke

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Joined
Mar 20, 2002
Messages
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I read the entire MNSSHP thread; I thought we were ready. My two boys have autism, the older one severe & nonverbal, but the challenge in these situations is the younger one (DS9), who can talk, but is easily overstimulated, and not always predictable about it. He had been talking about MNSSHP for a month, and I got reports from school the whole week before we left that he was not able to concentrate on schoolwork because of it. So he was excited, but I guess that's not always good.

We got to the park about 4:30, after taking it easy (I thought) during the day, but I think being out at the pool might have been too much sun. We rushed to dinner at the Plaza for 4:40, and changed into costumes while we waited for our table. (I had thought our ressies were 4:50, so we didn't have time to get the stroller or GAC before dinner.) DS9 wouldn't eat much (makes me crazy that so few places have chicken nuggets; I work on his eating habits at home, I promise, but grilled chicken just won't do when he's under stress), and kept talking about going on the Buzz ride. So DH left with him to do that while I waited 20 minutes for our check. DD5 was dressed as Ariel, so I asked at the Plaza check-in whether Ariel was in her Grotto for the party. One CM wasn't sure, but another seemed certain that she would be there all night.

We then caught up with the other two and tried to do a few rides, but DS9 was starting to get antsy. He said the music (playing in all the speakers) was too loud. By now it was nearly 7. We headed toward Ariel's Grotto, where we found that Ariel was gone and would NOT be out for the party. The dance party was starting with Donald and Daisy, but they were not doing autographs, which is what my DD5 wanted, so we decided to go to the front of the park and get the GAC and the stroller (which we'd heard here would be free), and which DS9 was clearly going to need. We were disappointed to find that strollers were NOT free. ($31 for a double that I hadn't intended to spend!) Then we went to get our GAC at city hall.

*** Allow me to state here (for my friends that followed a link from other boards) that a GAC is a card that shows accommodations that my sons need for their disabilities. Ours states that we need an alternative waiting area, if available, because my son will melt down in lines of even 10 or 15 minutes. So, for example, we went to Peter Pan, which had about a 10 minute wait, and were allowed to wait in what I think was the Fast Pass entrance (which was not being used), and just wait there until some friends we were riding with came up through the regular line. Then we just joined them. Same wait time, but without the moving crowd of people to set him off, and to be just as upset by him. More details can be found at the DISabilities FAQ. ***

Well, the wait for the GAC was worse than any other line that night. It was a perfect illustration of why he needs an alternative wait area (there was none at city hall, and the rule is that the person needing the card must be with you). I got to the desk, and he was crying and screaming and flopping to the floor with such force that I was afraid I would dislocate his shoulder by holding his hand. (You know, the way a 3 or 4 year old does, except this kid is 9.) But if I didn't hold onto him tightly, he'd do a runner to who knows where.

After I got the GAC, my husband suggested that he just take him back to the hotel. I suggested that we just try to find someplace quiet and calm him down. The only place I could think of was the first aid station/nursing mothers room, so that's where we went. The CMs there were WONDERFUL. They let us stay for an hour, found us earplugs (which he tried, but wouldn't stay in), and just generally were supportive.

At 8:30, he finally agreed to try ONE trick-or-treat station, and then we would go back to the hotel. So I thought we would try Mad Hatter, since that would be a walkway with several stations. That worked out pretty well, once we crossed Main Street just ahead of the parade! He sat in the stroller and wouldn't hold up the bucket; he asked me to get the candy for him. He was then willing to go on a few rides, like Small World and Peter Pan, and, as he is terrified of fireworks (we knew that), DH kept him on Winnie the Pooh during Hallowishes. Fortunately, no-one was waiting during the fireworks, so the CMs just let him go around twice until it was over. However, if anyone else wants advice on this, I would say that the fireworks are shooting off from all around the castle, including, it seems, from right above Winnie the Pooh, so that was not an ideal place to be. (Pirates might have been the best place.) But since we were there at the time, we just had to get him inside anywhere we could. We continued slowly through Fantasyland and Liberty Square, where my DH took DS12 on HM while I walked the other two through some Trick or Treat stations and along the parade from a bit of a distance ("No parade! No parade!"). We did Aladdin, and he seemed to like that, though throughout the whole evening he frequently said, "Let's get going! Let's get going!" and "Can we go back to the hotel room now?" We managed to just take one thing at a time, saying things like, "Okay, we'll do Aladdin's Carpets, and then we'll see how you feel."

We met a few characters, but could not do any of the ones with lines. My DD5 had brought along her Jane costume, so she changed into that and one of the highlights of the evening was meeting the real Jane. She kept counting how many people were dressed as Minnie (including me), but she was the only Jane we saw. Also the only other one the real Jane saw, and she had a wonderful interaction with her, saying that she looked even prettier than herself. It's little things like this that make me so grateful -- poor DD's experiences are so limited sometimes by her older brothers. Just sharing the double stroller with DS9 was very hard. We also met Tarzan, but he was a bit too good at the acting and not too great with being sensitive to a shy girl -- DD kept hugging Terk and wouldn't really go near Tarzan!

So, we managed to stay nearly the whole time, but missed out on a lot of things that I would have liked to do, like the special photos. (We only got a Photopass at our last stop to see Jesse & Bullseye -- guess I'll be getting a refund of that $100 I pre-paid!) But I have learned our lesson -- stick to early mornings, low-crowd times, and never do these high-stakes events where we pay a lot for just one visit. It can just too easily go really, really, wrong.

If I can answer questions for anyone, just ask.
 
I am so sorry you had such a rough time. I hate that Autism can be so unpredictable.

I'm sorry you were told that the strollers are free. The only people who can get free strollers are CM and their guests. I'm sure that was a huge disappointment.

Has the rest of your trip been ok, or did you guys only do MNSSHP?
 
Some people on the MNSSHP thread said strollers were free at the party a few years back, but I guess they stopped doing that. A discount would have been nice, though -- $31 for a max of 5 hours?

We did the next evening at Epcot for the F&W festival, and it wasn't much better. It was just a long weekend trip, and DH was working in the mornings. (We thought it would be so nice to join him as he had a conference there the whole week. WRONG!)

Thanks for the sympathy. At least we learned something, and we'll certainly keep going to WDW!
 
I'm so sorry to hear that you had such a rough evening, especially at a party where you have to pay extra. That makes it hurt so much more.

I've unfortunately learned the hard way that even at WDW we have to stick fairly close to our normal schedule. That means that the person in my family (me of course, the family martyr not to mention pack mule but I digress) keeps having to miss the fireworks and night time shows and parades. For our Christmas trip, I've paid for TourGuide Mike so hopefully by following his plans (they just make so much sense and have great breaks built into the plans so MAYBE......), I'm hoping that we'll actually be able to do them this year. I've also learned the hard way that I need to make my dinner ADRs for slightly EARLIER than our usual dining time since it takes extra time to get your food when you have food allergies (though it's sooooo worth the wait; I'm not complaining in any way, just noting that it needs to be taken into consideration).

I've also learned the hard way to be flexible and be prepared to leave the parks immediately at the first sign of a meltdown that is clearly not going to be diverted and not wait and see just what's going to happen. Bus rides with an autistic child that's having a meltdown is not a pretty sight. I'm just grateful that she's not voilent when she's having a meltdown. She just looks REALLY angry and sits as far away from us as possible (well, a full blown meltdown does end up with her doing some minor self-harm but luckily we've never gotten that far at WDW).

One more thing to note. Since you know that when your son gets over stimulated he becomes very self-limitting in his diet, you might want to try contact Brenda with Special Diets when planning your next trip. She can make a note of this on your ADRs. The form that she has you fill out has a space beside each ADR to write something about your son's particular needs. Crystal Palace does actually have chicken nuggets. I don't know if they have regular ones, but they do carry special allergy ones (Brenda sent me this information just yesterday). In 2008, a chef from CP even went to another restaurant nearby to get a hot dog for my daughter (the kid-friendly allergy options that day were very limited but I was still amazed that he would do that; it was probably easier than making something for her from scratch though). You can also ask your server about other options but it does help for the chefs to have a heads up that there could be special requests.

For anybody who followed this from Meghan's original link, I wouldn't suggest that everybody make these kinds of special dining requests. This does severely impact the rest of your party's dining experience as you wait on chefs and custom made food. With my family, even at buffets like CP, we all wait to eat while people at tables all around us go get their food then are practically finished eating before our family is brought the specially prepared food (we all wait so those with allergies are eating at the same time as those without). I'm advising this to Meghan as her party is already being impacted by her autistic son's self-limiting behaviour which is much different than just a picky child refusing to eat.

Thanks for sharing. You've certainly given a bunch of us more to consider in order for us to get our own vacations to go smoother.
 

I'm so sorry the experience was so stressful.

Our kids are so different and as stated before, Autism is so unpredictable.

We took our son with autism last year to the party when he was 8. He loved it but we have to do what he wants to do. He doesn't like standing in line for candy. He doesn't like waiting to see any of the shows.

He likes the fireworks but hates the sound - so he will wear the earplugs.

We just have to go with the flow of what he feels comfortable with. It's probably a little easier when we don't have other young children that want to do other stuff.

(((Hugs)))
 
I am also sorry that it did not worked out as you planned. At least you had some nice moments like Jane and your daughter. Thank you for sharing your experience. My wife and I went to MNSSHP by ourselves this year to get a good sense for our son and how it is. It is also nice to know that you can go to first aid if you need a place to calm down.
 
I just want to offer you a hug and a bit of understanding. My 6yo has what I consider fairly high functioning autism, yet Disney is an ultimate test. There is no motivation to stand in a line to ride an anxiety-inducing unpredictable ride (even something mild like Peter Pan is scary to a kid who is oversensitive and doesn't know whats coming around the next corner). When we "do" disney its with a year pass over several visits and includes a lot of resort time. We also have dietary limitations and center around which restaurants offer chicken nuggets, bananas and chocolate chip cookies. Mine hates fireworks also...we watch them from a resort or from the monorail if at all.

Thank you for your post, I can only imagine that if we were to try one of these events we would meet the same end. I hope you can salvage some good memories from your trip!
 
Thanks for the hugs. It does help to know your kids' limitations, like NO fireworks, under any circumstances. We can't even talk about them. When we were in Disneyland on the 4th of July with my sister, she took her kids to DL to see the special fireworks, while we went to CA to go on Soarin'. DS9 (7 at the time) kept saying "NO fireworks! NO fireworks!" and I promised him no fireworks. And what do they show at the end of Soarin'? The fireworks at Disneyland!! Aaakkkk!!!

I was worried that my DH would say we'd never do Disney again, but he said that our 12-day trip planned for next May should be much better, since we can come and go as we please, with much more flexibility and no sense of urgency. So I'm feeling better.
 
After reading the title I expected a “nightmare”, for engaging in a challenging situations my perception is that you did a great job of enjoying as much of it as practical. Stressful, certainly, but for a first time it sounds like you did OK, I have a well-adapted Aspergers child and I am not sure as a first time it would have been much easier.

It is funny for all the challenges when I ask my DS about WDW it is almost always the “magical” things that he remembers

Each visit gets easier and not having the special events will make it a lot easier.

bookwormde
 
I read the entire MNSSHP thread; I thought we were ready. My two boys have autism, the older one severe & nonverbal, but the challenge in these situations is the younger one (DS9), who can talk, but is easily overstimulated, and not always predictable about it. He had been talking about MNSSHP for a month, and I got reports from school the whole week before we left that he was not able to concentrate on schoolwork because of it. So he was excited, but I guess that's not always good.

We got to the park about 4:30, after taking it easy (I thought) during the day, but I think being out at the pool might have been too much sun. We rushed to dinner at the Plaza for 4:40, and changed into costumes while we waited for our table. (I had thought our ressies were 4:50, so we didn't have time to get the stroller or GAC before dinner.) DS9 wouldn't eat much (makes me crazy that so few places have chicken nuggets; I work on his eating habits at home, I promise, but grilled chicken just won't do when he's under stress), and kept talking about going on the Buzz ride. So DH left with him to do that while I waited 20 minutes for our check. DD5 was dressed as Ariel, so I asked at the Plaza check-in whether Ariel was in her Grotto for the party. One CM wasn't sure, but another seemed certain that she would be there all night.

We then caught up with the other two and tried to do a few rides, but DS9 was starting to get antsy. He said the music (playing in all the speakers) was too loud. By now it was nearly 7. We headed toward Ariel's Grotto, where we found that Ariel was gone and would NOT be out for the party. The dance party was starting with Donald and Daisy, but they were not doing autographs, which is what my DD5 wanted, so we decided to go to the front of the park and get the GAC and the stroller (which we'd heard here would be free), and which DS9 was clearly going to need. We were disappointed to find that strollers were NOT free. ($31 for a double that I hadn't intended to spend!) Then we went to get our GAC at city hall.

*** Allow me to state here (for my friends that followed a link from other boards) that a GAC is a card that shows accommodations that my sons need for their disabilities. Ours states that we need an alternative waiting area, if available, because my son will melt down in lines of even 10 or 15 minutes. So, for example, we went to Peter Pan, which had about a 10 minute wait, and were allowed to wait in what I think was the Fast Pass entrance (which was not being used), and just wait there until some friends we were riding with came up through the regular line. Then we just joined them. Same wait time, but without the moving crowd of people to set him off, and to be just as upset by him. More details can be found at the DISabilities FAQ. ***

Well, the wait for the GAC was worse than any other line that night. It was a perfect illustration of why he needs an alternative wait area (there was none at city hall, and the rule is that the person needing the card must be with you). I got to the desk, and he was crying and screaming and flopping to the floor with such force that I was afraid I would dislocate his shoulder by holding his hand. (You know, the way a 3 or 4 year old does, except this kid is 9.) But if I didn't hold onto him tightly, he'd do a runner to who knows where.

After I got the GAC, my husband suggested that he just take him back to the hotel. I suggested that we just try to find someplace quiet and calm him down. The only place I could think of was the first aid station/nursing mothers room, so that's where we went. The CMs there were WONDERFUL. They let us stay for an hour, found us earplugs (which he tried, but wouldn't stay in), and just generally were supportive.

At 8:30, he finally agreed to try ONE trick-or-treat station, and then we would go back to the hotel. So I thought we would try Mad Hatter, since that would be a walkway with several stations. That worked out pretty well, once we crossed Main Street just ahead of the parade! He sat in the stroller and wouldn't hold up the bucket; he asked me to get the candy for him. He was then willing to go on a few rides, like Small World and Peter Pan, and, as he is terrified of fireworks (we knew that), DH kept him on Winnie the Pooh during Hallowishes. Fortunately, no-one was waiting during the fireworks, so the CMs just let him go around twice until it was over. However, if anyone else wants advice on this, I would say that the fireworks are shooting off from all around the castle, including, it seems, from right above Winnie the Pooh, so that was not an ideal place to be. (Pirates might have been the best place.) But since we were there at the time, we just had to get him inside anywhere we could. We continued slowly through Fantasyland and Liberty Square, where my DH took DS12 on HM while I walked the other two through some Trick or Treat stations and along the parade from a bit of a distance ("No parade! No parade!"). We did Aladdin, and he seemed to like that, though throughout the whole evening he frequently said, "Let's get going! Let's get going!" and "Can we go back to the hotel room now?" We managed to just take one thing at a time, saying things like, "Okay, we'll do Aladdin's Carpets, and then we'll see how you feel."

We met a few characters, but could not do any of the ones with lines. My DD5 had brought along her Jane costume, so she changed into that and one of the highlights of the evening was meeting the real Jane. She kept counting how many people were dressed as Minnie (including me), but she was the only Jane we saw. Also the only other one the real Jane saw, and she had a wonderful interaction with her, saying that she looked even prettier than herself. It's little things like this that make me so grateful -- poor DD's experiences are so limited sometimes by her older brothers. Just sharing the double stroller with DS9 was very hard. We also met Tarzan, but he was a bit too good at the acting and not too great with being sensitive to a shy girl -- DD kept hugging Terk and wouldn't really go near Tarzan!

So, we managed to stay nearly the whole time, but missed out on a lot of things that I would have liked to do, like the special photos. (We only got a Photopass at our last stop to see Jesse & Bullseye -- guess I'll be getting a refund of that $100 I pre-paid!) But I have learned our lesson -- stick to early mornings, low-crowd times, and never do these high-stakes events where we pay a lot for just one visit. It can just too easily go really, really, wrong.

If I can answer questions for anyone, just ask.

I'm sorry you had difficulties; if I can offer you some pointers re: what worked for us, and see if it helps on a future trip.
1. Chose a Tuesday in early September - there were more cast members than guests that night.

2. Arrive a little later- yes, you can get in at 4, but that's a lot of time for something to go a bit amiss.

3. Check the menus where you'll be dining (of course you can talk to Brenda also) this will tell you if the rest. you're considering serves food you will like/eat.

4. Carry ear protectors at all times (we have the big construction worker ones and they have been a lifesaver anywhere we go).

5. watch the parade on youtube, so your child knows what to expect.

6. create a schedule that clearly identifies what you're planning to do when

7. consider bringing/renting a special needs stroller. The ones from OSR are great, you sit back in them w/ a big canopy that really feels like a nest.

8. make sure kids are well fed and well rested (because if either thing is off for my DD, all heck will surely break loose)

This may not in the end have made a difference, but I can tell you that last year's MNSSHP was honestly one of the two major highlights of our trip, and my DD surprised me by actually staying for the fireworks. She of course kept her sunglasses and ear protectors on, but I have wonderful memories of her spinning to the music of hallowishes... she loved them. I don't share to rub salt in, but to let you know it honestly can be better. It's so hard with our kiddos because they are so unpredictable, but I find that the older DD gets, the more in tune with her I get, and that (sometimes) can make it easier.

ETA: fwiw, I think y'all are really in tune with the needs of your kiddos, and did a great job adapting and making the experience special for them. Ask your DS in a few weeks what he thought of the party- he might surprise you. I think there are things that you would have loved to do and couldn't... but some of those can be planned for next time, and some are just things that will always go by the wayside... I really do think you did an awesome job adapting.
 
4. Carry ear protectors at all times (we have the big construction worker ones and they have been a lifesaver anywhere we go).

Those sound great! Where did you get them?

Thanks for the support.

P.S. I tried to pm you, but your box is full. I see you're in Austin. Do you know anything about the HALO-Soma clinic there? We're going to be visiting at the end of the month.
 
Sorry, I cleaned out my box so it should be ok; the ear protectors are available at sporting goods and hunting stores. You can get them on lline, but I liked that my kids were able to try them on. There are decibel ratings on the tags, our kids have 31 db reduction level. My DS picked red and black ones and calls them his Mickey ears; DD's are pink (the only color as far as she's concerned.) They are awesome because not only do they do a heck of a job at reducing noice- esp. booming or screeching ones, they give for my kids at least just the right amount of pressure, without having something jammed into your ears- my kids won't wear earplugs, and they fall out anyway.

ETA: nope, never heard of the clinic- what do they do?
 
You did a *great* job as Mom that night- both being sensitive to your sons and doing the very best that you could to keep them comfortable, and by offering your daughter the chance to have some special moments. I am sorry things didn't go as planned. I'm an adult without any sensitivities and I am *always* overwhelmed by the crowds at MNSSHP. It truly exhausts me just to maneuver my w/c through that many people in relative darkness, worry about where I'll find a spot to see the parade ( since I can access very few rides- the parade and Hallowishes is all I get for my money). When I return to the resort I notice that I'd never realized how tense I was til I can finally relax. Sounds like you made the best out of a rough situation and are to be commended!! Thanks for sharing your experience.---Kathy
 
I feel you!
We went Sept 29 to the party. We brought our own MacLaren Major though for DS and he was allowed to use it as a wheelchair and we had the FP waiting area as well as disabled entrance where he could ride without getting out of stroller - like Small World (it would not have been possible to do Disney without his stroller though so I understand not only for flight or fight issues but for his 'cocoon') and we actually did not wait on the lines. We missed a few rides and some he decided to do at 11pm (!)all of a sudden - after taking him to the Poohs Play Area where there was nobody around he seemed to calm down and get a second wind or something. He took off during the parade though because I yelled excitedly when I saw the gravediggers and he was standing up stimming so should have kept him in said stroller (lesson learned Mom) he did NOT like that. The fireworks he did well with but with his ears covered because it was a total 360 and he actually likes to see them after years of working on it. He was adamant that we wait in every candy line and luckily they moved really fast. He didn't do the dance parties but his sister DD4 did while he ate some candy (!)
During the villians show before the parade he needed the bathroom and suffered one meltdown but it may have just been overwhelming for him.
I did really enjoy the party, I think we all did. If I had not been overly prepared it would have gone horribly wrong (and we certainly had issues).
I would like to do it again but it is a lot of $$. DD4 did a few character meets with MIL but DS does NOT do them at ALL. Luckily the time we went to see Tarzan etc. the lines were VERY short because he could not have waited much longer even with me keeping him amused with bubbles and we brought some fiddly light up toys that saved the day.
We did eat at the Plaza ADR at 5:15 (got GAC FIRST though before we did anything 4:30pm) and he only wanted fruit and fries (so that is what he ate - hey whatever works and besides it WAS his birthday!) and we got him Cake too and they sang to him which actually worked out this time.
I dunno, I love Disney and we did the MK fully the day before so really tried to focus on the party when we were there, but would also like to take a day when I can go with DD alone and see all the characters and ride her daredevils rides (DS is a no-no on those) and pretty her up like the princess she loves to be and see Ariel and Tinkerbell etc. I don't mean to sound bad here but I know we tend to deal with her brother and attemopt to follow his lead at Disney so much that sometimes she has to take a back seat. She rolls with it though and we all end up having a good time I just know that if my hubby had been there instead of deployed we would have split up more often and done more with each of them. Next time! Thanks for letting me vent:dance3:! LOL!
And God Bless!
 
When were you there for MNSSHP? I'm just curious. My fiance and I would like to go to WDW during the Food and Wine festival one year, and if we could go during MNSSHP too, that would be great, but I'm not sure the lines will be insanely long all the time. After a long day in the parks, I need to sit down frequently because of my knees, so I'm not sure a huge crowd would be the best for me.
 














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