Am I crazy?

[have2getaway]

My son has high functioning autism and my dh and I decided to take him to Disney because he has become obsessed with Micky & Minnie. We just started him on medication and it is helping some, but I am really starting to get nervous that it will be too much for him. I tried to take him to the movies today and he wouldn't even go in the theater. He started sobbing and was obviously terrified to even go in. He has some fear of crowds, but it is primarily dark places that really set him off. Most of the rides at Disney are in dark theaters. Should we simply cancel our trip? Any thoughts or suggestions? I know that he will love toontown and we were hoping that he would enjoy some character breakfasts. We figured if the parks were a total flop, we could just stay at the resort in the pool or try a water park. I also know he will love mini golf. I know this is all about him and I just need to go with an open mind, but it's so hard to see your child suffer. I am just so sad for him.

If we do decide to still go, I know we will need the gac for security. I am now starting to stress about obtaining one because I don't even know where to begin with his issues. Sometimes he is completely fine, and other times he is in a state of sheer panic. If we do get him to go into a theater, we will need to be certain we can get him out quickly should he have a panic attack. Should I tell the Disney reps this? The same is true with lines of people. It is usually not about having to wait that bothers him, but being around crowds of people.

Please help! What should we do?

 

[lewdyan1]

First things first...take a deep breath! There are many people here who can share their experiences, but personally, Disney does great with my son who has General Anxiety Disorder!

One suggestion. Have you tried using social stories to help prepare him? I have seen these make a huge difference for children with Autism.

 

[have2getaway]

No, we haven't. We have used social stories with going to a restaurant and that worked well. Thanks, I guess I will try that. Our son likes to make lots of lists so he will know what comes next. I suppose it may be as simple as making a list of what will happen for him. His big anxiety right now is fire drills. If he even sees a drill hanging in a room, he panics. That is what happened at the movies, he saw the red drill and it was all over! There was no getting him in the room for the show. He had it in his head that there was going to be a drill.

We have talked about showing him videos and preparing him more. I sometimes forget about the social stories. Thanks for the tip--I'll try that!

 

[lewdyan1]

No, we haven't. We have used social stories with going to a restaurant and that worked well. Thanks, I guess I will try that. Our son likes to make lots of lists so he will know what comes next. I suppose it may be as simple as making a list of what will happen for him. His big anxiety right now is fire drills. If he even sees a drill hanging in a room, he panics. That is what happened at the movies, he saw the red drill and it was all over! There was no getting him in the room for the show. He had it in his head that there was going to be a drill.

We have talked about showing him videos and preparing him more. I sometimes forget about the social stories. Thanks for the tip--I'll try that!

I would do a social story for the fire drill. Show the drill in different locations and that it's okay, it's doesn't mean it will sound because it's there and show him in that place and that everything is alright.

When are you going?

 

[have2getaway]

We're going Sept. 16th - 23rd for the Free Dining. We thought this might be a time when the parks would not be very crowded.

 

[JennyDrake]

Hi! I will not pretend to understand all of the issues you face, but I have braod expereince with children with "handicap" (ugh, hate that word) issues from moderate to extreme, including autism.

One "dumb" question I would ask up front is, 'Have you taken your son to any other amusement park or county fair? And if, so, how did he do?" I know this is somewhat apples Vs. oranges, btu I have seen anumber of folks dismayed or even devastated when their Disney trip did not work out. If you have Chuckee Cheese, that is one way to get started before spending hundreds upon hundreds at WDW.

I was with a group that took 4, 9 year olds with varying degrees of austism to an amusement park. It was a disaster. We should have considered that NONE of these kids had ever been anywhere even CLOSE to that environment and it was simply too much. Ditto for Chuckee Cheese.

All I'm suggesting is IF you can generate a couple of "trial runs" less expensive and closer to home, itmight help both you and your son to be better prepared.

 

[have2getaway]

Yes, we have down amuzement parks with rides--and he LOVED them. He especially loves water parks and water slides. We have down chuck e cheese also several times and it has been hit or miss. One time the mouse scared him to death and the other time, he was fine. Both times he loved the playground. I know there will be things there to do that he'll enjoy, but I need to make sure to remind myself that it might not be the things that I want him to enjoy. It may sound crazy, but sometimes that's hard. You want your child to enjoy things that you enjoyed as a child.

 

[Juliah]

Hi have2getaway,

It would be so wonderful if your DS could meet (or even just see in person) Mickey and Minnie!

When our twin DDs were two, one was nuts about Minnie, and that was our inspiration for our first trip to WDW. It was part disaster (her twin got pneumonia) and part memories of a lifetime (like the look on the face of the Minnie-lover the first time she saw her and said with astonishment, "That's Minnie Mouse!") We decided because of DD getting sick we would do a do-over trip the next year; after that, we were hooked and have been back about a dozen times. The girls are now 19.

Those first few years, we had to skip a lot with the girls. They have cp and were (especially one of them) anxious about the dark and loud noises. Much as DD loved Minnie, it was several years before she wanted to get near the characters. The girls were happy spotting them from afar, eventually warming up to getting close. Perhaps you could start with seeing a parade or show with Mickey in it or by watching other people greeting characters and see how your son reacts. At a character meal, you could probably mention to the characters' escort that you're not sure how your son will react and ask if the characters could approach him slowly and not come up behind him. I've seen the characters stop at a distance and wave, gauging how a small, shy-looking child would respond. BTW, I think Chef Mickey's is one of the louder character meals, with everyone stopping to wave napkins, dance (and sing??) I remember the character meals at the Polynesian, GF, LTT in MK, and BC being quieter, though you'd have to see if his favorite characters are at any of those.

Another thing that might help is picking and choosing where you go to meet characters in the parks. Some places have longer lines than others, and the time of day matters--getting to the parks early would help. Toontown might get slower in the evening, but I'm not sure how late the characters are there. Perhaps if you stop for a few moments at Guest Services at the front of each park, they could guide you on the least crowded places in the parks for meet and greets.

Yes, there are a lot of rides and shows in the dark, but there are some that are not. In MK, some that I can think of are Dumbo, Aladdin, Goofy's Barn Stormer, the train, the parade, the show in front of the castle, Belle's story time, the carousel, Small World, and the tea cups. The monorail is also a really cool ride. AK has the Kali River water ride--I don't think there's a dark part. Also, the safari, both the kids' rides in Dinoland, the trails, the bird show, the Lion King show, and the train to the petting area.

You mentioned lists. Would it help any if DS helped plan out an itinerary of which rides to ride in what order? Of course, this could backfire if you had to change the order because of a long line at one of the rides.

Now that the girls are older, they are more comfortable with the dark and noise, but now we have to skip a lot because it's hard to transfer the girls onto rides since they're bigger. Once in a while when we're in the parks, I get a little jealous or sad that DDs can't do everything they would like to do at WDW, but we've pretty much made peace with doing Disney on their terms. If you're comfortable with not seeing everything and with backing off when things are too stressful--and it sounds like you are--I think chances are good you will have a wonderful, memorable trip. The resorts are so much more peaceful than the parks, and I've often thought one could have a wonderful trip to WDW without ever setting foot in the parks, so if you have to retreat to your resort, well, there could be worse things!

Hope this helps some and that, if you go, you have an absolutely wonderful time.

 

[GretchGraham]

Before I took my low-functioning autistic daughter to Disney World, I asked the clinic director where she was receiving services for any advice she could provide regarding coping with schedule changes, eating out, etc. She told me that her suggestion was that we not go at all. She said that had never had a family who took their child for a week who did not say they wanted to come home early because the trip was just "too much" for their child.

Well, as my Mama would say, I'm really hard headed. Like you, I wanted my daughter to have some of the joy I experienced as a child and I knew there were at least some parts of the trip she would enjoy. I researched like crazy, planned like crazy, and ended up spending 6 nights in a villa at Old Key West. I chose OKW because I thought the spacious rooms, whirlpool tub, and full kitchen would best suit my daughter's needs. I think the resort was a wise selection. We ate the majority of our meals in the room that first year and my daughter took a dip in what she began to think of as her personal pool each night. The living room provided plenty of room for her therapy ball, and she would bounce on it each morning and afternoon to her heart's content.

We hit each park, not in commando mode, but with the idea that we would do what we could and what she would enjoy. I started off slowly with the rides and found that she didn't like the shows at all. She didn't like every ride, but she developed a deep affection for the Magic Carpets of Aladdin. I'm sure the ride CMs think I'm nuts as we rode it one non-busy day no less than twelve times in a row. But, she loved it; squealing at the top of her lungs, hands flapping, and an open-mouth grin.

Our first character encounter, she was not interested at all. I didn't push it, it was her trip, I wanted her to do what she wanted. So, imagine my surprise when the next afternoon, leaving Animal Kingdom, she ran up to Pluto who was at the exit in front of the Christmas Tree. She hugged him hard around the nose and laughed and smiled the whole time. I was in tears and it felt like my heart was going to explode. After that, she really enjoyed most of the costumed characters.

We took pictures of her on the rides, with the characters, etc. and put them in a small photo album for her after we returned home. I cannot tell you how many times I have seen her pick up the album and look through it. She also began to carry around my first guidebook, tapping the front cover with the picture of Mickey Mouse.

We all have wonderful memories of that first trip and we now go every year. She still loves it just as much. We cannot do everything we may want to, but we do what we can and enjoy what we do.

 

[Nascia]

To get our DS (4 yr w/ SID, possibly Aspergers/ Social Phobia) ready for our May trip we ordered the free planning video from Disney. We watched it several times a day, everyday for a few months , his choosing. He loved it and got a good idea about what we would be doing there and how the character interactions would go. He's actually still watching to "get ready" for our December trip.

On his first trip he was terrified to get near the characters (although we could see how much he wanted to). This year he had a "competition" with his older brother to see who could get the most autographs and pictures. He thrives on winning and will do so much more to win than he ever would just because. We use this technique at OT to get him to try new things quite often.

Our recent trip was soooo theraputic for him. We traveled in the offseason and will be for our next trip as well. The CM's were great and very accomadating. We did get and use the GAC and he tried soo many more things and had a great time because of it. We tried to wait in line for a few things, but he quickly became anxious/ nervous in the lines and would decide that he wanted to "try it later." Then later we would use the GAC and he would have no problem riding, it was all the people with him in line that overwhelmed him. By the end of our trip he was talking to CM's, interacting with characters and even tried (somewhat) pin trading. He walked through the sand barefoot and played in the pool/ slides at Typhoon Lagoon . Unthinkable a few months earlier and he was doing it like it was nothing, aside from stopping to brush the sand off his feet every few steps. His progress is part of the reason why we are returning in December. We did take it slow and had plenty of downtime for him as well. Relax, have fun and Good Luck.

 

[winniethepoohsmom]

Pick up a Disney travel book to find out what the rides and attractions are about before you go. We stay in Disney so we can split up if my autistic son is getting overwhelmed with things and take him for a swim at the hotel. We also rent a car so we don't need to deal with the lines and crowds on the bus. Our son enjoys MK and AK not so much EP and MGM (no rides that interest him) He also loves typhoon lagoon with the the wave pool at the beach and the lazy river. But you won't know these things unless you try. I did think the post that talked about eating in the room was good. We always ate breakfast in the room and drove to the parks to avoid to much stimulation to early in the day. And mid-day breaks are a good thing whether its relaxing by the pool or in the room. Whatever works for you. If he is happy then you're happy! Good Luck!!

 

[have2getaway]

Thank you so much to everyone for all the feedback and support. I started crying reading through the posts because I realize that I am truly not alone (even though it seems so much of the time). We have ordered the vacation planning guide and we plan to use it to prepare him. How soon should we start showing it? Our trip is in mid-September. I have thought about staying at Old Key West, but I also thought that my son does really well with outdoor play when the weather is warm. I expected we would be at the pool a lot and possibly might try some playgrounds (which would thrill him)! This plan should work when it is nice, but does anyone have any suggestions for rainy days. Is there an indoor playground (or playplace) in Orlando that anyone knows of? What about Disney--do they have an indoor place for kids to go and play when the weather is bad?

I am starting to realize that I may have to make some adjustments to our plans, including where we stay. Perhaps, limit the character meals and try for quiet restaurants. He can even wait well if the atmosphere is quiet. What are the quietest restaurants on Disney--if any? I have one character meal with Minnie right of on day one at Cape Mae & I figured I would use this as a test and if I had to make adjustments to our dining plans after that. We don't plan to rent a car, but I suppose if we determine that eating out is going to be a problem, we will need to adjust for this as well.

Good luck to everyone on their upcoming trips. You have all been an inspiration to me to move forward with our plan to go and make the best of it!

 

[welovedis]

have2-
Sounds like you've received some good advice for those who have been there, done that. Social stories really do work wonders and if they've been successful in the past I'd try again.

We've done them for a number of different issues that have come up in the parks, ie crowding in lines, waiting your turn, dark rides and loud noises. Also, small foam earplugs may work but you'd want to try that home first to see if he's sensitive to them. My DS has Asperger's and can wait online for the most part just fine. However, we will probably be getting a GAC for the upcoming trip because it will be really hot & he is taking meds that make him sensitive to the sun so he needs to wait in the shade. Plus the crowds may be too much for him so we'll also ask to have a quieter area to wait.

We don't do character meals, (he's 9) because he's not as interested in them as he used to be. I don't know the age of your child, but some kids really like it and others don't. We tend not to do buffet meals because I have food allergies and many character meals are buffet (or family) style.

We do eat at nice restaurants that are quieter or have quiet corners. You can always have that noted on your ADR when you make your dining arrangements that you have an autistic child and would prefer a quieter or private area if at all possible. It may not be accomodated all the time, but it would not hurt to ask.

Also, you mentioned that you are going during the free dining offering, while that is not as busy of a time as the holidays or peak summer travel, keep it mind that it will still be busy. You may want to be making your ADRs as soon as you can to accomodate your child's schedule.

GL!

 

[Juliah]

Correction to my post--I said the Lion King show at AK was not in the dark. It wasn't when we went to AK when it first opened, but apparently it is enclosed now and gets dark. Sorry.

Re: playgrounds. Did you know there is a Winnie the Pooh playground in MK (seems to be for pretty small kids--don't know how old your son is) and a Honey I Shrunk the Kids playground in D-MGM? There's also a dig area in Dinoland in AK. Can't think of an indoor playground at Disney--people usually just put on ponchos and keep going in the rain. There's a place at DTD called Disney Quest that has video games and other experiences, but that might be too much sensory stuff for him. If he's ok with water, he might like playing in the fountains in the sidewalk in at Epcot and DTD (some people pack swimming trunks). There is also mini golf on property.

If you like the idea of a suite like OKW but want to be more where the action is, you could try BC Villas or WL Villas. I don't think any of the villas are quite as big as OKW, though. One nice thing about BC Villas is access to the big Stormalong Bay pool at BC.

 

[have2getaway]

Karen:

Thanks for the tip about dining. I didn't realize that we could request a quiet spot. Any suggestions for quieter restaurants?

We have tried the ear plugs and they don't work, but what we have found is if we bring a small set of head phones for extreme situations, he can tune out the noise that is bothering him. I have made many ADR's already, but I am concerned that some (Chef Mickey's) might need to be changed due to noise levels. Here is what we have planned so far: Boma, CRT, Cape Mae for Minnie (we plan to do the Leo/June Character Breakfast because he likes Little Einsteins & CP later in the week, but only if Cape Mae goes well), Concourse Steakhouse, 1900 Park Fare, & Coral Reef. We scheduled a lot of buffets because he does not like to wait in restaurants and he fixates about having to wait. He also does not like noise and too many people. We once ate at East Side Marios and had to leave because the Cow Bell the rand during a "Happy Birthday" song upset him so much. Is Kona quiet?
We are most stressed about meals, because this is his worst time so I would be most grateful for any ideas or suggestions.

By the way, was the Gac difficult to get. My son is high functioning and many people are shocked when we first tell them he has autism. It is a blessing that he is high functioning, but at times it can be more stressful trying to explain to someone.

Juliah:

Thanks for the information about the playgrounds. Yes, I did know about the Pooh one, but not the others. He LOVES mini golf so I know that will definitely be an option. Thanks for the tip about Epcot fountains too--He loves spray jets and fountains. For this reason, I almost changed my res. to Pop for the spray jets, but he also LOVES buzz & woody.

We decided on All Star Movies due to the cost primarily. We are trying to go on a budget. I considered renting DVC points, but we also liked the idea of the free dining. Of course, if eating out is a disaster, that will be all for nothing. Should we put more money into staying somewhere and just eat in more? I didn't want to have to worry about fixing meals while I was on vacation, but if it really would help our trip that much, I guess I will have to consider it.

Thanks a bunch!
Jennifer

 

[Ali]

I'm going to share my concerns with you - from my own experiences with my panic prone, routine needing, extremely picky eater, sensitive to smells, and enclosed space hating ASD DS5.

First off, we ALWAYS have a car so we don't have to get on and off the buses, we don't have to wait in the lines in the sun at the AS hotels for the buses, and we don't have to smell the "smelly" people who are standing on top of us on the crowded buses on the 30 minute drive between the parks and the hotel. We can also say "do you need to go to the car to calm down" and actually have that work! Do you sense a theme here? Get a car!

Second - Food issues are big for us - we have to bring all of his food with us in a large cooler or he won't eat while we are there. I wish we could afford a villa but we go for quantity over high quality so we alwas do values. Do you have those issues?

Third - He hated the characters at first. We go to Disney almost every month since we live so close, so he has had a long long time to get adjusted to them. He likes to hug them now. Don't push anything and don't be crushed if you have a character meal and he wants to leave.

Fourth - The shows and rides... we don't go on very many rides, and see very few shows. We increase the number every few trips, and he adds in rides that are outside, like the tea cups and the barnstormer, but I can't get him inside Mickey's Phillharmagic for my life. We went inside once and went back outside about 2 minutes later when I couldn't calm him down. Do not try to do a commando plan and you should be okWe added in the Pooh ride last week and it was ok. He was proud of himself and said it was only a short ride.

Fifth - the playgrounds are fun for the kids who are used to being pushed around by other kids (not trying to hurt, but physical contact is a common occurance), kids who like being splashed with water, and kids who can handle chaos in action with parents who don't typically step in to correct behaviors that are troubling. My son had problems this last trip because he is not ok with other kids touching him or splashing him. First time we had this issue, probably because he was tired and hot.

Last - try to watch for melt down signals and have a cool calming place in mind to go to if necessary. We have used the Hall of Presidents, TTA, The Noodle Station, and our stroller for that a lot!


Good luck!
Alicia

 

[have2getaway]

Ali:

You are not the first person to suggest the car and I think, for all the reasons you mentioned, this is one area where we will adjust and go for the car. I know exactly what you are saying about going to the car to calm down. We do that now and it only makes sense that we will want one when we go for that purpose.

I know that the character meals might be a disaster. I have several scheduled, but if the first one doesn't work, I will simply replan. I am preparing myself that this may happen.

We have some food issues with our son, but he is overall a good eater. He LOVES chicken tenders with ketchup and I noticed that this is served nearly everywhere so I think we will be OK. I plan to do take out for breakfast as much as possible and possibly for lunch. Either my husband or I will pick up the food and bring it back to our room. I didn't think you were allowed to bring in a cooler. I have a backpack that is also a cooler so I can bring this in? That would be great in terms of having snacks (fruit, cool drinks) that might help at least delay a meltdown.

We don't intend to do the parks commando. My husband and I went to Disney on our honeymoon and did that & never again! We have seen all that we want to see (except for a couple things) and this is all really all about our son. I need to prepare myself that he won't go into Mickey's Philharmonic because I can see exactly what you described happening. I am trying to get excited about the things I know he will enjoy: the pool, mini golf, train, etc. Did your son enjoy Hall of Presidents or did you just go to the lobby. My husband and I enjoy this show, but I didn't think my son would sit through it. What is TTA?

My biggest concern is eating at restaurants. Since we are on the dining plan TS meals are unavoidable. I tried to schedule buffets, but from what I heard, I am now concerned that some of them may be too loud & too stimulating. I would welcome any restaurant tips from anyone that has found a nice quiet place to take their child for a meal.

Thanks again,
Jennifer

 

[Cheshire Figment]

I didn't think you were allowed to bring in a cooler. I have a backpack that is also a cooler so I can bring this in?

At the four major parks you are allowed to bring in a "small, soft-sided cooler" while at the water parks any type/size of cooler is allowed as long as you can move it.

The only other specific restrictions is nothing in glass (Starbucks, Snapple, pickles, salsa for example) and no alcoholic beverages no matter how packed.

 

[mlwear]

So much good advice here.
We waited until DS with moderate to HF autism was 7 to go to Disney. Thought he wouldn't be able to handle all the stimulation. Oh, how I regret it now. Last year was our first year. He was SO happy. I really didn't have high expectations of it being the time of his life, just hoped he would enjoy some things and we'd get through it. Our older DS really wanted to go. This was just our experience and everyone's will be different, but he did so much better than I ever dreamed possible. I have the best pictures of him absolutely filled with joy. His eyes had a sparkle that I hadn't seen since he was a baby. Most vacations are near disaster after day 3 because of routine change. Not at Disney. I don't know what it was. (pixiedust I guess -- or a great deal of vestibular stimulation, which IMO for MY child I THINK made a difference). Not sure how many times he rode Dumbo and the tea cups.
You are willing to be flexible. That's good. He loves the pool (so does DS), you can retreat there, if the day becomes frazzled.
I kept with me a "sensory diet" kit, which I did have to use from time to time. I had his brush, chewy tube (designed for oral stim.), earplugs, squishy balls/fidget toys, etc. When I noticed his anxiety building, I took him away from the crowd and brushed him a bit, gave him deep pressure and used whatever else he needed to calm down. By the end of the trip, he was wearing his chewy tube as necklace (so he could use it when he needed it as it was more often). So, it wasn't like everything was perfect, but that's not going to happen anyway. We just deal with things the best we can.
As far as restaurants go...I ALWAYS ask for a table at the side and prefer a booth. We'll wait rather than sit at a table in the middle. He couldn't tolerate that. But, he did well with the side tables in most places. DH loves Teppenyaki (sp) (all those places around home, too). I would give that one careful thought. I hate taking DS there. I am so afraid he will impulsively throw himself on the grill, plus sharing a table with others...
As far as character TS, DS did very well at Ohana breakfast. It isn't a buffet. (Buffets are kind of a pain for us. So much milling around and we don't get to eat because we have to help the kids so much,etc.). We sat at the side and the characters came around several times and there was plenty of personal space.
As long as you can go with the flow, I think you should go.

 

[scottsod]

dont know what rides you did before but i would stay away from

bugs life dinasour snow white h-m all 2 dark and scary

as far as eating

sci fi at mgm is dark but verry verry quiet there a huge screen showing 50 horror clips nothing scarry just campy u can sit a car or a picnic table in the back

liberty tree tavern in mk was nice not to dark and quiter as far as charcter meals go its not a buffet but all u can eat family style thanksgiving dinner
with characters

at epcot le celier wich is my fav for food is a little upscale but quiet in the back

get the gac card! and use it all the time even for character meets and busses if u dont get a car just tell them his needs at when u get it dont worry about diagnosis or papers just he cant do this or that

and use it i dont subscribe to what other say about using it sparingly and feel bad about not waiting in some lines our kids need it if hes doing good this 1/2 hour use it anyway u can get in 2 or 3 rides for the other 1/2 a day hes not up to it and is in the room

dont be afraid to talk to a cm with a charcter u can stand on the side and see how your soon reacts and if he want to go and meet thm after the next kid is done also works in toon town to meet all the characters though the back entrance

we have drivin and rode busses we like both but busses do get super crowded and people are on top of you depends on what your son can stand wy son meet nice people on busses/monorail even had nice little girls share or give him some of there light up park toys made friends and had fun but if its 2 much just drive

and if u run into a cm who dosnt let u use the card or understand his needs just polietly ask for someone else we had many new or uninformed cms i just said but we have used this card to do this like this about 50 times this is what we were told to do by guest services they just ask another cm maybe a boss and always say ok sorry mostly busses and some chacters

have fun

scott