asperger's:what you wish you had known before your trip

[saveaquarter]

I apologize in advance, this is going to get pretty long. Since I'm new to the board I thought it might help to let everyone know a little about my husband and myself. Thank you to those who helped with the mobility question I had, it gave us the help we needed!

My husband has Asperger's and is generally high functioning within his daily life and routine. We know what works for him, he schedules each day, and tends to do very well. This doesn't always stop the meltdowns, though. They're generally triggered by the unknown, stress, breaks in routine, and physical ailments like seizures. He also has synthenasia, meaning he hears colors, sees sound, etc. Coupled with his sensitivity to more ordinary stimulus, it's not hard for him to go into sensory overload.

He looks sick, like he has a constant flu, but appears otherwise "normal". His epilepsy causes ticks and twitches, as well as stuttering. He's incredibly oversensitive, and can't stand the thought of people staring at him because of these things. While most people are polite, and children are generally curious (which he does encourage, and is happy to answer their questions), we do encounter people from time to time who are downright cruel and mocking about it.

His need for order and sensitivity is both a curse and a blessing. While he gets overwhelmed easily, it also gives him an amazing gift with photography, which has helped him cope with things and earn a living.

He suffers from lupus, which was undiagnosed for quite some time, and it primarily attacks his nervous system. Having no insurance, he spent around 8 months having seizures several times daily and being bounced from doctor to doctor until he was able to find one willing to do the tests necessary to begin finding the problem. He still has seizures several times weekly. Sometimes, several times daily. His legs are affected by arthritis and neuropathy, and we have been told his mobility will be seriously affected at some point in the near future. As it stands, he'll most likely need a cane for daily use by the time our trip rolls around, and will need a wheelchair to get around the parks. He is anemic.

Add to all this stress that many families (us included) have gone through this year with the economy, including housing trouble and a slumping job market, and you can imagine how it has affected his need for order.

Then add that we found out we were having unexpected twins! That was the biggest shock of all, I think, but a very, very welcome one.

A friend of ours is taking us on this trip so my husband can get a break and go somewhere he has always wanted to revisit. Even though travelling with two infants will be a challenge in and of itself, we want to go as soon as possible.

Now that I've bored all of you to tears, I have a few questions. Thank you for staying with me. The plan thus far includes putting together a binder with our trip itinerary, with each day blocked out (we'll be doing the parks in the mornings, taking a break for the afternoon, and going back in the evening), as well as the alternate rain plan for each day. My questions are, for those of you who have made the trip with older children and adults with Aspergers, did you schedule things? What worked and what didn't? What kind of tips and hints can you give us? Are there things you wish you had known before you went? Areas to avoid? Quiet places for great photography opportunities?

 

[DisneyBrat]

Our middle son is an Aspie or as he likes to call him self an Asparagus. Justin did fine over all but rides that were dark,loud and scary would freak him out! He can't handle overly loud noises. Keep in mind turning the tv on drove him nuts until it warmed up and he couldn't hear the high pitch anymore. Your husband sounds like he is dealing with multiple stimulis and I hope he can learn to conquer his fears somewhat like Justin did. We always had a blast at Disneyworld! He even liked dancing with the Tribe dancers in Animal Kingdom. Afternoon naps I personally think that helped him too!!!

Good Luck!
Lew

 

[saveaquarter]

Our middle son is an Aspie or as he likes to call him self an Asparagus.

Asparagus! That is too funny! I'll have to try that out on my husband

Justin did fine over all but rides that were dark,loud and scary would freak him out! He can't handle overly loud noises. Keep in mind turning the tv on drove him nuts until it warmed up and he couldn't hear the high pitch anymore. Your husband sounds like he is dealing with multiple stimulis and I hope he can learn to conquer his fears somewhat like Justin did.

What bothers J most is the amber alert and emergency sounds on TV and the radio. Loud noises he is not prepared for he has a hard time with as well. He's been watching ride videos on youtube to prepare himself, knowing what's coming next is really what he needs. I know with each video he watches he's storing a mental checklist for that ride, and will be going over then again and again between now and August!

Were fireworks out of the question for you guys? We all want to take in a show, but the noise, especially with the crowd around us, may prove to be too much if we cant get a good enough spot.

 

[bookwormde]

Saveaquarter,

The biggest thing is to keep the “pace” at a comfortable level, If you are touring with another family do not be afraid to separate if your pace is not comfortable for them. I have a “binder” for every visit we take, but just keep it fore the “important” thing like reservations tickets, car rentals, dining info and so forth. The first time I went we have a plan for each day, other than having a general idea of which park we wanted to do it ended up being somewhat useless, I think this is because the parks are always different than what you expect, especially on your first visit.

If he can tolerate noise reduction headphones or earplugs they will help on the noisier rides and during fireworks. We have learned that it is better to stay back and have a little less desirable view that to put up with the discomfort or being in a crowded area, we make a game out of it, “lets find the area that no one else will think of”.

There are some good “decompression” areas in each park and if you dig through the threads you will find some discussion of them.

Being on site is a big plus, arriving early before the crowds get to bad (use EMH) and leaving mid day and relaxing at the resort (we like to swim and take mid day naps, I say it is for my children but I enjoy it also) then head back in the evening. Park hoppers are must so you are not “stuck” in the morning EMH park which can be crowded the rest of the day once everyone arrives

As for the variability of sensory issues, when not stressed or overtired both my DS and myself find WDW very enjoyable because it is so “visual”, I “see” through a mathematical/geometric/nature of matter filter which is very enjoyable at WDW, I always figure that a lot of the imaginieers we aspies, since the park “sit so well” with individual on the spectrum.

bookwormde

 

[DisneyBrat]

After I posted last night I thought about fireworks LOL Justin would hold his ears. In hindsight I would now use earplugs.

Do not go on Snow Whites ride!!! it is dark and just plain scary!!!! As an adult I thought WOW what were the imagineers thinking when they made this ride for little ones!

Personally I think he will be fine! Justin is very high functioning and we didn't have any meltdowns just a few cringes He would either hold his ears or would wait til we came off the ride.

I also commend you on taking such a great approach to helping your husband!!!! You are obviously one brave woman to go to WDW with babies and a hubby with asp..

If you need to ask me anymore questions please feel free

Lew

 

[saveaquarter]

The biggest thing is to keep the “pace” at a comfortable level, If you are touring with another family do not be afraid to separate if your pace is not comfortable for them. I have a “binder” for every visit we take, but just keep it fore the “important” thing like reservations tickets, car rentals, dining info and so forth. The first time I went we have a plan for each day, other than having a general idea of which park we wanted to do it ended up being somewhat useless, I think this is because the parks are always different than what you expect, especially on your first visit.

We're definitely going to take our time with this trip. All three of us grown ups going on it have been to WDW at least once before, and we're trying to keep our "scheduling" of each day limited to things like, leave for this park at this time, eat at this time, leave to go back to the hotel at this time. He can be very good at adapting, as long as he has some idea of what's coming at him.

If he can tolerate noise reduction headphones or earplugs they will help on the noisier rides and during fireworks. We have learned that it is better to stay back and have a little less desirable view that to put up with the discomfort or being in a crowded area, we make a game out of it, “lets find the area that no one else will think of”.

There are some good “decompression” areas in each park and if you dig through the threads you will find some discussion of them.

I love the idea of turning finding a viewing spot into a game. When he's having bad days, we generally use that to get him through the tasks he has zero interest in.

In a thread I posted last week someone mentioned that the first aid stations will allow people to stop in for a rest. He'll need breaks from the heat and moving around as well as time and space to decompress. I did notice on my last trip that in spite of the crowds, finding a quiet, out of the way corner is not as hard as it seems, as well.

Being on site is a big plus, arriving early before the crowds get to bad (use EMH) and leaving mid day and relaxing at the resort (we like to swim and take mid day naps, I say it is for my children but I enjoy it also) then head back in the evening. Park hoppers are must so you are not “stuck” in the morning EMH park which can be crowded the rest of the day once everyone arrives

As for the variability of sensory issues, when not stressed or overtired both my DS and myself find WDW very enjoyable because it is so “visual”, I “see” through a mathematical/geometric/nature of matter filter which is very enjoyable at WDW, I always figure that a lot of the imaginieers we aspies, since the park “sit so well” with individual on the spectrum.

I'm with you on enjoying the afternoon breaks probably more than J or the twins will! We do have parkhopper passes, we want to be able, should one park prove to be way too crowded, try another before heading back to the resort to wait for the evening to roll around.

It sounds like you see things the way my husband does! He's been channelling that into photography, and within a year of picking up the camera, has half a dozen awards under his belt and recently received press credentials for the US Senate! He doesn't think he's doing anything special, just capturing what he's seeing.

After I posted last night I thought about fireworks LOL Justin would hold his ears. In hindsight I would now use earplugs.

Do not go on Snow Whites ride!!! it is dark and just plain scary!!!! As an adult I thought WOW what were the imagineers thinking when they made this ride for little ones!

I think we're going to try earplugs, if he can handle them. If not, then we'll just have to watch from a distance!

He said the same thing about that Snow White ride the other day, we've all agreed we want nothing to do with it! I remember riding that when I was 6 and having nightmares for months.

Personally I think he will be fine! Justin is very high functioning and we didn't have any meltdowns just a few cringes He would either hold his ears or would wait til we came off the ride.

I also commend you on taking such a great approach to helping your husband!!!! You are obviously one brave woman to go to WDW with babies and a hubby with asp..

If you need to ask me anymore questions please feel free

Lew

I have high hopes for the trip too. My biggest concern is making sure that if he does have any trouble, we can guide him through things in a way that wont make him feel as though he's standing out or people are thinking him strange.

And believe me, I wouldn't be making this trip without another grown up along for the ride! I think we'll do very well, though. The babies will be young enough that my job with them will consist of keeping them fed and cool and NO CHASING, and I think the excitement of the trip will help keep J focused and on the ball while we're there.

Thank you for the great advice, guys! I really appreciate it.

 

[ireland_nicole]

I definitely second, or third, or whatever the idea of earplugs, or if he doesn't like them in his ears, the ear protectors used for hunting, construction, etc. WDW has lots of unexpected noises, and a little ear protection goes a long way. For the fireworks, I would recommend trying Illuminations first, it's definitely a bit quieter and can be less crowded (not getting out, mind you, but during the time you're viewing them.) Also consider viewing from the Poly beach. That might help too, you can still see them, but the noise isn't there. Also, at least for us, a very detailed schedule is an absolute life saver. I strongly suggest TGM or touringplans.com (or, since I'm a little OCD on planning, both...) a good plan is vital. It avoids long, crowded lines and prevents a lot of melt downs for us.

Congratulations on the babies!! Don't forget the baby centers, they're awesome! And a good place to rest for both of you; the first aid centers are also a good, air conditioned place to rest for a while.

 

[XYSRUS]

I fourth it...earplugs!

 

[JESW]

Wow! You are very, very brave to attempt Disney with all that! Going with twins a couple months old would be hard enough. Will your dh be bothered by all the noise babies make and how you have to work around their schedules?

I have a ds14 and an un-diagnosed by professionals, dh with Aspergers. Both are ok with WDW as they have been going for years - ds since he was 22 months old. Both my guys are pretty good with all the things in the park - the biggest problem we have is when ds has had ENOUGH and he wants to go back to the room. We have to schedule an early dinner every night and have lunch around 11:30. Ds & I are early risers so I make sure he gets something to eat right away or the crankies come in

Water calms ds down so we make sure we plan for pool or water park time every day. Taking a bath in the resort also helps - when he was younger it was not unusual for him to take 3 or 4 baths a day! Also getting enough sleep is very key for him. We also have a dd10 so most days we split up with dh taking ds back to the resort for some down time or even a nap while dd (typical kid) and I keep going.

August is also very hot and VERY humid and it doesn't take long before ds starts melting down so we make sure we get to the parks EARLY and get done what he wants to get done - it's usually right after lunch when he & dh go back to the resort.

A fun thing to do is get the Hidden Mickey's book and try to find them as you go around the parks. Maybe your dh would be interested in photographing them? My ds does well when he has a "mission" and one he loves is pin trading. Usually every trip he has a theme of pins he wants to find such as all the monorails or the hidden mickey pins. Pin trading has also helped him with interacting with others as social skills can be a big problem with Aspies. My ds also likes taking pictures, and one trip we took dd's Ken doll and we took his picture in various places at the parks - we all had a good time with that, except of course dh

Food is a BIG issue with ds as there is only a handful of things he will eat. One of the reasons why we bought dvc is so that we can feed him at the resort before we go out to dinner if we are going to a place he doesn't like. You can find the menus for all over Disney and I find that very helpful.

Ds does NOT like 3-D shows but will go in with us and not wear the glasses.

Good luck and I hope that you all have a really good time! I do know what it's like to constantly plan around both my boys and all their sensitivities. It has been great since dd has gotten old enough for the two of us to go off and have the fun that we can't have with the boys - they see no sense in things like riding Big Thunder Mountain over and over and over and..

jill

 

[saveaquarter]

Well! Looks like we'll be investing in some earplugs!

For the fireworks, I would recommend trying Illuminations first, it's definitely a bit quieter and can be less crowded (not getting out, mind you, but during the time you're viewing them.) Also consider viewing from the Poly beach. That might help too, you can still see them, but the noise isn't there. Also, at least for us, a very detailed schedule is an absolute life saver. I strongly suggest TGM or touringplans.com (or, since I'm a little OCD on planning, both...) a good plan is vital. It avoids long, crowded lines and prevents a lot of melt downs for us.

I didn't even think of viewing from Poly beach. We've discussed using fireworks times as a time to take advantage of the short ride lines, and catching glimpses in between, but that's a great idea.

As far as planning goes, we're going to plan out which park we're visiting on which day, the times we'll be there, and our meal plans, and then put together a somewhat loose plan of attack for each. He's been reading up on park strategies and already has our day at MGM planned.

Congratulations on the babies!! Don't forget the baby centers, they're awesome! And a good place to rest for both of you; the first aid centers are also a good, air conditioned place to rest for a while.

Thank you! Someone recommended the first aid centers to stop in and rest in another thread I posted and it's an awesome idea. We'll definitely be taking breaks on both, so he can decompress, I can nurse the twins, and we'll all get a break from the heat.

 

[SueM in MN]

I can only write a little right now, but wanted to add one good place to watch Illuminations from. First Aid and the Baby Care Center at Epcot are just off a bridge that leads from Test Track toward Mexico. If you stand on that bridge, you have a pretty good overview of all of World Showcase. You are not right along the water where everyone else is and it usually is not crowded there. In addition, if it gets too overwhelming, he can duck into the restroom or First Aid/Baby Care. That area is not usually really crowded with people leaving because it would be going out of the way to the exit. For all the parades and night shows, stay where you are and wait for 10-15 minutes before leaving. You will find most of the crowd has already left and your leaving will be much more pleasant.

Good luck on your trip and have fun.

 

[saveaquarter]

Wow! You are very, very brave to attempt Disney with all that! Going with twins a couple months old would be hard enough. Will your dh be bothered by all the noise babies make and how you have to work around their schedules?

I have a ds14 and an un-diagnosed by professionals, dh with Aspergers. Both are ok with WDW as they have been going for years - ds since he was 22 months old. Both my guys are pretty good with all the things in the park - the biggest problem we have is when ds has had ENOUGH and he wants to go back to the room. We have to schedule an early dinner every night and have lunch around 11:30. Ds & I are early risers so I make sure he gets something to eat right away or the crankies come in

Honestly, his reaction to the babies, not just the noise but the change they may cause in his routine, is a huge concern and a major source of stress for him. How did your husband handle it? Do you have any tips for me?

Water calms ds down so we make sure we plan for pool or water park time every day. Taking a bath in the resort also helps - when he was younger it was not unusual for him to take 3 or 4 baths a day! Also getting enough sleep is very key for him. We also have a dd10 so most days we split up with dh taking ds back to the resort for some down time or even a nap while dd (typical kid) and I keep going.

August is also very hot and VERY humid and it doesn't take long before ds starts melting down so we make sure we get to the parks EARLY and get done what he wants to get done - it's usually right after lunch when he & dh go back to the resort.

We're planning a very similar tactic. Parks in the mornings, breaks in the afternoons, and parks in the evening (especially with EMH!). I think leaving when the parks will be the hottest and most crowded will keep the week more than manageable for all of us.

A fun thing to do is get the Hidden Mickey's book and try to find them as you go around the parks. Maybe your dh would be interested in photographing them? My ds does well when he has a "mission" and one he loves is pin trading. Usually every trip he has a theme of pins he wants to find such as all the monorails or the hidden mickey pins. Pin trading has also helped him with interacting with others as social skills can be a big problem with Aspies. My ds also likes taking pictures, and one trip we took dd's Ken doll and we took his picture in various places at the parks - we all had a good time with that, except of course dh

That is too funny you bring that up, Hidden Mickeys were one of the very first things he fixed on and wanted to find. I'm putting together a checklist of all the confirmed ones that I can find online, and he only gets to cross them off if he's taken a photo of them. He LOVES lists, and loves collecting, I've found a list of characters for him to check off as he gets their autographs. We're also going to collect pressed pennies (he has a fairly large and valuable coin collection, and loves the novelty of them) and I've been getting checklists of the different machines and their locations together to bring with us, as well.

Food is a BIG issue with ds as there is only a handful of things he will eat. One of the reasons why we bought dvc is so that we can feed him at the resort before we go out to dinner if we are going to a place he doesn't like. You can find the menus for all over Disney and I find that very helpful.

Ds does NOT like 3-D shows but will go in with us and not wear the glasses.

Good luck and I hope that you all have a really good time! I do know what it's like to constantly plan around both my boys and all their sensitivities. It has been great since dd has gotten old enough for the two of us to go off and have the fun that we can't have with the boys - they see no sense in things like riding Big Thunder Mountain over and over and over and..

jill

J has the same picky eating habits, largely due to a very, very sensitive stomach, and sometimes due to considering anything other than meat and potatoes type meals "weird". We're making sure that every restaurant we eat at has macaroni and cheese somewhere on the menu as a last resort if that's the only thing he's willing to stomach that day.

I'm pretty confident it'll be a great time. I've gotten a lot of wonderful tips from everyone on the boards about how to handle both the twins and some of the things that might overwhelm my husband. More than anything else, though, I'M EXCITED!

I can only write a little right now, but wanted to add one good place to watch Illuminations from. First Aid and the Baby Care Center at Epcot are just off a bridge that leads from Test Track toward Mexico. If you stand on that bridge, you have a pretty good overview of all of World Showcase. You are not right along the water where everyone else is and it usually is not crowded there. In addition, if it gets too overwhelming, he can duck into the restroom or First Aid/Baby Care. That area is not usually really crowded with people leaving because it would be going out of the way to the exit. For all the parades and night shows, stay where you are and wait for 10-15 minutes before leaving. You will find most of the crowd has already left and your leaving will be much more pleasant.

Good luck on your trip and have fun.

That is a really great tip. We want to try to take in at least one fireworks show, and I'm not sure he'd be able to stand the feel of earplugs at the end of the day while he's still trying to process everything that's gone on. I'll have them on me in case, but having quiet-ish viewing spots to choose from is a great backup. Thank you!

 

[mechurchlady]

Tears of joy over new babies and tears of sadness for you to have to deal with so many things. Remember that you are loved on this board and I personally send you hugs and chocolates and dole whips and prayers. It is hard dealing with neurovariants but they are such a special type of person.

Let me give you a little gift, my mother the neurovariant with hypersensitivity. She could help you around the house with little chores.
I love her dearly though she can send me into my own meltdowns and I kid about getting rid of her as I truly love her especially now that I know what she has.

 

[saveaquarter]

Tears of joy over new babies and tears of sadness for you to have to deal with so many things. Remember that you are loved on this board and I personally send you hugs and chocolates and dole whips and prayers. It is hard dealing with neurovariants but they are such a special type of person.

Let me give you a little gift, my mother the neurovariant with hypersensitivity. She could help you around the house with little chores.
I love her dearly though she can send me into my own meltdowns and I kid about getting rid of her as I truly love her especially now that I know what she has.

Thank you! I'll take the hugs and chocolates and dole whips, but I'd like to politely decline the offer of your ever so helpful and easygoing mother

 

[fausz4]

Good Luck to you - it sounds like you are doing the right thing and that is plan for a good trip. I have an Aspie son 12 and an Aspie Husband, we finally figured out my husband was an Aspie when we were researching a diagnosis for our son, two years ago.

On our last trip we were uberplanners and it worked out extremely well. DS knew exactly what to expect and the possibilities of what could go wrong. We also used the Hidden Mickey Book and pin trading to keep DS ocuppied - and we all enjoyed both! We also brought items that would keep DS occupied and stimulated - kooshi ball, pen and paper, mp3 player, books.

I did buy DS the Walt Disney World for Kids so he could read up on the rides and what to expect - so I dont know if you have purchased a guide book yet - but it should be helpful.

You are on the right track and I am sure you will do well...

Hope all is well with the birth of your babies...

 

[makelifehappen]

This is a tough one, really, since it is all individual.

No two spectrumites are the same

What works for my children, doesn't work for either my brothers or I and vice versa.

I am a little worried about your plan to break halfway through the day, as we all felt fairly overwhelmed on the bus rides (to and from the parks) and it often set the tone for at the least the next hour or so.

They are overcrowded, loud, kids bouncing about, music, bus is generally a loud motor vehicle etc. and the later your exit the worse it gets.

We always opted for our meal times to be our quiet times (though most places are still quite busy and loud), we would often take the food and go off to a quieter spot where we could all relax and spend as much time as we needed to relax. This allowed us enough of a break to recharge and go strong until the bitter end

That said, we recently met up with another family that we know from online chatter (that also has a couple of spectrumites in the family) who could only cope with early morning start and generally rolled back into the resort area for about 3-4pm, did the swimming, food, arcades, etc and called it a night.

It is alot of work with 2 children and even more so when they are in a stroller. If you are able to rent a vehicle and do things at your leisure, then I have heard that this is a huge help.

I watched a grown man holding his sleeping child in a line-up for a bus (no stroller because she was about 4) and he couldn't board until the 3rd bus, so he was streaming sweat, was completely overwhelmed and bordering on meltdown (can't say for certain he wasn't on the spectrum, but either way...it is what it is).

A stroller is an absolute must. I have always opted to bring mine, but it is no "walk in the park", when getting on and off buses (which I imagine would be worse with a double stroller). Renting Disney Strollers may be a better option, but again, you'd be stuck carrying the babies in arms once you head to the bus.

I hopped in a cab and ran to Walmart ($20 cab ride) on our first trip with our youngest because I desperately needed a sling for all of the times when we needed to leave a stroller outside of a restaurant or attraction. They didn't have a sling that was suitable, so I bought a piece of stretchy fabric that did the trick because I knew how to tie it in the fancy ways that a :

www dot mamankangourou dot com wearer should

As far as minimizing the stress, avoiding overstimulation, etc I opt for the Guest Assistance Card, each and everytime. It really tripled our experiences there, which would be a welcome relief if the purpose of your visit was to destress!

Transition planning is a must, but we have never really "planned" the trip. Sometimes that is too much stress for us, as the parks are so busy it becomes difficult to predict when you have to be at certain places, for certain times. We generally begin each morning with the park guide and times of attractions/shows and take it from there. Whatever we don't fit in, we simply don't fit in...

Needless to say, I am sure...we still always come back feeling as if we need a vacation from the vacation because it is inevitable that you will feel the effects of being on the Spectrum (at a massive place like Disney) regardless of what accommodations are made.

If you have any other questions, I would be happy to answer to the best of my ability. I will rack my brain to see if I can come up with any more suggestions. Hope that this has been helpful.