First trip to WDW, 8yo ds w/ Asperger syndrome, need advice please

[tmstew28]

Sorry for the long title.

This is our first trip to WDW. We are leaving in 3 days. In the last two weeks my son has regressed tremendously. He's had a lot of things that have changed. We had a death in the family, he has a teen sister (enough said! ), the school year has come to an end. So, you can see there's been los of change, which isn't easy for him. So, we've been seeing a lot of aggression, him trying to control everything, and a real lack of emotional regulation. Today he tried to jump out of his 2nd story bedroom window to get away from his ABA therapist.

So, as you can imagine I am extremely apprehensive and anxious about our upcoming trip.

My son has Asperger Syndrome and hypotonia (low muscle tone). I know all kids on the spectrum are different. Currently his anxiety is through the roof, he has a low tolerance. He is fatiguing easily.

I plan on getting a guest services card. I know I need to explain my sons particular needs. How exactly should I express them? I am afraid I'll miss something important. I am contemplating getting a stroller for him. We will have three adults in our party.

We are staying off site in Davenport at Bahama Bay Resort. We'll be there 10 days.

Our plan is to do an attraction a day:

Saturday: fly into Orlando, lunch, hotel, pool, maybe Downtown Disney, dinner.

Sunday: Hollywood Studios for the Star Wars event. (My plan is to get there way before rope drop and get a spot in line, and then dash for the sign up booth for the JTA.)

Monday: Epcot

Tuesday: Discovery Cove (this should be nice and relaxing, we're also doing the dolphin swim.)

Wednesday: Magic Kingdom ( relax in the morning, go later, stay for parade and Wishes.)

Thursday: Aquatica (stay until early afternoon or so, relax in the evening by the pool)

Friday: Animal Kingdom (early evening, relax, dinner)

Saturday: Beach, (maybe in Clearwater)

Sunday: Choose a Disney Park to revisit

Monday: Return home. (NOOOOO!!!! I know it will just go by way too fast.)


I know it sounds like a lot, but with three adults we'll be able to take turns having down time, taking him back to the hotel, or just for a ride outside of the park.

I have an itinerary/schedule for each day to help him know what to expect and to help us all just to know what we're doing. He is very excited about going. When I made the plans to go he was so stable, and things were better than they'd ever been in our house. I'm hoping he'll be so busy and enamored by the magic of it all that things will be great.

So, do any of you out there on this wonderful board have any thoughts or advice?? I am so nervous.

Thanks for your time,
Tina

 

[Cheshire Figment]

I can see one potential problem, and that is for JTA. To sign up the child must be present with the parent. Unless he is able to keep up with you at rope drop you may not be able to get him signed up. You might be better moving your DHS day so it is not on a SWW day.

From Davenport to either Clearwater or Melbourne Beach is more than 1½ hours drive each way.

And any reason why you are doing Aquatica and not one of the Disney water parks?

 

[tmstew28]

As far as the JTA , my husband will be hot on my heals with our son in hand(s) to get him signed up. I hope it works out. He just has to be there when I actually make it to the front of the line, right? I can run ahead and secure a spot in line with out him? I just can't actually put his name down without him physically there? Or will they not let me in line without him?

We're going to go to the West coast because neither my husband nor father have seen the Gulf Coast. It's so beautiful and they both want to go.

And Aquatica came with our Discovery Cove tickets.

 

[my3apsons]

We arrive down in Disney 2 days. I'm traveling with 3 boys on the spectrum. It's going to be an adventure. My 12 year old sounds a lot like your son with the hypotonia issues. We choose not to do the JTS, as I thought it might be to much for him. Good luck

 

[EvangelineG]

I am planning a first trip to WDW for December with my twin 11yo sons, who have Aspergers, and I have many of the same concerns.

We did a trip to DL when they were 8, and what worked for us was a highly structured, fast paced morning (my sons are early risers). Rope drop, used ridemax to hit the rides they wanted (had previously watched videos with them of each ride and carefully decided on our list), so we could avoid the worst of the crowds. We then did an early lunch, and that would basically be it for us (wander and shop a bit on the way out). At that point they were out of stamina and couldn't cope with crowds/waiting/noise etc any more. We spent a lot of downtime at the hotel pool which was pretty well deserted during the day, and ate in the hotel room rather than try to have them sit through more than 1 meal out a day. We also broke up our trip with "rester days" where we'd go to the beach or somewhere else much less demanding from a sensory POV than a theme park just like you're doing.

We plan to do much the same this time, just hoping at this point they have a bit more stamina for staying longer in the parks, but keeping my expectations low and flexible in case they don't. We also have extra adults in our party this time around, so that we can make sure the boys get all the downtime they need, without us completely missing out on the parks.

Good luck! I'd love to hear how it all goes when you get back.

 

[GraceLuvsWDW]

My recommendations:

I think you absolutely WILL need a stroller for him. You can rent one from the stroller rental places not at the parks-they have better strollers for larger children. It's good for them to have a "safe place" such as a stroller to retreat to.

Earplugs-helps with the noise if he will wear them

If he has trouble being wet bring change of clothes to parks each day

Fidgets/handheld electronics for while in line help

Be prepared to have him derail your plans. If he is in refusal mode it's best to take a break and regroup.

Don't try to "encourage" him to ride rides he's uncomfortable with/deal with characters he's uncomfortable with. It takes a while for some of them to acclimate to the "extreme" nature of WDW.

Take lots of familiar items from home-familiarity will help calm.

As far as the GAC, just tell them his issues and they'll take care of you. You will still wait in lines so be prepared for that.

The heat will be bad so drink lots of fluids and intersperse A/C shows throughout the park days.

Have a great trip! My dd has AS and we have learned all of the above from experience.

 

[bouncycat]

My DS 13 has Aspergers also, and he has been going to WDW for a while, since we live close to the parks. He really hates the loud rides, so ear plugs are a must. He does understand the concept of waiting in lines, so that isn't an issue. The crowds ARE an issue. Our meltdowns usually occur when it's super crowded and someone bumps him, or stops in front of him. That's his pet peeve. We usually try to deal with them as they come up, at his age we can calm him down pretty quickly most of the time. Sometimes we just have to leave. I do let him do things he likes to do, like most of Epcot. He doesn't like the characters, so we don't push that on him. He doesn't like to talk that much to some people, and others he'll talk their head off. There is no rhyme or reason to that one, so we don't push the issue. We do meet people off the boards over there quite often, and I tell them up front, if he doesn't wanna talk, don't push it, otherwise we still get meltdowns, and attitude. If we don't eat where he wants to, or if I fudge up and get the wrong thing for him....again, lookout! We usually just come home, but I do understand that most people don't have that luxury. We usually let him dictate the pace, and lots of time where to go, and that helps quite a bit. DS and DH play together in line, so that helps. My best advice, you know your child best, and his/her triggers, so keep that in mind, and keep an eye out for it, and you'll be fine!!!! Enjoy your trip!

 

[bookwormde]

You are already there, but if you are still monitoring this thread or see this post trip is may help in the future.
The first thing to do with our kids when Anxiety rises to unhealthy levels, is to remove or modify as many stressors as possible. It is also good to have them spend more time engrossed in their special area(s) of interest and areas with visual input where they can become engrossed.
Hearing that he is not comfortable with his ABA is always a big red flag, since there is so much ABA done that is inappropriate for our kids. If the therapist is doing "classic" ABA (where the goal is to modify behaviors) then that is at best inafective and at worst very damaging. Our kids need the high level analytical ABA work to determine the social skill set components that are deficient and then to work on the underlying skills. You can tell of this is happening since you will be a part of the analytical process in referencing his presentation and developing the priority skills to work on (based on the child's needs not an attempt to control non critical behaviors). If it is "proper" Aspergers ABA then it sound like the therapist is poor at reading your child and is "pushing" to get result in stread of "encouraging" your child's skill set growth.
As for your Teenager DD, she should be highly educated in Aspergers so that she can appreciate her brother's gifts and to understand his differences and that they are not "choices" but are core to his evolutionary genetics.
Our kids are always burnt out at the end of the school year, and for most transitions are difficult, so it is common for anxiety level to be quite high.
As for WDW, I know it is too late now, but if you go again staying on site is one of the biggest helps since it makes it easy to take mid day breaks.
Discovery Cove sound great, but be sure he have been "video briefed" ahead of time.
The first year we went our focus was an growing our DS's adaptive skills when it came to transitions (we have a therapeutic "theme each time, with this year being fully comfortable with restaurant, even though he has an extremely limited diet).
Take your time and listen when your child advocates for his needs, and plan to take a slow pace and be extremely flexible. Split up as need so your DD does not feel deprived. You have received a lot of great advice from the other posters.
Our kids GAC needs are typically around sensory or social challenges that the line crowds present so alternate waiting areas and entry opportunities are usually the most helpful.
I hope you are having fun and of course we expect a trip report.
Bookwormde

 

[carrie6466]

Sorry for the long title.

This is our first trip to WDW. We are leaving in 3 days. In the last two weeks my son has regressed tremendously. He's had a lot of things that have changed. We had a death in the family, he has a teen sister (enough said! ), the school year has come to an end. So, you can see there's been los of change, which isn't easy for him. So, we've been seeing a lot of aggression, him trying to control everything, and a real lack of emotional regulation. Today he tried to jump out of his 2nd story bedroom window to get away from his ABA therapist.

So, as you can imagine I am extremely apprehensive and anxious about our upcoming trip.

My son has Asperger Syndrome and hypotonia (low muscle tone). I know all kids on the spectrum are different. Currently his anxiety is through the roof, he has a low tolerance. He is fatiguing easily.

I plan on getting a guest services card. I know I need to explain my sons particular needs. How exactly should I express them? I am afraid I'll miss something important. I am contemplating getting a stroller for him. We will have three adults in our party.

We are staying off site in Davenport at Bahama Bay Resort. We'll be there 10 days.

Our plan is to do an attraction a day:

Saturday: fly into Orlando, lunch, hotel, pool, maybe Downtown Disney, dinner.

Sunday: Hollywood Studios for the Star Wars event. (My plan is to get there way before rope drop and get a spot in line, and then dash for the sign up booth for the JTA.)

Monday: Epcot

Tuesday: Discovery Cove (this should be nice and relaxing, we're also doing the dolphin swim.)

Wednesday: Magic Kingdom ( relax in the morning, go later, stay for parade and Wishes.)

Thursday: Aquatica (stay until early afternoon or so, relax in the evening by the pool)

Friday: Animal Kingdom (early evening, relax, dinner)

Saturday: Beach, (maybe in Clearwater)

Sunday: Choose a Disney Park to revisit

Monday: Return home. (NOOOOO!!!! I know it will just go by way too fast.)


I know it sounds like a lot, but with three adults we'll be able to take turns having down time, taking him back to the hotel, or just for a ride outside of the park.

I have an itinerary/schedule for each day to help him know what to expect and to help us all just to know what we're doing. He is very excited about going. When I made the plans to go he was so stable, and things were better than they'd ever been in our house. I'm hoping he'll be so busy and enamored by the magic of it all that things will be great.

So, do any of you out there on this wonderful board have any thoughts or advice?? I am so nervous.

Thanks for your time,
Tina

I would definitely get a stroller if you think you will need one. I have an 8 yo DD (she'll be 8 when we go in July) and she still goes in her stroller when she needs her own space. We have a very think sheet-like thing that we attach to the hood and she pulls it down and is in her own place. She'll sometimes come out after a while and is like a new child. Sometimes she just falls asleep in there (easily fatigued, as well). Either way it's her 'safe spot' and until she is too big for it, I"ll keep bringing it. My stroller holds up to 75lbs and right now she's around 48 so we're good for a while.

One thing I did on our last trip was to get different colored index cards for each park. On top I'd write down what park we were going to that day. One one side I'd put all the rides and activities she likes that we were doing that day. On the other side I'd put what restaurants we were planning on eating at and what they had that I thought she would like. Then I fake laminated them with clear packing tape and handed her one every monring. As she likes a schedule, she loved this. She still keeps the cards around and tells me they are her memory collection now.

I would also get a GAC. We don't always use it, but it's good to have when we need it. We are trying to improve her waiting skills rotfl2 so if it's not a huge line, we wait. One of our biggest problems with waiting is that she puts her hands on everything. Or her mouth Our other problem is that she freaks out if a stranger accidently touches her; bumps into her or touces her arm while speaking or something like that. We had an incident that almost ended out day at MK at 10 am in a line for laugh factory, which is why we now get a GAC. A man reached behind him without looking and thought he had his daughters arm :sigh::

 

[tmstew28]

So far so good. We did not get a stroller the first day, but today we did. By 11am he needed it. We had, but didn't need, the GAC card yesterday. Itwas a life saver today though.

The CM's have been wonderful. They have all been so friendly, understanding, and helpful!

Today, some of the noise was a bit much for him, but again he did alright. I had his headphone yesterday and he never used them. I thought I was safe to leave them home today. Maybe I'll bring them on Wednesday for MK.

I have to say the timing for everything has just been perfect. Really, things are going sooooo smoothly. This evening was a bit rough, but we just over did it. We wanted to see everything, and had missed Mexico earlier in the day. We should have just left, but we went and it was not good. Honestly, it wasn't even our son. We had all just had enough. We got out of the park on an OK note. Not bad, though. Everyone fell asleep happy. Tomorrow should be nice at DC. I am looking foward to an earlier night, and less hustle and bustle.

Any tips for MK? I am afraid I am going to fall into the "do it all" trap again. I really really want to see the parade and firewarks at the end of the day. Maybe I should send him back to back to the hotel for a bit during the afternoon for a break and then just come back. I doubt that will work. I probably won't be able to pry him away from it all. Maybe I will just bring a towel or small blanket to put over the carrage so he can take a nap in there. Hmmm....We'll see.

So far, we are loving Disney. It is magical.

Night!

 

[EvangelineG]

So glad to hear it's going well!

Disney magic, you just can't beat it, can you?

 

[bookwormde]

And each subsequent visit it gets easier and more Magical

Glad to hear you are having fun.

bookwormde

 

[lucigo]

I have an 8-yo with fairly high functioning autism. We just got back from a quick trip, but have been 3x this year. We wouldn't survive without a stroller. Not only that, but yes, I was the one last week with an 8-yo sitting in a stroller drawing racetracks on a magnadoodle and running marble races on them in the middle of Animal Kingdom.

Its an overwhelming place and the stroller (and their toys) give them an escape and a break. Go prepared. Don't worry about what other people will think.

We were only in the parks 2 days, and he still came home with a new tic (a weird vocal throat clearing). Its already starting to dissipate, but I know even though he seems to be fine, that he obviously is internalizing stress.

Make sure to allow time to do things that he obviously is enjoying...things that you might not have planned but that are interesting to him. Mine likes to study polished rocks in the gift shop, sit in the numbers at Pop Century, and ride Dumbo. You just never know what is going to be HIS favorite thing about Disney.

Hope you have a great trip!

Ooops, saw your update, glad its going well! Definitely bring the headphones for the parade and fireworks!