What would you do if you were going with an autistic child who was not your own? About This Page:

[IvyandLace]

My husband and I (definitely WDW-aholics) were recently invited to share a 2 bedroom condo (Marriott's Harbour Lake) in Orlando with my husband's brother, his wife and their 2-year-old son who has autism (our nephew whom we dote upon!) for an upcoming trip in December 2009 or January 2010. (We went to WDW with them (sans child) in 2003 before they were even married where we were on-site and were in a larger group.) I really love my sister-in-law as she truly "gets" Disney; however, my brother-in-law tends to be more of a...dragging-his-feet, c'est la vie-kind of fellow. He does not like to really follow touring plans or schedules on vacation. They went to WDW this March 2009 with our nephew for his very first trip and said that he absolutely loved it (But of course!!) They went in very early March 2009 and were able to walk in to Liberty Tree Tavern twice during the trip so it did not sound like they ran into many crowds. During this trip, they stayed off-site and visted MK, Epcot and AK.

Now to this [pending] upcoming trip-they have offered to pay for our accommodations to help us with costs. They are looking at going either 12/17/09-12/24/09 or 1/1/10-1/8/10. My sister-in-law stated that they are not planning on doing Disney every day but are "very very flexible" particulary because they always have to "take clues" from our nephew. She stated that they are planning on "strolling around the parks, riding some rides and having a good time with [our nephew]."

Obviously, I'm a little worried as I like to plan...probably not as extensively as I did in the past, but I always like to have a plan of which park, ADR's, etc. I have been known to subscribe to TourGuideMike and am interested in Ride Max. Will these two touring styles clash too much? Or should I just relax and follow their lead to enjoy this trip with the nephew as they were the ones to invite us? I don't think that they will mind us going off on our own, but I'm having a hard time biting my lip about the whole "strolling around the parks" especially if we do decide to go to WDW in December 2009. All I keep thinking about is, "What about the crowds?!" My husband and I have taken many "non-commando" trips to the World and have loved them; however, these trips were taken with just the two of us. I did make plans prior to taking these trips-had tentative schedules for each day and ADR's, but if we changed our minds during these trips, then we did whatever it was that we wanted to do. I say this to emphasize that I am not *afraid* (not sure if this is the right word) of going "non-commando" on this pending trip. I also want to stress that my husband and I do get along with his brother and wife-I especially so with his wife as we have very similar backgrounds and tastes. My husband and I do not see them very often although they only live about an hour away but try to see them as often as possible especially to interact with our nephew. One of the biggest reasons that we would be going on this trip to WDW would be to enjoy our nephew in one of our very favorite places and are thrilled with the invite!

I guess my real reason for posting was this-in light of all that I have described, I am not sure what role (if any) planning should have in this trip. I know that if I were to ask my sister-in-law the questions that I have asked of you, she would reiterate her opinion that they would be taking things as it came. I know that they would be totally okay with us splitting from the group at times, but I now am able to better understand the importance of maximizing our time together. THAT is what I try to do with my planning...just make sure things go smoothly. If we should decide to go during December 2009, I just don't want to be stuck in the middle of Fantasyland at 1pm with a group who is tired and hungry with every one looking at me for advice. I'm not the type of planner who can be that flexible, but perhaps this trip will allow me to hone that skill. (Flexible planning-is there such a thing??)

I have never gone at either of these times of year and would like some opinions and tips on how to plan this trip and keep peace. I have posted this previously in the "Planning Your Adventure" board and gotten some good advice; however, I noticed that there are parents of children with autism on this board and wanted to see what you all had to say. Both families will have their own cars which will help with transportation. Based on other's suggestions, I had already explained the importance of getting a GAC while we are there to my sister-in-law.

Thanks! IVY

[Eeyore Tattoo]

How about relax & plan the trip together.
I am sure you will go off on your own as well as do things as a group.
Why not plan group events & meals & plan other things as a couple.
I am sure they don't expect you to all be together 24 / 7
We are doing a big family trip with 8 of us & we will not all be together all the time.. We will have most meals together but not all...

[Teresa]

If at all possible, I would go with the January dates. The first, it's a bit crowded, but it usually thins out by the second or third. Then, it's like a ghost town almost!
Of course, this puts the parks opening later and closing earlier - but that's because you won't NEED as much time to get around, because you'll be among the few in the parks.
Sounds like you need to have a talk with your in-laws about their expectations for the trip, and yours. Be up front and let them know you're a commando type person.
It sounds like the real concern with your nephew isn't that he's autistic, but that he's TWO! They get tired and fussy and angry easily, especially at WDW. Let him dictate how much he'll tolerate.
I'd ask your SiL when he wakes, eats, and sleeps. Find out if there are things he just can't deal with - some autistic kids I've known are fine in crowds, some lose it. Being in a stroller seems to help - gives them a place of their "own". Ask if they'd mind if you plan some meals at the parks around his schedule. And, make sure that you and your DH take a day for yourselves. Maybe offer to take the nephew for an evening or afternoon, so your BiL and SiL can go do something on their own.
Again, I wouldn't focus so much on his autism, but on his age.

[Happymommy]

Yeah-- your planning may clash. I have children with high functioning autism--- I can't stick to plans. We LOVE Disney, but sticking to a plan (especially Tour Guide Mike) would never ever work for us. I make ADRs for each day (some we make, but many are cancelled, which is why we'll never do the dining plan again) Before we leave, I make some ADRs, I make a calendar for the week with park openings and EMH times in my bag, but that's it. Then that morning we see what the boys want to do, and that's how it goes. If they happen to be up early, and we can get to a park for opening, then we go. If they sleep in, then it's a pool day, and an evening at a park. It's really important that they sleep when they need to sleep. We were with another family on our past trip, and we just played it by ear. We did alot of texting--- "wanna meet here", "what are you up to", kind of thing. Sometimes we met up with them, sometimes they stuck around the parks, and we had to go back to the villa. Sometimes we did different things, but we had a great time. Another trip we were supposed to meet up with my girlfriend's family, but I had to cancel because we were meeting early, and my kids weren't waking up. The rest of the day really depends on them getting the rest they need. You can ask your SIL his sleeping/eating schedule, but we've found their schedule is way off in Disney. So, if you can't play it by ear--- I think just have a conversation, that you'll be together as much as you can, but splitting up may be necessary quite often too.

In our 8 trips with my kids, I've never gotten a GAC, so I can't help you with that. We just make good use of fast passes, and we know what they can handle and what they cannot.

[Eeyore Tattoo]

Dina,
Excellent advice, Thanks for your input from a Mom with experience

[mechurchlady]

The best solution is to have a plan. Then have options like if rides not working, cranky adults, or a street show. The problem with neurovariants and especially autistic kids is that they are evolving like all kids. It takes time for a parent to figure out what triggers meltdowns, what to avoid and what helps the child. Not even a mother of a neurovariant can say for sure that their kid will for sure do something. Some times kids surprise their parents especially in the parks.

Also be reminded that even if the kid was not a neurovariant you are going to have to work around potty breaks, meltdowns, I WANT, not big enough for rides, scared of rides, scared by characters, picky eaters, and system failure from heat, stress and over exertion.

Read up on what rides 2 year olds are allowed on and about swapping passes. Talk to the kid's mother and find out what triggers the child has. work with the mother or you may be at Dumbo and have a kid in total meltdown as elephants are a trigger.

Know the parks and be prepared for sudden changes in plans. I do that at DLR. I am tired so instead of going to DCA there is the train ride and watching a parade. Roll with the punches as they say.

[Happymommy]

For what it's worth, I felt the need to say this (sorry)

It makes my skin crawl when I see the words "autistic kid," "autistic child," or "neurovariant." My pet peeve is when people label a person or child as autistic. They are children who happen to have autism. I know I'm not alone in this, because I've heard this from many other parents of children with autism. Each child is unique and special. I'll leave it at that, but I just really had to share my 2 cents, for what it's worth.

[Sandra Bostwick]

Originally Posted by Happymommy

For what it's worth, I felt the need to say this (sorry)

It makes my skin crawl when I see the words "autistic kid," "autistic child," or "neurovariant." My pet peeve is when people label a person or child as autistic. They are children who happen to have autism. I know I'm not alone in this, because I've heard this from many other parents of children with autism. Each child is unique and special. I'll leave it at that, but I just really had to share my 2 cents, for what it's worth.

That is a very common preference. As far as neurovariant, I've never come across that term in any of the schools or hospitals I've worked in, or any of my research, so I can't comment on that one.

I do prefer wording things the way you have them, but I'm happy whenever people discuss disabilities to improve awareness, so it does not really bother me when someone says ______ person because it is just words to me. The fact that they are discussing it is important.

I guess my point is that, when someone says "Autistic person", I don't think they mean any disrespect, so, while that might not be my preference, it does not bother me. There are PLENTY of terms that clearly mean to disrespect a group, and those make me nuts.

I like to point out exactly what you just pointed out, so the speaker might be more aware of how the wording changes the meaning. So many people are appreciative of the info!

On the other hand, my pet peeve is when someone says "suffers from_________" because they are assuming suffering, so I guess we all have our preferences!

[Happymommy]

Originally Posted by Sandra Bostwick

That is a very common preference. As far as neurovariant, I've never come across that term in any of the schools or hospitals I've worked in, or any of my research, so I can't comment on that one.

I do prefer wording things the way you have them, but I'm happy whenever people discuss disabilities to improve awareness, so it does not really bother me when someone says ______ person because it is just words to me. The fact that they are discussing it is important.

I guess my point is that, when someone says "Autistic person", I don't think they mean any disrespect, so, while that might not be my preference, it does not bother me. There are PLENTY of terms that clearly mean to disrespect a group, and those make me nuts.

I like to point out exactly what you just pointed out, so the speaker might be more aware of how the wording changes the meaning. So many people are appreciative of the info!

On the other hand, my pet peeve is when someone says "suffers from_________" because they are assuming suffering, so I guess we all have our preferences!

I understand what your saying. It's just that never in a million years would I think of referring to my children as "autistic." I also would never say they "suffer" from autism--- they do have some challenges, but we work through them. They also have some AMAZING intellectual gifts that sometimes shock their teachers (and me). I don't like to hear autistic, but I can roll with it. I don't really like it, but, I can deal with it. I probably wouldn't even have mentioned it (since I've seen it time and again), had I not also been hit with neurovariant on this thread LOL.

But, if someone referred to my boys as neurovariants--- I just find that so insulting. I have both a teaching degree as well as a nursing degree, and I've never come across that term in a clinical setting-- only on the internet, and it always sounds derogatory.

[CinderAbby]

The problem with neurovariants

I have no idea what that word means but to me, it sounds very derogatory to me. Just the way it sounds makes me think of someone who chooses to be a certain way - that they have to be different from everyone else and want to flaunt that difference. My daughter does not choose to be different nor do we flaunt the fact that she is. We don't hide it or cover it up either. We don't make a big deal out of her Autism and just take things as they come. Abby is who she is and we wouldn't change her. I have no problem with people calling my daughter Autistic or saying she has Autism, but your word automatically puts my hackles up

[Eeyore Tattoo]

I have never heard this word either ( neurovariants )

[Sandra Bostwick]

Originally Posted by Happymommy

I probably wouldn't even have mentioned it (since I've seen it time and again), had I not also been hit with neurovariant on this thread LOL.
.

I like that you mentioned your feelings, rather than getting upset and quietly leaving us! That way we can clear the air and move on to sharing ideas and fun!

[Happymommy]

Originally Posted by Sandra Bostwick

I like that you mentioned your feelings, rather than getting upset and quietly leaving us! That way we can clear the air and move on to sharing ideas and fun!

You're so sweet! Thanks for understanding! Can I say one last thing without being completely out of line???? Here is a great piece that I love written by Ellen Notbohm for Autism Speaks. It's called "10 things every child with autism wishes you knew". I just would like to share this one bit of it. Her #1 explains my issue with "autistic vs. autism" better than I can. " Just in case people think I'm just being a pain.... this is how I feel every time I read "autistic." I like to read this whole piece on days when I feel I have lost all patience. It gets me through the day. But #1 explains my feelings



"1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? "


Sorry to hijack this thread. I know the OP just wanted some good info. I won't bother you guys with this anymore.

[Sandra Bostwick]

Originally Posted by Happymommy

You're so sweet! Thanks for understanding!

Actually, I don't understand because I am sweet! I understand because the feelings are understandable!

I think this brings us to another point to mention to the OP, which is to be sure everyone communicates before and during the trip.

I've seen situations where an innocent person says or does something that makes another person cringe, but nothing is said directly TO them, so how can they know?

When I travel with anyone, I'm careful to avoid problems by setting early ground rules. For instance, I tend to need a bit of "alone time" each day. I'm always honest about that upfront, because i found that requesting alone time any other way makes people think it is something personal.

So, I would add some advice to really sit down with these parents and talk about expectations and preferences. I wouldn't overdo it, so everyone is walking on eggshells, but I think it is important to have a chat over coffee before the trip.

[IvyandLace]

I am really thankful for the last few posts as it has allowed me to see things from a totally different angle. To be honest, I have never dealt with any other children with autism besides my nephew and am always willing to learn how to make things easier for him and/or his parents or to learn more about children with autism in general so that I can be a better aunt!! I really appreciate the wording of your concerns instead of just launching at me and others who have posted. I am now going to edit my original post for better wording. Thanks again, I do appreciate it!

IVY