A Disney epiphany

by arianne

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This is our first trip ever to DisneyWorld, we were brought down here courtesy of the folks at Disney to experience and learn about their systems and accommodations for special needs families, and I’ll be writing a few articles for them all about planning, surviving and enjoying Disney.

I’ll post in detail about this trip when I get back, we’ve had lots of highs, and also lots of lows (I blame autism and Disney).  I’ve had a HUGE learning experience as to what NOT to do on a trip like this.

It’s vitally important, I think, for families that have special needs kids, especially those like us that have more than one child with special needs, to know the nuances that can make or break a vacation.  What might seem like a nuance to a typical family, will be a deal breaker for my family.

Most people can’t afford to go on “experimental” type trips like this, so I’m so grateful to Disney for caring enough to get families like us on the front line, researching and testing out the ways of navigating this amazing destination. However I’m concerned that they’re not yet ready for families like us, as there are lots of changes needed.

But like I said, we are on the front lines with this — and on the front line, you take some hits.  Possibly a LOT of hits.  Even though I was knee deep in great secrets and tips when I researched our trip on the Disney Moms Panel website, there still wasn’t much information for families with multiple special needs children.  I’m excited to be able to contribute to getting this information out there, because I think when done right, and without having to do things wrong the first time, families with multiple special needs kids really CAN have a totally magical experience.

It’s all about building layers — layers of info that is general — anyone heading to Disney with their family should know it — then add the layer of general info that families with special needs should know, then you add specifics for families like us that have more than one special needs child.

There are so many families like us, maybe they have one child with autism, another with ADD and another with severe allergies.  Maybe they have two with autism, and one with a different disability.  Maybe like us, they have three with autism.  The statistics show that more and more families are like this — but you don’t see families like us going on vacation very often. It’s a lot of work.  So. Much.Work.

OHMYGOSHIHADNOIDEAITWOULDBETHISHARD.

We are such a well oiled machine at home that we really underestimated the difficulty that we’d have here.  Don’t get me wrong — we knew it would be challenging.  But we can only do so much, there will always be the x factor of not knowing how our kids will react.

I’m surprised we haven’t had noise complaints from all the screaming/crying/yelling coming out of our hotel room due to not one thing going right for us here.

So I look forward to telling you all about it, so much to share.  But for now, time to go get through another tantrum…

Update — You may be wondering why there was never a follow-up post about our Disney trip. The truth is, the trip was absolutely terrible, and I could never bring myself to write about it more. I didn’t feel comfortable writing up posts about how great DisneyWorld is for autism families because the plain fact is that it wasn’t that way for us.

We were hassled by staff when we would ask questions about which line was for our passes, hassled as if we were faking the need for the passes (a common issue among autism families since autism doesn’t “look” a certain way), the areas that were supposed to be easier for the special needs kids (like “shorter” lines, etc.) were still not anywhere near do-able for us, and one time as we were folding up the stroller to get on a bus, our 3 young boys hopped on the bus ahead of us and because the driver was in such a hurry, he closed the door and started driving off with our kids on the bus and us on the curb (immediately outside the door). My husband had to chase him several feet and pound on the window before he stopped. Yes, my heart stopped in that 1 minute he was leaving with my kids!

We found maneuvering the parks very difficult and not intuitive, which is slightly annoying for a normal person, and torturous if you’re a kid who cannot handle that sort of thing — and in general I simply do not recommend this type of a trip for families with multiple special needs kids. It is SO hard for me to say that, and we were frankly devastated that our first time ever at DisneyWorld was such a disappointment. I do hope someday when the kids are older and perhaps in a better place in their autism journey that we can return. I’d love to report back that changes have taken place! I’ll be sure to update here with links to those posts should that trip ever happen. 

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