Friday, 22 September 2017

The magic of Disney


A couple of years back, we flew to Disneyland in Orlando for an amazing holiday, and a photo from that time recently appeared as a memory in my timeline. 
It was the most magical holiday, and one which we'd all like to repeat, but at the same time it was difficult. With a capital D. I've always thought I would blog about it but never quite been able to face it, as I have such mixed emotions about it.

Disney is supposed to be a magical place, every child's dream... and it is, for most children. I mean, how can you go to Disney and not love it?Well on our first day in Florida we spent roughly an hour in the Magic Kingdom, the most magical place in the world, before Sasha could take it no longer. It was a painful hour for all of us as we tried to make her happy, trying to convince her that it was fun. The queue to enter and get your bag searched by security was the initial anxiety hurdle and nothing improved from there. Too loud, too busy, too hot, too much walking and long queues. We had specifically picked a time of year to go which did not fall in any holiday periods (UK or US) in order to ensure quieter parks overall. We felt they were indeed quieter than they may otherwise have been, but they were still too busy for Sasha.

Part of the problem was the new accessibility rules which Disney had introduced not long before we went. I totally understand the reason for them doing this, sad as it is. There has apparently been a growing problem with cheats; people who are not disabled in any way but who don't want to bother to stand in a queue. As word got round more that those with disabilities could by-pass the queues, large numbers of people were pretending that they had difficulties in order to 'jump' the queue.

This is a hot topic, and one I blogged about briefly several years ago after a trip to Paulton's Park and Peppa Pig World. For those who have to endure the boredom of queues, but obviously don't really want to, it's hard to get across the reason why others may find them actually painful, or just impossible.

Disney tried to create what they felt was a fairer playing field. Their new policy is that if you have a disability, you can go to the front of the ride (usually via an exit point) and receive a timed ticket which will let you return in 40, 60, 100 minutes - whatever the time of the queue length at that point would be. For many, this is a good accommodation as it means they can go off and sit quietly nearby, or go on a quieter ride in the meantime perhaps, and are then let back in via the exit when their time is up. In this way, the crowded, busy, noisy queues which are difficult for many with sensory issues can be avoided, or for those who have a lot of pain standing around, they can relieve that pressure.

I think most would agree that the new system works OK for a fair amount of people with disabilities. It's true that it's not as easy as it used to be to 'skip' lines, but as I've explained, there's a reason for that. As Sasha gets older and learns more coping strategies, this system may even work fine for her.

When we were there that time though, those new accessibility rules sadly made the rides inaccessible for Sasha. Her Pathological Demand Avoidance (type of autism) meant her anxiety levels were so high that by the time we'd asked for the first return ticket (on It's A Small World, a ride I think she would have loved), she wasn't wanting to do any rides at all. In fact it wasn't a case of simply not wanting, it was not being able to deal with the attention, and the wait, and the not knowing what the ride would entail, and the stress of a time to fill some other way.

Sasha trudged around reluctantly, becoming more agitated and stating often that she needed to leave. I marched everyone around, trying desperately try to find something which might make Sasha happy. The final straw came after I led us all to a far side of the park especially to find a splash zone play place which I was confident she would love - as our luck would have it, it was closed for the day to be repainted! So after an hour of trying to coax Sasha to try anything, and everyone else following me round almost on tiptoes, I gave in. I remember sobbing on my mum's shoulders; it's one of the few times I've properly cried about anything to do with Sasha.

My parents and I left the park with Sasha, leaving my husband and older daughter behind; understandably though, their mood was also pretty low at this point. After settling Sasha back at our villa, I returned alone to the park later that afternoon to meet up with dad and big sis, and we made the most of our shorter time there. 
That's how most of the following days went; a split holiday. We'd attempt a park as a group with Sasha in the mornings, but she never lasted long. Soon after arriving she would want to 'escape' to a cafe with her ipad and headphone. Then someone would go back 'home' (to the villa) with Sasha, while others went and rode every ride there was in a short space of time. It was the only way it could work. Sasha did love the waterparks, but was reluctant to do any of the rides in them, preferring to just hang out in the wave pools or occasionally the lazy river.

Just before we visited, Disney had also made some other changes to bring down waiting times. They introduced their FastPass+ system, which we thought worked brilliantly for most families. In a nutshell, this lets people book rides in advance, for specific times, and this cuts down queue lengths for all visitors, disability or not. If you want to find out more about that, there's a great explanation over on www.undercovertourist.com.

I'm so thankful that my parents were on holiday with us. It's not overreacting to say that the holiday would have been a complete disaster otherwise. I will say that Disney tried their hardest; on the first day I returned alone to the main desk to explain how it hadn't worked for us as a family. I could barely speak to them through my tears though as it was such a disappointment to me. That wasn't their fault though, it's just how Sasha is. Disney did their best to make it better.

I just kept thinking (and still do) how unfair it was that Sasha wasn't able to enjoy something that millions of other children do. We did go on to have an amazing holiday out there though, and I totally appreciate how lucky we were to go in the first place when many others never get that opportunity. The Disney and Universal Studios parks were too much for Sasha, but Tamsin absolutely loved all of them. She went on every ride there, no matter how high and fast!

The funny thing is that actually both girls would like to return to Florida - Sasha just for the villa with pool and waterparks though. Tamsin has a new found love for Harry Potter and so is desperate to explore all those rides in more detail. Not sure we'd get Sasha on the plane again to be honest, but that's a whole other anxiety story...




To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?



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6 comments:

  1. Steph! I’m a few years late here. We were at Disney about the same time with our PDA kids. We are (why?!?!?) going back there in 2 months. Did Disney employees offer you any real helpful accommodations? We had the DAS and that was ok. But the WAIT to get the DAS was almost an hour, while the NT people had run to their first rides and gone on them already. My kid was already spent from that.
    He’s older now and I’m hoping that helps but his meltdowns can be bigger and more dangerous if handled wrong. Any tips from anyone are appreciated. Wish disney would allow special needs parents to get that stupid DAS pass before they get to the park on the first day!!!

    This time for the first time in my life I’m staying at a house with kitchen off property and hope the freedom to come and go will be better than when we’ve been bound by Disney transport in the past. Thabks for the post. Glad to know our sort of fun sort of miserable trip wasn’t our anolmoly.

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    1. Hey! Wishing you loads of luck! If you drop me an email at stephstwogirls@gmail.com or message me via my facebook page I'll tell you all I know!!

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  2. My daughter has PDA autism, although we didn't know it until she was in her early teens. We have traveled to Disney a few times and I want to share how we've done it, because for the most part, they have been very successful trips.

    The first time we went she was almost 6 and in Kindergarten. We went about 15-10 days before Thanksgiving, which is the lowest week for crowds in the whole year. We brought a stroller for her even though she was capable of walking the whole time (if she wanted to). We also showed her videos of many of the rides in advance. We were accommodating her anxiety (which had been diagnosed as GAD), but not her autism or PDA specifically. Her main objective was to meet all of the princesses, which we did dutiifully, but each time she approached a princess she froze and had a deer in the headlights look. Her body would become rigid and her face would become very serious. But, that didn't stop her from her goals. She insisted on meeting them all. She loved meeting the "head" characters - Goofy, Mickey, Minnie, etc. She didn't have the same fear with them. She also wanted to ride the same rides over and over again, which was fine. The Little Mermaid ride was her tops and we probably rode it a dozen times in 3 trips to Magic Kingdom that week. Over 5 days we spent 3 at MK, and spent 1 each at Hollywood Studios and Animal Kingdom, with each night, except 1 at Epcot. Every day we took a break at the hotel room in the afternoon to rest and relax. We also have another daughter who was 2 1/2 this trip. She had a more typical experience, albeit too young to remember any of it.

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  3. The next time we went she was 9 and we went through the same routine with watching videos first. This time both girls could enjoy themselves, although our PDAer liked that we did a park schedule with a planned route to beat the crowds. We went in mid-October, which is also a low season. She has a number of physical triggers so we made sure we always had early meals scheduled. Hunger and bowel movements have always been discomforting and led to dysregulation. We also brought my wife's mother, who served as another voice to soothe her. This trip we spent a lot of down time in the hotel. We also got a suite so she could sleep on the pullout in the "living room" alone, while my wife, younger daughter, and I slept in the bedroom. This trip was 4 nights if I recall and we did one day at each park with a break in the middle of the day at our hotel.

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  4. Our third time was just two days at Disneyland and California Adventure - one day each. The hotel was less convenient so we spent the whole day at the parks, which was more complicated even though she was 12 by this time. Again, scheduling early meals was a key factor. I think we rode the Indiana Jones ride 5 times. That was her favorite at DL.

    Our most recent trip was when she was 15 and already diagnosed. We spent the majority of our time at Universal Studios and Islands of Adventure on this trip doing Harry Potter things. Universal has a great pre-registration disability accommodation program. If the wait is short enough (I think 30 minutes and under) you skip the line and just walk on. if it's longer 30, you get a return time, but can still walk on to other rides without a wait using the accommodation pass. We even got a special show in the wand shop when another child was chosen and she refused to leave b/c she had not been selected. Amazingly they had a different room special effect for her wand selection process than the girl we had seen the previous time. We used the Disney program as well. It wasn't as good and there were a few confrontations because the park seemed more crowded than ever. This trip we got her an adjoining hotel room for herself so that each evening she could decompress by herself. Alone time is a key factor on reseting her nervous system. This was a very effective strategy. Again, we had a park plan that I shared with her each day in advance so she would know our route and plan and had some control over it because we selected rides she would like in advance.

    One thing I would avoid is fireworks unless you are far away from the castle. The closer you are, the worse they are for kids who have sensory issues with sound. We only made that mistake once. For the most part, we watched the fireworks from our hotel. Not as spectacular, but completely sound free.

    Finally, pre-register for DAS and the Universal program. Do not do it at the parks.

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    1. Great tips, thank you! Glad you've managed to enjoy the magic of Disney :)

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