Aunt Dawn and Lily had a good day while we were at Universal. We occasionally checked in, or she'd text us a picture of Lily playing by the pool. I think it all more or less went as planned. Except that...in buying the groceries for the house, I'd sort of neglected lunch. I'm not sure why, but I think I thought we'd just buy it at the park or drive out to get it, or decide later and buy more stuff...but whatever the reason, it amounted to lots of breakfast stuff in the house, and very little lunch stuff. So Dawn fed herself leftover pizza for lunch, and when we still hadn't arrived for dinner...she fed herself leftover pizza for dinner too.
Sorry about that.
Revisiting "The Plan":
Day 3 (Monday): Rest/recuperate/pool day
Day 4 (Tuesday): Disney
Day 5 (Wednesday): Rest/recuperate/pool day
Day 6 (Thursday): Sea World
Day 7 (Friday): Pool day/pack up/clean up/travel home.
We were on Day 3...rest and recuperate by the pool...and that's how the day started. The rationale behind getting Universal out of the way was that we'd have Dawn's support. She was flying back out on Wednesday, bright and early. Dawn decided it made sense to get a rental car. This was a ginormous help from our standpoint, because her flight was to leave Wednesday but she needed to be at the airport at like 6:30 in the morning.
What we figured though was that if we were going to pick up the rental car, there'd be no way we could pick it up on Tuesday if we were at Disney. We shifted the plan and decided to go Monday instead. Then we could pick up the car Tuesday on a rest day, and Dawn could drive herself to the airport Wednesday.
I kind of want to recap this for a second. Dawn flew down to Orlando to help us with Lily...we didn't pay for her ticket. She ate leftover pizza because we refused to buy her food (okay...not refused, but...you know). Then she rented a car so that we wouldn't have to drive her to the airport...we didn't pay for the car. This was all her idea. I thanked her in about as bubbly a fashion as I'm capable, but I always look back and think...I really did not thank her enough. The universe will recognize it though, no doubt, and owes her massive karma points. YOU KNOW YOU OWE HER, UNIVERSE! And we do too.
This pushed our plans to Disney from Tuesday to Monday...and while we weren't completely prepared (ie, didn't get up at the ass-crack of dawn...ugh...unfortunate choice of expressions, Dawn, sorry) we also weren't worried, because Lily is sleepy by 8:00, and we knew we weren't going to be able to drag out a whole day at Disney without her being completely exhausted. So whether we got there early and left early, or got there late and left late, it really made no difference to us.
So we went to Disney. Did you ever see the Sponge Bob episode where it's like a Krusty Krab employee training video? At the end they get to the part where it's time to make the Krabby Patty, and they show this Krabby Patty out in the distance, and it gets closer and closer, but only incrementally so, slowly growing in the frame as the voice over guy does this fanfare...duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....for an uncomfortably long time. If you haven't seen that, perhaps you've seen the scene in Monty Python's "The Holy Grail" where Lancelot storms the castle...and they show him off in the distance and he gets larger and larger in frame accompanied by tympani background music...they flash back to two guards who look curiously out at him, then back to Lancelot, who is inexplicably further out then he was the last time we saw him...again charging...again moving closer...back to guards, back to Lancelot...etc.
Going into Disney is like that. There are exits for miles. You finally take the ramp, then you're actually on like...Disney Freeway or something because there are no off ramps, it's just an asphalt vein pumping tourists into Disney, and an artery pumping them back out...with no tributaries of any kind. And you drive on this desolate highway that must be all Disney property for miles and miles. And in the background you hear...duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....for an uncomfortably long time. Until you see a sign!
And you're like, "Sweet! We've made it!" But this is just Lancelot, and you still have to glance back at the guards...and still the fanfare...duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....for an uncomfortably long time...
And then at last you reach THIS sign...
And then you've arrived. Sort of. Because you still have to keep driving to get to the parking lot. duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....
And then you've arrived. In a way. Because you have to board the trolley to take you to the gate. duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....
And then you've arrived. Mostly. Because you have to board either the train or the ferry to take you to the actual entrance. duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....
And then you've arrived. No...I'm serious this time. No, come back. You're at the Magic Kingdom. COME BACK! IT'S FUCKING MAGICAL!!!
Okay, if you get the impression that I was frustrated by the Magic Kingdom, then I'm an awesome writer, because I was frustrated by the Magic Kingdom, but until now, I didn't actually "say" that...WRITING!!
Let's back up to the train/ferry. I wasn't prepared for this. We weren't prepared for this. Here's the devil's bargain: Take the ferry and squish together with throngs of smelly sweating passengers on a slow boat ride over a lake into the park...OR...stand in line with throngs of smelly sweating passengers to take a fast ride into the park in an air conditioned train that makes two stops before it gets to the park. Yeah...I know I said "then you've arrived"...and you have...because once you leave the train you're at the entrance, but your train has a couple stops first. To pick up more money for Disney...I mean passengers.
A train was unsafe, or being serviced or something, so they were only partially filling it. But we didn't know that. The wait to get on the train was thirty minutes. There is no disability pass to get on the train sooner. There are no strollers or wheel chairs offered in order to make wait times for low muscle tone legs any less...this set the tone for our entrance into the Magic Kingdom, and it was less than magical. Lily was slowly spinning out of control. She was upset and hot and waiting and we had no idea what was taking so long, or when we'd get on a train. We watched from the line as a train boarded and took off...several cars were completely empty. I was getting more and more pissed off. But we got on...and we got to the entrance, and NOW let the magic commence!
Someone smarter than I am will have to figure out a tip to help kids like Lily prepare for that sort of initial adventure...maybe rent a stroller somewhere else and bring it...maybe keep her cool with spray bottle...I don't know. I just know that saying, "Be prepared to stand in a long-ass line for a train" is not a useful tip. Still, it's nice to know it's coming.
So everyone's first tip for Disney is to get the Guest Access Card. So I'm not going to bother listing it as a tip. I'll get to part B of that in a minute.
Tip 1: If your child needs/will use a stroller or wheelchair, get one/rent one. It's a long hot day. Christ, if they'd have made a stroller big enough for me, I'd have rented one and had Leslie push me around. Before we left a couple people suggested this, and I said, essentially, "Lily won't sit in one." I was wrong. I'm really glad nobody listened to me and they rented it anyway, it saved our ass more than once.
Aunt Dawn went to rent a stroller while I went to "City Hall" to get the Guest Access Card, and Leslie loaded Lily into it and they walked around while I ran ahead to stand in line.
Okay, so the magical Guest Access Card thing. Here it is:
This is what it looks like. I suppose if rich housewives truly understood how easy these things are to obtain, then adults with disabilities looking to make extra dollars as tour guides would be out of money. I'm referring to the recent scandal that surfaced where rich Manhattan moms would pay disabled tour guides in order to allow their children to bypass long lines at Disney using the guide's guest assistance card.
How easy was it to get the card? I went into City Hall to stand in line. A staff member stood next to the line and I had a quick question for him. Essentially, I'd been led to believe that the GAC allowed the guest and three adults (for a total of four) to use the alternate entrance. My question, "Can four adults (Leslie, Emma, Aunt Dawn, and myself) use it?" As I stood in line, I asked him, "Quick question about the Guest Assistance Card?" Before I could even ask my specific question though, though, he'd launched into a summary of what it was and what it did, and included in his summary was..."the guest and up to five accompanying adults". Question answered, I was satisfied and prepared to stand in line.
At this point, though, he said, "You need to get a card?"
I answered yes, and he pulled me out of the line and filled one out on his clipboard. I asked if I needed to have Lily with us in order to get the card and he said no. So...strictly speaking, if you're rich and morally bankrupt, there's really no reason to pay anyone anything in order to obtain a GAC, because they won't require that you present the person with the disability during the interview process, and they don't ask to see documentation of diagnosis. You didn't get rich by paying people a bunch of money, am I right? Am I right??? So, you're welcome, rich people.
Tip 2: Get the disability sticker for your stroller. We did not initially do this. What does that mean? What it means is, you leave your stroller at the gate then go back and retrieve it when you're done. Some of the alternative access points still require a decent wait, and so if the stroller or wheelchair is being used to aid your son or daughter's ability to wait in long lines...you're hosed. You can't do it. We didn't know this was even an option. Leslie, pissed off at how the day was going, went to give the good people in City Hall a piece of her mind (this comes later, so I'm jumping ahead in the story a bit) and during the course of her diatribe was provided with this sticker to loop through the handle of the stroller, and allow us to keep Lily seated and in shade as we pushed her down the path toward whatever the next attraction was. This proved very helpful and really probably saved the day, because by about 3:00 (about 2 hours after we got into Disney) we were considering leaving. But as I said, this comes later.
My friend Bec writes the most informative and insightful blog about autism that I've come across. Before we took the trip, she sent me a list of tips. Bec knows enough about our family to be able to tailor the experiences she'd had at Disney to our family's needs. The very first stupid thing we did was a direct violation of one of Bec's first tips, "Familiarize yourself with the map." Yeah, yeah, Bec, whatever...I don't need no stinkin' map. So we were figuring it out on the fly...but that was okay, right? It worked at Universal, why wouldn't it work at Disney?
Because Disney is immense.
Tip 3: (With apologies to Bec for not paying attention and further apologies for stealing her idea, but really since we didn't use it and learned from our own mistakes, it's like it's our own tip) Familiarize yourself with the map. Figure out what attractions you most want to see and see them first.
Doing this on the fly, we decided to go to Pirates of the Carribean. Seriously it's going to sound like we listen to nobody, but Dawn kept asking..."Is she okay with it being dark? Is she okay with skeletons? Pirates and stuff?" Yes, yes, Jesus...we know our own kid okay??? Now shut up and go look pretty. After an initial flight on Aladdin's magic carpet, which was the standard amusement park fare...prop attached to hydraulic arm...pull up on handle, prop rises...spins in circle...exit ride. In this case it was a giant magic carpet.
After this, we stood in line for Pirates...and Lily started to lose it. It was dark in the line, and the wait (despite the GAC) was long, and she got impatient and tired, and if it would have stayed there, that would have been fine, but once on the ride she spiraled into terror. Darkness. Loud noises. Scary faces. She was horrified. She was in absolute misery from the moment she got on the ride until maybe an hour afterward. In our defense...neither Leslie nor I (I was 12 when I rode it in Disney Land) recalled it being as dark or as loud...but we still should have known better. Aunt Dawn, to her credit, did not say, "See???" Which was good.
She cried throughout the ride. Complicating things was that people weren't getting off the end of the ride quickly enough, and the boats stopped...three times...we listened to one particular script three times before the boats started moving again. We bumped into the boat in front of us and waited, becalmed, until they got the ride moving again. This just prolonged her agony.
Tip 4: Know your child. Throughout our relatively successful 'careers' parenting, we occasionally forget this. We think...we're here...let's just try this. Where "this" is anything that you should know in your heart of hearts is not something your child would ordinarily like, but you do it anyway to push boundaries. To challenge your child. To seek growth through experience, perhaps. Or even, as my father was always so fond of saying, "to build character". Disney is not the place to fucking build character. The obscenity is directed at me. What does Lily like? We knew the answer to that question. Time and time again over this vacation (Disney and Seaworld) we ignored the answer to the question in order to push boundaries because we were there. Because when would we get another chance to push that boundary? When will we ever be back to Disney? When will she have another chance to ride Pirates of the Caribbean? Who knows..."let's just try this."
No. If this is truly a vacation for the kids, as we said over and over that it was, then it's a vacation for both kids. What does Lily like? Let's find that stuff. Let's do that stuff. We'll go back home in a week and she's be up to her eyeballs in therapy and school and day camp and TSS and OT and all the other shit that we put that poor kid through just to play catch up with the 'deficit' system that is in place in public school...give her a vacation that she can enjoy.
I'm being too hard on myself. In hindsight it's easy to see she wasn't going to like Pirates. At the time we truly didn't think it would be as big a deal as it turned out, and the guilt I feel about how much she suffered on that ride is translated into a rant against myself. But really it's a different take on a familiar theme with autism parents regarding true acceptance of your child. If your kid is 15 and loves to play with Barbies? Then give the fucking kid a Barbie. That is what acceptance is...not giving a shit about social 'norms' and saying, "I want my kid to be happy." So maybe I'm applying that same lesson to the ride. If Lily wants to ride the magic carpet a thousand times in a row...why not? If she likes Dumbo? Why not? We eventually found rides and attractions and joy for Lily in the Magic Kingdom. But that time was still a ways off, and I was mad enough at Disney and myself and the world at large that in my head and heart all Leslie had to say was, "I think we should leave" and I'd have walked back to the train and left Disney behind for greener pastures.
And one more sort of backpedal on this... I'm not saying that "knowing your child" means you should never push boundaries or never try new things, or never expose them to new experiences. I think it probably reads like that a little bit. But there are times to push boundaries and maybe vacation isn't the ideal time.
We tried to regroup. A bunch of stuff happened and I'll probably screw up the timeline, but we went to see Belle in the Beast's Castle. We found a sympathetic staff member wearing a "From Pittsburgh" (all the name tags list hometowns on them) name tag and we bent his ear with out story of woe. He got us into a line for the Castle and we went inside where it was cool and quiet(er). It was still not Lily's favorite, but at least she wasn't screaming about how she wanted to go home.
The storyline was this...The Beast is throwing Belle a surprise party. We need you (all the people there for the attraction) to help us! We need soldiers to march. Everyone march. (all the people marched) YOU! You will be a soldier. (person comes out and grabs ME out of the goddamn crowd, hands me a cardboard cutout of a knight, and tells me to hold it up to my face and march in place at a certain time.) This proceeded...Lily was tagged to be Mrs. Potts, but she threw Mrs. Potts' cardboard cutout on the floor in silent protest. IN YOUR FACE, MRS. POTTS! Emma declined more politely and the role was offered to someone else.
But I was stuck. So throughout the performance I was called upon to march, or bow or say, "merci" or "HURRAY!" or whatever and I did. I daresay I was the best they ever saw.
|The tummy pooch was part of the act...they told me I HAD to do that.|
Lily sat through the performance but was not in love with seeing her beloved Belle in person. Not that she minded. She just didn't seem to love it.
After Belle, we found a place that sold cold drinks and re-regrouped.
|sippin' on gin and juice, laid back, with my mind on my money and my money on my mind...|
We got something to eat at a diner in Futureland and Lily was smitten with the performer, a dinosaur looking alien who played music and who she could dance along with. Then we found Dumbo and road him. Then there was a performance at Cinderella's Castle that really had Lily enthralled. Aunt Dawn took Emma to Space Mountain so Emma could ride, and we took Lily to Dumbo, and then Leslie went to City Hall to give them a piece of her mind, and that's when got the sticker for the stroller.
And we kept stringing little victories together until the Kingdom started to feel a little more magical.
|captivated by Mickey|
|She IS thrilled, maybe the camera doesn't show it...|
|Yes...I KNOW I'm in trouble.|
|Nothing says romance like Dumbo's ass.|
|oh my god...she was SUCH a bad driver.|
We capped the visit off with Small World. We probably should have started the visit that way too. She was captivated. Small World has come a long way...and stayed exactly the same all at the same time. When I visited it, I remember it being dingy and old and faded. This was BRIGHT. The music was cheerful. There were pretty colors wherever you looked, and everywhere...everywhere...music. And Lily loves music, and color...sigh.
|It's a small, small, world...|
Leslie asked whether the characters ever came out into the park and they just laughed at her.
"They'd be mobbed"
They're right. They would be. I read on Wiki Answers that 46,000 visitors visit the Magic Kingdom each day (it's just an average of the annual total divided by days, but still). That's so. many. people.
It was the worst part of the park.
And it was hot. I can't blame Disney for the temperature, and really, if I blame anyone it should be the asshole who booked the trip in August. But it just made the experience that much less of an "A" and that much more of a "B".
The train trip back was faster and better, and there was relatively little traffic on the way home. Day over, we could focus on healing from all that magic. Everyone ended up having fun. But we had to work pretty hard to find it.
(Continued Here: What I Did on my Summer Vacation Part 4 )