In 2007, soon after my son turned two, my family and I booked a trip to Walt Disney World to enjoy the magic for a week at The Polynesian Resort. After having open heart surgery and navigating the new world of special needs, Dalton was just barely a toddler who also happened to have Down Syndrome and a repaired heart defect with an exceptional open heart surgery within his first year. Now that he was stable, we wanted to celebrate a magical moment in the Happiest Place on Earth!
Entering the park for the first day, we headed right to It's A Small World, and a cast member stopped me while I was in line.
"I see you have a Special Guest there!"
He was smiling at Dalton, explaining that Dalton could get a Disability Pass at the Guest Services near City Hall at the entrance of Main Street as well as a Wheel Chair pass for his stroller. Suddenly, this little brother came with perks. For the first time, we had a VIP with us, and in a place like Disney World, this was a wonderful experience! I left with Dalton and we came back with his new Pass. We walked up to the flying elephant ride of Dumbo, and as soon as I went to sit down with Dalton, he screamed and wanted off immediately. The rest of the family rode, and Dalton and I just waited while waving at everyone else. Then, again on Winnie the Pooh ride, as it went indoors and the sound of tinkering honey pots and laughter seemed to rattle Dalton, he stood up looking for a way out which resulted in an interruption and a loud voice on the speaker asking everyone to sit down during the duration of the ride. Everyone else was enjoying the experience.
Everyone, but the VIP.
Disney World became the 'Aha' moment when I started to notice Dalton had some major sensory issues. These issues were the baby steps to a possible dual diagnosis. Almost 10 years later, I now homeschool Dalton with the help of my Mom who was a Special Education Teacher to provide more one on one instruction. He started having melt downs on the way to school, anxious and scared. Being mostly non verbal, we never knew what caused his constant anxiety that induced Dalton to throwing up in the car line every day.
We never went to movies, and entertainment that was in a dark or noisy place like Rainforest Cafe became avoided. You would think in the midst of these abrupt changes, my daughter would resent her brother for the lack of family experiences like that Magical trip in 2007, but this Mom struck gold when Bella Grace was born. In the past five years of becoming a single Mom, I've been really blessed and have been able to take both of them, with my Mom to places like Dollywood and Universal Studios. We still haven't been able to enjoy the parades, or indoor shows. We avoid fireworks, but Dalton has some sensory seeking behaviors that have him begging to ride Spinning rides that give him the giggles, and leave us in stitches. The kids' laugh is infectious, like a little Minion!
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Dalton at Universal, absolutely up to no good. |
We've found ways to enjoy time in amusement parks, except for ONE. Just the thought of the expense alone, is enough to give me shingles. But a few years ago, one particular event changed the way families can anticipate going to the Happiest Place on Earth.
In 2013, one wealthy Manhattanite Mom was caught red handed 'renting' the disabled for a Golden Ticket to the front of the line at Disney Park attractions. Many kids, whether those who have Autism or a myriad of different disabilities that affect their ability to remain in long lines for extended amounts of time can't handle the wait. Melt downs occur and unlike typical toddler melt downs, these rank high risk because they can affect a persons ability to regulate heart rate and blood pressure. It can send some families to the ER instead of the front of the line. Instead of a Disability Pass, which let the guest and his or her party of up to five guests walk right up to the front, they now get a return time after scanning their Magic Band. I've read enough Op Ed pieces, omissions, retractions and Pinterest posts to know that this was Disney's way of fixing their system and in some posts, it also meant that thousands of kids and adults with disabilities were paying for the shameful actions of an opportunistic 'Rich Bitch'.
Yep, I said it, and I was boycotting Disney.
When the chance to take a trip of a lifetime with the kids came up, I thought of the new exceptions we learned to make when visiting Universal Studios, and I booked it.
I took a huge risk and booked a trip for Walt Disney World.
I might regret this.
(To SKIP too many details, skip ahead to the *) because it's all going downhill from here.
My Mom was really apprehensive about going, so much so that she backed out of the trip a month before going. Even at Universal, where there are more rides and parades and explosions she left the experience wanting to hibernate when we got back to Nashville.
But, we're making memories! They might be bad ones, but we've never really had a horrible time when traveling with Dalton. We usually cry, but laugh later...
Dalton started to become obsessed with Mickey Mouse and Friends, Big Hero 6 (He's got the hand bump down packed) and don't even ask him about Doc McStuffins unless you want him to babble about Stuffy and Lambie for hours.
We can do this.
Two weeks of prep, laundry, lists, escape plans, Disney blogs, reservations, and personal words of affirmation, my little Jeep Compass was packed, or rather stuffed shut. Upon leaving, I made everyone promise to not open the trunk of the car until we were there. I had four people's luggage and a Special Needs Stroller. It was nothing short of a miracle.
12 Hours later, we rolled in!
Our Magic Bands checked us in and we went straight to our room to unpack, eat up and take some melatonin before our first day in the Park.
Memorial Day Weekend, what was I thinking?! Once we drove into the parking lot for the Magic Kingdom, we had two choices; the longest line in the world for the Monorail or the longest line for the Ferry Boat. We got into the Ferry Boat line, and Dalton started getting antsy. It was already hot with a heat index of 100*, I reached for the Bose Noiseless headphones but he was fighting me and we hadn't even gotten into the Park.
Just Keep Swimming, became Just Keep Sweating, just keep sweating, sweating, sweating...
First of all, if you have chosen any Fast Pass selections (like we had) your Disability Pass will interfere, or at least ours did at The Dumbo Ride. The ride goes from an outside line to a dark hall that leads to an indoor playground. Dalton immediately got scared and wanted to run, we tried to let him just go under the ropes but got yelled at by cast members who were waiting at the next Fast Pass stanchion to scan our bands inside. After trying to explain that Dalton was scared, the frazzled girl just made things worse with her tone and Dalton got worse. And then, the calm came over me.
'Thank you for your kindness' and I said it right to her wide eyes. She immediately backed down letting me take the band with me to scan it as Dalton went outside with my Mom back into the line.
My memory took me back to our first time here, this was the ride Dalton freaked out on. He walked out onto the platform and into the elephant. Triumph number one. He was buckled in.
The rest of the day was hot, and everyone was melting into the Fantasyland pavement. When we finally got into one of the most coveted restaurants in the park, 'Be Our Guest', our little Beast was on his way to a meltdown. We could not get in to find a table for our reservation until 2:15 exactly. The park was so packed, cast members were not feeling magical that day and you could tell that most of them were just 'maintaining'.
I hurried through the contents of my 'emergency bag' to get Dalton's headphones as the sounds of excited guests and screaming children bounced off the slick floors and coffered ceiling of what was blogged about as the 'quietest' room in the restaurant. The headphone slipped off my finger as I tried to spread them over Dalton's head and it snapped on his nose. What followed, was a roar so loud that it quieted the entire wing. The kid was definitely in character, and I sat red faced as I got the second attempt over his head. Dalton regulated from Hulk status, his face softened and his lunch soon arrived. A plate of orangey meatloaf, but there were his favorite; french fries.
By the time the dessert came, I was buried in my Masters Cupcake and it's true, the gray stuff is delicious.
So, our first day in the park was nothing short of a small disaster but we did what many recommended and went back to the hotel for a swim. I found a Mimosa. All was right with the world again.
Dalton wanted to stay at the hotel, so I took the opportunity to take Bella back to Magic Kingdom that night to ride our Fast Pass for the Seven Dwarf's Mine Ride. It was so worth it!!! Bella got some uninterrupted fun, and we enjoyed my favorite attraction a few times, The Haunted Mansion. It still reminds me of my childhood when I enjoyed Disneyland. People are just dying to get into that place, and I love it when they cut you off at the door and say 'Don't worry, your time will come'.
Bella was able to enjoy the Haunted Mansion gift shop that semi rivals Olivander's Wand Shop when they turn your picture into a ghost from their mortal portal. She added a fun new set of pins to her collection, and upon entering the attraction one last time we realized that the Madame Leota pin glows in the dark! The spirits were very mischievous that night, because her pin disappeared in the ride.
The rest of the day, I saw people yelling at Cast Members and knew that the Magic was slipping. There's no way most of these people waiting on masses of hot, disoriented parents were getting paid enough to take the abuse dolled out at them by patrons who paid a high premium to be in there. There were $100 complaints, everywhere.
Day One, the park is a lot more fun when the sun goes down!
Ice water, Ice Water, Ice Water (available at any quick service restaurant for free)
This Disability Pass thing is a real Bummer.
*Now, this post is titled "Why I will never post anything kind about Disney World" because of what happened the next day..
Disney's Hollywood Studios is not my favorite park, but it is definitely a step up from Animal Kingdom where there were't many things our entire family could enjoy. If Dalton could handle the sensory aspects of 'Finding Nemo" the musical I know he would love it, but watching it on YouTube seemed to satisfy him. As amped up as I was to enjoy Star Wars weekends, no one else shared my enthusiasm so we went Monday.
It was even hotter. After the gentle monsoon showers part and the sun comes out, it's a sauna for the senses!!
The Art of Animation has places to meet your heroes, and Big Hero 6 is a huge favorite for both kids. Luckily you can see them from the glass on the top level, and the overwhelming sensory aspect of your favorite character with huge head translates into one nugget of wisdom..
"Sometimes, it's best not to meet your hero"
At 50 feet away, the scale is still big but not terrifying.
This is another buddy we made at the park, he and Dalton both needed a sensory break!
In the Courtyard near the Disney Junior Playhouse Live Show, there is an area where each character sets up with a photographer so that kids can meet them up close and personal.
Dalton saw the Doc McStuffins corner, and the rest is history.
Here's where everything gets extremely frustrating in writing this.
This is why I will never post anything Kind about Disney World.
What happened next, shattered me.
We got a disability pass for the next showing of Disney Junior Live. The game plan was;
1. At least get him inside.
2. Get the Noise Canceling headphones on.
3. Try
4. Emergency Exit- Stage Left or Enjoy the Show!
We never made it inside. We got in the line, and Dalton started melting down. The cast members were kind enough to let us out, and they went a step further to try and make a little magic for Dalton because they knew after we had come up once already for his Fast Pass, Dalton was a huge fan. Steven and Ashley, as well as two other Cast Members there with them that day did their best to get him to smile. He watched Doc McStuffins from a distance, take pictures with other kids and give them hugs. He was too scared. It was too much, and then Ashley said 'Wait right here' and she disappeared. When she came back, it was with an autograph from Doc McStuffins.
You would have thought Dalton won the lottery, he smiled (Score!).
Stop, wait a minute. Things got even better.
Unfortunately, I can't tell you what happened. I can't fully describe the joy of what Dalton will call the "Best Day Ever!!" because of Kindness.
Kindness, is now used as currency and it absolutely wrecks me.
Being a person with a disability means that most days, the world is not a Kind place. When organizations like Disney make special privileges for people like Dalton, it means going to a magical place where you are treated like a VIP even if only for a day. Unfortunately, people who already have privileges of wealth, health and success take advantages of this kindness, and when they do, they take advantage not only of a system, they take advantage of the disabled.
If I tell you what happened when I went to thank Disney Hollywood Studios at their Guest Services for the kindness of Ashely and Steven, I'm afraid someone will use it as currency to get something that they want. What followed after going to see Aaron at the Guest Services window to praise two amazing Cast Members, shattered me. Dan Cockerell, if I could have thanked you face to face I would have.
Now, what blessed us is nothing as extravagant as a free stay but it absolutely shattered this Mom into a thousand tears. The kindness was overwhelming, and I have to pause because I'm crying once again recounting the details in my head.
People abuse systems meant to be gifts, and as of recent there are active lawsuits against Disney because of the reformed system they now use for the Disability Pass in place of their previous one.
But, Disney didn't disappoint especially when it came to my daughter who is 12 and not easily entertained anymore like she once was at the Bippity Boppity Boutique on our last trip in 2007.
Bella lost that Madame Leota pin she was so excited to buy, and when we went to replace it at the gift shop on our last day, it was only available in another $25 pack of pins. When we went to buy another mystery box that was cheaper, hoping something similar might be inside, a sweet Cast Member named Bianca stopped us before we could get rung up. Apparently, Madame Leota was very fond of her merchandise and Bianca told my daughter that the spirits were tricksters. She and her coworker Katie told us to look up around the store into different glass globes as different spirits looked everywhere for Bella's pin. Each appeared, and then a bell rung from a cabinet. When Bianca reached inside next to Madame Leota's portrait, there was a great white light and just inside the sleeve of an envelope.. was Bella's Madame Leota Pin.
(Okay, that's enough Kindness. Shh, don't tell anyone!)
Dalton and Bella's wishes were exceptionally granted, and our experience is a memory none of us will ever forget.
That Monday in Disney Hollywood Studios I stood there, watching my son in his moment as sobbing tears rolled down my face. I couldn't speak, but if I could tell you everything knowing that no one would ever use it in their own favor, I would. But for now, I will never post anything 'else' that is KIND about Disney World, but if I see you I won't hesitate to tell you what happened...
The final Magical Moment happened on our very last night in Magic Kingdom.
We were going to pass the ride by, but Dalton wanted to go inside. A Cast Member told us that because Dalton had a Wheel Chair pass on his stroller, he could get in the wheel chair accessible boat on It's A Small World After All.
The ride he was terrified of.
And then this happened...
Dalton got in the boat.
The Cast Members clapped for him, and don't tell anyone about this Kindness (they let him go twice).
Yes, I cried again.
I drove home Friday, bug bites and tired eyes, trunk stuffed shut and memories packed, it's an exhausting trip. There are highs and lows to any vacation, and for all of you parents with kids that have had magical moments at Disney World, I now understand why you exhaust yourselves to do it all again.