More Is Expected
I came to grips a long time ago with the fact that not everyone at our local school board understands autism. After all, we had to jump through so many hoops for Kaitlyn that I am comfortable saying that very few people there understand it. I am not ok with it, but I have come to understanding with that particular fact. Autism is the “mystery” or “invisible” disability.
A lot of people do not understand or recognize autism because it rarely is very noticeable. Because of that, individuals with autism are often forgotten about or excluded from inclusion when it comes to awareness or accommodation.
But of all people, places, or companies, I expected more out of Disney. I rarely, if ever, click on links that I see on Twitter. Maybe it is out of laziness, or maybe it is because a lot of what is written is written by people like me, and is often from a place of hurt, fear, or misunderstanding. But there was something about that particular link that just made me click it.
I am happy, but also not happy that I clicked it. You can read for yourself by clicking here.
To sum up a well-written entry, the mother that wrote the blog has a son with autism. She knew from past experience that they would be able to get a pass that would allow them to bypass some lines and ride rides quicker. Since a lot of autistics get squirmy in crowds and can approach major meltdown status in lines rather quick, it makes sense. (Kaitlyn qualifies for both the squirmy and potential meltdown). They acquired the pass, but were turned away at not one ride, but at four different rides by cast members that seemed like they could care less that they had the pass. Maybe they thought it was a fake pass because autism is not as obvious as so many other disabilities. Whatever their reason, it was deplorable behavior, and, at least to me, is representative of how the Disney company feels about autism and those with autism spectrum disorders. Thus, this is how they view Kaitlyn, in my opinion.
This part of the blog bothered me as much as the rest, if not more, because of how true it rings:
Receiving a disabled pass at Disney is of less concern to me than how my son and his fellow autistics are perceived and treated, and not just by Disney. Disney symbolizes the general population’s and business world’s view. If Disney, the company that sets the bar for how disabled persons are treated, prioritizes physical disabilities and treats non-apparent disabilities with distrust, then imagine how worse other places will treat them. If a member of the general population at Disney shouts at an autistic child for going through the disabled entrance at an amusement park, where everyone will ride as many rides as they want all day long in a pleasant, stress-free environment, imagine how they will treat an autistic when they feel threatened by a perceived loss of income, job position, taxes, or services.
The truth is that the general population would rather remain ignorant about autism. It is easier to stereotype autistics based off of Rain Man than it is to sit in front of a computer for ten minutes and do even the most cursory of searches to educate themselves. People say that ignorance is bliss, but I think that ignorance is an excuse to be lazy.
Heartbroken and Disappointed
Kaitlyn loves anything Disney. She loves going to Disney, playing with Disney character toys, collecting Disney plush characters, and watching anything Disney, especially Disney Channel. And boy was she excited when she saw the ads running for the past month or so that informed her that there would be a channel dedicated just to the shows that she loves (Jake and the Neverland Pirates, Chuggington, etc.). She could not wait for March 23 to arrive.
Last night, she was so excited that she insisted that it was time for bed, well before her regular bedtime and well before the bedtime she has had during Spring Break. She was bouncing all around the house as the excitement and anticipation continued to build. She just knew that when she woke up this morning, she would be able to watch the Disney Junior Channel, and watch it all day (if she were allowed to).
But alas, she awoke to heartbreak and disappointment. Because we have Direct TV, we will not be getting that channel. Kaitlyn was devastated. Once I came home from work, Amber and I all but decided that we could not let her little heart be broken too long. We, and, judging by the messages boards on Direct TV’s website, will be switching providers. Seeing the disappointment and heartbreak that Kaitlyn had today is not something we want to make a habit out of.
Always the Comedian
One thing about Kaitlyn is that she is always brutally honest. Ask her a question, she gives you her answer. Sometimes her answer is completely unrelated to the question, but it is a small glimpse into her thought processes.
She is also quite the funny child, and I don’t think that she is necessarily always trying to be. Again, it is just her stating whatever it was that popped into her head at that given moment.
We have had two such comedic moments in the last week or so, and I figured I would share them.
The first happened when we were in Avon Park for Amber’s family reunion. We were sitting outside of Amber’s Granny’s house with Kaitlyn, and Kaitlyn’s Papa and Gran. Kaitlyn had the idea to play the game “I Spy,” so we went along with her. When it got to be my turn to spy a color, I chose to spy something gray. No sooner had I spied something gray did Kaitlyn come back with, “My daddy’s hair!” That, of course, brought uncontrolled laughter from everybody.
The second brush with Kaitlyn’s comic genius happened Tuesday when Amber picked her up from the Sprague’s house. As they were driving home, the following exchange took place: Kaitlyn: “I wish I had a Disney princess for a mom.” Amber: “What about me?” Kaitlyn (while rolling her eyes): “Uggh, I want a new one when you turn 100.”
There really is never a dull moment around here.
A Milestone Week
Kaitlyn turned 5 this week, and we let her choose what she wanted to do for her birthday. Way back in March, she knew she wanted to go to Sea World and to Hollywood Studios for her birthday, so that is what we did. We went to Central Florida in June to walk amongst thousands of people in stifling heat an humidity…and we had a great time. More importantly, Kaitlyn had a great time.
Sea World was our first destination, and since she had not been there before, Kaitlyn had really studied the map and knew where she wanted to go first. She wanted to ride the “Shamu Express.” We got to the park shortly after it opened at 9am, and first took care of checking in with Guest Services to let them know about Kaitlyn’s Asperger’s; Sea World provides accomodations to those on the autism spectrum. Kaitlyn was fine with us heading there first, but insisted we head to ride the “Shamu Express” immediately after. So we did just that and attempted to navigate what might be the worst laid out theme park ever. One big problem reared its head right away…for some reason, the kid’s area did not open until 10am. We wondered why they would make kids wait, knowing that most would probably be excited to ride rides designed just for them. Kaitlyn was not happy about having to wait. Once it opened, we headed straight for the “Express,” which is a kid-sized roller coaster. Kaitlyn loved it, and we rode it twice in a row. She also spotted the huge net-climb they have, and insisted on going all the way to the top. Of course, you know who (me!) climbed with her up nets and through tunnels until we were both covered in sweat.
Sea World went wonderfully for the entire day, with only a few minor hiccups. Kaitlyn enjoyed the Shamu show, the seal and otter show, and the dolphin show. She really enjoyed watching the dolphins swim from the underwater viewing area (and even named one Archie), she was disappointed she could not pet a dolphin at the feeding and petting area, so we headed over to the area where you could feal the seals, thinking she would enjoy that. She was all excited about tossing fish to the seals until the birds swarmed and scared her, causing a minor meltodwn that left me emptying the fish tray for the seals. We then went to the Manatee Rescue attraction, which disappointed Kaitlyn greatly because she did not get to rescue a manatee herself.
Our destination on day two of Kaitlyn’s special birthday was Hollywood Studios. Kaitlyn was more than happy to give me the directions to ensure that I made it onto Disney property correctly, and took the right turns to get to Hollywood Studios. The first thing we saw was Disney Junior Live on Stage, featuring Kaitlyn’s new favorite show, “Jake and the Neverland Pirates.” She concentrated hard on the story and helped throw Minnie a surprise party. After the show, we were first in line to get her picture taken with Handy Manny, and she was one of the first to get her picture with Leo from the Little Einsteins. But those two characters were not enough, and we had to make sure to go back a few times so she could get a picture with all 4 of the Little Einsteins. Once that mission was accomplished, it was off to meet more characters. We were able to get right in (for Disney) to see both Mickey and Pooh. From there, it was ride time, and we headed for the Backlot Tour ride. Almost from the word “action,” Kaitlyn was not a fan; she had a minor meltdown after the first controlled explosion or two, with a major meltdown coming soon. If you have never been on the ride, one of the features is the tram going “on set” where a tractor-trailer is in a valley, and then they create some effects….effects like explosions and floods. Well, the explosions were cause for a meltdown and Kaitlyn could not get far enough away from the “set.” After walking around and getting some lunch, my parents, who were enjoying the week with us, went over to the stunt show. Kaitlyn wanted nothing to do with getting anywhere close to the stunt show because of her experience on the backlot tour. Meltdown averted…for now. There was another meltdown on “The Great Movie Ride” when there were some simulated gun shots.
Amber and I talked a lot about the two meltdowns at Hollywood Studios, and are convinced they were complete meltdowns and not just a case of being scared of the loud noises. The explosions and fire, etc. shook her up pretty bad. Make no mistake about it, the meltdowns were just a minor bump in the road for the week, and Kaitlyn enjoyed herself plenty at Hollywood Studios.
This week was a real good test of how far we have come as a family since Kaitlyn’s diagnosis. There is still some frustration that we cannot seem to get through to her sometimes when things are not as she planned, but there was so much success in allowing her to determine the sequence of events. Amber and I have made a lot of progress in enhancing Kaitlyn’s experiences; we understand that a different approach is needed sometimes, and that we have to be flexible and patient (two things I struggle with..more on that another time) with her. We were happy to have witnesses to Kaitlyn’s intelligence as well. As we were driving around, I heard, on multiple occasions, fascination with her ability to read signs and point us in the right direction. Not only did Kaitlyn continue educating Amber and I this weekend, I am fairly certain she provided an education to my parents as well.
