Pre-Trip #32
The Cowboy Way... at Disney!
One of the saddest parts of having an
ASD child is that the distractibility and language impairment associated with the autism make it very difficult to have normal, everyday conversations. The kinds of conversations most of us just take for granted. You say something, and I respond. Then you respond to me.
It’s generally a two-way street. (Well, perhaps not always with a
teenager, but you get what I mean!)
Billy's language skills have improved greatly over the past six years. We can communicate with each other, but only on a very basic level. At one point, he only utilized a form of speech known as
echolalia, which means he would only mimic what was said to him. Kind of like a parrot…all he did was repeat what was said to him.
"How are you, Billy?"
"Howyou, Billy?"
This gradually faded away as he became involved with a structured
ABA (Applied Behavioral Analysis) education program and speech therapy. We also found the echolalia diminished and eventually disappeared when we removed
casien (a protein found in milk) from his diet.
But, many glaring language deficits remain. If I want to talk to Billy, I need to get
right up in his face and tell him, pointedly, to “look at me!” so he can focus on me and on what I’m saying. Sometimes I even need to cup his face in my two hands so that I can adequately engage him. If I simply call something out to him from across the room, he hears, “Billy, Gvoeha;b?hru88%ll:^%m!!
Normal (or “neuro-typical”) people can process all the stimuli from the environment in their brains. It simply overwhelms Billy. It must be like hearing constant static on your radio.
To drown all this out, he makes persistent humming, shrieking, and screeching sounds (
stimming). It’s almost as if he is literally trying to hear himself think. Consequently, the rest of the family experiences static on
their radios!
The soundtrack of our daily lives includes a constant background of Billy’s stimming noises, which only disappears when he falls asleep. Or if he gets temporarily “stuck in a groove”:
"Go to the library?"
“The library is closed today, Billy. We will go to the library tomorrow.”
"Go to the library, please?"
“Good asking, Billy, but the library is closed. Tomorrow you will go to school, then you will come home on the bus, and then you will go to the library.”
Go to the library, PLEASE, mommy?"
“Billy, first comes sleep, then comes school, then comes library.”
"First, sleep. Then, school. Then, library!"
“Yes, Billy.”
"Hooray!"
Five minutes later....
"Go to library?"
Needless to say, “conversations” with Billy are a lot of work! (We're still reserving judgement on whether the medication is helping him... so far it doesn't seem to be.) When the family is sitting around the table and we are all talking together, Billy is usually content to simply eat his food… trying to join into a four-way conversation is just too far beyond his ability. But, that doesn’t mean we stop trying.
For instance, last night Ed, Tricia, and I were talking about plans for our nomadic summer, specifically, where we should camp with Eddie before we head down to
Fort Wilderness. (Our choices so far are two weeks in the
Great Smokey Mountains in N.C. or two weeks at
Myrtle Beach, S.C.) Tricia’s vote was for the beach; mine was for the mountains, and Ed’s was undecided. I put down my fork and turned to Billy, who was busy shoveling food into his mouth. I got his attention and asked,
“Billy, do you want to go to
vacation at the
beach, or do you want to go to
vacation in
the mountains?” I said “vacation” because I wasn’t sure he would understand what I meant if I used the word, “camp”.
I was fairly sure he would choose the beach, because he loves to swim, but I was really just trying to include him in the table conversation.
He did not answer (not unusual.) He just hummed. I tried again. “Billy, look at me! Would you like vacation at the
beach or vacation at the
mountains?” This time, it seemed to register and I got a
definite response!
"No
No No!" 
"No beach!!"
"No mountains!!"
"I want vacation at Walt Disney World!!"
Wow, that came out loud and clear!
We all laughed. “That’s my boy!” I chuckled. But he seemed a bit upset. “Go to Walt Disney World! Go to Walt Disney World,” he shouted. “Whoa, whoa, hold your horses, buddy!” Ed laughed. “We’re still going to Walt Disney World!”
We had to reassure him that we were still going to WDW for our vacation in a few weeks! He finally settled down. I think the question must have confused him a bit. When talking to Billy, I’ll just concentrate on
one vacation at a time from now on! However, I
loved the fact that my son was quite able to let us know that
WDW was the
only vacation destination for him!
It really made my day.
I know you’ve heard me say it before, but it bears repeating. Billy just seems to light up when we’re at Disney. He still has his issues, for sure, but he just seems to be able to
participate and
communicate so much better when we are there. I’m sure that a lot of this is due, not only to the practical accommodations, such as the
Guest Assistance Card, but to the incredible
Cast Members who take the time to make Billy feel special, but at the same time just like any other kid there that day.
This is one
special memory from last year’s trip… this time I’ve added pictures!
….Western music blared as a horse-drawn wagon led Woody, Jessie, Bullseye, and a group of brightly costumed cowboys and cowgirls as they sang and danced their way up the street. They stopped right in front of us!
The music and dancing got Billy's attention right away!
They sang a rousing greeting to the crowd, “Hey, Howdy, Hey!” and everyone clapped and cheered. We formed a large circle around the performers and the characters walked around for a moment, waving and giving high-fives. (Or in Bullseye’s case, high-hooves.)
The members of Woody’s two-steppin’ posse then went among the crowd looking for kids to help out with the next number, “She’ll Be Comin’ 'Round the Mountain.” Tricia and Billy were chosen, but Billy didn’t want to leave us, so only Tricia went over to the wagon with the others. We explained to the cowboy that Billy was autistic and might not be able to participate, anyway. He understood and said, “I’ll come back later, pardner!”
The younger kids were given hobby-horses and the older kids were given special prop hats. Their job was to play the part of mountains and other obstacles for the little ones to ride around. Tricia was given the part of an
old mine. (Take a close look at her hat!) She was not exactly thrilled... there's nothing too glamourous about an old mine!
We all sang along as the little ones rode their horses in and out between the older ones. It was really cute! Naturally, all this was accompanied by a whole lot of stompin’ and whoopin’ and hollerin’ from the cowfolk.
When the song was done, the kids returned to their places and we were all introduced to a “newfangled dance” called the
Hokey Pokey! Billy began jumping up and down excitedly. He knew the dance from school! The same cowboy from before came back and started doing the Hokey-Pokey with us. Billy was laughing and dancing and having such an obviously good time that he attracted the attention of one of the pretty cowgirls. She came over and, surprise! Billy reached out to her and said, “Let’s dance!” WOW!!
She kept him fully engaged throughout the entire dance!
It was time for the troupe to leave. The cowboy and cowgirl praised Billy for doing such a good job with his cowboy dance. I told them that Billy really liked Woody and had even dressed up as
Woody for Halloween. When the cowboy heard that, he brought Woody over to say hello! Billy was thrilled and gave him a big hug!
Those CMs made that one little show such a wonderful experience for both the kids, but especially for Billy. Once they realized that he might not be able to participate in a group with the other children, they made it a point to seek him out and to include him in the fun. It became one of my favorite memories of the entire trip!
"...That's what it's all about!"
*Sigh*.... Can't wait to go back!!
Kathy
.
I'M INTERESTED!!! 6 WEEKS, YAY!! 
I always loved that. My wife is horrified by this news as our daughter has played at their house.
They’ve been stalking me for days now… it was only a matter of time before they got me. I am now at their mercy.
Oh well. It was worth it to get all those hugs and kisses from my Billy. 
(Ah, it’s still the little things that can make her happy!) 
My plan is the same as last years’: First go to the Magic Kingdom and cheer him on there, then hop on the monorail and zip over to EPCOT for the finish. I easily found a nice viewing spot in the MK, but it was very difficult to find a good viewing spot once I arrived at the finish. Reserved seating sounds good to me! 
