The Cast: (con't.)
BILLY
Most of you know my DS,
Billy, from past TRs, but for the benefit of any new friends here, it is important for you to have a little background info. As the title suggests, this trip will be yet another in a string of endless adventures for a family touched by
Autism.
Dont let the creepy spider image frighten you; feel free to post or PM me if you have any questions
.the others will tell you that I dont bite!
You may (or may not) know a lot about ASD (Autistic Spectrum Disorders), so let me tell you a little about my son
Warning: This is a Kleenex Alert
Billy was diagnosed with
PDD (Pervasive Developmental Disorder) shortly before his third birthday. Up until the age of about 12-18 months, he hit all the expected developmental milestones and was pointing, talking, and walking as well as any other child of that age. He was a happy, healthy, normal baby boy. Then, slowly, things started to change. At first, the changes were barely imperceptible, but by the time he had reached age two, he had changed completely.
He no longer used any words and made only sounds to communicate. He no longer held my gaze. He developed a strange sort of gait
he walked up on his toes all the time and seemed to just go round and round the room as if on some sort of invisible track. When he was excited, he would do what we (then) laughingly referred to as the dance of joy. He would bounce up and down and wave his arms about in a flapping motion.
He stopped eating a lot of foods
their texture or smell seemed to bother him. What he would eat, he would stuff and stuff into his mouth to the point he could not even chew it and he would gag. He had strange behaviors, such as sniffing objects and people, and he seemed to be putting more and more things into his mouth to chew on
even more than when he had been a baby.
He did not play with his toys appropriately. There was no imaginative play, he just gravitated to infant toys with lights and sounds and he would sit and push the buttons over and over. Even so, he could not tell me what his favorite toy was
nor his favorite color
nor his favorite video. He was two years old and he couldnt tell his Mommy anything at all.
Obviously, he was not developing normally. At the time I really knew nothing about autism. My understanding of autistic children was that they sat in a corner all day, saying and doing nothing, just living in their own little world. And that description did not seem to fit my child.
I was confused; I did not know anyone who had an autistic child and this was right before the media began paying some attention to the epidemic.
At his routine 2 ½ year checkup, I finally insisted that my pediatrician order further evaluation. After a long and frustrating multi-disciplinary evaluation process, were given the vague diagnosis of PDD and a list of Special Ed pre-school programs in the area. It was devastating. I remember talking to the case manager assigned to Billy once after visiting one of the schools and trying to express my concerns:
I just want him to be able
.to be able to
.to
I searched in vain for the words I was looking for. The social worker nodded as if she understood and finished my sentence for me:
to be able to function in society. To. Function. in. Society.
Thats when it finally hit me, full force. This was way, way beyond a speech problem. Before that moment, I hadnt realized that there was any question about whether or not he would be able to
basically function in society.
It was so hard, so very hard to accept. We all gaze into our newborns faces and dream such wonderful dreams for them. I had the same dreams for Billy, and now they were crushed.
He would never be captain of the team; never play organized sports like his big brother.
He would (most likely) never attend regular school. And if he were ever to be mainstreamed, the kids would make fun of him and label him retard.
He would never have any close friends, in the traditional sense. He would never date girls. Relationships were out of the question. He would never have children of his own.
He might never even be able to live independently.
It was a dreadful, horrible time
a time of profound grief. We grieved for the normal child who was born to us and for some unknown reason, had slowly slipped away, never to be seen again. It was 2001, the same year as 9/11. What a horrible year.
Im surprised I didnt wind up in the loony bin.
Good Heavens! Ive probably frightened away any newcomers with all this
.sorry
..it gets better, I promise! Were getting to the Disney part!
So, lets fast-forward to 2003. This is the year that Billy turned five. It was the year we were officially given the diagnosis of AUTISM. And, it was the year we discovered
Walt Disney World.
Ed had been to
Disneyland as a child and to WDW as an adult. I had never been. He would always talk about how great WDW was, how much he knew that I would love it, how it was far superior to ordinary amusement parks, how beautiful the resorts were, etc. etc. I mentioned in my other TR that he had even wanted us to go there for our honeymoon.
Never having had the opportunity to visit the World, I was tempted. But I was uncomfortable with the idea because he and his ex had gone there for their honeymoon, so we chose another destination. We put the idea on the shelf, thinking that we would enjoy WDW as a family once we had children.
When the kids were very small, going to WDW was out of the question for financial reasons. But, as they became older, I felt that it had really become the perfect time to take them and that we should make every effort to do so. But I was concerned about Billy. Would he be able to tolerate all the stimulation? Would he even enjoy it? Would we?
Im a big believer in faith, trust, and pixie-dust, but there was no amount of pixie-dust that could magically take away Billys autism for a week. We would still have to work around his needs and manage his behaviors while on our vacation.
Back in the fall of 03, Disney began advertising a seven-for-four deal similar to what they are running now. I began reading every guidebook I could find (this was pre-DIS
in fact
.it was pre-internet for me!) I learned that WDW was highly accommodating to guests with special needs and that with a certain amount of planning, I could hope to avoid meltdowns and other problems.
The timing was right. Disney needed to bring in business and our family desperately needed a magical vacation. I booked the trip: seven nights at the Caribbean Beach Resort.
We did, in fact, have a magical time! Billy was five and Tricia seven. Other than him being a bit skittish around non-face characters, Billy did exceptionally well at WDW. In fact, his language ability seemed to be stimulated by the experience and his teachers remarked how much he had blossomed after returning from vacation. (We took them both out of school for a week in September b/c I was anxious to go at the time of lowest possible crowd levels.)
Well, you can guess that WDW was a success, because here we are: Disney Vacation Club owners planning our sixth family trip. And Ed was right; I did fall in love with it!
And so did Billy. 
To be continued
Kathy
I know I can do it, just hard to get motivated some days. But, I totally have the 3 sets of clothes like you described. 
that the pirate lass costume works! Whoo hoo!
I was in HS when he was top dog and so remeber that, I think I even had a pair of pants like that (not gold but still bad enough). Plus one of his songs from a movie about a monster family...well that just brings back a gazillion of laughable memories! 
The nice thing this time of year is it's easy to get outside for walks 
Glad I didn't get caught in the rain, but it made me miss my walk. 
I'm so glad you're planning a family trip to WDW and hopefully you can take something away from my reports that will be of some help to you!
