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Old 02-13-2009, 06:49 PM   #31
KathyRN137
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Talking Hello!

mrsksomeday: Aww, Tracy! You're such a good friend!

All7OfUs: Ahh, someone with a big family! Welcome! (I'm the oldest of six children, BTW!)

DisMomAmy: I'm trying to pace myself with the reports...thanks for the AR support!

Halloweenqueen: Oh, I love that picture! (I knew the title of this PTR would catch your eye!)

elphie101:
Thanks so much for coming out of Lurkdom to say, "Hi!"

askelton: Goodness, if MNSSHP is half as good as MVMCP, I'll be thrilled!

eyeheartgoofy: Thanks! I really needed that!

Hedy: Tricia's answer was just like your posts: short and sweet and right on point!

mousescrapper: Thanks, you're right of course, but I'm still not ready to break the news just yet!

melk: Thanks for sharing your mom story. I agree, I don't want AR to think we are rejecting her, personally.

mom2mek: I like Heidi's idea, too...

MRYPPNS: A weekend trip...what a great idea! Leave it to you to suggest a spoonful of sugar to help the medicine go down!


to all my DISfriends for your caring and support!!

Kathy
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Old 02-13-2009, 07:02 PM   #32
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Quote:
Originally Posted by KathyRN137 View Post
MRYPPNS: A weekend trip...what a great idea! Leave it to you to suggest a spoonful of sugar to help the medicine go down!
Kathy
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Old 02-13-2009, 08:15 PM   #33
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I think you are doing the right thing concerning AR. Maybe something closer to home could be planned for the future. Then she would feel like October's trip is for Catie and the X trip is for her.
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Old 02-14-2009, 07:00 AM   #34
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I am here for your pre-trippie!!!
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Old 02-14-2009, 05:54 PM   #35
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I agree with your thoughts about AR. I think it is the best way and wish you luck in letting her know.

Great report(s) so far. Keep it up!
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Old 02-14-2009, 07:08 PM   #36
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Arrow A Halloween Adventure in Autism: a PTR

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.

Don’t 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 don’t 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 couldn’t 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.


That’s when it finally hit me, full force. This was way, way beyond a speech problem. Before that moment, I hadn’t 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. I’m surprised I didn’t wind up in the loony bin.


Good Heavens! I’ve probably frightened away any newcomers with all this….sorry…..it gets better, I promise! We’re getting to the Disney part!



So, let’s 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?

I’m a big believer in faith, trust, and pixie-dust, but there was no amount of pixie-dust that could magically take away Billy’s 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
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Old 02-14-2009, 07:16 PM   #37
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I knew that it would make me cry. Billy is super lucky to have a family like yours and a terrific mom like you!
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Old 02-14-2009, 07:33 PM   #38
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I've said it before, but Billy (and Tricia, for that matter) are lucky to have parents like you and Ed.
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Old 02-14-2009, 07:39 PM   #39
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Arrow a Halloween Adventure in Autism: PTR



Billy (con’t.)



Billy has made a lot of progress over the past eight years since that first evaluation. He will be turning eleven soon and he is doing fairly well academically. He reads at a beginning third grade level and his math is at fourth grade level. He loves to sing and he performs in the school chorus, The Notables, and is often chosen to sing solo.

His language skills have improved, but he is not what one would call a good conversationalist! He tends to be very frugal with words, even though he knows how to use them now. We have to encourage him to “use his words.”

“Water?”

“Billy, say the whole thing.”

“I want water, please!”


He attends a school for developmentally disabled children and receives Speech, Physical, and Occupational Therapy. We also enroll him in after school or Saturday programs for sports skills and socialization. And we take him to WDW every year.

Too bad I can’t get that placed on his Individualized Education Plan!!

And so, if you are going to be following along on our latest Adventure in Autism report, I need to clue you in to some vocabulary so that you won’t get confused. I tend to sprinkle these words around the reports and I sometimes forget that you may not know what I’m talking about!


Stimming: This refers to a range of self-stimulatory behaviors. Billy does them almost constantly! It is not clear why, but stimming helps some ASD kids to both center themselves and burn off excess energy at the same time.

Billy used to chew on things all the time and put stuff in his mouth to stimulate himself orally. This is because his mouth and tongue are undersensitive and he is trying to feel sensations there. (This is also why he tends to “overstuff” his mouth when eating, unless he is supervised.)

He is getting better with this as he gets older, but now he is gaining weight because he likes to always be chewing on goldfish crackers, teddy graham snacks, etc. It’s not great, but better than when he used to chew on inedible stuff that could make him choke!


Now he stims mostly by making lots of noises. He is partial to EeeeeEEEEEEeeeeEEEEEE, AhhhhAhhhhAhhhhh, and MmmmmMMMM! It can be annoying if you aren’t used to it (and sometimes even if you are!) Like most kids, he gets louder when he is excited or tired.


His stimming also includes sniffing objects and people, especially their hair. Fortunately, he tends to limit this to people he knows…I’m not sure how I would manage it if he ran up to strangers in the grocery store and began to sniff them! He does like to sniff the WDW characters, however, so we always warn them ahead of time at character meals and meet & greets.


Another form of stimming is scripting. This refers to bits of dialogue and songs from his favorite DVDs and TV shows that he recites randomly and repetitiously. For some reason, he finds it comforting. Like the above, it is often socially inappropriate and can be off-putting to strangers.

There is a certain element of ASHD (Attention Deficit Hyperactivity Disorder) in his spectrum of autistic behaviors. He can also be quite rigid about things such as food preferences and he can be very ritualistic. Things need to be done in a certain way all the time and change throws him off.


Nevertheless, he always, always has a fantastically great time at WDW. And as long as we keep the Billy factor in mind, we do just fine. It’s worth it to see him jumping up and down doing his funny little “dance of joy” And there isn’t a living soul who wouldn’t break into a smile after hearing his big, raucous chuckling laughter.

Because, in spite of everything, Billy is touched by magic when he is in the World.

He can be (just) a kid again.

Kathy
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Old 02-14-2009, 07:44 PM   #40
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Thanks, Hedy and Laura for the (always need lots of those!)

But, I'm not so special when it comes to being a mom...I just love him as hard as I can, that's all!

Kathy
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Old 02-14-2009, 07:51 PM   #41
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It is so wonderful how well Billy did on his first trip!

I thought I had planned well, but boy did my son struggle on our first trip (he had just turned five)... We also struggled with a stomach virus for the first half of our trip, so we just don't know how much was Autism, and how much was stomach virus...

We're going to try it again in October - My husband and I think that knowing what to expect from "Disney World" is half the battle...

Don't get me wrong, we had some really great moments - but our trip was HARD. it was WORK. I'm hooked anyway!

Thanks for writing this, I enjoy your trip reports so much!
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Old 02-14-2009, 08:42 PM   #42
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Billy.

I started to do research about a possible trip and stumbled upon Kathy's trip report. I was apprehesive about taking my eldest son to WDW, I thought it would be too much for him. Finding Dis success stories, like Kathy's, gave me the confidence to give it a try. We have been back three times in the past year and a half. It has been a magical experience for our family.

Kudos to Kathy for sharing her story!
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Old 02-15-2009, 06:42 AM   #43
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Thanks for sharing your story so openly Kathy!!

I too stumbled across your reports when I was looking for information prior to our October 07 report. We had been to the World without kids, when Alex was a baby and for a short 3 day visit when Alex was 5 and Zachary was 2 so I had some information, but I really needed more. Thanks for bringing me to the DIS!!

And for anyone out there who wants to PM Kathy - no she doesn't bite!
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Old 02-15-2009, 06:54 AM   #44
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Thanks for sharing about Billy, Kathy! You have a very special little boy, and you and Ed are awesome parents!!!

It is always amazing to me that WDW always seems such a wonderful place to everyone -- it really must be magical!
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Old 02-15-2009, 03:19 PM   #45
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Kathy, thank you so much for sharing Billy's story with us again. I've followed along with all your reports as they hit close to home.

DS8 was diagnosed PDD-NOS before entering 1st grade. He had been attending special ed preschool and getting services in kdg without an official diagnosis but he had to have one for 1st grade. I will never forget that appointment with the neurologist. I went alone as DH was working, we knew that there was "something" not quite right but when the neurologist gave the diagnosis it hit me like a ton of bricks. DH had to remind me that he was the same little boy, nothing had really changed except for the label.

We are fortunate as our Daniel is very high functioning, works at or above grade level in all his schoolwork and this year has actually taken an interest in other kids. He is a sensory seeker, thank god for chewing gum! On those tough days that seem to pop up out of nowhere I have to force myself to keep in mind how far he has come and how lucky we are.

I also have to share that my DS looks an awful lot like your DS. Same posture, same physique just different hair color. When you used to only post pics from behind I even showed DH how much they were similar. It's uncanny.

We went to WDW this past Oct, our first time at this time of year. We had a complete BLAST at the MNSSHP and I look forward to hearing all about your trip and how Billy likes it.
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