ANOTHER Adventure in Autism (4/15) A Taste of What's to Come...

We will be around whenever you get back to this, real life is way more important than DIS life :hug:.


EXACTLY!!! Just when I start to feel really sorry for myself and think that I have it so hard, something pops up to kick me in the hiney and I realize how incredibly lucky I am.

Thanks, Kathy, for that kick this time. Good luck and I really hope this rough patch in the road does not last too long for your family. I'll add my :grouphug: long with the rest!
 
With the family support that Billy gets I am sure he will get through this ruff spot in life and be back to his old self....well not old self becasue it isn't that old..so I guess it would be his young self in no time.:dance3:

Strangely enough, I know exactly what you mean!
(Should I be worried??) :confused3 :laughing:

Thanks, everyone, for all the hugs :hug: and prayers :angel: I appreciate you all! I hope to give individual responses soon... right now I'm trying to catch up on my TR reading, then I'll get back to some writing! :yay:


Love,

Kathy
 
Kathy,

sorry to hear about Billy....it definitly is no fun when your child is just overcome with things/emotions we don't know how to help with. My DS has been struggling lately too, yesterday was real bad completely out of the blue. It pains me that I can't help, don't understnad...he doesn't either.

But then I remember God blessed DS with this and he has great plans and purposes for DS's trials in his young life and for me his mother. In times like these I find I need to turn to Him and to my friends who know...

Know you and Billy will be in thoughts and prayers. :angel:

Miss you.

J-

PS love that Pooh moment....:goodvibes
 

Hey, you guys! :wave2:

I know I've been MIA...between the plans for the addition, looking for a place to stay this summer, and some recent problems with Billy I just haven't had any time to DIS. :guilty:

Regretably, Billy has been having a lot of behavior issues and has been experiencing frequent periods of agitation. It has really been disruptive to the family.

Where has my sweet boy gone?? I lost him once when he was two years old to this god-awful autism and now I feel like I'm losing him all over again. Ed and I always consoled ourselves with the fact that he was generally a happy, joyful child. Sure, his "stims" and "scripts" were quirky and sometimes annoying, but he was always pretty well-behaved and never aggressive.

Now he's hitting and scratching people, constantly breaking things, and in a constant state of agitation. It's like a stranger has taken over his body. Seriously, I should go out to the garage and see if there is a pod from Invasion of the Body Snatchers out there. :rolleyes:

Anyway, sorry to ramble on.... we were at the doctor's today and he's going to try a new medication. (We took him off the other one awhile back and he's been au naturale for months.) I'm feeling bummed...I don't like the thought of medicating him, but for Heaven's sake, he just seems so unhappy and cannot manage his behavior. I hope it will help.

And YIKES!! We're heading down to Disney in less than a month!! :eek:

Well, I know I left off with the promise of details about our breakfast with Pooh at Crystal Palace, so here's a quick pic to tide you over and let you know I have not forgotten you.....


IMGP1788.jpg



(Wow, it was really sunny that morning, wasn't it?!)

I'll be back soon,

Love to all,

Kathy


That sounds alot like my Autistic Step-Son he is now 20. But he has bouts of agitation and gets very agressive also. Especially when a video game doesn't do what he wants or a dvd wont play. Sometimes he will break the game or dvd even and has actually snapped games systems in half (he has done this twice with the PS1) over his knee. He can at times hurt himself so I usually try to get him and restrain him so that he wont and a few times when I have gone to do this he realizes what I am going to do and gets me first and either bites me or scratches me. His teachers have never liked him on any of the meds the doctors have tried in the past because it makes him to quiet and he will not do his work. So we have gone for years with no meds. Of course him being 20 he is now on medicaid which I find a lot of doctors dont like to do much now and I am especially having a really hard time to find a dentist.

So I feel for you... We never know when it is going to happen. Sometimes it just happens out of the blue with no apparent reason. It seems that as he gets older it also happens more frequently... Sometimes I wish he could actually tell us what is wrong. I have felt that maybe it stems somewhat from his mother coming to see him less and less. (she hasn't seen him since his last birthday in June 2007. The longest time of not seeing him was over 2 years) I just wish he could tell us what he is feeling....
 
/
ANOTHER Adventure in Autism: Chapter 19


The Pre-Breakfast Breakdown, ARF Strikes Again!


Patience, n. A minor form of despair disguised a a virtue.
- AMBROSE BIERCE, The Devil's Dictionary, 1906



Tuesday, 11/06/07 The Magic Kingdom.


Having read quite often that the “best” way to experience a character breakfast is to schedule it prior to park opening, I was thrilled (last June) to have scored an 8am ADR for that morning at the Crystal Palace. pooh: The Magic Kingdom was opening at 9am and that surely would be enough time to enjoy the buffet, get our hugs from Pooh and the Gang, and then be out the door and off to FantasyLand before the line for Dumbo got much past a wait of two or three cycles. :dumbo:


More than enough time, that is, if we were simply talking about Ed, the kids, and me. I had not, however, adequately anticipated the effect of the Aunt Rae Factor (henceforth to be referred to as the ARF.)


I know what you’re thinking.


“Hmpff! This year’s TR seems to be more about Adventures with Aunt Rae than about Adventures in Autism!” I know. I hear you.

In fact, later on in the week, when just about all of my patience was used up and I was at the point of despair, I remember making that exact same remark to Ed. I had anticipated Billy’s needs, but this year Aunt Rae was just so…just so…. But, I am getting ahead of myself.


We night owls had all been in bed at a reasonable hour the previous evening. We had our dinner at the WCC, and then spent the rest of the evening hanging out in the villa, just relaxing. :goodvibes Clothes had been laid out, backpacks had been pre-packed, and the alarm clock was set. We even had not one, but two back-ups in the form of Tricia and Ed’s watch alarms! And, since we did not need to eat breakfast before we left, I reasoned that we would be able to get out the door and to the bus stop all the easier.

Not so, when you add the ARF. :rolleyes:


Now, I’m pretty sure you are all familiar with the classic hallmarks of Obsessive-Compulsive Disorders…the extreme repetitive rituals, the germ-a-phobia, the anxiety and nervousness. In fact, the “strange” behaviors and ritualism all stem from deep anxiety, perhaps based in a chemical imbalance in the brain. I see a lot of them emerging in Billy…most likely related, naturally, to his autism.

But, the more and more time I get to spend with Aunt Rae, the more I am convinced that she suffers from OCD. :worried:


Although she wakes up early every morning, she seems to take the longest to get ready. Example: I notice this on Sundays when we pick her up for church. When it’s Tricia’s turn to serve at Mass, we try to get there about 5-10 minutes earlier so she can have time to change into her alb and the priest begins the processional. We usually need to remind AR about it the night before, because on the few occasions when we forgot to do so, we arrived 10minutes earlier and she was not even dressed yet. It seems as though she does not want to “spoil” her clothes and always waits to change at the very last minute. I mean, the very last minute. :confused3 It’s just something she needs to do, even on vacation.


So, needless to say, here we were all dressed and ready to go and AR was still padding around in her bedroom slippers, dressed in her pajamas and her robe. She knew we planned to leave the room no later than 7am, yet she was still futzing around. She looked exhausted. “I didn’t get any sleep last night,” she said, when I asked how her night had been. “And,” she whispered, “I haven’t had a B.M. in three days!”:rolleyes1


(This phenomenon has nothing to do with OCD, just getting older. I know this from years of working with elderly patients.)

“Good morning, Mrs. Jones, how are you today?”

“Oh, just wonderful! I had a really good B.M. this morning!!” :woohoo: And Mrs. Jones would smile and beam as though you were talking to a new mother who had just delivered her firstborn child.


(According to a majority of the geriatric population, Dante really should have named Constipation as the first level in The Inferno.)


Anyway, I discreetly handed over a bottle of Colace to Aunt Rae and after spending about five minutes reassuring her that there was absolutely no contraindication for taking it right after taking the Advil for her arthritis, I gently urged her to get a move on.


About half and hour later, we were finally out the door.


“Aunt Rae takes a really long time brushing her teeth,” Tricia whispered as we moved down the hall toward the lobby (admiring the woodsy theme of the carpet and keeping a sharp look-out for any Hidden Mickeys.) “And, she flosses between each an every tooth, every time she brushes her teeth, can you believe that? And THEN she rinses with mouthwash like 20 times!” Tricia shook her head. “She gets up so early, why doesn’t she do all that earlier?” she wondered aloud.

I sighed. “Your Aunt just has a particular way of doing things…”


:scared1: AAAACCKKKKK!!!!

We both whirled around at the sound. Further back down the hall, Aunt Rae stood there with Ed and Billy, mouth open and both hands on her head.


Don’t tell me; let me guess.


Slippers. Those darn slippers again. :sad2:


“I’m so sorry!” was all she said, over and over. Once again, she had left the room without changing into her sneakers. (That’s another big no-no for Aunt Rae. One never, ever, wears “street shoes” in the house; even when “the house” is a hotel room.)


I sighed as Ed transferred Billy to me and proceeded to accompany AR on her slow walk back to the room. “If the bus comes, just go ahead without us,” he called out.

DOH!! Not the best thing to say, Honey.


Why? Because Aunt Rae could be heard fretting about that all the way down the hall until we rounded the corner. Tricia began to complain loudly about potentially missing the bus. Billy just bounced and yanked my hand and made gleeful Billy-sounds as we headed out the door and quickly made our way to the bus stop. I was just as frustrated, but I tried to set a good example and cheerfully noted that we still had plenty of time, privately hoping that it was true.


Brrrr! There was a bit of a nip in the air so early in the morning! Glad we were wearing our baseball shirts over our tee shirts. I was greatly relieved to find a couple of other families waiting for early “breakfast buses” but feeling a bit of angst thinking of how long it would take Ed and AR to make the relatively long hike and of how flustered she would be once she arrived.

I really didn’t want to get separated, but I decided that if the MK bus did arrive, I would just focus on getting the kids to the park and trust that Ed and his aunt would meet up with us somehow. After all, how many big blonde women would there be sporting a lime-green bagallini and lime green crocs?? :thumbsup2 Anyone could spot me a half a mile away, not to mention being able to hear Billy from half that distance.


I took some deep breaths and concentrated on keeping Billy from getting too wound up. He was laughing and singing and scripting to his heart’s content, mostly because he knows it doesn’t annoy me as much as it does Ed. There were the cutest little girls dressed up in their princess finery, obviously headed for Cindy’s Royal Table. They were just so excited, twirling away and chattering about this and that. Tricia and I both got a kick out of watching them and I reminisced with her about our own breakfast at the Castle that we had done on our first visit to WDW back in ’03.

Tricia was seven then and wanted nothing to do with dressing up in costume, even though she was very excited about eating in the Castle. I sighed. Those princess years go by so quickly! princess: Enjoy them while you can, DIS-friends!


For once, I was glad that the MK bus was slow! Eventually I spotted Ed and Aunt Rae coming along the path. Ed was holding her by the arm and I could see him strain to gently prevent her from trying to awkwardly run as she huffed and puffed her way to the bus stop. “It’s all right, see, the bus isn’t even here yet,” he reassured her, but she had a look of absolute horror on her face. And I know her fear was real. :scared: If there is one thing that Aunt Rae is truly terrified of, it’s that people won’t like her. She imagines that people are always talking about her in a negative way and that they are resentful of her. It’s a touchy subject.


If I was qualified to psycho-analyze it, I would say that it all stemmed from deep resentments she held toward her own mother, for whom she cared for many years without any help from her three married sisters.


Anyway…doesn’t matter….the point is, she is downright petrified at the thought of being “a burden” to anyone. And right now, she was imagining that we were all twenty times more annoyed with her than we actually were. “I don’t want you to say a word, not one word, about the slippers, do you hear Tricia?” She nodded, but rolled her eyes and mumbled something under her breath.

Ah yes, enjoy those princess years while you can!


Ed finally steered Aunt Rae safely through the small crowd and plopped her onto one of the benches. She was a nervous wreck and kept saying, I’m sorry, over and over again and just would not be placated, no matter how much Ed and I tried to soothe her.


I was sympathetic, but after the twentieth “I’m sorry, Kathy, I know I’m ruining everything,” I really was beginning to feel annoyed, not at the stupid slipper thing, but by her endless fretting. :bitelip: Thankfully, the MK bus came and we were able to shift gears and change the subject. I checked my watch: 7:20. Still okay, everything is fine, everything will be all right.


Wait a minute, who’s the one with the anxiety problems here?? I know everything is fine (I told myself.) You see, that’s really the most bothersome thing about being around people who are constantly nervous and fretful… after awhile, if you’re not careful, their anxiety begins to rub off onto YOU.


I called my sister, Marilyn. (Remember back in the PTR how she called too late for an ADR at the Castle at 180 days and didn’t get it? I told her to call back each day and she eventually was able to score.) Well, today was the day their family was having breakfast with the princesses while we were dining with Pooh! We planned to meet up at some point or other so the cousins could do some of the MK together.

Hmmm. No answer. I left a VM.


The bus swayed as we took the curve from World Drive into the bus lanes in front of the MK. It was a glorious day! Who cares if it was a bit chilly…it was sunny, so that would change soon! All the kids on the bus started bouncing and kicking with excitement and calling out, “Where’s the Castle, Mommy?” and the like. I kind of love this part, no one notices Billy going “Eee-Eee-Eee!!” and bouncing in his seat…. They’re all kind of doing it! Heck, I felt like doing it! :dance3:


Our first MK day of the vacation and we were starting it off with Pooh and the Crystal Palace!! The entire day was a fresh page in our story, just waiting to be written. We marveled at how the sun danced on the water in the Seven Seas Lagoon and how much lighter than normal the crowd level was at this hour.


“Tomorrow, we are definitely getting here for the opening ceremony!” I vowed to Ed. He just smiled. Even “Grumpy” couldn’t help but smile as we passed under the track and a monorail train swooshed overhead. As I always do, I tried to read just one or two of the dedicated pavers underfoot…some of them are rather interesting. But, no time for dawdling…unzip all the compartments on the bagallini, here comes the security check. We all breezed through and then I heard Tricia shout, “Emmie!! Beth!! Josie!!”

There was my sister, her husband, and my three little nieces waiting to enter through the “character breakfast only” turnstile!

Naturally, there was much squealing and jumping and hugging as the girls (and Billy) all greeted each other. All three nieces were in full princess regalia, and little Josie, who was just two, squirmed to get out of her stroller and partake of all the hugging and kissing. Marilyn was certain to greet Aunt Rae warmly and we laughed at the lucky coincidence of running into each other so soon. Ed and John shook hands and exchanged guy-type greetings, then we stood back for a moment or two while the kids went crazy, drunk with the thrill of all being together at Disney.

party:

“Okay, you guys, we have to go back to the end of the line,” I said. In our joy, we had committed a bit of a line-jumping faux pas by racing past two families that had been standing behind my sister’s. But, in true Disney style, they all said they didn’t care and that we could remain. “That’s okay,” one woman smiled, “let them stay together!” Thanks, that was nice!

But the partying needed to take a little break as my sister moved closer to the turnstiles and proceeded to gather up the girls and their park passes. Ed and I began to do the same.

“Oh. OH!”

“Oh NO!! Oh NO!! Oh NO!!!! cried Aunt Rae.

I thought she was going to pass out right then and there.


“What’s wrong?” “What’s the matter??” we all responded in unison.
We stood by helplessly as she burst into tears.

"I forgot my park pass!" :faint:


ARF. ARF.


To be continued…..


Kathy
 
WOW, what a cliff hanger. Poor sweet Aunt Rae. It was such great luck to meet your sister like that. I can't wait to read more.

(I hope things are getting better with Billy, you all are always in my prayers :grouphug:)
 
Oh my goodness. I'm so tense at the end of reading this. This is exactly the reason I insist at the end of every night all park passes are returned to me. My cousin & her OCD/paranoid dh went with us one year & did not originally like that I insisted on having their tickets. After all, he's 40 & been living a long time without a Disney crazed woman ordering him around. Well, on day 2 my sister, who is the very put together one in real life, got to the MK parking lot & realized she had forgotten her entire families tickets. From that point on, no complaining from anyone & even my sister didn't complain when I reminded her every morning.

As I like to tell dh, you can get by at WDW if you forget almost every thing else, but if you forget your tickets, no WDW. And it is soooooo easy to do.

Of course, none of my family has ever left the room without shoes on... that's a new on for me. Forget your shoes? Oh dear. I would not be doing well.
 
:grouphug: re the ARF.

I'm glad you met up with the cousins.

Tricia's an altar server? Cool!
 
Patience, n. A minor form of despair disguised a a virtue.
- AMBROSE BIERCE, The Devil's Dictionary, 1906

That is one of the best quotes...how true.

Ugh! I know you don't want to give too much away but I'd have to guess that AR is not going with you this April. I wonder how that discussion was with AR ?
 
Oh No!!!!!!!!!!!!!!!!!!!!!!!!!:headache:

Please don't leave us hanging for too long - I don't want to leave that picture of poor AR in my head! :scared1:
 
Those were definitely not the words you wanted to hear from Aunt Rae!

I have been enjoying your trip report!
 
Just... Wow.

I really feel for you guys.

You are a great writer - because I FEEL the stress and anxiety!

;) :thumbsup2
 
OH NO!!!:scared:

Tha't like the worst nightmare....I know DH will ask everyday like 1000 x's do you have the passports, YES! do you have the passports? YES......

And just so poor AR isn't left alone in the whole slipper thing....in the lately very bluesy/cold Chicago suburbs I wear my "house slippers" all day in the house, granted they're dark grey w/ rubber soles and yes, I wear them out to pick up the twins from school (I don't get out of car) Ok once I did :rolleyes1 , when I had to unexpectantly go in and talk w/ the principal about a hard day for DS. That was slightly embarssing:upsidedow

Wonder how this is going to work out? Can't wait for more!

How is Billy?

J-
 
autismawarenessmonth.gif



Quickie Billy-Update:


Well, we had a pretty good weekend. Billy's been on the new medication for about five days now and he has really calmed down; no aggressions to speak of. That's the good news. The not-so-good news is that he seems really tired in the afternoon and wants to lay down for a nap. Very unusual for him.

Doctor said it was to be expected as he gets used to the med., but, I want to keep an eye on him just the same. His teacher said he was kind of lethargic yesterday at school. When I mentioned this to the doctor, he said, "Well, perhaps that's not such a bad thing, really."

I laughed because when we were in his office last week, Billy was really agitated and kept touching all the stuff on his desk. He even took a little Pez dispenser that belonged to the doctor and bit the head off, he was so angry. :confused3

That reminds me, I need to pick up a replacement Pez dispenser for the doctor... we will be seeing him once more before going to Disney.

Hmmmm. Perhaps a Mickey Pez would be appropriate! ::MickeyMo

So, despite the obvious fatigue, Billy is behaving much better. He even "earned" some Veggie Tales DVDs since he was "a good boy" all weekend. I hope his body gets used to this med soon, because he does seem to be able to handle his frustrations so much better.

At least I'm no longer re-considering the April road trip.

I'd start a PTR, but frankly, I'm having a hard enough time finishing this one, so I think I'll just fold it into this report.

Thanks everyone for your support...I'll be back soon!

Kathy
 
Thanks for the update on Billy! :goodvibes I'm glad to hear the meds are helping with the aggression - I hope the fatigure improves!! Sounds like you'll definitely be taking those mid-day breaks at Disney! I'm so glad you are still going... it might be just what he needs. You have said that he makes major improvements every time you are there. :grouphug:

Happy Autism Awareness Month!! (It's quite appropriate that you posted this update today.):)
 

PixFuture Display Ad Tag












Receive up to $1,000 in Onboard Credit and a Gift Basket!
That’s right — when you book your Disney Cruise with Dreams Unlimited Travel, you’ll receive incredible shipboard credits to spend during your vacation!
CLICK HERE














DIS Facebook DIS youtube DIS Instagram DIS Pinterest DIS Tiktok DIS Twitter

Back
Top