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Friday, December 20, 2013

It's Beginning to Look a Lot Like Christmas

Autism-Friendly Santa, a tradition worth keeping.
If you've read my posts around the holidays you've probably seen a recurring theme of "create new traditions".  It's essentially the idea that as parents we have the power to create our own traditions for our children that make their holidays magical.  They may not be the traditions that we grew up with, and that's hard, but ultimately we want our kids to look back and remember how amazing the holidays were for them, not for us.  I don't think I'm alone in this.  Having an autistic child thrown into the mix sometimes means that big divergences from past traditions are required.  Things that were "fun" or "nostalgic" for us might be "stressful" or even "traumatic".  So you make changes to traditions and they become new traditions, and your new traditions are inclusive of everyone in the family, and you create magical memories for all, the end.  Or at least that's the idea.  

I moved to Pittsburgh in 1994.  I met my future wife at an apartment complex Christmas mixer the second week I moved here, and was invited to a Christmas party at her apartment the next week because of my immense personal charm (that's not a euphemism).  That year was the first Christmas I ever spent apart from my parents.  It was the first of many new traditions I would adopt moving forward. 

After that first year one of the traditions my girlfriend and I (yes, spoiler alert, I started dating that very same girl again based on my immense personal charm (that's not a euphemism) less than a year later) adopted was the Murphy Party.  I'm sorry...this is the Murphy 'Christmas Party', which is not to be confused with the Murphy 'Pool Party' (held in the Summer) or the Murphy 'Superbowl Party' (held in February).  After that first year we dressed in our finery and attended the party held at the lovely home of the charming couple whose children were my wife's childhood friends and who welcomed me lovingly into their midst.

Holiday calendars fill up quickly every year, but our schedules always hold certain placeholders determined months in advance: my company Christmas party, her company Christmas party, and the Murphy party. 

Every year their friends fill their house, three generations, then four, each new year ushering in joyful additions and yes, sometimes too, heartbreaking losses so dear I can't touch them even so many years since.  The children grew from young adults to middle aged in front of our eyes while we stared dumbly at our unchanging reflections in the mirrors at home that night and wondered how we alone escaped the ravages of time, even as they went home and stared in their mirrors and wondered the same of themselves. 

The children my wife grew up with have now had children of their own, and we're seeing them grow up together in the shutterstop motion of the Murphy Party, each new yearly click of the shutter an explosion of growth and development that staggers our minds and causes us all to exclaim in a way we SWORE. TO. GOD. we would never..."They're growing up so fast!" (at least nobody pinches their cheeks...yet)

And listen...this Murphy Party...it's special.  I'd call it a "Pittsburgh" thing, but I don't know Pittsburgh things, I'm a Montana boy.  It's more specific than that.  It's not a "Murphy Thing" either, per se, because it's common among everyone on the invitation list, this inclusion of all, this breaking of circled hands in order to admit still another to their familial ring.  It's a common theme among a group of good people, of the best people, but it is best illustrated perhaps by the most regular and predictable of the get-togethers among that group of people, "The Murphy Party".

When my sister moved to Pittsburgh she was included.  When my parents moved to Pittsburgh, they were included.  And it was all done as simply as breaking hands, shuffling to the side, admitting new people to the circle, and then clasping hands again.  Think of the Whos down in Whoville clasping hands and singing "davu doray" but much ...much drunker.

So the tradition begins like this:  We dress up, not "too" fancy, this is Pittsburgh, after all, we don't put on airs, Steelers and/or Penguins attire is considered dressy enough, but a Santa hat is recommended in that case.  We drive to the South Hills.  This is the hardest part of the tradition, since the street map of the South Hills was done long ago by an Italian pasta maker who partially cooked spaghetti, threw it into a ceiling fan and confidently announced wherever a noodle landed, "Dere you build-a de road!" This makes navigation problematic.  But many trips mean we have become infinitely familiar with the criss-crossing spaghetti noodles specifically designed to get us to the Murphy House.

We arrive and are greeted at the door by whoever happens to be nearest.  We remark with horror at how beautifully the living room is decorated and immediately begin fortifying our defenses lest Lily make a bee-line for the most breakable or most expensive of the decorations (this fear ends as soon as we leave the house hours later).  We remove our coats and take them upstairs to the spare bedroom.  We exchange greetings with the main floor people.  These people hover around the alcohol and cookies.  It is here where we are offered our first drinks.  We migrate down one flight of stairs.  We exchange greetings with the people in the family room.  These people hover around the christmas tree, and the hors d'oeuvres, listening to Christmas music and gossiping over egg nog as they deftly defend the children from the fire...or the fire from the children.  We migrate down another flight of stairs through the office where the children gather around the Wii or Playstation, into the rec room, where the beer crowd, a louder version of the family room group animatedly discuss the woeful Steeler offensive line over still more hors d'oeuvres, and Rolling Rock, or Corona.

And the overarching theme is Christmas and family and friends, food and drink, generosity and all the hugs, hugs, hugs, hugs.  And we separate as a family then, Emma naturally sliding in beside the other children, holding court in her fashion, a loud voice, a joke teller and natural clown, it is fun to see her in this element, among a group of kids her age, slipping seamlessly back into stride alongside her peers, joking and mocking, and being mocked in turn.  We leave her to her own devices and take turns with Lily moving between the groups, but settling for the most part with the calmer family room crowd, keeping Lily happy, taking turns escaping for drinks or food until at last the various families produce (amazingly) Christmas presents for all the children.  And then the families with smaller children begin to slowly slide away, thinning the herd in a sort of reverse process...hugging the huggers again this time in parting, moving from the rec room to the office, collecting stray children, scolding them into thank yous where necessary, up the stairs to the family room, another flight to the living room and kitchen, collecting the coats, starting the car, and hugging the last few stragglers before driving home on the spaghetti noodle express to the more orderly understandable North Hills of Pittsburgh where we make our home.

It's a great group of people.  It is a tradition that Emma has adopted as firmly as any in our home.  To consider not attending the Murphy Party is like considering not having Christmas Eve dinner at our house.  It is more than tradition...it is a requirement.

And yet...for the fourth year in a row, the entire family will almost certainly not be attending the Murphy Party.  Little Lily is sick.  This is the third straight year that she's gotten sick before the Murphy Party.  Prior to that there was a snowstorm that stopped any of us from going.  It has, of late, been more of a tradition not to attend the Murphy Party than to attend it.  But...we will not let our partial absence become the new tradition.  This is not a tradition we're creating. 
Lily as of this very minute...ish

The Murphy Party tradition has been one that already had all the built in adaptations required to generate warm nostalgic memories in our children's (future) heads.  Love/family/inclusion/understanding...some traditions are worth keeping. 


Thursday, December 12, 2013

Racing to 20

Alright, so on a whim, I bet someone on Facebook that I could lose 20 pounds faster than she could, and then opened it up to the world, which is why I'm sitting in my office right now, my lunch forgotten at home, eating tofu soup for lunch.

I made the bet on the spur of the moment and sort of cobbled together rules.  Weigh-in was yesterday.  I weigh 194 pounds.  If I'm being honest, when I made the bet I thought I was actually about 205.  I think 185 is a pretty decent target.  Weighing in at 194 was a bit of a surprise, pleasant in a way, but also daunting...because 174 is low, not gaunt or anything, but I haven't been 174 for three years, and I'm not getting any younger.
(pants not shown for clarity)


Regardless of the wisdom of the decision, it won't hurt, and even if I lose the bet, the lost weight on the way will be a win.

This is really day 2.  I forgot my lunch.  Ordinarily that would be a big hurdle, because when I eat out I eat the absolute worst stuff...(see hamburgramsx100 on my instagram feed).  So today I decided to eat at my favorite little Thai place but order pho instead of my usual pad thai.

Pho is "Vietnamese riced noodles with jalapeno pepper, bean sprout, scallion, red onion and thai basil in lightly seasoned beef broth with lime and cilantro for garnish."  Yes.  This sounds like me.  Then because ordering soup for lunch isn't diety enough...I picked tofu as my protein, eschewing chicken, beef or shrimp.

When I picked up my order the kid behind the counter said, "would you like any chopsticks with that?"

And I looked at him quizzically and said, "Isn't it soup?"

He looked sheepishly back, shrugged and gave a little laugh, "Yeah."

"Can you even do that?"

"You can try."

"Yeah, alright, throw some in."

I got back to my office and opened up the bag.  Inside were four containers:  a large container of soup, a smaller container of rice noodles, and two condiment sized plastic containers of jalapenos and sriracha sauce.

Stimey, if you're reading this, first thing I have to do is apologize for mocking you in D.C. for putting ketchup in your soup.  I mean, we knew it was sriracha, but it was funnier to pretend it was ketchup.  So apparently, it's a thing.  You get pho...you dump sriracha in it.  So I dumped the whole container in.  And apparently they bring you jalapenos...I don't know, i missed that part of Stimey's meal...so I dumped all of those in too.

And then I drank the liquid fire which immolated my esophagus and reacted violently with my stomach.  Think Mauna Loa, but localized in my stomach.  There were rumblings, and the villagers fled.  Now we wait and pray for the dawn.

Yes, you add sriracha.  Yes, you add jalapenos.  But nobody mandates that you must add all of both.

I mixed the noodles into my magma soup and got out my chopsticks.  If you are to eat this soup with chopsticks (it IS possible...mostly) then you should know that there is much slurping and slobbering, and splattering, and that if you have an iPhone, your warranty will not cover moisture damage and you should move it.  Also, do not order this soup on a first date.
liquid hot magma, but to eat!

Ultimately, I'm proud of myself for ordering soup instead of a cheeseburger or pizza or whatever, and the bonus is that I feel confident that my stomach contents are even now being totally liquified and I'm going to be doing an involuntary "cleanse" at some point today which I'm hopeful will not be during the commute home.

Bon Apetit!


Wednesday, December 11, 2013

Do-It-Yourselfer

I'm not handy.  I'm not inept, but I'm not handy.  I'm also somewhat disorganized when I tackle projects.  It's weird, because I'm often paralyzed by organization leading into a project, researching methods, reading instructions, gathering tools, purchasing missing items, and then the project finally begins, and it's like those comic strips where the dog and the cat get into a fight and there's a giant cloud of dirt and lightning bolts and spirals come out of it and you are led to believe that some major shit is going down.  Only it's with tools and papers and pencils and ..."apparatus".

So my hot water heater broke down.  It's new as of July, and my dad and I installed it, but I paid him in beer, so when I called for technical assistance and they asked whether it was professionally installed I said yes.

Apparently though the problem had nothing to do with the substandard contractor I paid and everything to do with a defective damper valve.  They promptly arranged to ship me a new one after I explained what was going on with error lights and sight glasses and funny "PING!" noises.  Regardless I was able to get the heater going within a half hour of talking to them and when they sent the new damper assembly to me I figured I'd have a "spare".

The part arrived a few days later and I took it down to my basement to store.

Two days later the water heater stopped working and I couldn't get it started.  Leslie and I were headed out to Christmas shop, but my in-laws needed hot water to give Lily a bath.  I decided I'd immediately install the new damper assembly. 

What followed was essentially a complicated shell game, but where there were no shells, and the ball underneath was actually a flash light.

I had a screw driver, a flashlight, and a set of instructions.  I put the flashlight down to open the instructions.  I closed the instructions and couldn't find the flashlight.  I found it on the floor and picked it up to look at the screws holding the assembly to the top of the water heater.  I shone the beam on the screws as I loosened them.  I put the flashlight down to collect the screws.  I couldn't find the flashlight.  I found it on top of the refrigerator and picked it up to shine it on the hood.  I saw sheet metal tabs that needed to be bent back from the hood in order to remove it.  I set the flashlight down and climbed on a stool to bend the tabs.  I removed the hood and couldn't find the flashlight.  I found it on the toolbox.

This went on until I finished installing the damper.  Every time I would put down one tool in particular in order to use a different tool...the first tool would disappear.  Typically it was the flashlight.  In the end I couldn't find the flashlight but we were in a hurry to get out the door and so I just stacked everything on top of the dryer, restarted the hot water heater, saw with pride that it lit and remained on, and went shopping.

The next day I started a load of laundry, so I cleaned up the tools and instructions, sliding them off the dryer, putting the instructions away on a shelf and depositing the tools in the toolbox.  I ran the washing machine and came back a half hour later to transfer it to the dryer...

...which is when I found the flashlight, clean as a whistle, in the drum of the washing machine with the clean clothes.  Big credit to maglight...it still works.


still works!

Monday, December 9, 2013

Black and White Language

At the last Summer Olympics, NBC's running anthem was Phillip Phillips, "Home".  They played it non-stop.  It's a cool song, and appropriate, but like any cool song, after you've listened to it a few dozen times, it starts to get old. 

My recollection is that initially Lily liked "Home".  We even downloaded it to play on her ipod.  But when we played the song and Lily saw Phillip Phillips album cover come up, it terrified her.  She recoiled from it, backpedaling and warding it off with a shaking hand.  Here's the offending cover art:

http://www.phillipphillips.com/music
I have no idea what the issue with this image is, but she does not like it.  She associated the song with "America" and uncomfortable side effect of this was that anytime the song played, she would loudly proclaim, "I no like America!  I hate America!" 

So on occasion Lily would blurt out that she hated our country, and while it amused me it also made me a little nervous.

This past weekend I picked her up from her dance class.  She loves dance class, but the pick up process in the hallway is cramped and crowded.  People jostle for position, picking up backpacks, putting on sweats or jeans, or snow boots or whatever.  While trying to talk to the instructor, and being introduced to the new BSC and TSS I was also attempting to transition her to the bathroom so we could change or at least have a potty break before heading to McDonald's for lunch.

One of her classmates was sitting on the bench next to Lily, I guess maybe too close for Lily's comfort.  Honestly, she had lots of room, but I think it was just a bit much all at once.  Lily's reaction to this was to tell the little girl, "I don't like the girl.  I want the girl to leave."  As the mother watched, I attempted half-heartedly to "cover" for Lily with, "Oh, Lily you know you like her, you just don't like putting on your shoes," or something to that effect.  Lily countered with, "I don't like that girl," and honestly I was just too flustered with the whole process to even attempt to engage the mother with any sort of face-saving on Lily's behalf or peace offering to the little girl, who did not react in any overt way whatsoever to any of it.

I don't know, I guess that was a daddy blunder, but I just couldn't process which thing to take care of first, and so I responded by getting her out of the hallway, quickly changing her shoes, saying goodbye to her grandparents, gathering her things and getting her into the bathroom.  I felt bad leaving this weird..."I don't like that girl" thing lingering, but I just have to have faith that the mother understands how a special needs dance class can bring a unique mixture of ...offensive/touching moments into close concert with each other and pray she "gets it."  We'll make peace next week.


Okay, put that in your back pocket for now.  Sometimes Lily doesn't like things, and she tells you, loudly, and she doesn't understand how it might be interpreted.  Please don't take the leap that suggests to you that it means she lacks empathy.  It's not about empathy.  It's about expressive speech.  She didn't like the girl sitting so close to her but lacked the words to say, "please scoot over."  It was just pissing her off, so she expressed it in a manner that made sense to her.

Alright, meanwhile...

Upstairs downstairs...black and white.  Lily has trouble with upstairs/downstairs.  I get it.  It's got to be difficult to put it together.  I wish I could understand how the human mind does it.  When you're standing at the top looking down, then the main floor is downstairs.  When you're standing in the basement looking up, the main floor is upstairs.  Climbing or descending isn't even a thing with her really.  She just goes upstairs.  And you as her caregiver need to understand that upstairs means downstairs depending upon where she is, and where it is she wants to go. 

I don't know if the upstairs/downstairs thing is similar to the autistic pronoun issue.  It reminds me of that.  Lily does that as well.  She uses "you" or "she" for "I", and sometime "I" for "you".  For example, She holds in her hand a sippy cup.  Her arm is outstretched.  She says to you, "I want to hold."  She pushes it toward you.  She wants you to hold it.  You can get that from the context, but sometimes she isn't pushing it toward you.  "I want leave", in the context of the bathroom may be her asking you to give her some privacy.  As a related sidebar, there are a couple fantastic posts about autism and processing pronouns, but the concept of you/me, I/you, my/your reminds me a little of this perspective shift.  If you have the time I really recommend both of the links:

Jon Brock:  http://crackingtheenigma.blogspot.com.au/2011/08/curious-case-of-reversed-pronoun.html
Bec Oakley:  http://www.snagglebox.com/2012/09/me-myself-and-i-decoding-pronoun.html
(with CARTOONS!!!!)

But I digress.  Upstairs/downstairs...black and white.  She is typically really good with colors, but for some reason she has issues with black and white.  She often identifies the color black as white.  I know I kind of went astray talking about the upstairs/downstairs thing, but really it was to try to lend context that some things we have just been dealing with for a while, word concepts that seem easy to some people Lily struggles with.  Up/down black/white even yes/no to an extent...it should be simple, right?  It's not though, and so we gently nudge her in the right direction when she opens the door to the basement and says she wants to go upstairs when she means downstairs. 

"You want to go downstairs, Lily," we say.  Or you mean "black" we say, when she's pointing to something black but calling it white.

Lily watches dance recital videos every day.  (I swear to god I'm getting to my point.  If you made it this far I applaud you.)  She identifies the recitals based on the colors of their covers.  We have:

Rainbow Recital:  2009
Pink Recital:  2010
Purple Recital:  2011
Orange Recital:  2012.

She also identifies the dances by the color of the costumes.  There are some dances she has no interest in and asks us to skip over.  Some dances she asks for specifically. "I want to see red girls," she requests, and I dutifully skip to the spanish dance where the girls are dressed in red dresses.  We're almost to the point where I know the track number of each dance so that when she asks for "yellow girls" I know that it is the 38th track on the "rainbow" recital.
Lily before dance class, practicing her pirouettes with pink girls.

We were watching a dance that we often skip.  Four girls in black costumes danced to a contemporary background song.

"I don't like white girls," Lily said.

I groaned.  This was my cue to skip to the next dance.  I began to automatically correct her, "No Lily, you don't like bl-..." and froze.  Did I really want my filter-less 8 year-old loudly proclaiming her dislike of "black girls"? 

(envisions) "I don't like black girls.  I no like them.  I hate black girls.  I want black girls to leave."


I'm not positive where to even start on that one.   I mean, I guess really it's pretty intuitive, get white and black and just work with her on the colors.  Before I started to correct her though, and realized how my correction made me sound like I was indoctrinating her into some white supremacist organization , it wasn't really in my top 10 list of things to work with her on.  Except that...I really can't have her saying that she doesn't like black boys/girls because nobody who would require that explanation would believe that it wasn't something she didn't pick up from listening to her racist parents.

I can picture the scene..."Oh, she doesn't mean mean black people, she means the outfit they're wearing, and um...she...doesn't know the color white from black."

Suuure that's what she meant you racist bastard.

I'm confident that we'll get this all squared away, after all, she no longer tells us she hate America, now it's been corrected to Phillip Phillips.

Thursday, December 5, 2013

Puzzling Dry Spell

Whenever I don't hear from "autism parents" for long stretches I can be relatively sure of one of two things.  1)  Things are going really well, or 2)  Things are going SO bad that they can't surface for air without gulping more water.  So as I blow the dust off the blog page and try to remember my password you might be wondering..."I wonder which one it is..."

Well, truthfully it's neither.  But a bit of both.  Really it's never a good idea to over-generalize stuff. 

We've been very very busy at home, but Lily has been a PEACH.  In fact she's been so much of a peach that I've started calling her "Peach" and it makes her smile and giggle.  Really her behavior is so much more predictable and understandable, and her expressive language seems so much better and clearer, and she's so much more interested in the things we give her to entertain herself (perhaps because we're getting to know/understand her better) that there's really not a helluva lot to report.

So anyway...Just saying hey.  Sometime this month we'll be going to the Autism-Friendly showing of Nutcracker and we'll be getting pictures taken with the Autism-Friendly Mall Santa, and probably tossing back a few Autism-Friendly glasses of wine with the family as things get more chaotic and we finish off shopping and Christmas partying and stuff.  And that all means that doubtless there'll be more stories to share then.

Emma has a chorus concert and a dance performance at the mall and a play where she is the "Ghost of Christmas Presents" (not present...presents...like a gift). 

And Lily has been LOVING her dance class, and that love manifests itself in the following way:

"Daddy, when are we going to dance class?"
"Saturday, baby."
"Daddy, when are we going to dance class?"
"Saturday, Lil."
"Daddy, when are we going to dance class?"
"I told you, Lily, it's Saturday."
"Daddy, when are we going to dance class?"
"Lil, when do YOU think you're going to dance class?"
"Daddy, when are we going to dance class?"
"Saturday, peach."
*Records self saying "Saturday, Lily"*
"Daddy, when are we going to dance class?"
*Presses play x infinity*


So yeah, when I say things are going great I don't mean to say that Lily doesn't still present us with unique ways in which to experience parenting, I'm just saying she's happy and having fun and when she's happy and having fun it's much easier for us to do same.

Oh...and we went to see "Frozen".  I really really liked it.  Lily seemed to enjoy it as well.  


Oh...and also, a brief story.  We have a quasi tradition of doing a holiday jigsaw puzzle every year.  I say quasi because it ends up working out to about once every other year because we forget to buy the puzzle, or whatever.


So this year we did it again.  Emma really drove it.  She likes jigsaw puzzles.  So we started at the edges and found all the flats and we put them on the table and slowly worked toward the middle once we had the border done.  I assume that's how everyone does them, but I don't know.

Well, early on we couldn't find this one edge piece, but it's a 1000-piece puzzle, we knew it would turn up.  This was a hard puzzle.  Every so often we'd stop working on it for a few days and then spend an hour in the evening on it and get a little bit more done.  Finally we were putting finishing touches on it.  That sort of a fun time in the puzzle where nagging pieces you've been looking for the whole time suddenly fall into your fingers and you're like EUREKA every piece you add.


But...after a month of that...





Still missing.  And at the time I posted on Facebook something about how appropriate it would be for a family that spends so much time wondering about puzzle pieces...They're appropriate symbols, they're offensive symbols, they represent something missing, they represent something that we don't have an answer for...to be stymied by an ACTUAL puzzle piece.  Like somehow puzzles, frustrated by the treatment of their pieces decided to take action and frustrate us for a change.

So anyway, whatever your feelings on the puzzle piece as a symbol for autism...I think we can all agree that it sucks ass to be missing one at the end of the puzzle.

Wednesday, October 23, 2013

What's the Matter? Chicken?

(2 weeks ago - at the kitchen table)

"Hey Emma, guess what?"

"What?"

"I ordered my Halloween costume."

"What are you going to be?"

Leslie chimed in across the table, "He's not telling us until Halloween.  Cause he loves surprising us."  Her voice dripped sarcasm.

"Guess!" I said to Emma.

"Chicken costume."

I barked a startled laugh.  "That's exactly right!"

"You've always wanted a chicken costume, Daddy.  I remember you saying that last year."

I looked meaningfully into her eyes and said, "That's right, Emma.  Good call."


(Present Day)

So maybe you're not surprised to find out that I've been waiting impatiently for my chicken costume to arrive.  Well it arrived. 

Leslie made me wait until after I'd eaten my dinner to try it on.  Emma groaned audibly, but I'm not sure who was more disappointed between the two of us.  I put on a brave face and pretended to be the adult.  "That's right, Emma, have a seat at the table and let's eat, and I'll try it on after we're done."  But inside I was thinking..."This is so stupid.  Why can't I just put it on now??"

So I finished my dinner and by that time everyone had forgotten about the chicken costume except me and I said, "Hey, Les, do you mind if I just run upstairs and change into something more comfortable?"

"No that's fine," she said disinterestedly.  I could tell she had no idea what I was getting at.

"Okay...I'm just going to go up and change clothes then..." I shifted my eyes to her, then the box by the door, then her, then the box by the door.  I waggled my eyebrows up and down.  "Huh?  Huh???"

Emma looked up from the table. Her eyes followed my eyes...to her mother, to the box, to her mother, to the box.  It probably took longer than I expected for her eyes to light up and her smile to widen.

Leslie rolled her eyes.  I went upstairs to change.

This chicken costume is the best.  It's all furry (feathery) and chickeny, and my sole disappointment is that the chicken legs don't extend all the way down to my feet because I'm too tall.  There's a little exposed ankle there.  And what am I?  Whore chicken?  No.  I have my modesty.  I need orange socks. 
stay classy...


I put the costume on and walked downstairs.  Lily was happily watching TV.  I walked into the room.  Leslie shook her head and called to Lily.  "Lily...guess who it is?"

She turned from the TV to look at me.  She was startled.  She said, "Uh oh."  I have no idea why.  But it was funny.

I sat down on the couch.  Emma loved it.  Lily was not so sure.  She wouldn't come near me, but she also couldn't take her eyes off of me.

"Come here, Lil, it's Daddy.  It's okay."

Leslie guided a reluctant Lily over to the couch.  She had a huge smile on her face, and was giggling, but she was also vibrating like a harp string and seemed ready to flee if Leslie stopped herding her toward me.

She accepted a hug and then retreated a safe distance.  She hovered, never taking her eyes off me.  Emma snapped a few pictures.  Leslie watched her.  She herded her back over to me.  I gave her another hug.  She retreated again but hovered closer this time.

The suit was getting too hot.  I went upstairs to take it off.  When I came back downstairs, Lily said, "Daddy, put chicken on."  We laughed, and I told her that chicken man would be back but not tonight.  Then she said, "I want to give him a kiss." 

So now I'm going to be wearing that costume daily.

She asked for chicken man the rest of the night.  She carried the cardboard picture that came in the plastic costume case the rest of the evening, turning the picture sideways and upside down examining it.  Tomorrow I will have to incorporate it into her routine...first potty, then brush teeth and THEN you get chicken man.

Even if I don't wear it trick-or-treating, it's already a good investment.

Friday, October 11, 2013

Pliés and Thank you

Lily is dancing, watching High School Musical (The Concert).  She is jumping exuberantly, straight-legged, pounding the floor as she lands.  Emma, draped half on and half off the couch, cultivating languor, glances up at her.

"Lily," she says tiredly, "You have to land in a plié, or you'll hurt your knees."

From the kitchen I roll my eyes.  Emma repeats this instruction.

"Em," I say, "Lily has no idea what a plié is." (And if we're being honest, neither do I) "You'll have to show her.

"She knows," she tells me, but then watches as Lily completes four or five more stomping stiff legged bounces.  "Lily, show me a plié!" 

Lily jumps again, performing some sort of complicated kick.  Emma shakes her head.  "No that's a  passé!  Show me a plié!"

I chuckle at this and shake my head at her, rising from the table and wandering just out of the room, busying myself with something or other.  Emma gathers herself and climbs to her feet, positioning herself in front of Lily and adopts an instructive tone.  "Like this!" I hear her say.  A moment passes.  "No, like this!" She repeats.  I hear bouncing.  "Great job, Lily!" I hear at last.

These...these are the happy little seeds, planted by my children, that blossom into awesome days for me.

Lily now attends dance once a week!

Wednesday, October 2, 2013

Big Sister

Sometimes the stated nature of this blog as 'autism-centric' marginalizes my NT daughter's own triumphs and tragedies.  The blog itself has morphed into kind of a parent/family blog, where autism is featured prominently, so maybe I need to revise my description of it.

Something happened yesterday that is both Emma-centric but also touches a bit on her role as big sister of a special needs sibling.  It's nothing and everything.  It's so 'minor' that it didn't even persist long enough in my memory to mention to my wife.  But it really should have.

Leslie was getting her hair done.  Emma and Lily and I were fending for ourselves.  Leslie had fed Lily and Emma joined me for a late dinner when she returned from dance class shortly after Leslie left.

I said, "Hey, Em, I'm going to go upstairs and change clothes and run Lily's bath."

And she said, "Okay, Daddy, I'll watch Lily while you're upstairs."  She then put her dishes in the dishwasher and joined Lily in the family room, engaging her in conversation and play.  I listened to their banter as I ascended the stairs.

I don't know if I was feeling particularly emotional or what, but her statement really struck me.  This kid is growing up fast.  I sat on the bed and pulled my dress shoes off and just sorta shook my head at the beautiful relationship these sister have with one another.  There is nobody Lily would rather spend time with than Emma.  And Emma loves spending time with her.  And despite the slapped faces and pulled hairs that love endures and grows.  And I see it changing Emma...and the kind of person she is or will become. 

Oh, she still lounges on the couch and lets life's progression ebb past her while she texts or plays Minecraft or escapes into the television, and she still 'forgets' she has a test coming up or homework to do or a book assignment to read, but where her sister is concerned, she is aging and maturing in front of our eyes, serious and earnest in her desire to protect and entertain and be close to her.

And I realized as I outfitted myself in "Giving Lily a Bath Clothes" (minimalist design...moisture tolerant) that Emma had just removed a little bit of stress from my evening.  I realized that the buzzing humming insect of concern/worry/stress that is always present any time I leave Lily alone in a room to complete some task in another room was silenced by my 11 year old daughter's acceptance of "The Watch".  And that I was confident enough in her ability (having supervised it just out of sight of them both) that it was like Leslie was home and I had her extra set of eyes and hands.

It was nothing; I was only going to be upstairs for a three or four minutes.  All I had to do was change clothes, start the water, and then return downstairs to collect Lily.  But it was everything too.  I knew Emma was watching Lily.  I knew as I got the hair dryer out and arrayed it on the bed where I'd dry Lily's hair after the bath that this extra minute or two I was using to indulge in an additional  layer of preparation was not a ticking time bomb ready to explode into the sound of a shattering vase left unguarded and unremembered in the entry way, or the tearing sound of bills or pictures left unattended on the kitchen island.

When I had bathed Lily we sat in bed watching TV and I felt her, limp and relaxed on my lap, her head leaning against my chest lolling occasionally to the side before snapping attentively back to focus on the TV.  Emma joined us in the bedroom and I mouthed "see if she's asleep".  Emma shook her head and said, "Her eyes are open."

"Time for bed, Lily," I said, and picked her up off the bed to put her on the potty one last time and then brush her teeth.  We read a new story, "Jake Rides a Roller Coaster," and then I tucked her in and lay down next to her, calling Emma in to say goodnight.

Emma climbed across me into bed next to Lily and gave her a big hug as she always does, and I looked at my daughter looking at her sister.  There was just such a bright fondness to her as she crooned, "Goodnight, Lily..." singsong and prompting a response from her sister.  I asked Emma if she wanted to put her sister to bed for the evening and she happily accepted.  I extricated myself from the bed, settling Lily back in place and making a space for Emma to slide in next to her.

"I'll have the monitor downstairs, Em.  If you need me, let me know."

Emma nodded her understanding and returned her attention to Lily, snuggling close to her and holding her hands affectionately and protectively.

I went downstairs, given the night off, to crack open a beer and tune in to the Pirates game to see if we could advance further into the playoffs, another indulgence made possible by Emma's blossoming competence and interest in her sister. 

Crackling from the monitor, I heard Lily attempted to engage her sister in conversation.  Emma redirected her expertly before feigning sleep in an effort to draw Lily there also.  A while later sleep overtook her and I heard the bed creak slightly while Emma shifted and stole quietly from the room.

I know not everyone's NT/ASD kids have the sort of relationship that mine do.  All I can do is be thankful that we have it and wish everyone did too.

Post Script:

This amuses the shit out of me, and it relates to the above story, so I wanted to pass it along.  Lily sometimes pulls Emma's hair in bed when she puts her to sleep.  With me, she pokes eyes, not sure what she does with Leslie, but it's hair-pulling with Emma.  That's one of the reasons we hold her hands.  The other reason is that she ceaselessly fidgets and the fidgeting feeds this sort of loop where she's agitated so she fidgets and the act of fidgeting makes her more agitated.  We gently take her hands.  If she struggles or protests we let her hand go.  But for the most part she allows hand-holding at night as part of the routine, and holding her hand means her hands remain fidgetless and her whole body seems to quiet it's waking struggle to contain itself and she falls asleep.  Anyway...

Emma wears a swim cap to put Lily to sleep.  This is problem solving at its finest.  She didn't do it last night, I think because I offered the duty to her at the last minute, but she confessed that at one point she thought she'd have to go retrieve it because Lily was pulling her hair when she'd release her hands and it seemed like it was taking too long for her to fall asleep.  But I just love the solution.  She tucks all her hair under the swim cap and lays down next to Lily and Lily, losing her fidget...forgets about pulling hair and falls asleep.

All in all, I think it took about 10 minutes for Lily to shut her eyes for the evening.  That's maybe a little longer than usual, but Emma handled it like a trooper.


Tuesday, September 24, 2013

The Lion King (Autism-Friendly-style)



This was big.

What was the big deal?  I don't know.  But it was.  It was a big deal.  You play back all the rejection in your mind...kicked out of church because your daughter is too loud in the balcony and the organist doesn't want to detract from Easter Mass, kicked out of the front of the auditorium where your daughter is watching her cousins in a talent show because the woman in front complains she's too loud and it's hurting her sons ears, told to quiet her down in a theater before the performance starts and that maybe a theater isn't the right place for her if she can't quiet down...all the little hurts that build into chronic anxiety and stress and a feeling of "she can't do that"..."she's not welcome there"..."what if people complain"...any time any new experience is contemplated.  If she "couldn't" do those things, how could she possibly attend a musical?

Musicals have protocols all their own, when to stand or clap figuring prominently among them, but chiefest of these always is remain quietly seated throughout.  And there's just no way that can happen with Lily.  Unless...unless someone put together a performance where the conventional protocols of musical theater were adapted...suspended...unless someone changed the way a musical's conventional performance was conducted.

And that is precisely what this was.  I don't know exactly how the Pittsburgh Cultural Trust got where they did with the Lion King.  I know that ABOARD worked with them, and I'd be speculating if I threw all the credit at ABOARD without knowing if other charities were involved...or if I threw all the credit at The Pittsburgh Cultural Trust for doing it not knowing how long or hard the charity(ies) had to work to make it happen. What I know is what I experienced.  What I know is what I can directly report.  If people want to know more of the details I'll ask around.  Or maybe they'll comment here.  You never know.  This post is just to talk about what The Lion King meant to me and mine and a few thousand of my closest friends...my tribe.  But I know people here and in other cities..."autism people"... were abuzz.

The bill of goods we were sold is that this was to be an "Autism-friendly showing of The Lion King musical".  I know that there was at least one sensory room.  I know that there were quiet rooms for people to retreat to if it got overwhelming.  I know that fidgets were available.  I know that the staff was bolstered by volunteers who were familiar with autism.  I know that when we bought tickets we received a social story discussing what could be expected.

The other things I saw while I was there, but I was mostly ignorant of the details because once I bought the tickets I put it out of my mind until probably a week before the performance and focused on our little family.

We'd gotten tickets right away, so our seats were good.  Extremely good.  Front row, aisle, with the grandparents sitting an aisle back.  We were as close to the stage as you can get without actually being part of the performance, not that Lily didn't try to join in.

We were ready in plenty of time for the drive downtown.  All we had to do was get the kids McDonald's and then we'd be set.  Predictably we fucked this up.  With no money, Leslie arrived at McDonald's and attempted to purchase Happy Meals with her smile.  And just as predictably McDonald's found this currency wanting (despite the smile being priceless).  We had to make another unplanned trip.

Leslie got home and found me less ready than she needed me to be and snapped.  I snapped back and we were off to the races.  Pissed off and stressed out.  It wouldn't be a family outing if it didn't start that way.

Extra trip accomplished, we left fifteen minutes later than we wanted but still arrived with 10 minutes to spare.  I pulled over to the curb in the rain and the girls piled out.  I circled the block to look for parking and found it a half block away from The Benedum (the venue).

I pulled into the parking spot, unlimbered my umbrella and crossed the street to the Benedum before  ducking inside.  Leslie texted me that they were already seated, and I had time to spare.  I found Lu (ABOARD's director) in the lobby.  She told me, unnecessarily, to calm down, and I meandered in to find our seats.  I was the last to arrive, and although I probably sat down just after the 2:00 start time, they allowed people to slowly trickle in for several more minutes before the lights were dimmed (not extinguished) and the show started.

I'm told the music was quieter...for being directly in front of the speakers, I suppose it had to have been.  The music started to play, and Lily looked a bit alarmed.  She reached out to grab hold of our arms.  She didn't want her hands to be held, just wanted to hold someone's hand.  On her terms.  She was agitated.  We made references to the stage..."see the monkey!" ..."her name is Rafiki"...

"No, don't talk!"

I worried she'd start to spiral, but then the music started to sound familiar, and the animals started to walk the aisles...and she was captivated.  Her eyes got big and she started looking all around her at the elephants and giraffes and cheetahs, at the cloth construct birds tethered to poles swirling around our heads, at the colors and the lights and the music.  We kept a steady stream of observations going, attempting to calm her and engage her.  Her movements were quick and stiff like she was scared and anxious, but looking at her face I could see she was just very stimulated by what was going on around her.

The animals gathered and voices joined to voices, agglomerating and building, and they sang the "Circle of Life" and the music and the song built in richness and volume to the crescendo and the Lion King, Mufasa held up his cub for the world's inspection and acceptance and the animals bowed and Lily sang along.  We watched her watching them and my eyes started to brim and I looked to Leslie to see the tears already streaming down her face...watching Lily watch The Lion King.  I gave Emma's hand a squeeze.  She seemed oblivious to the emotion.  I felt the cold constricting band of anger and stress loosen and then fall away from around my chest and I felt like I could breathe again.  I sighed and breathed a deep relaxing breath and then I leaned back into my seat - willing my muscles to slacken, willing my hands to unclench- to enjoy the show.


Throughout the performance the mutters and shrieks and even what sounded like prolonged boos rang out from the crowd.  It felt weird.  It felt funny.  It felt off.  But we all knew.  We all knew it was okay.  And the performers knew it was okay.  And nobody complained or hushed anyone.  Not once.  And believe me it was a full house.  A young man near us, let loose a cacophony of shrieks.  He was upset.  I'm not sure what about.  He stood and stamped and shrieked at his caregivers.  They calmed him and soothed him.  I'm sure they were conscious of others around them.  But nobody cast scornful looks.  Everybody in that venue had a stake in the autism life.  There was no judgement.  As the end of the performance neared he'd had enough.  His group quietly stood and departed and he visibly relaxed in gratitude as they left.  No one told them to wait to stand.  No one cried, "Down in front!"

If the ushers had negative opinions about this disruption to business as usual they didn't show it.  I never saw one look of scorn or judgement.  I saw only smiles.  I experienced only friendly service. 

The performance ended and thousands of grateful patrons stood to appreciate it with cheers and whistles and the performers bowed and smiled in acceptance.  A little girl wearing noise reducing headphones bolted for the stage.  Her mother scooped her up and took her back to their seat.  I smiled.  Ten seconds later she was loose and charging the stage again.  Again her mother corralled her expertly and returned her to her seat.  A third time she bolted.  This time the performers saw her and they began smiling and waving to her, blowing kisses her way as she smiled delightedly back at them, her mother simply holding her in place this time.  I laughed and found again that my eyes were brimming.

Lily stayed in her seat the entire time.  She loved the performance.  At the end of each number she immediately turned to one or both of us and said, "I want the next song."  And each time we replied, "It's coming, Lily."

We left the Benedum with a spring in our strides.  We dodged rain drops and got in our car and drove home and Leslie would sit at the table, or couch, or stand at the counter, or lie in bed for the next...I don't know...four hours maybe?  and repeat, "My heart is full," over and over and over until all she had to do was catch my eye and I'd roll mine and say, "Yeah, I know.  Your heart is full...full of love."

I hope that was everyone's experience.  When we left I tried to think of what could have been done "better".  And the things I thought were all limitations to the venue itself.  The least autistim-friendly parts of the performance were not part of the performance at all.  They were the facilities, or the ingress and egress.  That is where the waiting took place.  That is where the large, loud, stimulating crowds jostled and maneuvered.  And I told Leslie as we left, "I don't know how you could improve upon that unless you convinced the venue to sell half the seats and call 50% attendance a sell-out, then got some major corporate sponsor to underwrite the missing revenue from tickets and concessions so that it still made money."  And that's it.  That's the only issue I had.  It was ironic to me that the intermission, traditionally a time to get up and move around, relax and visit the facilities, was probably the most stressful part of the performance for most people.

We were allowed to get up and move around.  We were allowed to make all the noise we wanted.  We could leave if we needed to without complaint.  We could take her to a quiet room to calm down.  We were allowed to bring in our own food.  The music was softer.  The lights were dimmed but not extinguished.  Extra volunteers were on hand.  Performers and employees were instructed on what to expect.  Women were in the men's room with their kids, men were in the women's room with their kids.  And everyone knew why, and it worked.  It worked so well.

This was big. 

In December they're putting on an "autism-friendly" performance of the Nutcracker.  We used the Lion King to gauge whether we thought Lily would enjoy it...could handle it.  We'll be buying tickets, assuming they're still available.  She can do it.

One last post script.  I know that other organizations were witnessing this.  Seeing how it was done.  Seeing whether it could be done in their venues.  If you're reading this and thinking to yourself..."God, I wish they'd do something like that here," then consider the possibility that they just may.  Contact your local equivalent of the Pittsburgh Cultural Trust and see.  Contact your local equivalent of ABOARD and see.  Don't assume they're not.


Pittsburgh Cultural Trust on Facebook
Aboard (Autism Connection of PA) on Facebook





Friday, September 13, 2013

First Day of School!

Violating the Code of the Blogger, I'll post a mid-day Friday post about sending the kids off to school.  By now 90% of the country has had a week or two under their respective belts academically, and my kids are just boarding their buses.

The strike was over Wednesday night, and the kids were really excited to head back.  Emma in particular was afraid she'd have difficulty going to sleep, and packed and repacked her backpack in preparation for her bus ride 48 hours later.

We were a little out of practice this morning, I won't lie.  Leslie decided to "work from home".  Fine...when Leslie does it it's actually work from home...without the quotes.  She has never missed a morning getting the kids on the bus for first day and today wasn't going to be an exception.

She headed down to start breakfast as I finished getting dressed this morning and I texted down to her (to avoid yelling) asking whether she wanted me to get Lily up.  Emma had already gotten herself up and changed and they'd headed down to straighten her hair for the first day.  Leslie said yes, and so I crept into Lily's room to see if she'd woken yet.

She slumbered peacefully under mounded covers.  I stared at the dresser.  First day of school clothes.  Lots of cute clothes in Lily's drawer.  Hmm.  First day of school clothes cute?  Despite being perfectly capable of picking out coordinated and snappy apparel for my daughter I shook my head and stole quietly from the room on tip toes.

I walked downstairs where Leslie had finished straightening Emma's hair.  She glanced up questioningly?  "No Lily?"

"Rather than bring her down in the 'wrong' clothes, I figured you'd probably want to pick out her first day of school outfit."

If this sounds like a dodge, please know that it is really not a big deal for me to wake up Lily, put her on the potty, get her dressed and bring her downstairs, but on my best days sometimes I'll walk her downstairs and Leslie will glance at the ensemble and indicate that the weather forecast is 65 ...not 75 and therefore the threshold for capris has been breached and she must instead wear pants or something.  I don't know.  Some unwritten..."code of the mom" thing, imbedded in the hive mind of mothers everywhere where a temperature drift of as little as 5 degrees completely invalidates the attire of everyone in the house.  "Jim, you're going to be cold without a jacket..." is the bane of my existence.

So having been through this drill many many times, I knew that no matter what I brought Lily downstairs in...whether it be a gunny sack, The Emperor's New Clothes, or Dolce & Gabbana...it was going to change.

If I expected an eye roll or an argument, I didn't get one.  Leslie merely nodded at this as if to say, "Good point, you can't be trusted, I'll take over," and went upstairs to do just that as I finished the breakfasts.

It was time to take the morning picture.  Leslie offered to take the kids outside and get their pictures.  Emma offered, "Maybe daddy could do it so they'll be in focus!"

This is funny.  I'm not positive Leslie was entirely amused.  To be fair, a lot of Leslie's pictures are out of focus.  Or...to be more fair still to HER...they're focused extremely well, just on something other than what you think she should be focused on.  For example a picture of Lily in front of the house might show you spectacularly clear definition of our front door knob, but Lily's head might appear constructed of fuzzy cotton candy in the 'foreground'. 

Just as Leslie swapped out with me to get Lily dressed, I swapped out with her for the pictures.

I took Emma's picture.
This is Emma

I posted the pic and went in for Lily.  Lily didn't want to come outside.  At one point there was some arguing where Leslie was raising her voice to me, I was raising mine back, Emma then told us both to be nice, so I yelled at Emma to let mommy and I yell at each other and we all sort of retreated and regrouped and came back together and gave hugs and kisses and took Lily out onto the stoop for her pictures.
a smile and everything!


She didn't want to stand, but she smiled largely and genuinely and I caught it.  BOOM!  *drops iphone and walks off stage*

Both girls were happy to board their respective buses.  Lily's teacher texted Leslie to let us know she had a great day.  I just got off the phone with Emma who reported the same.


We're very happy they're back on track.

Mostly.  The bus picking Lily up is currently running 45 minutes late.

Wednesday, September 11, 2013

What I Did on my Summer Vacation: Concluded

(Previous Post: "What I did on my Summer Vacation:  Part 4")


We were in the home stretch of our vacation.  All the stressful epic parts were over.  We thought we might shoehorn a trip to the beach between our last couple days, but it turned out Emma had developed a 'beach phobia'.  Well...a shark phobia.

And before you say, "Jim...this is because you forced her to watch Sharknado with you!" ...it so has nothing to do with how I forced her to watch Sharknado with me.  At all.  The only link at all between her new shark phobia and Sharknado is all the sharks that were eating people. And also the nightmares of sharks eating her that she had the night we watched it.  But...but...it was just that one night!

Fine, maybe there was something to that, but what we think happened is this...a couple weeks prior to going on the trip, Emma's cousins had been at the beach on vacation.  They got a great picture of a huge hammerhead shark sitting just off the beach in the water.  The beach had been evacuated...adventures ensued, doubtless, but the idea of that shark in shallow water took root in Emma's imagination and no amount of logic or reason could weed away the terror she had that sharks would eat one or more of our family if we ventured onto the white sandy beaches or worse...waded into shark infested shallows.

We said, "Let's not talk about it tonight, let's just see how you feel tomorrow."

This reminds me of a George Thoroughgood song, "One Whiskey, One Shot, One Beer".  I don't know why.  I sort of do.  Anyway, apparently George is having difficulty paying his rent and his landlady keeps kicking him out of the apartment.

"She said that don't confront me, 
Long as I get my money next Friday
 Now next Friday come I didn't get the rent
And out the door I went." 

So tomorrow came and she was still terrified of sharks...out of our plans it went.

This left our pristine schedule looking something like this:

First Day/Night (Saturday):  Travel, unpack, get settled, put together a grocery list, order pizza, play by the pool.
Day 2 (Sunday):  Universal
Day 3 (Monday):  Rest/recuperate/pool day...changed to Disney
Day 4 (Tuesday):  Disney...changed to rest/recuperate/pool day
Day 5 (Wednesday):  Rest/recuperate/pool day changed to Sea World Day
Day 6 (Thursday):  Sea World changed to beach day cancelled due to shark attack changed to rest/recuperate/pool day.
Day 7 (Friday):  Pool day/pack up/clean up/travel home.

And although we would never make it to Florida's beaches...also on the plus side, none of us were eaten by sharks.

So we had another day of play.  And it was good.  Leslie had tasked me with eating and drinking everything that was left in the fridge from our original grocery shopping, which meant I had to drink beer after beer after beer...like a chain smoker lighting the next cigarette off the still-burning cherry of the one dangling from his mouth...I drank and drank and drank until I completed her labor of Heracles.  No accolades accompanied this success, as Leslie was fast asleep.
this is what happens when you're told to finish everything in the cupboard.

We packed most of our things the previous night, but realized we'd read the fine print regarding checkout incorrectly, and had to scramble to get our stuff set up for the next day.  The biggest issue was that checkout was officially 11:00, and our flight wasn't scheduled until 4:00.  That left five hours to kill.  I asked Leslie to call the rental agency to see if we could checkout later (2:00) and they said yes, which made the trip to the airport a bit less stressful...until...

A huge thunderstorm rolled into Orlando.  Torrential rain accompanied by lightning and...the bane of Lily's existence..."Scary Funder".  And this thunder WAS scary, and loud.  And she was scared and upset and difficult to calm.  And we sort of suffered through our few hours at the airport (planes were all delayed because of lightning) but we hung in there and got on the plane to fly home.

And Lily was mostly good until descent...and then we think her ears started hurting and she couldn't understand what to do, and the fruit snacks must not have cut it because she had another accident when we checked her after landing despite not being really "scheduled" to go for a while. 

It must have been very scary for her to start feeling that pain and pressure building in her ears and not understand how to deal with it.  Emma's own problems with it on the way in had ended with her going to bed early and she'd understood.

The flight was over.  The trip was over.  My dad picked us up at the airport and we made it home safe and sound, just in time to watch the Steelers play their final preseason game.

It started the day before our trip to Orlando with Lily throwing up.  It ended the day we got back with the Steelers doing the metaphoric football equivalent.

Seven days in Orlando...nobody eaten, and no with vomit!*

*Sidebar:  My nephew, who follows me on Instagram was reading comments on one of the pics I posted of Lily while we were on vacation.  When we got back we were all celebrating my parent's birthdays together and got on the subject of Instagram.  He was like, "Some of the people who follow you leave the most bizarre comments."  I nodded...because...well some do...but I asked him for an example.

He said, "There was a picture of you guys in the airport, and one of the commenters said, 'and with no vomit!'"

I explained why the comment had occurred, and we laughed about it, but now every so often he'll see my Instagram feed and post a comment, "And no vomit!" regardless of picture.  I should post a picture of vomit and see what he says.  Maybe not.

Wednesday, September 4, 2013

What I Did on my Summer Vacation Part 4

(Previous Post:  "What I Did on my Summer Vacation Part 3")

Alright...Disney completed we were free to pursue the rest and relaxation that we'd previously bumped in favor of a Dawn-assisted trip.  Let's review the plan:

First Day/Night (Saturday):  Travel, unpack, get settled, put together a grocery list, order pizza, play by the pool.
Day 2 (Sunday):  Universal
Day 3 (Monday):  Rest/recuperate/pool day...changed to Disney
Day 4 (Tuesday):  Disney...changed to rest/recuperate/pool day
Day 5 (Wednesday):  Rest/recuperate/pool day
Day 6 (Thursday):  Sea World
Day 7 (Friday):  Pool day/pack up/clean up/travel home.

After we'd all breakfasted (bacon every morning, yo) we focused on not doing stuff all day.  This meant a lot of TV and pool time, and I got tons of pics at the pool, some of which were kinda cool, like this one:

or really sweet, like these:

Eventually Aunt Dawn and I went to pick up her rental car.  After three wrong turns we ended up at the rental counter about an hour before closing where they confessed that her car, though 'available' was not 'clean' yet and without hesitation, Dawn accepted this, because what else are you going to do, wait?  And we went to inspect the car.  I did, no shit, inspect the trunk for bodies, because in my head it was all playing out like an elaborate set up, where Dawn, renting a car filled with dead bodies takes the fall for some mob hit and ruins our vacation.  So I looked.  No dead bodies or heroin or briefcases filled with money were in the trunk, so she hopped in and followed me home.

We ordered food again that night.  I can't honestly remember what it was.  I know that at no point was any take-out place aware of the street our house was on and nobody delivered anything in under 45 minutes, so I assumed it must be pretty new.  We said good night and goodbye to Dawn (since she had to leave so early nobody would be awake), and then everyone went to bed...

Except me.

And Lily.  She had a super weird night.  I think in the end we chalked it up to overstimulation at Disney, but she was showing some signs of getting sick too.  Lots of drippy noses were cleaned poolside and Lily would sleep for about an hour or so before waking and crying.  I sent Emma (who was sharing a room with Lily) to sleep in our bedroom and spent the night sleeping in Lily's room.  I eventually (after getting her on the potty one last time around 1:30 in the morning) got her to stay asleep by springing up from Emma's bed whenever I heard Lily start to wimper...and patting her lower back until her cries would diminish in volume and fade entirely into a rasping whisper then silence and sleep.  This happened a couple more times, and I think I finally slept at about 3:00, afraid of what the next day would bring. 

But the next day came and Lily remained her bubbly happy little energetic self despite the previous night's (morning's) activities.  Dawn was gone, and we were on our own for another day of rest and relaxation.  So of course we said fuck it, and went to Sea World instead.

Leslie checked the website and saw that they were open until 10, so we took our time getting ready, at a late breakfast, played in the pool, and then headed for Sea World via McDonald's (for Lily's late lunch).

Obligatory park entrance photo...
actual Killer Whales impaled on harpoons
In keeping with our theme of "Do no research", we arrived at the park with no real idea what was there, where to go, or what to do.  We paid extra for preferred parking, because it had worked really well at Universal, and we parked very close to the front gate of the park.

The first stupid thing that happened was this:  for whatever reason the park was not closing at 10.  It was closing at 7, and whether Leslie read it wrong, or it was just listed wrong on the website, we had arrived at 3:00 and only had 4 hours in Sea World.  We did it anyway thinking regardless of what happened, we could tire the kids out enough by 7 that they'd have made us wish the park closed then even if it closed later.

The second stupid thing that happened was this:  If you buy tickets for Sea World at the gate it costs like (I'm off by a dollar or two here, but I'm too lazy to look it up) $95 per adult and $85 per kid.  Both Emma and Lily qualified as kids, so it was going to be $350 to get in the gate.  But the night before I'd look at ticket prices and they were posted as $50/person.  The girl at the counter said, "Yeah, but only if you buy online".

We got out of line...got ONline, and bought four tickets for $50/person and they downloaded to my phone.  I just showed them my phone screen...they swiped it under the scanner, and in we went.

$150 saved because I downloaded the tickets right then and there from my phone...why didn't all the other morons do that?  There was a line at the ticket counter...stupid.

Anyway, once in the park, I procured a stroller and Leslie, Emma, and Lily went to get an access card/pass/paper thingy.  It took a little longer at Sea World; Lily was getting antsy.  We did finally get the pass and the sticker for her stroller, and made our way out into the park.

The weather was gloomy...threat of rain...but there was always a threat of rain.  Some thunder made Lily a little skittish, but she and Emma reached into a giant tank to "pet" the stingrays and then Emma and I fed them...and it was freaky as shit.
She looks like she's a lot more into it than she really was...
Lily started spinning (this is something we say that's really short for "spinning out of control") then, and we attempted to view the enormous dolphin tank from underground, getting some really great pictures, but not actually making Lily any less agitated.


We made our way off into the park, again plan-less, again meandering frustratingly from one bad overstimulating thing to the next until finally I think Leslie got tired of all my negative stressful energy and took Lily to see the Sea Lions so that Emma and I could stand in line to feed the dolphins.

The dolphin thing was another "centerpiece" for the vacation, and I'm glad we could mark it off the "bucket list" but we stood in line a long time as the queue worked its way slowly dolphinward, snaking around barriers and buildings until we stood at last on the side of the dolphin tank, which was enormous and filled with frolicsome peckish dolphins.  Emma was instructed (as were the rest of the people participating) to cup their "chins" (because I haven't put enough words in quotes in this particular paragraph) and then feed them a fish to reward them.

It was pretty cool.  We got a great picture that the Sea World photographers took, and I bought it and we took it home with us.  But I also took a few:

What do you mean, "42"?  That doesn't even make sense.
By the time we made our way to the dolphins, Lily and Leslie had already seen the sea lions and had moved off to find Shamu.  She texted me, "You can still make it if you hurry".  The Shamu show started at 5:30 and we were just getting out of the dolphin feeding.  We started running...

And then we started walking.  Then I picked up Emma and carried her and then we started running again...but then almost immediately started walking more.  And shortly after that I put her down and we walked.  And then we ran a little more.

And Jesus, how far is it to Shamu Stadium?  The answer is:  A long way from the dolphins.  But we made it.  We missed a little splashing and cavorting, but we made it.


Rain interrupted the performance and delayed it.  When they came back to finish out the show there was perhaps another five minutes before it ended and the crowd spilled back into the park at large.  Lily liked the show, and we ate cotton candy and relaxed.

When we left the stadium we were right at the "kiddie" portion of the park.  Again...looking at this section, it screamed "Perfect for Lily!" and I again scolded myself for not immediately seeking it out.

We were running out of time.  They announced 30 minutes until the park closed.  The girls road a jellyfish ride together.  Lily loved it.  Then...then they went to the roller coaster.  It was a kiddie rollercoaster...but still too adventurous for my tastes.  Lily was in a good frame of mind and Leslie said..."why not".  She, Emma and Lily walked the ramp and stood in line.  Emma and I exchanged "Are you nuts?" glances at each other the entire time.   And then Lily rode it.  And loved it.

Now the announcements were coming more frequently, "10 minutes until the park closes".

She got off the ride, we made our way over to buy the picture of her first roller coaster ride, and Lily said, "I want to ride roller coaster again!", so they did!

"5 minutes until the park closes."

We made our way to the exit.  I posed the kids in front of a Sea World sign and then an employee walked by and offered to take all of our pictures.

 


And then Shamu snuck up on me and gave me a wedgie.


We made our way out of the park.  Again, it wasn't a homerun, but again I feel like it had more to do with us than it did with the park.  We did have fun after another rocky start, but probably could have benefited from another hour or two to explore.  I was glad we did it.  Everyone enjoyed it, but just the same we didn't stop by the gift shop for Shamu figurines or anything.

We drove home again.  Through the pouring rain again.  But this time everyone slept.

The exciting conclusion in, "What I Did on my Summer Vacation:  Concluded"

Friday, August 30, 2013

What I Did on my Summer Vacation - Part 3

(Previous post: "What I Did on my Summer Vacation - Part 2") 

Aunt Dawn and Lily had a good day while we were at Universal.  We occasionally checked in, or she'd text us a picture of Lily playing by the pool.  I think it all more or less went as planned.  Except that...in buying the groceries for the house, I'd sort of neglected lunch.  I'm not sure why, but I think I thought we'd just buy it at the park or drive out to get it, or decide later and buy more stuff...but whatever the reason, it amounted to lots of breakfast stuff in the house, and very little lunch stuff.  So Dawn fed herself leftover pizza for lunch, and when we still hadn't arrived for dinner...she fed herself leftover pizza for dinner too. 

Sorry about that.

Revisiting "The Plan":

First Day/Night (Saturday):  Travel, unpack, get settled, put together a grocery list, order pizza, play by the pool.
Day 2 (Sunday):  Universal
Day 3 (Monday):  Rest/recuperate/pool day
Day 4 (Tuesday):  Disney
Day 5 (Wednesday):  Rest/recuperate/pool day
Day 6 (Thursday):  Sea World
Day 7 (Friday):  Pool day/pack up/clean up/travel home.

We were on Day 3...rest and recuperate by the pool...and that's how the day started.  The rationale behind getting Universal out of the way was that we'd have Dawn's support.  She was flying back out on Wednesday, bright and early.  Dawn decided it made sense to get a rental car.  This was a ginormous help from our standpoint, because her flight was to leave Wednesday but she needed to be at the airport at like 6:30 in the morning.

What we figured though was that if we were going to pick up the rental car, there'd be no way we could pick it up on Tuesday if we were at Disney.  We shifted the plan and decided to go Monday instead.  Then we could pick up the car Tuesday on a rest day, and Dawn could drive herself to the airport Wednesday. 

I kind of want to recap this for a second.  Dawn flew down to Orlando to help us with Lily...we didn't pay for her ticket.  She ate leftover pizza because we refused to buy her food (okay...not refused, but...you know).  Then she rented a car so that we wouldn't have to drive her to the airport...we didn't pay for the car.  This was all her idea.  I thanked her in about as bubbly a fashion as I'm capable, but I always look back and think...I really did not thank her enough.   The universe will recognize it though, no doubt, and owes her massive karma points.  YOU KNOW YOU OWE HER, UNIVERSE!  And we do too.

Anyway...

This pushed our plans to Disney from Tuesday to Monday...and while we weren't completely prepared (ie, didn't get up at the ass-crack of dawn...ugh...unfortunate choice of expressions, Dawn, sorry) we also weren't worried, because Lily is sleepy by 8:00, and we knew we weren't going to be able to drag out a whole day at Disney without her being completely exhausted.  So whether we got there early and left early, or got there late and left late, it really made no difference to us.

So we went to Disney.  Did you ever see the Sponge Bob episode where it's like a Krusty Krab employee training video?  At the end they get to the part where it's time to make the Krabby Patty, and they show this Krabby Patty out in the distance, and it gets closer and closer, but only incrementally so, slowly growing in the frame as the voice over guy does this fanfare...duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....for an uncomfortably long time.  If you haven't seen that, perhaps you've seen the scene in Monty Python's "The Holy Grail" where Lancelot storms the castle...and they show him off in the distance and he gets larger and larger in frame accompanied by tympani background music...they flash back to two guards who look curiously out at him, then back to Lancelot, who is inexplicably further out then he was the last time we saw him...again charging...again moving closer...back to guards, back to Lancelot...etc.

Going into Disney is like that.  There are exits for miles.  You finally take the ramp, then you're actually on like...Disney Freeway or something because there are no off ramps, it's just an asphalt vein pumping tourists into Disney, and an artery pumping them back out...with no tributaries of any kind.  And you drive on this desolate highway that must be all Disney property for miles and miles.  And in the background you hear...duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....for an uncomfortably long time.  Until you see a sign!


And you're like, "Sweet!  We've made it!"  But this is just Lancelot, and you still have to glance back at the guards...and still the fanfare...duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....for an uncomfortably long time...

And then at last you reach THIS sign...


And then you've arrived.  Sort of.  Because you still have to keep driving to get to the parking lot.  duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....

And then you've arrived.  In a way.  Because you have to board the trolley to take you to the gate. duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....

And then you've arrived.  Mostly.  Because you have to board either the train or the ferry to take you to the actual entrance.  duh-duddle ut duh, dut dut dut dut duh du-duddle ut duh....

And then you've arrived.  No...I'm serious this time.  No, come back.  You're at the Magic Kingdom.  COME BACK!  IT'S FUCKING MAGICAL!!!

Okay, if you get the impression that I was frustrated by the Magic Kingdom, then I'm an awesome writer, because I was frustrated by the Magic Kingdom, but until now, I didn't actually "say" that...WRITING!!

Let's back up to the train/ferry.  I wasn't prepared for this.  We weren't prepared for this.  Here's the devil's bargain:  Take the ferry and squish together with throngs of smelly sweating passengers on a slow boat ride over a lake into the park...OR...stand in line with throngs of smelly sweating passengers to take a fast ride into the park in an air conditioned train that makes two stops before it gets to the park.  Yeah...I know I said "then you've arrived"...and you have...because once you leave the train you're at the entrance, but your train has a couple stops first.  To pick up more money for Disney...I mean passengers.

A train was unsafe, or being serviced or something, so they were only partially filling it.  But we didn't know that.  The wait to get on the train was thirty minutes.  There is no disability pass to get on the train sooner.  There are no strollers or wheel chairs offered in order to make wait times for low muscle tone legs any less...this set the tone for our entrance into the Magic Kingdom, and it was less than magical.  Lily was slowly spinning out of control.  She was upset and hot and waiting and we had no idea what was taking so long, or when we'd get on a train.  We watched from the line as a train boarded and took off...several cars were completely empty.  I was getting more and more pissed off.  But we got on...and we got to the entrance, and NOW let the magic commence!

Someone smarter than I am will have to figure out a tip to help kids like Lily prepare for that sort of initial adventure...maybe rent a stroller somewhere else and bring it...maybe keep her cool with spray bottle...I don't know.  I just know that saying, "Be prepared to stand in a long-ass line for a train" is not a useful tip.  Still, it's nice to know it's coming.

So everyone's first tip for Disney is to get the Guest Access Card.  So I'm not going to bother listing it as a tip.  I'll get to part B of that in a minute.

Tip 1:  If your child needs/will use a stroller or wheelchair, get one/rent one.  It's a long hot day.  Christ, if they'd have made a stroller big enough for me, I'd have rented one and had Leslie push me around.  Before we left a couple people suggested this, and I said, essentially, "Lily won't sit in one."  I was wrong.  I'm really glad nobody listened to me and they rented it anyway, it saved our ass more than once.


Aunt Dawn went to rent a stroller while I went to "City Hall" to get the Guest Access Card, and Leslie loaded Lily into it and they walked around while I ran ahead to stand in line. 

Okay, so the magical Guest Access Card thing. Here it is:

This is what it looks like.  I suppose if rich housewives truly understood how easy these things are to obtain, then adults with disabilities looking to make extra dollars as tour guides would be out of money.  I'm referring to the recent scandal that surfaced where rich Manhattan moms would pay disabled tour guides in order to allow their children to bypass long lines at Disney using the guide's guest assistance card. 

How easy was it to get the card?  I went into City Hall to stand in line.  A staff member stood next to the line and I had a quick question for him.  Essentially, I'd been led to believe that the GAC allowed the guest and three adults (for a total of four) to use the alternate entrance.  My question, "Can four adults (Leslie, Emma, Aunt Dawn, and myself) use it?"  As I stood in line, I asked him, "Quick question about the Guest Assistance Card?"  Before I could even ask my specific question though, though, he'd launched into a summary of what it was and what it did, and included in his summary was..."the guest and up to five accompanying adults".  Question answered, I was satisfied and prepared to stand in line.

At this point, though, he said, "You need to get a card?" 

I answered yes, and he pulled me out of the line and filled one out on his clipboard.  I asked if I needed to have Lily with us in order to get the card and he said no.  So...strictly speaking, if you're rich and morally bankrupt, there's really no reason to pay anyone anything in order to obtain a GAC, because they won't require that you present the person with the disability during the interview process, and they don't ask to see documentation of diagnosis.  You didn't get rich by paying people a bunch of money, am I right?  Am I right???  So, you're welcome, rich people.

Tip 2:  Get the disability sticker for your stroller.  We did not initially do this.  What does that mean?  What it means is, you leave your stroller at the gate then go back and retrieve it when you're done.  Some of the alternative access points still require a decent wait, and so if the stroller or wheelchair is being used to aid your son or daughter's ability to wait in long lines...you're hosed.  You can't do it.  We didn't know this was even an option.  Leslie, pissed off at how the day was going, went to give the good people in City Hall a piece of her mind (this comes later, so I'm jumping ahead in the story a bit) and during the course of her diatribe was provided with this sticker to loop through the handle of the stroller, and allow us to keep Lily seated and in shade as we pushed her down the path toward whatever the next attraction was.  This proved very helpful and really probably saved the day, because by about 3:00 (about 2 hours after we got into Disney) we were considering leaving.  But as I said, this comes later.

My friend Bec writes the most informative and insightful blog about autism that I've come across.  Before we took the trip, she sent me a list of tips.  Bec knows enough about our family to be able to tailor the experiences she'd had at Disney to our family's needs.  The very first stupid thing we did was a direct violation of one of Bec's first tips, "Familiarize yourself with the map."  Yeah, yeah, Bec, whatever...I don't need no stinkin' map.  So we were figuring it out on the fly...but that was okay, right?  It worked at Universal, why wouldn't it work at Disney?

Because Disney is immense. 

Tip 3:  (With apologies to Bec for not paying attention and further apologies for stealing her idea, but really since we didn't use it and learned from our own mistakes, it's like it's our own tip) Familiarize yourself with the map.  Figure out what attractions you most want to see and see them first.

Doing this on the fly, we decided to go to Pirates of the Carribean.  Seriously it's going to sound like we listen to nobody, but Dawn kept asking..."Is she okay with it being dark?  Is she okay with skeletons?  Pirates and stuff?"  Yes, yes, Jesus...we know our own kid okay???  Now shut up and go look pretty.  After an initial flight on Aladdin's magic carpet, which was the standard amusement park fare...prop attached to hydraulic arm...pull up on handle, prop rises...spins in circle...exit ride.  In this case it was a giant magic carpet.


After this, we stood in line for Pirates...and Lily started to lose it.  It was dark in the line, and the wait (despite the GAC) was long, and she got impatient and tired, and if it would have stayed there, that would have been fine, but once on the ride she spiraled into terror.  Darkness.  Loud noises.  Scary faces.  She was horrified.  She was in absolute misery from the moment she got on the ride until maybe an hour afterward.  In our defense...neither Leslie nor I (I was 12 when I rode it in Disney Land) recalled it being as dark or as loud...but we still should have known better.  Aunt Dawn, to her credit, did not say, "See???" Which was good.

She cried throughout the ride.  Complicating things was that people weren't getting off the end of the ride quickly enough, and the boats stopped...three times...we listened to one particular script three times before the boats started moving again.  We bumped into the boat in front of us and waited, becalmed, until they got the ride moving again.  This just prolonged her agony.

We left Pirates pissed off at ourselves, pissed off at Disney, and feeling so guilty about Lily.  And here's where I want to share what I'll say is my most important tip.

Tip 4:  Know your child.  Throughout our relatively successful 'careers' parenting, we occasionally forget this.  We think...we're here...let's just try this.  Where "this" is anything that you should know in your heart of hearts is not something your child would ordinarily like, but you do it anyway to push boundaries.  To challenge your child.  To seek growth through experience, perhaps.  Or even, as my father was always so fond of saying, "to build character".  Disney is not the place to fucking build character.  The obscenity is directed at me.  What does Lily like?  We knew the answer to that question.  Time and time again over this vacation (Disney and Seaworld) we ignored the answer to the question in order to push boundaries because we were there.  Because when would we get another chance to push that boundary?  When will we ever be back to Disney?  When will she have another chance to ride Pirates of the Caribbean?  Who knows..."let's just try this." 

No.  If this is truly a vacation for the kids, as we said over and over that it was, then it's a vacation for both kids.  What does Lily like?  Let's find that stuff.  Let's do that stuff.  We'll go back home in a week and she's be up to her eyeballs in therapy and school and day camp and TSS and OT and all the other shit that we put that poor kid through just to play catch up with the 'deficit' system that is in place in public school...give her a vacation that she can enjoy.

I'm being too hard on myself.  In hindsight it's easy to see she wasn't going to like Pirates.  At the time we truly didn't think it would be as big a deal as it turned out, and the guilt I feel about how much she suffered on that ride is translated into a rant against myself.  But really it's a different take on a familiar theme with autism parents regarding true acceptance of your child.  If your kid is 15 and loves to play with Barbies?  Then give the fucking kid a Barbie.  That is what acceptance is...not giving a shit about social 'norms' and saying, "I want my kid to be happy."  So maybe I'm applying that same lesson to the ride.  If Lily wants to ride the magic carpet a thousand times in a row...why not?  If she likes Dumbo?  Why not?  We eventually found rides and attractions and joy for Lily in the Magic Kingdom.  But that time was still a ways off, and I was mad enough at Disney and myself and the world at large that in my head and heart all Leslie had to say was, "I think we should leave" and I'd have walked back to the train and left Disney behind for greener pastures.

And one more sort of backpedal on this... I'm not saying that "knowing your child" means you should never push boundaries or never try new things, or never expose them to new experiences.  I think it probably reads like that a little bit.  But there are times to push boundaries and maybe vacation isn't the ideal time.

We tried to regroup.  A bunch of stuff happened and I'll probably screw up the timeline, but we went to see Belle in the Beast's Castle.  We found a sympathetic staff member wearing a "From Pittsburgh" (all the name tags list hometowns on them) name tag and we bent his ear with out story of woe.  He got us into a line for the Castle and we went inside where it was cool and quiet(er).  It was still not Lily's favorite, but at least she wasn't screaming about how she wanted to go home. 

The storyline was this...The Beast is throwing Belle a surprise party.  We need you (all the people there for the attraction) to help us!  We need soldiers to march.  Everyone march.  (all the people marched) YOU!  You will be a soldier.  (person comes out and grabs ME out of the goddamn crowd, hands me a cardboard cutout of a knight, and tells me to hold it up to my  face and march in place at a certain time.)  This proceeded...Lily was tagged to be Mrs. Potts, but she threw Mrs. Potts' cardboard cutout on the floor in silent protest.  IN YOUR FACE, MRS. POTTS!  Emma declined more politely and the role was offered to someone else.

But I was stuck.  So throughout the performance I was called upon to march, or bow or say, "merci" or "HURRAY!"  or whatever and I did.  I daresay I was the best they ever saw.
The tummy pooch was part of the act...they told me I HAD to do that.

Lily sat through the performance but was not in love with seeing her beloved Belle in person.  Not that she minded.  She just didn't seem to love it.

After Belle, we found a place that sold cold drinks and re-regrouped.
sippin' on gin and juice, laid back, with my mind on my money and my money on my mind...

We got something to eat at a diner in Futureland and Lily was smitten with the performer, a dinosaur looking alien who played music and who she could dance along with.  Then we found Dumbo and road him.  Then there was a performance at Cinderella's Castle that really had Lily enthralled.  Aunt Dawn took Emma to Space Mountain so Emma could ride, and we took Lily to Dumbo, and then Leslie went to City Hall to give them a piece of her mind, and that's when got the sticker for the stroller.

And we kept stringing little victories together until the Kingdom started to feel a little more magical.

captivated by Mickey


She IS thrilled, maybe the camera doesn't show it...



Yes...I KNOW I'm in trouble.


Nothing says romance like Dumbo's ass.

oh my god...she was SUCH a bad driver.



We capped the visit off with Small World.  We probably should have started the visit that way too.  She was captivated.  Small World has come a long way...and stayed exactly the same all at the same time.  When I visited it, I remember it being dingy and old and faded.  This was BRIGHT.  The music was cheerful.  There were pretty colors wherever you looked, and everywhere...everywhere...music.  And Lily loves music, and color...sigh.
It's a small, small, world...
Disney was alright.  In retrospect I give it a B-.  Looking back at what I've written, you're missing a lot of what I didn't love about Disney.  You're getting a bit of it, but not all.  Rides were down for maintenance, people were everywhere.  I don't mean there were a lot of people.  I mean there were so many people that at times I felt overwhelmed by the sheer closeness and ...muchness of the humanity around us.  I was constantly stressed out.  People would stop en masse not just to take pictures, but to pose for them.  Just...right where they were without any regard for the people walking behind them around them between them...so many people.  Like maybe if they sold out the park...you know...and kept the crowds manageable.  But they won't.  They make too much money.

Leslie asked whether the characters ever came out into the park and they just laughed at her.

"They'd be mobbed"

They're right.  They would be.  I read on Wiki Answers that 46,000 visitors visit the Magic Kingdom each day (it's just an average of the annual total divided by days, but still).  That's so.  many.  people. 
It was the worst part of the park.

And it was hot.  I can't blame Disney for the temperature, and really, if I blame anyone it should be the asshole who booked the trip in August.  But it just made the experience that much less of an "A" and that much more of a "B". 

The train trip back was faster and better, and there was relatively little traffic on the way home.  Day over, we could focus on healing from all that magic.  Everyone ended up having fun.  But we had to work pretty hard to find it.

(Continued Here:  What I Did on my Summer Vacation Part 4 )