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. 

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!

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!

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.

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.