Sunday, June 30, 2013

Glitch

Vanellope and Ralph
or
Sweet Girl and me
Have you ever cried during a children's movie?  Not because of the usually horrible circumstances setting up the movie (Sorry about your mom, Nemo.  You too, Bambi.  Same to you, Cinderella.  Belle, Ariel...not sure what happened there but I bet it wasn't fun.  Sorry about that.), but because of something that seems to speak directly to your life?  No?!  Well I have.  Lately we've been obsessed with Wreck-It Ralph.  Sweet Girl was first introduced to this movie at school.  They watched some day before a holiday or something, and though she did watch some of it from under Ms. Wellen's desk, Ms. Brown assured me that she watched most of it without any major issues.  I had been concerned because even simple things like watching a new movie can sometimes be a very dramatic affair fraught with anxiety and uncertainty for my girl.  But she watched.  Then we purchased it on DVD.  Then Sean took the kids to New Jersey.  And it was during that drive that Wreck-It Ralph forever became a part of our family.  It might just be a movie to some people, but to those of us who have watched it a hundred times, heard the words echoed back to us and manipulated to fit every kind of situation, watched their kids use scenes as constructs for play time, then this movie is way more than pixels on a screen.

If you haven't seen it, let me give you a quick synopsis:  Ralph is a bad guy.  He wrecks the building in Niceland and Felix (nĂ© Fix It Felix Jr.) must repair the damage with his golden hammer and mad hopping skills.  They're a classic arcade game (30 years old to be exact) and Ralph is searching for more than smashing, living alone, and the stigma of being a bad guy.  He goes looking for a change and finds his way into two other video games.  The majority of the movie takes place in a game called Sugar Rush where he becomes friends with another character; Vanellope von Schweetz.  Vanellope's goal is to become a real racer at Sugar Rush Speedway.  Every night, the characters hold a Random Roster Race to determine what options will be given to the gamers for the next day's races.  Vanellope needs to enter and come in the top nine to do that.  But to enter, one must have a gold coin which one gets from previous races.  See the problem here?  Ralph shows up with a stole medal that closely resembles a gold coin, and after purloining Ralph's medal Vanellope uses it to purchase a spot in the race.  There is a lot of other action in the movie, including a megalomaniacal king who manipulates game code, but that's the basic premise and I'll assure you that all ends well.  There are funny moments and touching moments - even some legitimate sad moments - but probably nothing that warranted the full on waterfall of tears I had going on the first time I actually paid attention to what Sweet Girl and Little Man were watching.

There's a scene where Vanellope is showing her handmade kart to the other racers.  The other racers were already determined not to race with a "glitch" (the term used by all the citizens of Sugar Rush to describe Vanellope and keep her from participating in any races), even though Vanellope has used Ralph's medal to purchase her spot in the Random Roster Race.  Vanellope shows the other racers "the fastest pedal power this side of the Whack-A-Mole" with pride.  She had no other option but to build her own cart from things she finds around Sugar Rush.  The other racers, who have real karts with engines, tell Vanellope that she can't race for her own good.  They say that Vanellope will not only embarrass herself with her slow kart, but that she's an accident waiting to happen.  That her glitch will be her undoing.  And then the racers proceed to destroy Vanellope's kart.

When I watched this scene my heart broke into as many pieces as the sugar cone hood on Vanellope's kart.  Because through my tear-blurred vision Sweet Girl stood in Vanellope's place.  Communication and language delays come with autism for Sweet Girl, and so instead of using the sleek, fast-moving, mostly inherent language processing the rest of us use (with little to no appreciation of such processing I might add....I mean, I never thought about it until I saw my girl struggle) she uses things she finds to construct her language and communication.  Today she used a script from Sophia the First to tell me that she wanted me to play tea party with her.  The words "Mommy, please play tea party with me." don't come naturally to her and so she's used other means to communicate.  I was invited to the castle, instructed to sit like a princess, and then given my tea.  We reached the goal she had, but we took longer to get there and we had to work harder at it.  Just like Vanellope and her pedal kart.  And just like Vanellope, I know that my girl will come up against people that see the clumsy parts - the awkward ways in which she goes at talking and communicating - rather than the immense amount of hard work.  I know that she will have to work four times as hard to go half as fast.  And I know that there will be people who only see the glitch.  My heart aches.

But even more difficult than that was when I had to admit that in the movie of our lives, I'm playing the role of Ralph. [Sidebar: Ralph was my father's inexplicable nickname for me as a child.  My sister was Ruby, my brother was Roscoe (Dukes of Hazard), and I was Ralph.  All for no apparent reason.]  Now, Ralph's not really a bad guy.  I mean, yes, he's the bad guy in his game, but he's not a guy that's bad.  He's actually pretty nice and I understand his desire for more out of life than the one role he's been playing for 30 years, or at the very least for some appreciation for playing that role well.  Ralph just needs a little something for himself, ya know?  Oddly enough, he finds it helping Vanellope.  When he and Vanellope manage to obtain a real kart for her to use, they realize that she doesn't even know how to drive.  Ralph immediately begins pounding out a track for her to use in practice.  And I thought: "Of course that's what you do.  If there is something, anything, you can do to try to level the playing field just the littlest of bits then you do it.  You pound the crap out of the floor in Diet Cola Mountain and you make that kid a race track."  And I'm right.  You do whatever it takes.  You log hours in waiting rooms.  You wait out tantrums.  You give them eight blankets.  You shop at Whole Foods.  Because what wouldn't you do for your kids?  What wouldn't you do to make the path a little clearer?  Any parent of any child:  What wouldn't you do if you can?

That was the easy part though.  The hard part came later when Ralph used his wrecking skills to destroy Vanellope's new kart.  While he thought he was doing it for her own good - taking her out of the race so that she wouldn't put the whole game and her own life at jeopardy (glitches can't leave their own games so if they get unplugged then Vanellope dies) - I watched that scene in horror as I saw myself in the destruction.  How many times have I thought that Sweet Girl shouldn't try something because it might be too difficult for her?  That people might laugh and be cruel or that it would just be too overwhelming for the delicate balancing act she does with her anxiety?  How many times have I put my thoughts before her?  This past winter I was concerned that Sweet Girl would not be able to participate in the Winter Concert at school.  True, she loves singing and she certainly knew the songs they were performing but I didn't know if she could be on stage with her peers and handle all that goes along with that.  I talked to Ms. Brown about it.  I talked to the music teacher about it.  I talked to Sean about it.  But it didn't occur to me to talk to Sweet Girl about it until the night of the concert.  I asked her if she wanted to do it.  She looked at me and said: "Um, well, maaaaaayyyyyybbbbbbeeeee."  And then Sean showed her the dress.  And she was the belle of the ball and wanted to do whatever it took to wear the dress.  I worried.  I fretted.  I talked to Ms. Brown again.  I prayed a thousand small prayers.  Mostly because I didn't want her to feel overwhelmed, but another ugly part of me didn't want her to stand out.  I didn't want her to feel that people were judging her and I was one musical interlude from pulling her before she even walked on stage.  But I didn't.  And instead of me smashing her kart before she could race, she stood on stage slightly apart from her peers and she sang about half the words to the song.  It was glorious.  Heaven's own angels could not sing so melodiously as the junior kindergarten/kindergarten rendition of "Frosty the Snowman" that night.  I nearly ruined that experience for her before she even got the opportunity.  Damn it, Ralph.

The real rub to that one is that Sweet Girl doesn't feel the judgment of others.  She cares little if others see her as a glitch.  This is also true to form for Sweet Girl playing Vanellope.  In the end, it turns out that Vanellope has the chance to rid herself of her "pixlexic" glitch.  Instead, and I could kiss all the employees at Disney animation for this, she chooses to keep it as a strength rather than make herself like the other racers.  Ralph redeems himself and makes his life better.  He's still the bad guy: that's his job after all.  But he understands that he's more than his role in his game.  That made me feel a little better about myself.  That if I can remember to put some faith in my kids and in the world, and just take a deep breath sometimes, we'll be OK.  Glitches aren't necessarily a bad thing.  It won't be perfect but nothing is. I'm happy to be the bad guy if it means that my kids get what they need, from fights over what's served for dinner to getting services for special needs.  I'll be the bad guy for that.  And just like the Bad Guy Affirmation, there's no one else I'd rather be.


Monday, June 24, 2013

Now We Are Six

When I was one I had just begun

When I was two I was nearly new

When I was three I was hardly me
When I was four I was not much more

When I was five I was just alive
But now I am six, I'm as clever as clever;

So I think I'll be six now for ever and ever.
~A. A. Milne

Sweet Girl turned six this Sunday.  It was wonderful.  
She dressed as a princess, blew bubbles, informed the world of her day, ate cake, opened presents.  She played in the pool and was indulged.  And she was excited and happy.  It was wonderful.  
This girl nearly hummed with electricity generated from anticipation and excitement on Sunday.  She woke up and exclaimed:  "Oh!  It's my birthday!  I'm so excited!" The rest of the day remained the same.  She was so excited to play outside.  She was so excited to put on her Sofia dress.  She was so excited to wear a birthday gown.  She was so excited that people came to have a party.  She was so excited about her cake.  She was excitement.  It was wonderful.
This year she had requests.  Much like Halloween, I was shocked that she had thought about it beforehand.  I was even more shocked that she had opinions about the whole thing.  Sweet Girl wanted a purple Sofia cake with a purple six candle.  And she wanted balloons and "lotsa, lotsa, cupcakes".  And she wanted it at Disney World.  My girl knows how to dream a dream.  Nana and I accomplished the cake and I found an acceptable candle.  Sweet Girl loved every minute of her birthday ("Mommy, this was the best birthday ever!").  If she missed the things unfulfilled that she requested, she did not mention it.  She was beaming enough to rival any Supermoon.  It was wonderful. 
And now we are six.  It is daunting.  Six is indeed young, yet it is a small demarcation that will only become more and more defined as the years pass.  Now we are six and we will act as six year olds.  Our differences will little by little become our definition rather than a question to some people.  We are six and it is time to put away some things from childhood.  I am not ready for this.
Sweet Girl has come a long way from the girl who couldn't go to the grocery store without a serious anxiety attack to the girl who sang the loudest when presented with birthday cake.  But Sweet Girl is not the six that the rest of the world expects.  Sweet Girl will remain younger than her peers because Sweet Girl does not develop in the same manner.  She will gravitate toward things intended for younger children because they are the things she knows and therefore do not cause her anxiety.  She will continue to develop and acquire new tastes, but she will always be younger than her age.  Schools, developmental pediatricians, and a good amount of society at large, will point that out in case I forget.  Now we are six and I'm not ready for this.
But we'll muddle through to the best of our abilities.  We will celebrate every little thing that isn't so little.  We will work on the things that need our attention, and we will continue to fine tune our understanding of what is really important. (So she doesn't always put the s on plurals, at least she has found a comfortable form of communication.  So she chooses to wear mostly purple, at least she is dressed and she is happy.)  There will always be a mountain climb or a fight to fight.  I used to worry that she would never talk.  Then I worried she would never potty train.  Then I worried that she would never have a friend.  In a year, there are a million worries but there is only one birthday.  This one was Sweet Girl's favorite.  This one was wonderful.  And now, we are six.

Us Two ~ A. A. Milne
My six year old.
"Let's frighten the dragons," I said to Pooh.
"That's right," said Pooh to Me.
"I'm not afraid," I said to Pooh,
And I held his paw and I shouted "Shoo!
Silly old dragons!"- and off they flew.

"I wasn't afraid," said Pooh, said he,
"I'm never afraid with you."

So wherever I am, there's always Pooh,
There's always Pooh and Me.
"What would I do?" I said to Pooh,
"If it wasn't for you," and Pooh said: "True,
It isn't much fun for One, but Two,
Can stick together, says Pooh, says he. "That's how it is," says Pooh.


Tuesday, June 11, 2013

Some Kind of Special

Sweet Girl, Ms. Wellen (also some kind of special),
and Ms. Brown
"What lies behind us and what lies before us are tiny matters compared to what lies within us."
~Ralph Waldo Emerson

You already know that Sweet Girl is special.  All God's children are special, but Sweet Girl is mine and so she is special.  And then you add autism on top of that.  And Sweet Girl becomes some kind of special.  She is a singing, scripting, constantly moving, loud, mostly happy, princess of a whirling dervish of special.  I know this.  (And I'm throwing it out there that I feel the same way about Little Man.  It's just that this is another post about his sister, so he's going to have to wait.  Which is not really his thing, but his day will come.  Promise.)  Everyday I see her and I know this.  Even through the exasperating ugly-kind-of-bad days, I know she is some kind of special that doesn't happen all that often.  She is special because of what lies within her - all that giggly, bouncy, kind, and musical sparkle that is her make up -  and because of the external forces working to help her let that inside sparkle out.  

This past week, Sweet Girl was promoted from Junior Kindergarten to Kindergarten.  She had completed the year and would be moving up the educational food chain.  This year has brought some great things for Sweet Girl.  She is reading, writing (neat handwriting is still a few years away), and doing simple mathematical concepts.  These are things I wasn't sure she would ever be able to do.  As her mother, I felt she was smart but communication is a challenge for Sweet Girl.  She processes at a different speed and in an entirely different manner.  School would not always be able to embrace or even understand that special part of Sweet Girl.  Fortunately, that worry lies (mostly) behind us.  Sweet Girl had Ms. S. as a pre-school teacher.  Ms. S. helped Sweet Girl understand the routine of school and how to deal with all the BIG emotions that go along with going to school.  Ms. S. did all of that while seeing Sweet Girl's potential.  A teacher like that is some kind of special.

Once we got used to the routine with Ms. S. it was time to move.  Then I went back to work.  That's a lot of change to take in.  Sweet Girl would need to face a new world of faces, expectations, schedules, and she would be going into a classroom that had no services set up for special kids like Sweet Girl.  I was worried.  Well, really I was terrified.  But then Sweet Girl met Ms. Brown.  And Ms. Brown was really nice.  And even though Sweet Girl was anxious, Ms. Brown worked her through it.  When the other students were curious about their classmate's differences, Ms. Brown came to me so she could make it better for Sweet Girl; she wanted to help above and beyond what was required of her.  I hated that conversation when it happened, but I will always love Ms. Brown because she didn't let the differences make my girl an outcast.  Ms. Brown is some kind of special because she knew Sweet Girl is different, not less.

We have a lot that lies ahead of us; increasing academic expectations, stressful social situations, the dentist.  Again, I am terrified.  Fortunately, there are a lot of people who are willing to help us navigate the scary terrain.  There are family members and friends.  They are some kind of special because they understand.  They understand that this life here (this life with all the special) is not the norm while also being as valid and valued as the norm.  There are speech therapists, occupational therapists,  BCBAs, and a whole host of others who are some kind of special because they choose to work with other people's special.  The waiting rooms of every therapy office display the myriad kind of special that requires a bit more help than others, and the people working there choose to help as their way of life.  That's definitely some kind of special.  When I think of all the people who helped Sweet Girl be able to participate in the JK promotion (I wish I knew how to blur out other children's faces in videos so I could post a video here - they're lovely children but I don't have permission to put them up on the Interwebz), I feel blessed.  When I think of how being Sweet Girl's mom has made me smile brighter; made my eyes leaky; made my heart swell to fill up hollows I didn't know where there; made me better, I feel more than blessed.  I feel some kind of special.



This song is Sweet Girl's favorite.  They sang
it at the JK promotion.  It was some kind of special.