Tuesday, April 2, 2013

Light it Up


Purple and sparkly
Well you knew it was coming.  I'm not consistent at posting, but this month usually reminds me that I have a soapbox on which to stand and a substantial set of lungs with which to share my voice.  April is Autism Awareness Month.  Today, specifically, is World Autism Day.  April is also the Month of the Military Child.  So, yeah, it's a big month for my big mouth.  I've talked quite a bit about statistics and what Sweet Girl does and what autism is like for our family.  It's part of my awareness campaign that doesn't begin and end in a month.  Mostly I designed it that way because autism doesn't begin and end in a month.  (Or maybe I designed it that way because I really was just writing without a plan, but the first idea sounds better.)  I've talked about the emotions that have hit me and my family in relation to autism.  I've talked about the challenges of diagnosis, treatment, and
day-to-day life.  I've talked about a lot of things.

The honest truth is I'm tired of talking.  I am one of many, whose ranks grow larger everyday, who have been talking about this for years.  Autism didn't just show up.  It's been around as an official diagnosis as far back as the 1940s.  People have been talking about it since then.  Celebrities and sports stars have had children or siblings on the spectrum and have used their positions to discuss what that means.  Scientists and doctors have been arguing about causes since one of them deemed that it was the fault of the mother (clearly a man, and clearly not the brightest of men), and then it was the fault of television, and then it was the fault of the environment, and then it was a host of other things - all deduced from thousands of studies, wasting who knows how much money, to find a correlation between certain things and autism.  And as any researcher worth their grants is aware; correlation is not causation.  Wasted money.  All talk.  Nothing truly ventured: certainly not much gained.  Talk, talk, talk, talk, talk.

I'd rather do something than talk about it at this point.  So today, I'm lighting it up.  But I'm not playing by the rules - autism doesn't seem to play by any certain set of rules so I feel it's appropriate - I'm not lighting it up blue like so many others are on World Autism Day.  I think it's a great campaign and I love the idea of a visual representation, but blue is not our autism.  Blue is melancholy and sadness.  Blue is reverent.  Blue is conservative.  Blue is calming.  Blue is mysterious.  Autism is none of those things in this house.  I won't lie.  Autism has made me melancholy and sad in the past and certainly it will throw that blue veil over me again in the future.  But I'm working hard not to let it.  Working hard not to let that blue obscure the sweet girl with whom it mingles.  And I'm sure as hell not calm about autism.  It's every blue word I can recall when it's considered acceptable and adequate care for doctors to look at parents, children, young adults, and adults who have questions about autism and say: "No known cause, no known cure."  And then send them out the door.  That actually makes me see red.  Nope.  Autism here isn't blue.

Also purple and sparkly
Lighting it up with bubbles
Autism here is purple.  Correction: it's sparkly purple.  It requires more than one primary color.  It demands to be seen and acknowledged for its brilliance.  It's usually pretty happy.  It's deeper than most give it credit for until they take a look at the layers that are required to create such a hue.  It takes a mixing of many things; hints and shadows of people and songs, tv shows, and iPad apps, emotions and crystal-clear memories.  At our house, autism fluctuates between the deepest violet to the palest lilac depending upon the day.  The sparkles are always there as well.  Sometimes as a mirror reflection for others and sometimes as a way to draw attention, regardless of appropriateness.  Autism here is sparkly purple.  So that's what I'm lighting it up today.  I hope you light it up too.  Whatever color autism is for you, I hope you don't just talk about it.  I hope you light it up.        

3 comments:

  1. AMEN sister!!!! This is the best description anyone has ever given in my book! You ROCK!!! Then again, your grandmother was the advocate of common sense and great purpose that I wouldn't expect any less from you! No doubt that you and your purple sparkle are very special!

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  2. I felt exactly the same way when they lit the Empire State Building blue--it's the wrong color. It's depression and sad songs. Instead, I would have preferred the whole spectrum of colors, because we've got folks on different points around here.

    Autism makes me angry, sad, and worried for my children and their future. THEY don't make me angry or sad, but the disease wears me out. I love who they are, but I would wish it away if I could. But you know, one day at a time. Today, Four told me he earned extra points in chorus for singing all the songs so well. So maybe our autism isn't so much a color as a song.

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