Saturday, April 16, 2016

This...

~"Welcome back my friends to the show that never ends..We're so glad you could attend..come inside come inside.."~Emerson,Lake and Palmer



             
         






                 Annnnnd another month of awareness is upon us...another month where people scramble to put on their ribbons..and sign up for walks..The Empire state building and other places "Light it Up Bluetm"!..This is it! The one month a year where people on the autism spectrum exist matter! Better make it MEAN something! Sparkle everyone-sparkle! Oh how I hate it..
   

  Don't get me wrong..I think that it is important to know about all kinds of people..to celebrate diversity..to understand that people come in all shapes, sizes..neurologies!...Those are wonderful things to celebrate..explore..learn about..But come on..does everything need a ribbon? Good lord-I could cover myself head to toe in the various ribbons of every possible cause and not have to worry about clothes for days.. And light bulbs! There are actual blue light bulbs that you can purchase to "Light it Up Blue"!tm ..to...I don't know..let people know you are extra aware? Extra aware and enjoy looking like a vampire? Doesn't anyone realize that blue lighting makes them look awful? I just don't get it. Autism awareness month has been around since the seventies..I'm pretty sure that people get it by now.(cue drum roll and cymbal crash).Autism exists. Now what?  

  I have to admit-I'm kind of worn out-worn down by all of it.  I have terrific kids...they are (for the most part) responsible, caring individuals...they are all somewhere on the spectrum. I say that because it is important to understand that while they share a diagnosis-each of them are different from each other.That's autism. It isn't one way-it is many different ways. What is significant to one person may mean nothing to another. *sigh* it sounds simple...but it isn't..

 This is the month where people(on-line) go out in full force...There will be the "How dare you write about your kid that way posts" followed by "the "How dare you say being autistic is amazing! My child, My life is deeply affected by all this!" posts and the "I feel guilty because it isn't easy and my life is falling apart posts" with (of course) the "You should feel guilty rebuttal" posts.  The on-line autism "community" is not the same as when I started blogging. Instead of supporting each other-we fight..instead of listening-we react...Instead of changing the world-we stay stagnant.

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  I can not sit here and say that autism is the greatest thing that has ever happened to my kids...and I can't say that it isn't..because I don't know.  what I can say is that these are the children that I have been blessed with. That is it. It has not always been easy..sometimes it is downright terrifying-There are far too many nights when I don't sleep..I toss and turn-overwhelmed by fear..and the "what if's" ..the feeling that I should do more-and the guilt when I don't feel like doing anything..or worse-when I think that I haven't done enough-could have done more-should have done better. And the future!  What. about. the. future?! EEEEK! Sometimes, I just want to run away.

 I usually write a post every April..Something about awareness..blah blah blah...and I suppose that this year, I'm doing the same thing...But as I sit here writing..my daughters are in the room..Zoe, has decided that anytime Lily speaks...she is going to dance to Lily's words..with great gusto..Which is extremely funny to everyone...but Lily..at first...but she eventually breaks down and joins in-and in the background..Oscar is eeeing..and Sam is drawing and talking to Omar about his ideas..and the cats are winding around my legs and the kitchen is a mess because I've been baking..and.I look at this...soak in this family of mine..this cacophony of sound and smell and mess....and it is as if a light has gone on..(it is not blue) THIS...this moment of absolute chaos-and harmony...it is all of it- mine. This absolute joy shrouded by uncertainty-THIS is my awareness...Our awareness...and it feels just fine..

4 comments:

Anonymous said...

Beautifully said. I love Zoe's interpretive dance. ��Ei

kathleen said...

@anonymous-thanks...and the dance was hysterical! :)

Jazzy Ville said...

Very creative of your Zoe. To dance to her sister's words! I love it!
I don't do anything for this month any more. But I do support any Autism initiative any time of the year :-) xx Jazzy

Looking for Blue Sky said...

Your writing always invites readers into your life, we can see and hear your family and it always sounds like a lovely place to be xx