Thursday, August 22, 2013

Opps, my words fell out.

There's song out on the radio (94.3 THE POINT!!! and yes I sang that radio's jingle as I typed it) right now called "Brave" by Sara Bareilles.  I know it's pretty poppy and probably makes me a 12 year old for liking it.  I don't care.  I FREAKING LOVE IT!  Is it possible to have a blogging theme song?  Cause from the first time I heard it that's what I thought it was for me.

"You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up"

Words just make up every single flipping thing.  In this autism house we live in, communication is such a huge part of our lives.  What we meant.  What he understood it as.  What he was able to communicate back to us once the words were out there.  Autism has taught me so much the weight of words.  Trying to explain how I feel to others who I hope either understand what I mean or at least can appreciate what it is I'm trying to say.   There's no font for tone.  I just have to hope I wasn't completely off my rocker when I put it out there.  Let's face it, most of the time it is.  I'm just hoping people just blame that on me being sleep deprived.

"But I wonder what would happen if you
Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave"

I know what happens.  Change.  The more I talk here and on Facebook or Twitter, the more I can organize my thoughts.  I have been able to assess with less panic what it is that needs to be done first.  I'm still overwhelmed but that's what wine and bitching in my blog is for.  It just seems a little more doable.  The more I speak, write or advocate for my kiddo, the natural it seems to be.  It's still hard and there are days where I just sigh and think "Oh Christ I got to explain this blah blah blah to yadda yadda yadda AGAIN?!?!?" but I do it because if I don't "let the words fall out", nothing will change.  Nada.  We'll stay stuck and that doesn't help at all.

"And since your history of silence
Won’t do you any good,
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?"

In my own 'history of silence", I was very closed off about what was going on in our autism home.  That was really dumb.  What was I trying to keep silent?  That he had autism because you spend two minutes with the kiddo, you're gonna know.  There's no real surprise there. Who knows? I certainly don't go looking for trouble but dammit, you bring up my kid, IT IS ON!  The longer time served in this autism army, the more I am ready to jump in when I see one of our own being picked on.  Seriously, have you seen how fast autism parents channel their anger into advocacy online?  We have to remember how fast and how furious our wrath is.  If you are going to hear from us, you will not forget what we say when "the words fall out."  Especially when you folks try to challenge the rights our kids should have.  Honestly, it's like you bringing a knife to a gunfight. We will own you.   I try to remember to make my words pack a punch though.  I don't respond to every bait thrown my way.  Some trolls aren't worth the effort to turn on a computer to write back.  If you hear from me, you will remember it.  Even if we never speak again.

Mostly the song reminds me to try.   Even when I am so tired and cry "What the eff was I thinking?".  Nine times out of ten an activity might bomb but I will still think of that one time it worked for him.  I will remember how glorious it felt and the hope that it brought.  Those other times, well I'll just order another side of fries.



1 comment:

  1. I found your blog by accident 3 days ago through facebook(!) and have been engrossed in between dealing with my own "kiddo". I know each child and situation is completely different, but I have to say, I have never felt such a kinship. My "Kiddo" is 7 and most days I feel like a total failure. Your words have helped me to realize, I am simply doing the best that I can with a child whose life can change not just daily, but any given moment. The hubbub of Christmas has sure been an adventure, but one that hasn't been too horrible, he loves and craves schedules, so keeping track of the days leading up tomorrow have been awesome for him. Like you, having to plan out every single moment has been my biggest challenge since before him, I was totally a fly by the seat of my pants type of gal. My girl "kiddo" is very much like me and having such a rigid schedule is a source of stress for her. Surely there is a balance somewhere, right?!?!? Okay, time to get the boy in the bathtub, since the schedule says he is going to take a bath at 5. Merry Christmas! Thank you!