I’m Blue For You…

When Thomas Alva Edison invented the incandescent lightbulb Autism didn’t have a name.  Rumor has it that Virginia Woolf, Andrew Jackson, Vincent Van Gogh, Andy Warhol, Isaac Newton, Albert Einstein, Leonardo DaVinci, and Andy Kaufman might have been autistic.  Daunting company, isn’t it?  When one reads a list like that the desire to put that blue lightbulb on the porch increases, even if one’s autistic child doesn’t quite rank up there with the members of the “were they/weren’t they?” list.  Yes, one wishes one could be parenting the next Temple Grandin, but -more often than not- one is parenting Autistic Child X and hoping that it all turns out well…

There’s our blue lightbulb.  It’s fluorescent.  We will turn it on tonight and we will dress in blue tomorrow.  It is our drop of water in the awareness bucket.  The big ladle of water we contribute to the awareness bucket doesn’t go around in blue, thank you; he wears red and he likes hats and boxing gloves.  If people don’t realize how real Autism is from observing our day-to-day life with J, a little blue bulb isn’t going to make a heck of a whole lot of difference, is it?

Spring Break week is here.  The weekend has been as run of the mill as it gets.  We’ve done a bit of gardening, some cleaning, a few loads of laundry.  We explained to J that he could not put up the PECS for BACKPACK and BUS because there’s no school this week; we dealt with his slight disappointment and made plans for entertaining him over the next few days…when he is inclined to be entertained.  That is my main concern right now: timing!

I make no bones about the fact that I often feel as if I’ve failed as a parent.  (I think EVERY parent feels that way at one point or another.)  If I could rewind the past seventeen years, I would probably do more to be conversant in all things Autism.  I would also be better prepared to deal with the ups and downs of J’s situation.  As it is, I feel like I’ve been flying by the seat of my pants and I’ve fallen short in many areas.

As we walked out of the store today (we went to find more things to entertain J with over the course of this week,) I was telling my husband of my frustration.  “I’m sorry I’m telling you this, but there’s no one else I can actually TALK TO about this.”  I can write about it, I told him, I can think about it…I can draw a picture and break things when I’m overwhelmed with frustration, but it’s hard to have a conversation about this.  “Funny,’ he said, ‘I feel the same way; my frustrations about J and the entire she-bang that is our life are only easy for me to discuss with you.”  We both go back to what people see and perceive and what is…and then we shake our heads.

I know people (well, I am related to people) who have no clue what J is like.  Because they don’t know what J is like, when they mention switching their porch light for a blue bulb makes me cringe.  I want to say “so, you couldn’t be here to help out through the past seventeen years and the blue bulb is supposed to make me feel better?”  I know, people, please don’t tell me I’m being unfair because this fact does not escape me.  It’s not so much bitterness as not understanding why the cause is more important than the actual people that make up the cause.  This leaves me dumbfounded…

Autism Awareness takes up more than a day (or the month April.)  Those who live with it (whether they are autistic or care for someone who is autistic) cannot get away from being aware.  Even when other characteristics take over and Autism recedes into the background, a trait that compounds with others without overwhelming or dominating them, it’s hard to get away from IT.  Like Mothers’ Day, the gestures of support and understanding are appreciated, but they can’t stop when the blue lightbulbs are shut off and put away until next year.  We do this every day; it is evident every day…

I don’t know if any of those supposedly-autistic celebrated people were, indeed, autistic.  I never thought of them as anything other than extraordinary.  Of course, I don’t think of J as anything other than extraordinary.  By the same token, I don’t think of TGG as anything other than extraordinary.  The truth is that everyone has something to contribute to this world, some people are more aware of what it is they are contributing than others.  I have yet to determine how monumental or trivial my contribution is, and I’m pretty sure that this won’t be determined until I am no longer around to be tickled pink or mortified by this knowledge.

All I know is that, like all the other moms and dads and siblings and grandparents of autistic kids out there, we wake up and do our best (sometimes resembling Donald Duck in the middle of a tantrum) even on days when blue is nothing other than the color of the sky.  It’s what we do…we are true-blue every single day, even when we don’t feel like it and we promise ourselves we’ll be anything but…

Like Mothers’ Day, yes…like our birthdays and Christmas and every other day that people earmark for making others feel special, appreciated, loved, noted, notable, worthy of the extra effort…at midnight tonight it’s just a bulb.  What we really need to do is look at the people, all of them, day in and day out…

THAT is awareness…

 

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