Wednesday, April 30, 2014

The Luckiest

Ha! You thought I'd forgotten.  You thought you would get away with not hearing anything new from
What's not to love?

me the entire month of April.  April, which happens to be the Month of the Military Child and Autism Awareness Month, is almost over  but the military children and the autism will remain long after we stop wearing ribbons or lighting things up blue.  And it seems that we hit the awareness hard at the beginning and as the month progresses with more spring flowers emerging, and the end of school nearing, and life happening.....it goes to the wayside.  So we're going to pretend that I planned ALL ALONG to wait until the last minute.  It was all a part of my plan to keep awareness at the forefront. Because that's what I do: make plans and stick with them.  I repeat myself, but, Ha!

This year I did a lot of reading on other blogs.  Some of them made me laugh while others made me cry, but the ones that I still think about are the ones that made me uncomfortable.  One such blog discussed how, throughout the month of April, Autism Awareness makes some people keenly aware of how different they are from others.  That, with all of its good intentions of awareness, many of the things discussed in April focus solely on the negative aspects of autism and the positives or even just the "averages" of autism do not get as much coverage.
At first, I wanted to defend the need to tell people about the challenges autism presents.  I think it's important for people to know that autism can be hard.  It can take away voices, hugs, and connections.  Autism can become an all-consuming, nebulous entity that steals joy from moments both big and small.  I wanted to say that it was more important for people to know the bald truth about autism; the truth not photo-shopped or sugar-coated, than for people to think about everything else.  I wanted people to be uncomfortable, upset, and maybe even a little angry, because people are more likely to DO something if they are one of those things.  Happy people rarely go about rallying the troops for a revolution, you know.  Thomas Edison once told me (Just kidding! I'm not that old.): "We shall have no better condition in the future if we are satisfied with all those that we have at present."  In other words, if we're happy we will not seek change.  And there is a great amount of change I would like to see happen for my daughter and the other 1 in 88 affected by autism.  Some of that change is within our control, but most of it is not.  So I wanted to believe that the best way to make it happen was to make others aware of what changes need to be made.  It is not totally incorrect to think that, but now, thanks to others, I see that it can be misguided.

It can be misguiding because if I focus you only on the challenges and the negative aspects of autism, then I've actually only given you one side of a story....and in reality I've only given you one side of a condition rather than presenting to you the majestic and marvelous being that is my daughter.  She is complex and often unpredictable (despite her desire for routine), but she is always a person before she is a label.  She is three-dimensional and is not easily described in words.  She lends herself more to motion and song, often defying social norms - many of which she happily unaware - to broadcast joyous melodies and interpretive dance to any who may or may not be watching.  I think about how she would feel if all she heard about herself were the "less than" comments we often find on evaluations or report cards.  I am saddened by that thought.  I am then comforted by the fact that she often could not care less about the opinions of others in regards to herself.  But I know that she is becoming ever more aware of how people perceive her.  And then I think awareness shouldn't be hurtful.  Uncomfortable, yes (PROLETARIAT, UNITE! Thank you, Mr. Sinclair.), but not hurtful.

So please indulge me for a paragraph as I change my tune.

More to love
There are many ways in which I am lucky.  My husband is a great man who loves me and our children.  He works hard for us all and is a true partner for me when making a home and raising Sweet Girl and Little Man.  I am lucky to have him in my life.  I am lucky because my family is quite amazing.  They are a varied and assorted lot; a veritable motley crew of characters that I would not trade for the world.  They are supportive from near and far and I know my life is better because of them.  I am lucky because I have the opportunity to teach.  To, hopefully, help students learn something new everyday.  I am so glad that I get to teach with great people everyday - not everyone does and I know it was a significant stroke of luck that led me back to an old friend so that I could make new friends as well.

I am lucky.  But even more importantly, I am lucky because Sweet Girl and Little Man are in my life.  Without them I would not be kind in some of the most basic ways.  I wouldn't be mean, but my take on life would be so different that I wouldn't even know how far removed from kind I would be.  Sweet Girl's (and Little Man's in all honesty) struggles broke my heart, but I am lucky because that made it stronger.  I am lucky because it made my eyes see the scars on my arthritic heart for what they are: beautiful.  I am lucky because Sweet Girl has made my ears hear better.  Without her, I would not have known what love sounds like.  I would not have heard how emotions are better expressed with melody and motion, because sometimes speech is too plain for such grandiose ideals.  I am lucky because my hands have been comfort from the world.  I now know the power of touch (seeking and avoiding) and I have seen that holding the smallest hand has made the biggest difference.  That is what my children and autism have given to me; everything.  I do not think I would have been brave enough to sign up for this task had I been given the option.  And I'm sad for that alternate reality version of myself.  That version has plain vision, can't hear as well, and her heart seems to be unadorned with any kind of scar: all the symptoms of a life less extraordinary.  I think about that version of myself and I know that I am the luckiest.  I just wanted to make you aware.

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