Friday, June 3, 2011

What in the heck does all this mean?

Today is World Autism Awareness Day. I have seen a lot of people wearing blue - for the Light it up Blue initiative sponsored by Autism Speaks. Facebook is buzzing with article, blogs, personal stories and so much more- it is heart warming. I am wearing my Autism Puzzle Piece necklace from The Puzzling Piece and have had several opportunities to speak with people and tell them what today is all about. One of my other blogs, have Autism  was featured in my local paper which got a lot of attention as well. Autism Awareness Month has started with a bang for me- and I am hoping to keep that ball rolling.

I know what autism means to me and my family. I live it, breathe it, sleep it. It is not a mystery to me and I can tell anybody that asks me what Autism means to me.  It means doctor appointments, it means vitamin supplements, it means sleepless nights, it means strict routines, it mean no scratchy tags in shirts, it means evaluating situations and deciding if my son can handle all of the stimulus, (usually not), it means IEP's , it means fighting for education, it means continuous advocacy and never settling for less for my son. It also means making sure my other kids know they are loved, special and in no way defined by their brother's Autism- any  more than he is defined by it. It is a HARD job..being a parent itself is hard- raising a child with Autism just upped the ante. 

I have many friends with children on the spectrum. I hear their stories, relate to their stress,  celebrate their children's accomplishments,  discuss treatments, doctors, extracurricular activities and so much more So I decided to ask my online friends- how has autism affected you- what does it mean to you? And this is what I want to share today- one of the responses I received. It isbeautiful. It is heartbreaking. It is hopeful. It is absolute love. Thank you Monica Ternovan - Ty is lucky to have you for his mom. I raise my wine glass to you- let's finish the bottle together some day.

I see the world differently. I evaluate every sound, every lighting scenario. I scan for triggers, ones that I still cant always identify but I am constantly vigilant to try and decipher. I have learned not to sweat the seriously small stuff. I have let go of "societal norms" and grabbed hold of what makes life more bearable/pleasant for my kid. I've watched friends and family back away from us and declare it "impossible" that he is on the spectrum as if somehow "willing it away" will make things better for Ty. I have released my expectations and learned to live each day with an attitude of success and positivity, often ending my day with a weary sigh and a glass of wine. I used to say I wouldn't be like my parents, drinking in the evenings after a long day, but now that one glass is my solitude, my moment of reflection, my partner in this chaotic journey. I am learning a whole new language, one filled with terms like "on the spectrum" and "triggers" and "being unable to process". I don't see that child in the Wal-Mart having a meltdown as "bad kid" or that mother as a "weak parent". I wonder if she too is struggling with living along side her child on the spectrum and trying desperately to maintain some sense of control of her life and that of her other child(ren) while g
iving herself over to the fact that she is forever going to see the world in terms of how it might affect that child's autism. I have gained a deeper love and compassion than I ever thought I was capable of, though tested over and over, I am frequently surprised by my own ability to let it go like "water on a duck's back".