Monday, April 2, 2012

Autism Awareness Day

I keep trying to find the words to say what I am feeling and for once I am finding it very difficult. Rarely am I at a loss for words and never about something I am so passionate about. This... This is so different for me because it isn't just in my own backyard, it's inside of me. Autism is only a word, it doesn't have any REAL power , right?

The new numbers are 1 in 88. Those numbers are from 2008. The numbers themselves don't matter to me. The statistics don't really matter to me. Sammy is part of that number. He was diagnosed in 2007 at just over 3. He didn't speak, he didn't sing... he didn't even know me. He couldn't dress himself, feed himself,or play. He cried a lot, he was naked almost all the time and I would spend my days wondering how I messed my kid up so badly. I see that number and I see so much.

I  see that number and I see myself sitting in the neurologist's office and thinking I was about to hear that my child had ADHD and was just young for his age. I remember the numbing feeling that crept across my body followed by white hot sparks of lightening as he told us "Your Son Sammy has Autism, there is nothing you can do, ABA may help"

I see that number and I remember feeling so hopeless and lost. I remember the binder my friend Michelle gave me to help me keep track of the journey we were just beginning. I remember walking through the grocery store, feeling like I was on the battle field trying to figure out how to help my son and if his diet was a key. I remember sitting at the Fort crying and shaking being afraid to tell my friend that Sammy had autism, because I KNEW the doctors were wrong and feeling guilty because her son really did have autism. I remember the moments where I would be standing there trying so hard to catch my breath that  I couldn't even think. I felt like I was drowning all the time. I felt alone even in a crowded room.

Then I started You Leave Me Breadless. It has changed shape drastically in the past 4 years but through it I have found some of the most amazing people who "get it" I don't feel so alone anymore.

I see that number and I also see an amazing young man that makes me smile every day. A young boy with a sparkle in his eyes and penchant for mischief. A child learning to tell jokes. A child that loves me, knows me and the world around him. He looks at the world through very different glasses than I do but that is all just fine. I see a boy who lights my world up blue 365 days a year. He makes me cry with the sheer joy of watching him discover and feel the world around him in a way most people will never be lucky enough to. He lives life with a reckless wild abandon that I can only hope to muster under the best circumstances. I see him as one very amazing unique child that is just simply Sammy.

So yes, I am lighting it up blue (even my hair) and I am making the world aware. What I want most for this day, for my Sam I am... is not just the awareness that he has autism. I don't care about the label, it is after all just a word. I care that when the world hears that word that he is autistic they understand the REAL meaning behind it.  That AUTISM isn't the end. It doesn't change our children. It doesn't matter  what we call them really, it DOESN'T CHANGE THEM. It changes us. I hope and pray that the awareness days-months-years lead to people understand the sheer awesomeness that is our children. The sheer power behind who they are and our role as parents. Our kids are awesome. they make us laugh and cry just like everyone else. Yes it's hard and yes some days it sucks. Honestly, my kid is awesome and if Autism has a part in making him who he is, I can live with that.

feel free to check out these other bloggers this month. If you think there is someone I should add please send it along

Try Defying Gravity
Diary of A Mom
Susan Senator
Extreme Parenthood
Yeah,Good Times
Lost-and Tired