Monday, April 22, 2013
Why I do what I do
I remember back a million years ago, to the end of 2008 or so. My son was about 16 months and it was becoming obvious...he was different. He was so laid back and not at all demanding so it was easy to brush off my fears and say "He's fine. Boys are just less clingy right?"
These were the early days. My mother was pushing me to find out what was up with him. He wouldn't really respond to his name and wasn't talking at all among other weird things. His babble was this crazy alien babble and bar codes were like the coolest thing on the planet. Something was going on, but what?
"I just need something I can google!!"
My mother would chime over and over again.
Finally she usurped my authority and emailed Easter Seals. I'd like to say I was a graceful, proactive mom who called ECI myself about my 18 month old and my concerns, but no. My Mama did. He started services immediately, January of 2009 at 19 months for speech delays. He soon qualified for occupational therapy and the A word started floating around. Again it was my mom who kept going back to it, while I tried to ignore it, like a buzzing gnat. I have to say my mom kept me sane in those days. I started getting google happy myself. It seemed like the only outlet to the HEAVY question mark that floated around my sweet baby boy's head. What was going on with him??
In those early days I tried so hard to find people going through the same thing. Having the same fears. I know lables Get a bad rap but It's almost like a kind of purgatory not having one. Not knowing why your baby isn't like all the others. Feeling that crushing question mark permeating every aspect of your family's future, because let's face it, your mind will go to the worst possible place when given free reign.
I would write here and there when I found that the pressure was going to make me burst or pop some other much needed valve. We ended up lucky and only had about a 6-8 month wait to get in to see the developmental pediatrician. My sweet 27 month old BABY was given an official diagnosis of High Functioning Autism and Sensory Processing Disorder. I can remember after they told me, looking at me I guess waiting for me to break down. All I could feel was this inappropriate laughter bubbling out. That question mark was gone!! Albeit replaced by a puzzle piece but that at least meant a direction to move in, a group of people to seek out... Something to freakin GOOGLE!
After that, over the years I kept thinking about that awful time, before the diagnosis. That was the loneliest, most frightening time of my life. After that I would randomly meet a new parent, see the effects of the heavy question marks that had so recently been all over my face and end up pouring my heart out to them, knowing exactly where they were and just how hard not knowing was. I would describe our experiences and see how just hearing that truly helped. It made me want to help more.
It wasn't until 2011 that Mommy Buddy from the planet Autism was born. I would call Emerson buddy so much that one day he looked at me and said "Mama... Buddy?" He always seemed like an alien being, to be figured out, but bound to me, like I was supposed to be his liaison to the world and help him understand it. And vise versa.
So I finally had a place to compile all of my word doodles and observations in one spot, rather than lose sheets of paper that ended up as the back of scribble MASTERPIECES.
Over the last year and a half I have connected more than I ever thought possible. I had no idea Mommy Buddy would become my life line. I have met SO many wonderful people and formed REAL bonds. Whenever I see a brand new page start I feel overwhelmingly motivated to help them. Give them the opportunity others gave me, because I can see that they too are addicted to that feeling of need. NEED to help the parents still in that purgatory, still living shrouded in the worst fears for their child. And the ultimate feeling of community and FAMILY that comes from being a member of the "I love an Autist" club. Like any family we have our issues, we fight over things we all feel passionate about, but we support each other like nothing else. I'd say that is the very most unsung benefit after diagnosis. Our community makes me feel like I have an army behind me where ever I go and together we can truly change the world for the better.