The Big Bad Autism Monster?by Pavarti K. Tyler
Autism is the 800lb gorilla standing in the corner of most rooms I enter. Do you nod your head in greeting? Is allowing its presence to be acknowledged somehow making excuses for yourself and your child or is it simply the reality of our lives which needs to be recognized? The thing is, you never know, it changes day by and situation by situation. Life with a child on the spectrum has no clear answers.
My daughter was diagnosed with PDD-NOS in 2009 after having an extremely traumatic Pre-K and Kindergarten experience. Despite my pleas for help it wasn't until I pulled her from school and went to a private school that the teacher there suggested we have her tested for Autism.
When it was first suggested you could see the terror in the teacher and principal's office. They sat my husband and I down and tried to soften the blow as much as they could. What they didn't know what that the 800lb gorilla was already in the room, it just didn't have a name. My five year old was miserable and had been for almost half her short life. To have something with a name and a test made us feel like there was hope. Not the reaction of most parents I know, but I had watched as that giant monkey tracked my daughter with his eyes, licking his lips hungrily, waiting for his opportunity to consume what joy was left in her life. Now I had a big stick and I was going to beat that gorilla back to its corner.
PDD-NOS stands for Pervasive Developmental Delay - Not Otherwise Specified. It's about as general a diagnosis as you can get. It basically means: yep, you got one weird kid there, let's see if any of these things we have seen work with other weird kids works for yours.
I actually really like the diagnosis. It fits my little Ninja perfectly. She's doesn't have aspergers and she is not what folks stereotypically think of as autistic. What she is, is a Ninja. She is funny and smart and difficult and is often overwhelmed and frustrated. She is exactly like every other kid I've met, except for all the ways she's not. Strangely now that the gorilla has a name he's calmer and seems pretty happy with his place in the corner.
It's like children and pets; you aren't supposed to name them unless you intend to keep it. Our gorilla is here to stay. He isn't well behaved and often means that people look at me in the grocery store like I'm the meanest parent in the ENTIRE world, but he's a part of our family. When he comes barreling into her classroom and throws her equilibrium off balance sometimes it feels like the world is going to end. But most of the time, now that she's taken some gorilla handling classes and made friends with him, Ninja can give him a banana, make a joke about him not sitting on anyone and convince him to stay in the corner.
Ninja's PDD-NOS is not who she is, but it is something that will forever complicate her ability to navigate the world she lives in. In a world with right angles she lives closer to 78 degrees. It's not a bad angle; just not one folks are used to.
We live our lives with a live emotional grenade held by an 800lb gorilla, and I wouldn't trade any of it for the world.
About the author:
Pavarti K Tyler is an artist, wife, mother and number cruncher. She graduated Smith College in 1999 with a degree in Theatre. After graduation, she moved to New York, where she worked as a Dramaturge, Assistant Director and Production Manager on productions both on and off Broadway.
Later, Pavarti went to work in the finance industry as a freelance accountant for several international law firms. She now operates her own accounting firm in the Washington DC area, where she lives with her husband, two daughters and two terrible dogs. When not preparing taxes, she is busy working at Novel Publicity as the Director of Marketing and penning her next novel.
Thanks for a great post!
ReplyDeleteI have a Ninja, too! I've blogged her as "Sprite" because "Spawn" is just so unfriendly. She has the same emotions as other people, except hers are just... BIGGER. And more constantly changing.
And yet if she were any other way, she would be a different kid, and she's an amazing kid.
I like Sprite :) That's a good term. Ninja is very in touch with her emotions and very intuitive about other people, sometimes she's so aware of them it's overwhelming. She feels everything so deeply. I'm amazed by her and sometimes it breaks my heart, but I adore her just the way she is. Thanks for the support SM. I'm always around if you need someone to chat with or complain to or just say it outloud to who will understand.
ReplyDeletePav