Wednesday, April 1, 2015

Dear Autism

I just wanted to give you a quick thank-you for helping me do things I never thought I'd be capable of doing. There's tons of things I'm good at as a parent, but being social isn't one of them.  I'll probably never volunteer at my kids' schools, never join the PTA, and rarely am I able to make playdates for my kids.  See, Autism, I'm shy.  Like, seriously, painfully shy.  On top of that, I'm an introvert, which is like the double-whammy of communication issues.  My mind blanks when I try to talk with new people, I prefer to remain invisible when in public, and I have honest-to-God meltdowns before heading into a party or social get-together.  It's not pretty, and I accepted my limitations long ago.  But, Autism, you forced me out of my shell, and made me see a whole new side of myself.

When you first showed up, our son's school didn't want to recognize you, and this became my first inkling of changes I'd see in myself.  Let me just pause to tell you, like most of us who are shy and introverted, I've had some kickass arguments and even a few fist fights. In my head. And usually several hours after the fact. But never with an actual real live person.  But when the school refused to acknowledge you, I had to stand up for you and my son in a room full of indifferent strangers (otherwise known as the IEP team).  I had to (gasp!) speak in front of them, and ask them to give you more treatment. The IEP team said no, that they were already giving you all the attention you needed.  And holy cow, I got angry.  With a splotchy face from nerves and shaky hands, I fought for you.  I spent the next 45 minutes extolling the types of therapies you deserved, the amount of time you needed them for, and even quoted a few state statutes to scare them a little bit.  When it was all over, they'd agreed to give you everything we knew you needed and I couldn't believe what I'd just accomplished.

Then, Autism, you reared your ugly head in the middle of the grocery store.  Long before you, I had a daughter who was several years older than my son, and to call her strong-willed is an understatement.  I knew the golden rules of grocery shopping with kids: 1. break out snacks; 2: always have back-up games and/or crayons; 3: when all else fails, abandon the cart and run for the door, giving apologetic looks to everyone along the way.  But, we all know Autism doesn't play by the rules and there's no quieting you down once you get started.  And on the day you reared your ugly head in the grocery store, I found a fierce protectiveness in myself that I'd never seen before.  In the middle of my son's screaming fit, instead of shyly apologizing to everyone around us, I glared at them and silently dared them to judge you.  I refused to abandon the cart of groceries I'd just spent 45 minutes laboring over.  By the time I got to check-out, I was exhausted, weary, and just plain angry with you. So when the cashier made the comment "Well, I guess somebody needs a nap...," I'm pretty sure I burned her with the flames shooting from my eyes.  But I refused to apologize for our commotion, or to be embarrassed by it.  In the middle of a grocery store, when it felt like everyone was staring at us, I stood tall, looked them in the eye, and dared them to judge us.  I'd never been so proud of myself, and I have you to thank for it.

Oh! I know someone who..

My son was diagnosed with autism a few months ago, and it's been my favorite topic of conversation ever since -- sometimes I feel like it's the only thing I talk about anymore.  With autism awareness day approaching, I started asking myself why sharing information about this personal thing has become so important to me. It's not like autism has been a life-long cause of mine; I only vaguely knew what it was until a few months ago, and didn't know anyone who'd been affected by it.  Is it because I want to publicly share my son's autism? Not really.  He's got some classic signs of it, but honestly a small part of me hopes the diagnosis was wrong and in time we'll see he's just a slightly quirky kid with a speech delay.

Like every parent, I watched and waited for my kids to hit the milestones, looking for any sign of delays or abnormal development.  When my son's speech seemed delayed, and we noticed him flapping his hands now and again, my first thought was, "God, please don't let it be autism." I'm not proud of that, but it's true. You hear about it so much in the news lately, so it was the first thing to pop into my head. Autism scared me.  Not because I had images of grown men talking about boxer shorts from K-Mart; I knew autism was more than that.  What scared me was how unknown it was to me at the time. You can't see it. It affects everyone differently. There's no cure or medicine for it.  Even doctors trained in the field have trouble diagnosing it. Everyone's arguing over the causes of it.

I realized today, though, why it's so important for me to talk about autism and raise awareness.  It's so people I know who may be touched by this disorder, can be less scared of it and more accepting of a diagnoses because they'll know someone who's gone through it, too.  Thinking about autism in the abstract is very different than acknowledging it in your own life, and maybe like me, hard to accept the signs. They can know that, while we never wanted to see the signs and would have rather ignored them, we still acknowledged them and quickly sought treatment. Maybe they'll be more willing to recognize autism if they see it in their kids.  They'll see that I'm happy and so is my son, and that he didn't suddenly change because of a diagnosis.

Before the diagnosis, I had no role models for living with autism. I'd seen videos, talked to professionals, and read blogs, but that still didn't make me less scared or accepting of it in our lives.  When we hear someone say, "Oh! I know someone who....," they're saying those words to bring the topic closer to home, to humanize it and make it real. Since I didn't know anyone who'd been through it, I hope by talking about it so much I can bring autism closer to people I know, so they "know someone who" themselves.