Avery Grace

Avery Grace

Wednesday, June 29, 2011

Born this way?

One of Kaylin's (my DJ in the making) favorite songs is Lady Ga Ga's "Born this way." Already a lyrics lover like her mom, Kaylin can belt out most of the words to her favorite tunes, and this song is no exception. It's pretty impressive to see a 3 year old sing along to the radio. I love the message this song sends out, and it makes me smile from ear to ear to hear her sing it... it's empowering and accepting, two pretty important traits to have in this little family of ours. But something about it also kinda irks me... and it's not the song, but something else entirely that I have always struggled with. Avery was NOT born with Autism. She was born perfect. She ended up with Autism, but she was not "born this way."

I guess it really doesn't matter, right? Well, it shouldn't matter. But it does to me. Something HAPPENED to my precious girl. And don't get me wrong, I don't love her any less or anything crazy like that, but for whatever reason it is important to me to share, to freaking shout out from the rooftop... that something TRIGGERED her to develop Autism. She may have a genetic pre-disposition, just like I probably do to develop diabetes, and other people do to develop certain kinds of cancer... but then something happened around a year and a half old that spiraled her development into one of the most severe cases of Autism I have ever seen. I have video of her waving, blowing kisses, talking, babbling, signing, referencing, looking,... all of which are nearly impossible for her to do now... AT FIVE.

I wish I knew for sure what it was for Avery. Many friends of mine SWEAR on one toxin, a certain vaccine or the combination of them, on a particular virus or bacterial infection... but for Avery is seems like the perfect storm of physical reactions and toxins took over her brain and body and wrecked her immune system and central nervous system. If I had to bet, I would say that the 18 rounds of antibiotics, severe allergic reactions to penicillin and vaccines, systemic inflammation from her autoimmune disorder and so on ALL contributed... but I am not sure exactly which is the MOST to blame. Whatever... my point is, she was ABSOLUTELY 100% NOT "born this way."

But, "get over it, right?" She is who she is now, and that girl is pretty AMAZING! I read something recently from a pretty seasoned Autism Mom who said one of her regrets was that she was not whole enough when her son was little to ENJOY who he was and just let it be... that she was too wrapped up in "fixing" the "problem" that she couldn't just accept his atypical development and move forward with various therapies and interventions to help him be all he could be. This really hit home for me. I need to shift my focus and let go of who Avery was before Autism took over. It happened. In many ways I may never totally be "okay" with it, but I can and do accept it.

So my hope for today as I continue the journey, is that I can learn to let it go. That I can smile and find strength in my happy, squealy, flappy, tip toeing girl, (and my other two equally important and fabulous little people) and that I can get through the hard times with as much grace as I can muster. We have a lifetime of challenges ahead, and I have no idea how hard it will get, but for now we are doing just fine. We are coping, and laughing, and hugging and sometimes crying our way through the darkness, and beginning to be authentic and confident enough to move forward with acceptance and tolerance for all that we don't know. Life is what we make of it... and I want to love and accept ALL of my children. Period.

So in the words of Lady Ga Ga,

"Whether life's disabilities
left you outcast, bullied or teased
Rejoice and love yourself today
cause baby you were born this way"
Don't hide yourself in regret
just love yourself and you're set
I'm on the right track, baby
I was born this way.


Saturday, June 18, 2011

The World of Autism

Sometimes I feel like I've traveled to an alternate universe. I now reside in a world that is so distant and unfamiliar to most everyone I know. The world of Autism. It colors every perception, every single aspect of my life, every relationship and every experience is different. Not necessarily all bad.... just so very... different.

Unless you live it, or know me or someone like me well enough, and I mean REALLY well enough to grasp the heartache, the challenges, the blessings, the financial disaster, the strain on your friendships, family relations, marriage, etc... then I realize most of you have no idea what it's like to live in my world... our autism world. And nor do I understand what your world must be like.

Sometimes I walk around in judgement, and think about how most people really don't "get it." And by "it" I'm not even talking about Autism, I'm talking about "it." The "it" that is really all that matters... health, relationships, support, gratitude, authenticity, hope, love. Most people seem so wrapped up in crap that really doesn't matter at all... but then I have to step back, try hard to remember that everyone has a battle to fight, and STOP judging. After all, I don't want to be judged either.

Part of the purpose of this blog is to share our journey with disease and disability. To create an informative and heartfelt piece by which I can work through my own issues of grief, and to illuminate hope and light. In sharing the journey, I somehow feel a little less alone... like I am letting you in on what life is like here on planet Autism. And as much as I hoped that "autism" wouldn't define our family, I now fully accept and understand that it really kinda does... it is part of the fabric that weaves us together. It's not the only thing... but it's a biggie.

I think back to the beautiful essay about having a special needs child called "Welcome to Holland." If you haven't read it, google it, and do. It's a good analogy about what it's like. Our days are FULL, and I mean FULL of therapy to help Avery learn how to navigate outside of planet Autism, and how to bring her into our world in a small way. Every outing is a challenge, and things that so many take for granted become logistical nightmares for us. But all in all, when we are home, living in our own world where Autism is a part of the air we breathe, our "normal" exists, and we can relax and enjoy life in our own little world.

I had no IDEA how hard some things would be. But to be fair, I also had no IDEA how grateful I would learn to become about the littlest victories. The world of Autism can be lonely, and I am so sorry if I have grown apart from any of you reading this as a result of our journey. But we are navigating this uncharted (to us) territory as best we can, and trying very hard to keep from drowning in the difficulty. The best part is that we are choosing to be happy. To celebrate what we have and what we can do. Life is so much more grand if you can be content with the way things are. We can and do always hope... but we also are learning to live, love and laugh in this world of Autism. Come visit us from time to time.