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.
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