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April 27, 2011 / paperkids

Purpose

April is Autism Awareness Month and all month long, social media sites have been buzzing with articles and posts.  Surely the whole world must know of or personally know someone living with autism.   I’ve been thinking all month about what I could write in support of it.   Since  both my children were diagnosed with autism, it’s kind of a huge part of our lives.  I think so much about the future I want for them.

I racked my brain and wrote so many posts that just didn’t feel right.  What kind of message do I want to share with the world about autism anyway?

Recently, I sat down in my seat at the AMC theatre with my popcorn and coke and more napkins than usual.  I knew I would need them since I’d already begun to tear up just being there.  I was finally going to get to watch Wretches and Jabberers and see Larry and Tracy embark on their trip across the world, meeting up with others like themselves, who have severe autism and speak with keyboards just like Emma.  For a few of the fellow travelers that they meet up with, this was the very first time they had ever met anyone who communicated like themselves.  They took their message to conferences, visited temples, ate sushi and spoke with one another across a table in a cafe in Finland using a plethora of keyboards that frankly got me giddy inside.  I kinda geeked out on the variety of keyboards in the film.

They bore their hearts and souls to the core, sharing  desires, joys, and struggles that most of us could not comprehend.  They teased each other and joked around quite often.  In one of my favorite moments of the film, Tracy shared his deep longing to discover the  purpose of his life and it was so compelling on so many levels.    For these brave men, the trip went further than just the miles and ended up being much more emotional and spiritual.  My eyes stayed pooled with tears of laughter, pain, and a connection that I felt to these strangers that is hard to put into words.  It was like watching my life with Emma up on screen.  It was the most beautiful and exhilarating experience as my heart sopped up every second.  I have to admit I was sad when it ended.

When I was walking out, I saw a woman I had seen when I first arrived.

“God, wasn’t that amazing!?” I asked as we walked to our cars.

“Yes, it was.  It really made me mad, though!  I just can’t believe that boy in Japan wasn’t even allowed to attend school.  So sad!  I work for a school district and I see it all the time ..it just breaks my heart.”  She shook her head and I could tell she’d been crying too.

“Yeah, but this is so exciting!  Things are going to change for these kids!  I am so thrilled about all of it!”  Okay, I was probably coming off a tad over-zealous and jacked up on caffeine.

She smiled at me.  “I hope so.”

I understood where her anger came from.  I’ve felt it before and will feel it again.  The world doesn’t always give those with autism what they need.  We definitely need more support, better education and more funding for therapies.  There needs to be greater emphasis on helping those with autism to communicate and find their voices.  We need the world to understand that just because a person doesn’t communicate like everyone else, doesn’t mean that person isn’t intelligent.  Just because a person doesn’t speak with his mouth, doesn’t mean he has nothing to say.  Everyone wants communication!  When I think of my children and their future and hear the voices of those with autism, including my own daughter, I know that what those with autism maybe want the most  is to be a part of society and contribute to this world, just like everyone else.

I don’t think I could ever sum it up better, than something Emma shared with me.  I asked her what awareness meant to her and if she wanted to share her thoughts about it.

Emma:  please write yearn to understand that everyone with this reality is exactly who they are supposed to be

Now, this may seem like a radical statement to some.  It seems to go against the whole “find a cure” slogan for sure.   We talk a lot about destiny and personal success in our culture, but who determines value?  There are loads of books out there that will give you a plan for how to be the best YOU that you can be, but what they really say is that who you are, isn’t really good enough.  I feel these feelings of not being good enough all the time and I don’t have to deal with anything like the struggles that Emma does to communicate or control her body.  Yet she finds value in herself time and time again.  She  makes me want to love myself more.  I look at her and I think, aren’t we all special and unique – unlike anyone else on the planet?!  Aren’t we completely original and one of a kind – fearfully and wonderfully made and loved by God!?  And don’t we all have journeys to make and pieces of who we are to share with the world?

NO ONE can take that away!  Keep strong Wretches!  You have so much to tell the world EXACTLY  as you are.

FYI. If you want to catch the film, 100 cities are screening it on May 12th!!  It’s a MUST SEE!

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6 Comments

Leave a Comment
  1. MSOTS / Apr 28 2011 12:37 am

    I love this journey we are on; how much Emma has to offer us in her simple but profound voice, and how explicit your voice is in sharing your reflections.

  2. grandma / Apr 28 2011 2:42 am

    How sweet the sound…
    love
    grandma

  3. Emma Apple / Apr 28 2011 4:46 am

    I couldn’t agree more. That’s the beauty if this imperfect world, it’s perfection, waiting to be seen.

  4. Candy / Apr 30 2011 2:41 am

    Beautiful words from Emma. She has accepted autism in her life by staying positive, even during her rough days. She continues to teach us about autism and how God, her best friend, has always been there for her.

  5. Lydia / May 9 2011 2:31 am

    Re: the “everyone with this reality is exactly how they are supposed to be”… AMEN.

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