Thursday, March 27, 2014

disappointment into beauty

In March of 2012, my son Greyson was diagnosed with autism. A couple of weeks later on April 2, it was World Autism Awareness Day. The annual date was adopted by the United Nations in 2007 to shine a light on autism as a growing global health crisis. Autism Speaks celebrates this day with a campaign called, Light It Up Blue, -a global initiative that kicks off Autism Awareness Month.

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Numerous homes, landmarks, hotels, sporting venues, museums, bridges and stores temporarily install blue lights. Autism- It was EVERYWHERE I looked, assaulting my heart, reminding me over and over again that I was now part of this club I never wanted to be part of. I was so raw and it was all too soon to process. I didn't understand what it was- World Autism Day! Light it up blue! Was it a celebration? My new reality left me shaking and sick and absolutely unable to celebrate any source of my pain.

And last year as I teetered on the cusp of reality about Parker having autism, I was at no better place. Now, one year later I'm realizing I really don't know much about anything. Facts and feelings change in an instant. I take life day by day, and sometimes moment by moment when anything more is too much. We've had some hard moments, and some incredible ones as well. I can say without hesitation the good ones have so incredibly far outweighed the bad.

I probably won't light anything blue this year. I'll see how I feel next year. The good thing about feelings is that they always change.  Autism awareness is daily for us. It sometimes happens during a trip to the grocery store or a visit to the park. It is always kind, and in turn, we have always been met with acceptance, patience and kindness too. This blog has been such a beautiful exchange of heart and friendship, and I love that we can talk about a lot of things. Every moment I have with you to talk about autism is not taken for granted. I am grateful for those of you who are not affected by autism in your daily life but are still here connecting with a deep sense of empathy. I am grateful for you Super Power Parents. You are fierce and scared and strong and hopeful with me. You remind me in my darkest hours that I am not alone. Together we are never alone.

At the end of the day, I think we all take care of each other. I think when it comes to the big picture, autism is about every one of us. If it hasn't affected you, it might in your future. Today the CDC (the Center for Disease Control and Prevention) released new data showing that the overall prevalence rate of autism is officially now 1 in 68. That's a 30% increase from two years ago (1 in 88). Better diagnosis is not the answer. I remember when autism first entered our lives, I felt like we victims randomly hit by a stray bullet. It's scary data, and we still have no concrete answers as to why.

You've shown me that autism can be substituted with so many other situations in life. Situations that make us grow and stretch and change and pray and cry and laugh. Situations that bring beauty to you in its rawest of forms. Situations that will make your cup runneth over and make you hit rock bottom- often in the very same day. No matter your joy or struggle, you are not alone. I hope you can feel that now.

It's easy to get caught up on the messy and complicated parts... on the future parts... on the why????? parts...on the murky and difficult and unexpected and uncontrollable parts... But it helps to remember that right now the life ride is still spinning before us, and if we aren't careful it will pass us by.

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I think it's important to try and turn disappointment into beauty when we can. I was disappointed after writing the post wishing my boys and all children with special needs could take part in a national advertising campaign. You know- because Gap didn't call me instantly to book my handsome lads. And then I realized I don't need a big company to show me that children with special needs are beautiful. Even little old me has the ability to share the beauty of ALL children - so I am turning my disappointment into something beautiful.

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Tomorrow at 3pm, I will be on Central Valley Today (K-SEE 24 NBC)  to discuss the Beautiful Super Powers photo shoot on Sunday. I'm nervous. I'm excited- not just about tomorrow- about the future. I'll post a link after for all my friends from out of town unless I say really stupid things. And I can't WAIT until the photo shoot on Sunday. It's going to be a day full of magic.

And for those of you not on Facebook, I wanted to make sure you saw this. 

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We were at the mall last night and this was hanging larger than life in the window at Gap. I had seen it hanging before but didn't make the connection until last night when it hit me. That is Rj Mitte, from the show Breaking Bad and the ABC family show Switched at Birth. He has Super Powers in the form of Cerebral Palsy. I just stood there, in awe with the biggest smile on my face and a huge feeling of hope in my heart. 

Much Love,


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  1. This is amazing! I am a huge Breaking Bad fan. Thank you for sharing that!
    I can totally relate about "lighting up blue." We were just diagnosed in January- although I bought the bulb, I don't know if I'm ready to put it in. It still hurts too much at times. You are not alone.
    Best of luck this weekend. Can't wait to see it!

  2. Hi Friend <3 thank you for being grateful to those of us not affected daily by autism. Through no fault of yours, as I am watching your following grow, I'm wondering if I'm an interloper. Again, not that you have ever made me feel that way, but what if this crazy stalker Momma from Indiana with her non-autistic stories just didn't "get it".
    I hope you know I realize our challenges are different. But I have always felt drawn to your never ending love & devotion for your boys. I feel like we have that in common.
    I love this place. You make me laugh out loud a LOT. And you've made the love spill out my eyes a time or two. And the photos of your loves - well, they are nothing short of magnificent.
    I'm happy to be here & am in awe of your world changing.
    Happy weekend, sweet Momma. xoxo Jen

  3. thank you so much Chrissy... our family has been touched not by autism, but by schizophrenia, depression and suicide. the searching for tolerance and understanding, the hope to change the world-- I feel it too. I find so much peace and mutual understanding in your words. I have recently discovered compassion and loving kindness as a way through pain. the suffering intermingling with joy, overwhelming love and then finding comfort in the greater perspective-- I too experience and feel what you articulate so beautifully in your blog.
    thank you for sharing your path, it's such a privilege and honor to be part of it.

  4. Sorry that Gap responded that way. Maybe you can try Toys R Us. They have a catalog each year with differently-abled kids modeling.

  5. Every time I read your posts I find myself nodding, laughing and crying. Thank you talking about how you responded to Autism events. Haydin was just diagnosed January 30th, he will be 3 the end of May. After the diagnosis people wanted me to talk to their friend or family member with a child with Autism or knew someone with Autism. It was sweet and I appreciated the gesture but it was way too much for me. I was just trying to process this for Haydin and for my family, I wasn't ready for the world. Same with Autism events and support groups. It was all so overwhelming. I want/need time to process, to heal to learn and to love on Haydin. What I do want though is awareness and education and so I am finding myself doing what feels right and participating a bit more. You inspire me Kelly to put myself out there, to go out of my comfort zone for the greater good. But always stay true to myself and Haydin. BTW I saw your link to your newscast. Awesome!! Very nice job and fabulous shoes!! :)

  6. Your insightful and healing posts have helped me find strength during difficult times. Thank you!!!
    I love the idea above about networking with Toys R Us... would love to see your gorgeous boys in an ad!
    Hope the shoot today went well, can't wait to hear about it/ see the results.