On March 13, 2012 my almost three year old son, Greyson, was diagnosed with autism spectrum disorder. As soon as the words were said out loud, the oxygen was sucked from the florescent-lit room as my heart forgot to beat. After the appointment I went into my car and laid my head on my steering wheel and cried in agony, my heart shattering into too many pieces to ever put back together the same again.
Two weeks later as Autism Awareness Day, and I hated its guts. Was I supposed to be celebrating this thing that left me mourning a boy that never existed in the first place? I refused to celebrate. What in the hell will this awareness do for my son? Will it make him talk? Will it let him walk bare foot in the grass? Look me in the eyes? I couldn't eat. I couldn't sleep. My hands shook for days. I was afraid he would continue to drift further and further away from me. I was afraid for what his future would look like.
I would sing to him as I rocked him to sleep. "You are my sunshine. My only sunshine. You make me happy. Your name is Grey. You'll never know, how much I love you. Please don't take my sunshine away."
And high up above or down below
When you're too in love to let it go
But if you never try, you'll never know
Just what you're worth
Lights will guide you home
And ignite your bones
And I will try to fix you
I tried everything to fix my broken little boy. We found a Doctor who prescribed daily B-12 injections, probiotics, fish oil, digestive enzymes, hormone creams and a long list of herbs and enzymes, vitamins, and pills I couldn't even pronounce. I felt like a chemist and I hoped I was pouring the perfect concoction that would have the power to bring Greyson's sunshine back.
It took time, patience and a perspective I was forced to adopt. We stopped relentlessly pursuing one big fix, racing to some arbitrary finish line, and instead took our time and enjoyed the adventure. The whole of life isn't a sprint, it is a life-long cross country road trip.
And when I actually slowed down I realized the scenery was profoundly beautiful. I realized Greyson is exactly the boy he is supposed to be and I am exactly the mom I was meant to be. I realized how lucky I was to be living this sometimes painful story.
The truth became evident, he isn't broken- but the world is, and not always accepting of those who are different. Society is broken, because we think people with disabilities are to be pitied. They face discrimination and social exclusion. We share a feel good video of the popular kid inviting a kid like mine to the prom and the comments flood in..."What a saint!" "That's incredible!" Why does simply including my kid in life make someone a saint?
Two years after Greyson was diagnosed, it was determined that Parker, Greyson's younger brother also has autism.
Sometimes autism feels like a disorder. It's hard to see your children vulnerable. It's hard to see them struggle to communicate and make friends and navigate the world safely. Navigating schools, and trying to determine what they need is overwhelming. Evaluations and reports are marked with terms that paint a future full of dread.
Sometimes autism just feels like a difference. Differences enrich our lives and they are what makes our world unique. It feels like a rainbow, so beautiful it hurts my eyes if I stare too long. I let go of what I thought motherhood would look like and the reality is so much better. We are on a spiritual journey and I can’t believe how lucky I am to be given this story, and these perfect boys. I am in awe of them, their strength and their resilience. They are not projects needing to be fixed, they are unique people who deserve kindness, inclusion and understanding.
Lights did guide us home, but the only person that needed to be fixed was me. I’m still working on society, but I need your help.
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