Monday, November 16, 2015

turning imperfection into golden beauty

Some parts of parenting a child with autism are exactly the same as parenting typically developing children.

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I love them like my life depends on it. I make sure they are fed and bathed and learning and loved and challenged. I try to focus on and build their strengths. I try to remember how I want to raise them in a world full of distractions, hoping that I am teaching them good enough so that one day they can make important decisions on their own.

Some things about parenting children with autism are really different. 

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Like attending hours on top of hours of Speech and Behavior Therapy, sometimes using pictures to communicate, making hard decisions on adjunct therapy and special schools and trying to appropriately navigate parenting two small children whose developmental age is well below their actual age. 


Often I forget that my sons have autism, or that they may look or seem different than other kids. And it always catches me off guard when I am reminded, to the point where I sometimes don't know how to respond in the moment. I see a teachable moment drift through my fingers like sand as my emotions take over. I feel inept as a parent to speak important words on behalf of my precious boys, and then I feel guilt knowing my imperfect response is deeply inadequate .

Like when a sweet little boy asks my six year old son Greyson his name. We have to prompt Greyson to respond to people. 

"Tell him your name". Greyson looks off in the distance, unresponsive. 
"What's your name?" We ask again- using the same specific verbiage he learned as part of a Behavior Therapy program called 'Social Questions'. 

"Gaysin" Greyson responds, because that G-R sound blend is a killer, and one of the many things he works on at Speech.

"Why does he talk so weird?" this little boy asks. 

My heart sinks into my stomach. I have so many thoughts they form a tsunami and nothing but a few rain drops end up coming out.

I love questions, because it means people care and want to know more. I've realized that most people mean well, and I haven't become jaded with too many off the wall, did you seriously just ask me that?!- questions about autism. And there is nothing better than questions from little kids- because they are such a blank canvas for understanding different. They are our future advocates, our world changers.  But as much as I want to say, "Well, God made us all different and that's OK-and blah blah blah", at this moment, I can't hear anything but weird, echoing in my chest. 

I think of all the time Greyson has poured into Speech Therapy since 23 months of age. If I counted up all the hours I'm pretty sure he has a phD equivalent in something. I feel sad that despite all of his work, his language stands out considerably and still barely gets his needs met. Sad that these situations are our new normal and I'm not always prepared to handle them. Sad that I'm taking such defense to the word, 'weird'. Because he does talk weird, which is just another word for odd or unusual. He has apraxia which means his brain and his mouth have trouble working together. French fries comes out as dit mies. Hot dogs are ha-gaws. There are many sounds he can't make, syllables he deletes and sounds he replaces with other sounds. Oftentimes he thinks he is saying something correctly, which makes it even harder and more frustrating for him. And instead of explaining away the weird or pretending it doesn't exist, I have to make peace with our truth in order to move forward to the actual message that I would prefer to share. 

My son is different. Different is not always bad or weird. It's not always special and heroic either. Sometimes different is just different. 

There was nothing wrong with this innocent, beautiful, curious child's question. I take full responsibility for the onset of my emotions triggered by a word as simple as weird. You see, sometimes my head and my heart don't work well together either. 

As evidenced by much of society, we don't like different. We are happiest with two categories- my opinion and wrong. Don't believe me? Read any article on same sex marriage, special needs, politics, religion and a myriad of other topics. Then for a real kick- read the comments. And it's these messages, and so many others, both direct and subtle that have taught us, and now teaches our children that different is a synonym for weird, or even worse- wrong or bad. 

So those of us that care, those of us who will not stand for this, we need to preach the beauty of different. Because the world is a better place when different is celebrated instead of feared, ridiculed or silenced.

The Japanese have a term derived from Buddhist teaching called wabi-sabi. It is the beauty and appreciation of things imperfect, impermanent and incomplete. The first time I read that definition I finally felt like I had an explanation for my whole life. I had permission to find our brokenness beautiful, and in fact- sometimes even preferred.

A related Japanese philosphy of embracing imperfection is called kintsugi. This is the centuries-old art of fixing broken pottery with precious metals like gold, silver, or platinum. 

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This repair method celebrates the pieces unique history by emphasizing the breaks instead of hiding them. Kintsugi often makes the repaired piece even more beautiful than the original.

And so I wrap this philosophy around our story because it's truth. Wabi sabi is my dog's under bite. A first draft of these words that are so important to me to convey to you. Our scuffed wood floors, and the tiny chip in Parker's front tooth. It's the wrinkles around my eyes, and the constant finger prints on our sliding glass doors . Wabi-sabi is absolutely Greyson's speech. Perfect in it's utter imperfection. A tale of hard work and pain, of triumph and a tiny human's huge spirit. 

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And just as parenting children with autism is different, so are the lessons I learn by it's very presence in our life, creating beautiful gold cracks in our life. There is a certain freedom in accepting their imperfections, and in turn possibly turning my very own imperfections into something beautiful too. 

Maybe we are all just wabi-sabi. 

13 comments:

  1. Wonderful, wonderful message!!

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  2. Chrissy, My 3 yo son has Spastic Quad CP. This was so beautiful. It really resonated with me. I too love questions about my sweet boy, as they indicate interest in who my sweet boy is, but at times they tear me apart. Blessings to you and your sweet family!

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  3. I feel exactly the same way when asked these questions by little ones about my boy. I get their curiosity, but my goodness the word weird makes my stomach drop. You explained it perfectly. Big hugs.

    -Colleen

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  4. Your words convey such raw and honest beauty and continue to expand my mind and provide me with new perspective. I'm so glad your blog is a part of my world. Thank you, Chrissy.

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  5. I just want to say that this spoke straight to my heart. It spoke directly to my family situation and I just simply wanted to thank you for always being able to beautifully put into words what many on their own journeys may be feeling, but just can't make sense of and find the their own words of expression.

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  6. Chrissy, the image of broken pottery and associated teachings are beautiful. Can you share how you came upon them? A book or a class? Trip to a museum?

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  7. I tried to paint a simple hello sign for my house. It turned out awful! Paint smeared, crooked. Someone called it wabi sabi- so I googled what that meant. Of course I was in love with the term. That's how I read about kintsugi too.

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  8. As my autistic son is ripping papers up and I try to write this....this is truth. Thank you for writing truth. Stay encouraged yourself and keep writing. Though many disagree with us there are many impacted by your words. Thank you!

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  9. Have been reading your blog for awhile. I am a grandmother and we have been thinking for awhile that our grandson who is 3 and one half may be autistic. He was seen at Vanderbilt in the past but no definitive diagnosis. Will be going back in December. Still thinking autism. How do you let your dreams go?

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    1. I know, friend. It's hard. But that's just it- they were MY dreams. Not Greyson's dreams. Not Parker's dreams. So many of our dreams are really just what is expected of us. Whether it be playing sports or getting good grades or going to college or getting married. And we want those dreams because they are what we are supposed to want. Our boys dreams will not be our expectations. They will be totally different. And there is something so hard to accept about that, I know. But also, strangely- so freeing too.

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    2. Thank you so much. You are so right. You walking your path is not in vain. You are using your experience to help others who are going the same route. Thank you.

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  10. Thank you for this post. I also loved the Kintsugi metaphor. My father lost his battle with ALS this year and I found some Kintsugi pottery to give my mom for Christmas. Wishing you and your family all the best in the new year!

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