Friday, December 17, 2010

echoes

Ed note: Yesterday, I posted the following story about my daughter, Brooke on my blog. Brooke is seven and a half years old and has PDD-NOS, a form of autism - along with a host of other conditions. Among them are pervasive humor, dogged tenacity, overwhelming grace and a wild imagination. 

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Brooke, summer 2010, stopping to 'pray' (with Isa the Iguana) in the middle of the local play space

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Brooke will often tell me that she is going to pray. She will say something to the effect of (I can't remember the exact line right now), ""You stay here. I'm going over there to pray now." I'm sure you won't be shocked to hear that it's a line from Godspell (my girl's all time favorite movie.)

She is acting out the scene from the movie in which Jesus tells the 'disciples' to stay behind as he heads out to pray alone - an obvious allusion to the Garden of Gethsemane, where Jesus says, "My Father, if it be possible, let this cup pass from Me; nevertheless, not as I will but as Thou wilt."

She looks so peaceful when she 'prays', though I've always assumed at those moments that she was simply acting out a favorite scene from a favorite movie, as she so loves to do.

Sometimes she will give prayer 'instructions'. As she sits down and assumes the position, she will tell me - or anyone within ear shot - that to pray, 'You put your head down like this and close your eyes like this'. Last night, she did just that.

She was lying across the top of the couch, her hands pressed together and her eyes closed.

She said, "When we pray, we either put our head up or down and close our eyes and dream it."

I'd never heard her say, 'dream it' before. I was fascinated by this new addition to the routine.

"You dream it, honey?" I asked.

She acknowledged my question with a quiet, "Yeah" and then added the following.

"And swirl around and feel it."

So much for simply acting out a favorite scene from a movie. I think my daughter just taught me to pray.

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I was absolutely blown away by what I thought was Brooke's poignant and insightful description of something so completely abstract. It struck me as wondrous on so many levels that I proudly shared the story with everyone; up to and including my favorite pastor, who said that she was going to use Brooke's words next time she led prayers. (Hi, Karla!)

Communication has never been easy for my girl. Her early speech was entirely echolalic, meaning that her words were an 'echo' or repeat of something that she'd heard before. Her every utterance could be traced back to either the very last thing she'd heard (those were the easy ones) or a book, movie or television show that she'd memorized and stored away in that incredible brain of hers.

We spent a lot of years in detective mode - constantly sifting through our catalogue of scripts in often desperate attempts to understand what it was that our girl was trying to communicate to us. We'd often call in the big gun - her older sister - to help us with the more obscure references. Thank God someone else in the house has an uncanny talent for attributing lines to the cartoon characters from whom they originated. 

Over time, Brooke began to use scripts far more functionally. I would marvel at her ability to wedge them into her life in such a way as to make them useful. (Try it sometime. It's far more challenging than you might think.) We were now able to spend far less time playing detective each day as Brooke's facility with words increased. With countless hours of ABA, speech therapy and social pragmatics came the slow but steady emergence of novel speech. And we celebrated heartily. The idea that my girl could use her OWN words to communicate was nothing short of miraculous.

Yesterday's post was such a celebration - a celebration of novelty. Of originality. Of independence. Until a reader left the following comment.

Not to be Debbie Downer, but that’s the Blue’s Clues Imagin-ation episode script.

“First I close my eyes and dream it. Then I swirl around and feel it. Then I open my eyes, and I can see it there!” sings Steve to Mr. Salt.

Still, I’d really would pay attention in church if those were actually the words that the priest said. Can’t you envision pews full of congregants swirling silently with their eyes shut? Prayer with power!

Love you DOAM and Brooke!

I stared at her words. I went momentarily numb. I blinked back tears. And then I forwarded it to two dear friends with just one line attached: Please tell me why this shouldn't make me cry. Please.

Blue's Clues. My girl was reciting Blue's Clues. What I thought was so profound was originally said to a Salt Shaker. I was on the edge of questioning every incidence of 'novel speech'. Were they really all just scripts that I hadn't recognized? Was the progress all an illusion? I was headed down the rabbit hole. 

One friend made me laugh. Thank God for the friend who makes me laugh. And the other said this:

"Because whether it's scripted or not is irrelevant. She could be quoting all KINDS of things she's heard, and THIS is what speaks to her!"

And then a comment came in from another reader, responding to the one above.

"Nice remembering! It DOES tell us something about Brooke’s feelings when she’s hooking these two scripts together. It’s still echolalia, but what a powerful message she’s pulling together to communicate!"

First of all, don't you just love that she starts out with 'Nice remembering'? Gotta love it. And she was right. Just as my friend was right. Brooke had a WORLD of scripts to choose from, just as we all have a world of words to choose from. Nonetheless, she chose THOSE words.

I don't make up words (well, for the most part). I use the ones I have in my lexicon. I string them together in ways that express whatever it is that i am looking to communicate. And isn't that just what my girl did? She used the tools that she had at her disposal to create a picture perfect description of prayer. And while the first line might have come from Victor Garber in a clown suit and the second might have been said to a condiment, I'm sticking to my guns. It WAS profound. It was insightful. And my girl really did teach me to pray. 

Though I might go back to the post and add just a couple of words to its last line. 

In her own way, I think my daughter just taught me how to pray. 

Yeah, that's better. 

 

Jess can be found at Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters - nine and-a-half year-old Katie*, an utterly fabulous, typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit 'Like' and probably now wonder what they got themselves into. 

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