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Monday, April 15, 2013

What Acceptance Means to One Autistic Girl

I have an autistic Facebook friend who is doing a giveaway for the month of April on her Facebook page.  She called my attention to it.  I actually didn't even know that particular page existed.  I follow her blog, but this was unrelated.  She was giving away patterns she designs.  To enter the giveaway you had to write what "Acceptance" meant to you.

She messaged me about it, and I told her I wasn't sure I was comfortable injecting my two cents into a conversation among autistics about what "Acceptance" means.  In essence, my discomfort comes from not wanting to "butt into" the conversation.  Parents' voices often ring a bit too loudly and too self importantly in those sorts of conversations.  Who am I to say what acceptance means?  I'm accepted.  I don't have a valid frame of reference.  So I explained my reluctance.  She countered, "Why not ask Lily what it means to her instead?"

Why not?  Well, Lily's seven.  It's difficult to know what she knows and doesn't know.  When Emma was seven I don't think she could have told me what "acceptance" meant to her.  Why not though?  I preach, "presume competence"...why not practice it a little?

That night I was giving Lily a bath.  Lily was impatient to get in the tub, but it wasn't full yet.  I was sitting in front of her on the lip of the tub helping her get her clothes off.  

"Lily," I started, holding the cuffs of her pants as she stepped out of them, "what does acceptance mean to you?"

"Um," she replied unhelpfully.

"What does acceptance mean to you, Lily?" I tried again.

"Um," she repeated.

I asked her a couple more times, pulling her shirt over her head, stretching her socks out by their toes until they released from her feet to spring into my hand.  I tossed the clothing into the hallway, and held her hand while she stepped gingerly into the steaming tub.

I let the water run a bit more and she hunkered down to get closer to the warm suds, staring at her reflection in the polished chrome fixtures.

"What does acceptance mean to you, Lily?"

I used cupfuls of the warm water to wet her hair, damming her forehead unsuccessfully against the splashing water with my free hand to keep it from running into her eyes.

"Independence," she sputtered.

I froze, the cup in mid dip.

"Independence?" I asked, not quite sure I'd heard her right.

"Independence," she repeated.

I cocked my head quizzically.  This was my answer.  At face value I could certainly tell my friend that my daughter had said that acceptance meant independence to her.  It was a wise answer, maybe a better one than the others I'd seen.  I could extrapolate from it.  It meant not needing help with things.  It meant being able to do things for herself without others interfering or getting in the way, or forcing her to do therapy to tailor her way to their way.  It was a good answer, even if I was still hesitant to accept it at face value (how's that for irony?).

Did Lily understand acceptance?  Christ, I'm not sure even I completely get it most of the time.  I was very intrigued.

"Lily, what does independence mean?"

As I lathered her hair with shampoo, she began scripting a song she listens to on one of her favorite DVD's.  It's Emma's dance recital DVD from a year ago.  She calls it "Purple Recital" because the DVD cover has purple lettering and a purple graphic.  She loves listening to the music and watching the girls dance.  One of the songs the girls (it is not Emma's group) dance to is the song she began to script,
"I've got no strings so I have fun,
I'm not tied up to anyone."
It's "I've Got No Strings" from Pinocchio.  That was her response to me when I asked her what independence meant.  There is no rote memorization that goes with that association.  There is no..."oh she only associates it with independence because Pinocchio talks about it in the movie before they sing that song"...because she doesn't know the song from Pinocchio, having never watched it; she only knows it from this dance recital video.   

I am reminded poignantly of the amount of "hand-over-hand" this kid gets during the course of any given day, and of how frustrating it must be to have to move your hands when someone else is pulling your strings.

There's no cynic's knife I can use to pare away the concept that Lily knows what independence means...maybe even what acceptance means.

SO interesting.  Presume competence.  

I'm usually pretty careful with how I phrase my titles...but this post isn't one parent's interpretation of what his autistic daughter thinks...this is straight from the girl herself.



35 comments:

  1. Dang. I am floored by this story. And verklempt. That's awesome.

    And it makes sense... acceptance meaning independence. I never had a diagnosis to follow me around when I was a kid, and while this was a double-edged sword because I often suffered because of it and without support, it did also afford me the ability to seek out my own path and my own ways of dealing with the world. The acceptance of me was accidental, since nobody knew there was anything "different" to accept, but I can totally see where she's coming from.

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  2. (I have nothing intelligent to say, but I was here and am amazed by the story.)

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  3. Presume competence? More like presume brilliance!

    Way to go, Lily! And nice job, Dad.

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  4. I, too, have nothing of note to say except... That's really awesome.

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  5. Wow. Lily. Just wow.

    And "wow" to dad too. I know you've gotten a lot of flack, Jim -- but the fact that Lily was able to give such a response speaks volumes for her parents... her family. You guys love Lily with every fiber of your beings and it's shining right through that brilliant little girl!

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    1. What?? I got flack??? When did this happen?

      Thank you!

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  6. I love your girl. Rock on, Lily!

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  7. Sound like a kid who is really in-tuned to what SHE wants! Awesome conversation. Bath time is a great medium for amazing adventures! PEACE

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  8. She is raising you right, Jim. She will make sure you really get this acceptance stuff.

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  9. kermommy is right. She IS raising you right. What an amazing girl.

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  10. What an epic answer! Thanks for sharing, Jim. :)

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  11. Holy wow. Speechless.

    I can't wait to ask my kids what acceptance means to them.

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    1. DO EEEEET.
      Also enter my giveaway? (Yeah, Because Patterns is mine.)

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  12. So amazing. Now I'm tempted to ask my kids(all of them) what they think it means.

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  13. That so damn beautiful, mister! Why you gotta be making me cry and junk?

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  14. N-Zilla said "THOMAS"! JK. Haven't asked him.

    I gotta agree with @Sanstrousers. Beautiful. And quit making me cry-and junk?

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    1. You should ask him...even if his answer IS Thomas.

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