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.