"I need a new word"

To know that your child can not say the things that she wants to say is nearly indescribably painful. To watch your child develop more or less silently, watching and listening instead of jumping into conversation and interactions, (as you search frantically for solutions that-aren't-coming-fast-enough-I-mean-come-on-she-can't-say-anything-at-all) is a type of heartbreak that is sharp and and slow and steady . . .  not like having your heart smashed with a mallet, but more like having it dissected by a toothpick, one tiny scrape at a time. One tiny, tiny scrape at a time.

If I could give my voice to Maya, I would, in an instant. I'm sure any parent of a child with complex communication needs would do the same. Instead, we figure out systems and signs and devices. Maya's got her talker, along with a variety of nonverbal ways to get her point across and a spoken vocabulary of words and approximations that has undergone an impressive proliferation since the fall.

When we're home together, Maya uses her voice and the talker and gestures in a multimodal, nearly constant, communicative way, and we chat back (and model on the talker) . . . and while our communication isn't "typical" it is comfortable. It can almost feel like, when she draws on all of her various communication resources, she's not limited---like she has a wide enough menu of communication options that when she thinks of something she surely has at least one method that she could use to get her point across.

I would like to believe this is true. 

I tell myself that this is true.

This is not true.

She is limited, still. She thinks things that she can't communicate. We play guessing games and I think that we often are able to figure out what she is trying to say, but not always. 

A month ago I wrote on Facebook about an exchange in which Maya was trying to tell Dave & I something and we had no way of figuring out what she was trying to tell us. She couldn't show us, couldn't sign it, couldn't say it clearly enough that we understood, and then she pulled her talker close and turned it on she hit the button that said "I need a new word" . . . and yet we were powerless to add the word she wanted, since we had no clue what it was. 

(scrape . . . scrape . . . scrape)

This afternoon it happened again. Maya had just finished having a snack, and she turned to me and carefully said "Too wah." 

Me: "Too wah? What's 'too wah'?"

Maya: "Too wah. Too wah. TOO WAH."

Me: I don't understand. Can you tell me with your talker?

Maya: (pulls the talker over, turns it on, opens the keyboard and types "S")

Me: S? 

Maya: "Too wah." (typed "S" again)

Me: Does it start with an "S"? 

Maya: "Yeah."

At this point, I grab the video camera. Dave wasn't home and I was hoping that if I played this back for him later he might have an idea about "Too wah" that I was missing. 

This is what I recorded. This is what it is like.

She quit. She put her head down and she quit, because she could not will me to understand Too Wah. Children with complex communication needs (more commonly-but inaccurately-referred to as nonverbal children) often become passive communicators---they quit. Or, alternately, they rage and breakdown and tantrum. It's the third option---stick to it, don't get upset, stay determined---that is both difficult and essential to foster. I don't really know how to encourage it. I don't know what I would do in Maya's shoes. I think I would want to quit, too.

She gave up.

And then she changed her mind.

The first time we couldn't figure out her mystery word, she gave up. This time she gave up, but only for a few seconds and then she came back. And this time she tried to spell, too! The fact that she thought enough to figure out the first letter of Super Why, and gave it to me as a hint---well, that's pretty big. (That's also indicative of why I'm so obsessed with finding an academic placement for her that will have high expectations, like literacy now-not later.)

We added the button, to the cell that she pointed to initially. (When I opened the screen to add the button she pointed to that cell again, clearly telling me where she wanted the word to be.)

And then we watched Super Why, which everyone loved. Even Will. (The music in this one is pretty loud, so be careful of your volume before you play it)