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Sunday, March 30, 2014

Out of the Mouths of Sassy Children...

As Miriam has the opportunity to try out new technologies, a clear but elemental truth is beginning to manifest.

I drive something like this:

She uses things like this:

So not fair.

Miriam has been using her communication device regularly for over a month now. To understand the significance of this, imagine your baby suddenly turned its head 360-degrees and said:

"Dang it mother, just change my butt already."

The device itself looks like an iPad, and acts as if designed by Microsoft: sleek and incredibly buggy. As a voice scrolls through various choices, Miriam uses her head to hit a switch and select the one she wants. It then speaks aloud in a younger girly voice.

I need.

She hits the switch and it goes to a submenu. It scrolls through a few choices until it reaches the one she wants.


More scrolling. Click.

Something hurts.


My body.

We ask a simple question, such as "So does your body hurt?" and wait for a response. If the phrase was intentional, she will smile as confirmation, and then we obey as best we can regardless if she meant to hit it or not. In this way she is learning a new language through our responses: using vocabulary and syntax to communicate. It takes time.

She hits a lot of phrases that make no sense. She finds patterns. She gets tired and the voice keeps droning on. Yet two things have emerged in these early stages:

First, it is interesting to see her use phrases that communicate, even if they are not exact. For example, by the expression on her face and the stiff tone of her body, she was clearly in distress. If she's in her wheelchair for too long, she can get sore and stiff - and then comes the high-pitched squeals until we put her back in her bed.

"What's wrong?" I asked. "You have to tell me."

Pause. Device scrolls.

I'm mad.

"Why are you mad?"

I'm sad.

I'm scared.

I need onlee zpeak wan languaage, mon cherie.
L'lanwage d'love.
It was clear that, whatever she actually felt, it was negative, and that meant she needed help.

Ages ago I learned to speak French, serving as a missionary for the Church of Jesus Christ of Latter-day Saints. Arriving in Lausanne, Switzerland, I spoke more like Frankenstein's Monster in those early months, desperately trying to become understood. It didn't help that the typical French-speaking citizen looked at me with an expression akin to stepping into dog poop.

Still, I tried: Me! Hungry! Bread!

She's learning to speak, and we're learning to listen.

The second surprise in these early stages is that she has immediately picked up a few phrases, mostly connected to an immediate need.

Something hurts. 

I want my bed. 

Sanitation Alert - Hazmat Level 5.

(The last was added by me. It's a lot cooler than Dang it mother, just change my butt already.)

Every so often, however, she has shown the ability to go beyond communicating basic needs. Once, when Mom told her she would help in a few minutes, Miriam's response was a little sassy.

You've got to be kidding me.

When brother came by, she decided to add:

I am a princess, kneel before me.

Coincidence? Maybe, maybe not.

These are the moments that make life worth living.
A couple of weeks ago, I was playing a video game. She watched next to me as the device dutifully scrolled through choices. I was onboard an alien spaceship, taking down alien monsters with a laser pistol.

That's weird.

"I know, right?" I replied, as if she's always spoken to me. "It is pretty strange."

Can I have a turn?

That made me laugh. "I wish, Missy Magoo. I wish you could." I stopped the game, turned off the TV, and started to leave. "I have to go pick up your brother. Mom will come get you in just a second." I leave. From the front room echoed a little girl's electronic voice:

Turn on the TV.

Great. I have a little girl already addicted to the boob tube.



The other night, we had this exchange:

I need. Help. Something hurts. My body.

"Yes, my dear. Can you please wait just a moment?"

I feel. Sad.

"I know sweetheart, but you're going to have to wait."


"Hey," I reply. "Don't get sassy with me, missy."

Who would have thought I would feel so happy with a child who talks back to me?

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