Over a year and in and out of weeks

Last night I spoke to local and state legislators about my son and how far he has come in a year. It prompted me to look back at where I was a year ago - struggling to communicate with him....

September 2004 - It’s like being under water, isn't it? Everything sounds muted and dull. Sounds thud in without any “brightness.” Music is fine, still interesting with enough variations of frequencies to be groovy and fun. But some sounds: “em,” “ess,” “eff,” “oo,” don’t make it in at all. They disappear right in front of your eyes - like the thin fingers of rain on the desert that evaporate before ever touching the ground. You grasp at the words for a while, thinking if you just reach out far enough, strain to hear, they might make it in and be understood. But after a few minutes, you discover it’s the same as always, hopeless, frustrating, and futile. You give up and zone out. Then, just as you have retreated into the sounds within your head, your thoughts, or the beating of your heart, an outside buzz, hum, or beat intrudes, confusing your silence. Then, you cup your chubby little curled up hands over your ears and look around trying to get some recognition and some relief from the sound you so earnestly sought out not moments before.

I don't know. This is my best guess of what the world sounds like to my son.

Kuruna only says Da-da and ghnh-ghnh (for "nu-nu" or pacifier). He began saying those words at ten-months. Eight months later, those are the only words he can say. He has gotten by until now solely on his irresistible grin, his three dimples and the twinkle in his eye. Kuruna can’t tell me what it sounds like in his world. I can’t ask Kuruna what he hears. He has no language. We have taught him some sign language, but he is slow to pick it up and limited mostly to signs for “food” “more,” “drink,” “all-done,” and two social signs “so big” and “big love.” These signs--and lots of hugs and kisses--get us through a typical day. But Kuruna’s inability to express more than the bare minimum of his needs increasingly frustrates him and us.

Kuruna and I, we are straining to listen to each other and to be heard.

He screams at me. I yell at him.
He grasps at my words. I grasp at his signs.
I ask him, “who am I?“
He says, “Da-da.“
He screams.
I ask, “More food?“

We can cover the important stuff, like “big love.” But the nuances of communication are lost in this huge gulf between us.

There’s a sign Kuruna uses that I did not teach him. I wish he could tell me what it means. Sometimes, Kuruna puts his chubby fists over his ears and looks around plaintively. I think he means that in spite of what he doesn’t hear, whatever is getting in is “too noisy,” but I am not sure. Maybe he is inviting me in to his world. “Just put your hands over your ears, Mommy,” he may be saying, “It sounds just like this.”