Embracing Chaos

Already last Thursday seems a long time ago. I went to add something to the calendar and noticed I had written “Owen Typed” on one square. “Yes of course Owen types,” I thought. Then I remembered that before last Thursday I did not know he could.

Over the three day period, May 17th -19th Owen communicated ideas in words as  I never dreamed he would, assisted by the speech guru Marilyn Chadwick, by Edward, and by Freya. Since Marilyn left, and Freya left, and then Edward left on a business trip, there have not been wonderful sentences. That’s ok. I expected it. I would not have wanted to type assisted by my mother either.  (For one mother and son duo Marilyn says it took six months before he could type with her support.) But I know now that there will be sentences. Having once seen my son laugh and go with purpose to communicate, I know that he can.  More than once during the days that Marilyn was with us, he wanted to be facilitated. To make the unseen seen – to show us his wonderful mind. He also retreated again and again, caught up in what Marilyn guesses is “exposure anxiety.” Maybe it’s safer not to let the world know.  To do otherwise is so difficult. It will never be easy. Maybe it’s better to return to the drawer full of plastic, put your head down and to just keep chopping —  to hide inside the shell you’ve built. Like the turtle Kathie says Owen always watches when they go the Nature Center at Watkins Park.  Safer to stay the mysterious Beast of one of his favorite movies. A Beast whom Beauty never calls forth to become a naked and defenseless human man.

“Just peace” he typed in answer to one of Marilyn’s questions.

Too late Owen. We will call you forth. We will keep coming back to get you. We will reach out to convince you, we promise to help you feel safe. We want to know what you have to say. We want to know who you really are. Help us learn how to hear your voice in the subtle movements of your hands, letter by letter. One day I think you will type by yourself, for yourself. I think so.

Already there is something unfrozen between Owen and me. Total Communication, Marilyn said. You do not replace what you have with typing. CONNECTION is the most important thing. All forms of communication are good – body language, pointing, speaking, movements of the eyebrow or eyes, the jaw, smiles, a direct look. I know this, but as women will do I doubted my knowing. Marilyn has shown me my son.  I have been reading him for years, and she has validated what I knew but constantly discredited.

Suddenly things that felt so heavy, depressing, worrisome, do not matter at all to me. The thing is, who cares if Owen wears a diaper for the rest of his life? Knowing that he has an active mind has freed me from any embarasment. I know stories of those crippled in part by uncooperative bodies who have had great things to give to the world. You know those stories too. My Left Foot. The Theory of Everything.  It isn’t that I hope he will be revealed a genius scientist or artist. What Owen is here to do on this earth I cannot possibly guess. But his first gift to the world is his insightful and  compassionate heart. I had a dim sense of this before, but through his own words I know it.

On the Friday morning as the rain poured and poured, I struggled with my feelings of inadequacy, feeling crowded, feeling blocked, and watched Marilyn draw words from my son while I took notes. Edward already was way better than I at this Facilitated Typing, which didn’t surprise me, but it was hard all the same. Marilyn was encouraging me to stay neutral, to think of non-threatening topics. Edward is good at doing that. He has a lot of social sense about how to put people at ease.

“Dad is great” Owen typed with Marilyn after an interchange about favorite characters from Wind in the Willows.

But I wanted to know things. I had so many worries on so many topics. Like Camp. “I want to know about camp,” I said to Marilyn. “How does Owen feel about camp?” Marilyn had tried to tell me that my emotions around a subject (like my worry and guilt about sending Owen to camp) would make it harder for Owen to talk about it. A mom’s emotional presence complicates things for typers most of the time.

But she recomposed my question: “Owen, what do you like about camp?”

Letter by letter Owen created a response, redirected or re-positioned as he fidgeted, while Edward and I looked on.  Owen put the spaces between the words, and the punctuation. I wrote down the letters as Marilyn spoke them aloud:

“It reason for my swimming. Understanding I it her need.”

I looked down at the jumble of words in frustration.  “I don’t know what it means,” I said.  But Edward and Marilyn said, “Oh I do.” Then the fog cleared out of my brain.

I understanding her it need.  I like the swimming. I understand Mom needs me to go.

It is a deep gift to be understood. I do not know a greater one. My son Owen and I know each other deeply, if not by words. He has seen my at my best and my very worst, and many stops in between.  I do not need to be Owen’s best typing facilitator. It is enough to know that he will be able to pull off the chains of silence, to unmask his mind. We have always spoken, he and I. The language we use has been explained and validated, and now I recognize my own knowing. And the clog of fear and frustration that had weighed me down lately has been swept away.

I feel free, sure, and clear. Protected by his own ability to speak, I know that Owen will be ok now. And so will I.