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.

 

 

Today was a remarkable day. Today I learned that Owen reads words. Today Owen typed sentences to tell about his thoughts and feelings.

If you watched the process by which these words were brought to birth, you would very likely be skeptical. And I would understand your skepticism. I felt divided in half for much of the day, both weeping as I listened to my son’s mind emerging, and yet… skeptical. Incredulous.

At the beginning of learning typing to communicate, the support person must hold the typer’s hand, and no one looking at that process could tell who was doing what, esspecially with my son’s wriggling, twisting, grabbing for things and having to be redirected, again and again to focus, to come back to it, to finish telling us what he wanted to say.

Rome wasn’t built in a day. We are asking a person who has always been defined by his behaviors, by his outside, by his dis-ability, to be now reveal to us his abilities and to be defined by what is inside his head and his heart. It’s a big ask. It will take time.

But watch videos for yourself. I have seen now (at Marilyn’s presentation tonight) how the children, teens, adults who have been typing to speak for a long time do so with very little support. A hand at the shoulder, at the elbow.

Tomorrow Edward and I will have more lessons in talking with Owen. Learning the method. Baby steps. Don’t think too far into the future, just take “the very next step,” Marilyn says.

So – here we go.

 

 

 

Today Owen meets his new teacher, Marilyn.

Actually, Marilyn is coming to teach me and Edward. She will be here with us today and tomorrow, watching and developing an understanding of Owen, and of each of his parents. How does Owen already communicate? How do we communicate with him? How can she invite him to reach out into a wider world of speaking? And how can she teach us how to continue this work with him?  The beginning of speaking does not happen in a minute, for anyone.

The answers to these questions are what Marilyn must try to discover in these hours we have together, today and tomorrow.

The questions that haunt Owen’s mother and father are different. They wonder, Can this really be possible? What kind of understanding does their son really have? Could it be that his behaviors and his funny echoing speech hide an active, bored and frustrated 24 year old intelligence, as they have often thought? Can it really be possible that Owen’s mind can begin to  wake up, to be born today as the words of others who type to communicate describe? Is this possibly all a hoax? Owen’s mom keeps thinking of Helen Keller…and Annie Sullivan.

We will see.

If you live locally you also can meet Marilyn. Tonight, at 7pm, she will talk about Assisted Communication methods and show footage of people for whom this has worked.  Here is where to come to meet Marilyn Chadwick — you are all invited. Please be sure to share this invitation with anyone you know who has a nonverbal person in their lives.

An Evening with Marilyn Chadwick  –  7pm Thursday May 17th

The Washington New Church  –  11914 Progress Lane, Mitchellville, MD 20721

“Seeing people as intelligent is foundational to the method and to the assessment process. Treating people as intelligent is critical to setting the proper tone and approach to the invitation to communicate.”    

Marilyn Chadwick, Facilitated Communication Manuel

 

 

 

The month of April had some hard moments in it.

Owen is re-aranging the woods. He hoists a sturdy fallen branch, then another, then another, until his arms are full of grubby logs with ragged bark, some under his armpits, some clutched to his chest. Then, at a whim it seems, he jettisons them, one! two! three! to rot elsewhere, farther down the trail.  Our little caravan just gets walking smoothly again when Owen darts down off the path, jerking our poor bulldog abruptly backwards, to test a giant rotting log – – can he lift it?

“That’s too big Owen” I say. And he knows it, anyway, and settles for ripping off a handful of the satisfyingly crumbly, spongy interior instead. The dog strains forward, unwilling to abandon the walk he has waited for too long today. “No pull, Trum,” I say, to no particular purpose. The dog will keep pulling, and Owen will keep reaching for the logs that capture his attention.

Besides rotting logs, Owen seems especially drawn to wood partially obscured by leaves and forest floor, the most wet and muddy. He digs them out and clutches a couple to his chest, and I sigh inwardly. In a less patient moment, I hear myself kvetch. “No, Owen. Not the muddy one. I just washed that jacket. Why…?”

 

Whining “why” is to no purpose either. Who knows why?

I can’t imagine that Owen hears too much of my fussing. He has a job to do. He is on a mission. And since Owen on a mission is so much more fun than Owen in a state of fog, I can’t feel too unhappy about the mud on his shirt and coat.

Here he stops by another favorite : the splintering trunk of a tree, broken off in high winds. Owen grabs a huge splinter in the group that fans out jagged, and he twists and works it until the jag of wood rips free. Or it doesn’t. Never mind, he will be back to wrestle with it again. Eventually, it will give in. Those usually limp hands of his can be surprisingly strong. Insistent. 

We have reached the bottom of the valley, and crossed the funny patched up wooden bridge over the stream there, allowing the dog to get a drink — well, I allowed it, taking the leash to give the dog’s neck a rest. Trumbull the bulldog is very helpful on these walks, straining forward as dogs will do, keeping Owen moving, but it isn’t much fun for him.  Our old dog Rascal and Owen were more copacetic. They both meandered, putzing along, taking turns pulling each other. Rascal seemed to understand Owen – maybe it was because being a herding dog he understood the nature of his job.

Now the walking is more tiring as the path rises, until we can look down into the ravine covered in last year’s leaf fall. Owen moves slower. Or stops. His fatigue makes him go slower — but mine makes me want to push forward, up the hill, and get this walk over with. I want to be already home and cooking supper – even better sitting down and eating it. Owen’s body going slow, in front of me on the path, blocking forward movement suddenly, overwhelmingly, presents the picture of how the care of him is consuming my life right now, draining me, exhausting me, preventing me from doing what I want to do. My thoughts turn suicidal and murderous, and I step off the path to give myself a time-out on a smooth fallen trunk.  Tears and sobs shift the ugly state of mind. The sun peeks across into my eyes from behind striated western clouds, through the tiny green foliage of many beech trees. Owen presents me with a rotten log. To be helpful? To see if I will be mad at him for picking up more muddy rotten wood? Who knows.  I can only nod at him, waiting for the sadness to process through me, and leave me clear again.

And Owen strides through the woods, back and forth between the trees, checking trunks, investigating under logs, re-arranging the forest to his own mysterious specs.