Brutal and Beautiful

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Montpelier Art Center, Laurel, MD, photo credit Kathie Constable.

Life can be hard. So hard. My body is tired, my brain is tired.

But this time I have only myself to blame, because I sat up numbly looking stuff up on my cell phone last night, when I needed to be sleeping.  “Life” says Glennon Doyle Melton, a blogger and life coach, “is brutiful.  It is brutal and beautiful.” (A TributeBeautiful since I was researching wedding dresses, because I am going to be a mother-of-a-bride!  But the brutal truth is that I don’t need that dress for many months, and I need sleep (and the associated patience) now. Both Owen and I do. Working together as closely as we are is wonderful and challenging, also exhausting and hard for both of us.

Yes Owen’s sister Freya will be getting married. And Owen is going to be one of the groomsmen in that wedding, because the groom is that kind of guy, one of the many reasons his bride loves him. Keir asked Owen directly, and waited while Owen spelled out his response. Luckily we have a whole ten months to figure out exactly how that is going to work.

“My opinion is Keir is a lucky guy,” Owen communicated, the weekend of the announcement.

I suspect that Owen may be both very appreciative and also kind of stressed out about managing this assignment. But I shouldn’t assume so.  I will have to add this to the long list of questions I want to ask him. He gets fed up with me peppering him with questions. Answering his mothers questions might actually not be his personal goal for communication. It’s hard to hold back. Being able to ask Owen what he wants or what he feels is a brand new part of our life.

Turns out Owen is  not a really chatty guy. In fact his responses can be classic,  text-book-Hemingway-caveman. This is one way I know that I am not imagining this whole  communication thing, and creating the conversation myself, as experts at places like Harvard insist I must be. When I talk to myself I give myself far more juicy detail.

“What is wrong?” I asked Owen a few weeks ago, when he had been unlike himself, stamping and banging his hand on things at the therapist’s house. “I was in pain,” Owen spelled back, jabbing at the letters on a letter board. “Where?” I asked. “My head.” Looking for more medical clues I dove in deeper. “What does this headache feel like?”I asked. “My head is hurting,” Owen spelled out patiently.

Owen is not all caveman-male in his communications. In his five months of spelling he has let us know some of his emotional truths, he has taken people to task, and he has bonded with family members, all letter by letter.

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As of now, Owen has written an essay for our church newsletter, he has begun a piece of creative writing, and written several emails to his brothers and sisters. His emails are very short. I am sure that no one truly understands the effort each letter costs him.  Muscles, neurons, impulses, reflexes, facial expressions — none of them follow reliably the commands from his mind.  But it turns out that Owen loves to write, which makes writing both deeply satisfying and deeply discouraging. To be able to communicate, but only a little bit, may be more isolating than ignoring the whole thing to chop plastic bottles.

Getting Owen started in creative writing has been my biggest revelation so far. I decided he should write a story simply because this is something everyone has to do in the course of their education. I used a starting sentence inspired by the novel we are reading aloud, Birdwing. “He woke one morning with a rustling sound in his bed…”    Owen took that sentence and ran with it. He certainly gets bogged down, and he does yank away to bury himself in his drawer of chopped plastic. I have to drag him back sometimes to get restarted (not a great long term solution if we are striving for autonomy, advises Marilyn Chadwick). Yet despite his own resistance Owen tells me he says wants to finish the piece.

Anyone who has done it knows how hard writing can be; imagine how much harder to generate it in a complex communication dance, in which you rely on support from another person to get your hand to the key of your choice. I am so proud of Owen, and of this first story. But Owen is not interested in my sharing it.  “I think that it is private, just for me” he let me know last week,when I suggested allowing a therapist to read it, preface to enthusiastically sharing with siblings, and the world at large. A mother can be such a very annoying thing to have around.

And so we limp along, learning together. Owen still has all the difficult behaviors that he always had before. And so do I. It is brutal, to know that we are hurting the ones we love.

After a difficult day of negative behaviors while we were visiting with family this summer, I asked Owen very frustrated, “What can I do to help you?” ” There is nothing you can do,” he spelled back.

“What would help?” I ask another time.

“Read the Bible,” Owen spelled back.

Another time this summer, after being chastised by my son and given that same piece of advice, “Do you mean for me to read the Bible? ” I asked. “Or you?”

“Yes,” he spells out.

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The week of Owen’s 25th birthday, Rockie Mountains, CO

 

 

 

Dad I Am Teasing

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Last night as the three of us sat down to dinner, Edward asked, “So Owen, how was your day?” with a conversational hand on Owen’s shoulder. Even weeks ago this remark would have hung in the air, or maybe I might have tried to answer for Owen. But that would have been the extent of that conversation, unless Owen articulated one of his repetitive phrases, like “A robot” or “Gaston” or “Johnny Appleseed.” But more likely Owen would have kept on eating his supper, looking like someone who has no particular interest in anyone but himself, and no interest in anything but his food.

Things have changed a lot around here, in the last month.

I jogged into the the other room to get Owen’s letter board. “Ok Owen, ” I said “You might as well join the family conversation.”  I grabbed a handy capped pen and sat beside him, pressing the pen into his hand and pushing his arm up into neutral starting pose. Owen began to point at letters on the card. I said each letter out loud as he went. (Some typers say that hearing the letters as they touch them helps them to focus their crazy busy minds.)

“Tre” – he paused – “errible.”

Oh dear, I thought, “terrible”?  What happened? A few days prior when I asked Owen what happened at his day program, he had spelled out “Nothing.”  How do you feel about that? I asked. “Negtive (sic)” he typed in response.

Owen must certainly have felt the saddened energy at the dinner table. His eyes sparkled. He grinned. He began to laugh. Whaaaat? I stared at him.

“Dad” he spelled out “I am teasing.”

Edward burst out laughing. He got us. Classic comedic timing. Saying something unexpected. Leading your audience in one direction, only to reverse on them.  I was giggling til tears rolled down my cheeks, and Owen couldn’t say his part in the blessing that followed because he was so amused with himself. (I can hear Aunt Abigail now, “Oh great. Another smart-ass in the family.”)

Imagine that you are a witty clever guy, who can never say the amusing things you think up.  Imagine that when a method is discovered that will let you “speak,” it is a slow, letter by letter delivery, hampered by your random uncontrolled body movements and compulsive behaviors. That means even though you can now communicate, miraculously, suddenly, you often lose the punchline before you can get it out your fingers. So Owen had to feel good to surprise us like that. A long time coming.

I think I have never been this busy nor as aware of the privilege of being someone’s mother, with a front row seat on the opening of a mind. This summer we have explored history, culture, science facts – what a richness! Owen never got any formal schooling, so it’s all good to him. The old challenges do not just go away – I still have to fight Owen’s uncooperative body ( and possibly his mental anxieties) and fetch him, command him to  come to the table and sit down, and to set down his plastic stuff. This is pretty physically exhausting, and can be hard to understand. I think he wants to learn this stuff, why doesn’t he come? why does he run away to his drawer of plastics? Why does he still collect, chop, and mouth plastics??

It’s hard to help someone if you don’t understand him.  We all mouth the platitude “Don’t judge a book by it’s Cover,” and yet we all do it.  We evaluate things and people by their exterior look all the time. And in this case it’s more than usually hard to do otherwise. My son’s self apparently has two halves:  the guy who yesterday was disputing his mom’s opinion of translation of the Latin religious works of Emmanuel Swedenborg (“I disagree” he spelled out to me, to my great surprise), but today is escaping out the back door to run away and root through the neighbors trash in search of interesting plastic.  Medical minds, professional minds, will want to say to Owen, me and Edward this cannot be true. If a person has intelligence, a person does not display these kinds of behaviors. If a person is cold, he puts on a coat. If he is hot, or thirsty, he indicates as much — of course, right?  Isn’t that where the phrase “Too dumb to come in out of the rain” comes from?

Enter Ido, who can explain everything. Next time I will introduce you to Ido (EE-doh). Ido Kadar, is the author of  Ido in Autismland. I have been reading it all August. It is wonderful. It has helped me to understand Owen so much. What Ido has to say, we all need to hear.

Maybe you should just order your copy, while you wait. Remarkable things (as well as the same old taxing things…) are happening, every day, for Owen. In fact, I see already small changes in Owen’s behavior that suggest a shift. There is hardly any time to write about all we are discovering!  Maybe next time Owen will write you himself.

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Exposure Anxiety

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July 15, 2018

 

Hi Wystan,
It sounds like the conference gave you lots of ‘food for thought’ and that is good to hear. To answer your first question – the idea of retardation has been well represented in history and has had many names attached to it, but the formal category of mental retardation is a constructed idea, one that came in with the ‘bell curve.’ Once we could identify where along that curve a person could perform, we could see who was in that range of retardation.  WE decided where to draw the line between ‘normal’ and retardation.  So in order to subscribe to the notion of retardation, you have to subscribe to what we are measuring with the bell curve.  I do not.  I think we do a better job when we focus on a person’s potential and maximize their ability to participate in the community. (…)

I think of the teenager I worked with years ago. We had a substantive conversation about Saddam Hussein after which he picked up his Dr. Seuss book and walked away. His mother told me later that it took a whole year for him to let go of those books, even though they did not represent him well to others. I cannot underscore enough what is at stake for Owen and therefore the need for patience on your part to open this door in a way that is safe, fun and interesting to him. 
(Part of an email letter from Marilyn Chadwick, June 22, 2018)

Some people who are “nonverbal speakers” (my term)  dive right in to express what has been bottled up for years. That is how it was for Matteo Musso (see Matteo.)  This has not been the case for Owen. Some typers relate that having the door opened to communication was the most wonderful day of their lives, Marilyn says, but that walking through the doorway was another matter. Read the book Exposure Anxiety by Donna Williams, she told meI bought the book.

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Exposure Anxiety is not an easy read. The book is in tiny print, full of painful descriptions of Williams’s anxiety ridden thoughts and experiences. But  I got through enough of it to get the idea. I am coming to understand my son in so much richer color now, as his personality slowly emerges in 3D from the crippling hold of the obsessive compulsive behaviors, the frustration and silence that Williams also describes. I have learned that some body movements that I have known for years but never understood, have meaning. I have learned for instance, that Owen is shy, and does not like me standing up in a group to share about “our” experience. I did this twice at the Conference in Iowa. Owen became agitated. I got the message. I am learning that he is also witty, cranky, mischievous (ok we knew that one).  Facilitating Owen’s typing has come a long way even in the past two-three weeks. It takes persistence, like Marilyn said. Grit. Stubbornness.

It also takes a lot of patience, on both our parts. But when Owen walks away or acts destructively these days I say to him” I am not giving up on you!”  I guess he needs to hear that. I need to say it.  I do get frustrated, battling my own impatience,  but I will be persistent. I promise not to start to open that door for him and then become too busy, or too frustrated, or too tired, and forget to set aside communication time so he can speak. He wants to communicate and gets very grumpy when we do not make time for it, but it is hard work for him – to relinquish the plastic, to focus his thoughts, to access words, to co-ordinate body movements, so that it can happen.

I have learned that Owen loves to be read to. Because of some words he said, out of the blue, I guessed that he wanted to be read from the Bible.   I tried out the book of Daniel, he became totally still every time, listening. By comparison he seems to have little interest in the anti hero Artemis Fowl.  Last night while we were typing, I stumbled on the information that  he does not care for jazz, nor for classical music. He likes rock. Ok then.

The following is slightly edited version of an email written to Owen’s grandma a few weeks ago. It gives an idea of our process, how communication can come forth one letter at a time.

“I have been trying with limited success to get Owen to work with me, spelling out words by pointing, as we were taught by Marilyn Chadwick. A few days back, I coaxed Owen into typing to communicate with me by suggesting he tell me what dessert he would like and I would make it. Still that left too many choices for Owen. So I said “Ok, how about you choose between cookies, cake, and …pancakes?”
Owen touched the eraser end of his stylus to the letter C.  He hesitated after the C, and feeling his certainty wane,  I guessed that he could be hung up on spelling vowel sound. (‘Cake’ follows simple predictable rules, ‘cookies’ does not) We don’t have a lot of packages marked “cookies” lying around, so that’s not a word he would usually see. Just hear.  Turns out Owen is kind of a perfectionist (wonder where he gets that), and this is one of the many things that keeps him in his shell.
So I moved Owen’s hand towards the O twice– then he took over, with certainty, K-I-E-S.  Such a remarkable thing. After that we practiced writing the word with a pencil, hand over hand but him moving the pencil. I have done this with him for years, but only to sign his name on birthday cards. It is truly amazing to me to see clear proof that someone may know so much more than people think, and because that person is never asked to use it the ability remains hidden, lost. 
So I said “But what kind of cookies?” Again to make it easier for him to focus his busy mind, I gave three choices – verbally. Owen directed my hand clearly to the letters CHOCLATE CHIP.
I paused to write down his words and realized that he misspelled that word. So we practiced it adding in the missing O, typing ( I guided his hand quickly) and then we wrote chocolate hand over hand.
Trying to think of how to keep this communication going, I said “But that’s just dessert, what about what kind of meat?”
I won’t take you through the blow by blow, now that you get the idea of how it works, but it came down to Owen typing MEAT IS GREEE and then stopping – and I looked at that said “Are you trying to make a joke here? Like if it’s meat,it’s good?”    Then I said something about English spelling being a nightmare. You would think that those two words rhyme, wouldn’t you, ‘meat’ and ‘great’? But they don’t.
Owen looked up suddenly, so intensely, right into my eyes! with the hugest smile on his face. It was breathtaking. He never looks you eyeball to eyeball, as you know. But he did. He was clearly saying – YES! You get me!
(Edited, part of an email to Margaret Gladish, June 2018)

Old habits, old behaviors for comfort, will be hard to break. An old identity, even one that is a cage, is still familiar. What is familiar feels safe. Maybe Owen will let go of old behaviors, but maybe not. Maybe he will stay cocooned, a thoughtful mind, with a great sense of humor, who looks to others like a brainless, compulsive fellow with a vacant laugh. I don’t know. It isn’t easy, not to know.

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Flying back from Midwest Summer Institute, University of Northern Iowa

My Communication Method is Being Questioned by ASHA. Read My Response.

"A person who is severely impaired never knows his hidden sources of strength until he is treated like a normal human being and encouraged to shape his own life.”— Helen Keller

An ad hoc committee of the American Speech-Language-Hearing Association (ASHA) has put forth the following position statement regarding Rapid Prompting Method (RPM) and is asking for formal adoption by its broader community of practitioners:

“It is the position of ASHA that the use of RPM is not recommended.  Furthermore, information obtained through the use of RPM should not be considered as the voice of the person with a disability.”

Link to full statement: Here

Here is my open letter to ASHA, in response:

To the Members of ASHA:

I am writing to you with regard to the recent proposed position statement certain committee members have generated toward RPM.

Although this committee has recommended against the use of RPM and stated that any communication made through spelling with this method is suspect, I ask that you read my letter anyway. You see, I am a nonspeaking 16-year old autistic guy using…

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Matteo

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I met Matteo’s mother first.

I was at the AutismOne Conference outside Chicago. I had learned days before that the Lanier Weed, the young typer from the iTYPE video would be there (iTYPE), and felt powerfully that I wanted to be there. To see for myself. To talk to other parents. To learn how this typing-to-communicate thing works. We don’t usually think of Owen as autistic, although for a while that world was our world. But it hardly matters. People with all different diagnoses type. When Edward found me a last minute airfare for a reasonable rate and a $95 room at the Lombard Westin that sealed it.

It is hard to describe how it feels to suddenly have a door opened to someone you feel you have always known, yet never known. On both sides, there is fear to step through that door. To embrace a totally new way of knowing and communicating is to step out into the unknown. Joy fights with disbelief. Hope and fear. I know what it is to hope and be disappointed – in people, in business, in medical professionals. I needed that joy desperately and my very need made me skeptical.  The maternal part of me rejoiced, but still struggled to comprehend how the boy who played with plastic and stole the butter could have a mature intellect, if a very scrambled delivery system. The scientific side of me was leary. Although Edward and Freya had typed with Owen, I had still not felt Owen move my hand to type for himself.

Lanier’s video gave me hope. She types freely, on a keyboard, with her mother by her side for emotional support. Surely it must be true. It could be done. We could do it. I watched other videos – a Canadian young woman and her story of typing to communicate (Carly Fleishman). Full of hope then, not to mention joy at having a “mommy escape” weekend, I boarded the plane.

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While boarding I received a message from an old high school classmate, a speech pathologist. He had just read my blog post. He had information to share about facilitated communication, he said, and Marilyn Chadwick, “if I wanted to know it.”  I  felt immediately that I did not want to know it. I was genuinely shocked that this particular man would send it. Had he not just read my blog? how excited we were?  how hopeful? Wasn’t it a little late now to “save” me anyway? Did he really think he was doing a good thing to cast doubt over our hopes? Was he suggesting that my husband and daughter would not be able to tell if Owen was moving the pencil to type words? That a speech pathologist of all people would close any possible pathway, however strange sounding, shocked me.  My classmate was offended. I apologized. I turned off my phone, shaken.

When I got to the hotel, I learned that Lanier would not able to attend the convention. She was ill, and could not make the trip. The event was still worth it to me, I decided, but it was very disappointing. Late that night, after an afternoon full of speakers and vendors, I decided to look at the article my classmate sent. It debunked everything I had been learning. In the mind of the writer, and apparently of the larger speech therapy community,  “facilitated communication” was worse than a joke.  It was exposed as an unscientific fraud, dangerously infiltrating the school system. The results were unable to be duplicated. And there was a sex scandal  — a therapist had had a love affair with a man whose speaking she facilitated. I fell asleep trying to sort through the conflicting reports.  I slept very poorly that night.

In the morning I called my daughter. “Mom,” Freya asserted firmly, “it was real. I came home really suspicious. But as soon as I typed with Owen it was clear. That was Owen moving my hand.” It was good to hear that. I decided I could form my own conclusions from the conflicting stories. It was a weepy day.

In the afternoon I sat down next to a blond haired woman for a presentation about probiotics. The woman was Annette Musso. “My son is presenting tonight, at 5pm,” she said.  He felt called to go to events like this one, and spread the word. “I’m not a public speaker, but I have learned,” she said.  She told how unfazed Matteo was by the questions of disbelieving woman at a prior convention, who said if he were really able to type himself, why would he need his mother beside him?  Matteo had typed, “Have you ever been nervous doing something, and needed support?” She and her son had been typing together for two years. He had written books.  After I had finished sobbing on her shoulder and she dried me off, Annette cheerily parted ways. I went to get a nap.

That night I met Matteo Musso. He is thirteen, a petite young man, unable to speak but able to whisper, or to belt out the high pitched keening typical of people with autism. When not typing he paced back and forth compulsively, muttering and smiling to himself.  For their presentation he sat at a table on a well-lit stage, his mother standing beside him holding a clear plastic card with the alphabet printed on it. We watched through the plastic as Matteo moved a pencil eraser from letter to letter, his mother speaking the letter aloud, and then the word after it emerged. Annette paused him at the end of each accumulated sentence to restate it for us. She did not hold his hand or arm. Just the card in front of him.  Periodically Matteo reached across with his left hand to touch hers.

When he had finished his presentation I stood up. I had to thank him, to personally connect with him.  I felt sure that at least part of the reason he was there on that stage that night was for me. But emotion choked my voice. I sobbed out my message of thanks, telling him how we had learned only last week that my son could type,  how I had hoped and then despaired. And how seeing him tonight confirmed the truth of typing to communicate, in the face of the ugly stories. Around me heard others weeping who knew the hope and the pain of my story first hand.

As he took in my words Matteo squinched up his face and covered his ear with one hand. Then he moved his pencil tip across the card to respond —

“WOW. YOUR SON WILL BE SO GLAD YOU DID THIS. SO — GET OUT THE KLEENEX.”

There was more to Matteo’s response, but I was in no condition to write it down. These words are stuck in my memory.

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Originally I wanted Owen to be at the Conference too, picturing the benefit to him meeting other typers. But he had responded “no.” I see now how good it was I went away alone. We hired Marilyn Chadwick on the recommendation of a friend, for whose child she had been a turning point.  I did not know anything of the controversy surrounding facilitated communication. But I needed to know about it. And far away in Chicago the states of grief, doubt and fear that I processed could not harm him. Feeling me disbelieving and desperate would have been poisonous, as Owen makes his tentative steps forward. I felt lead through the whole process, from hope through pain, to confirmation of joy again, meeting Matteo.

Back at home, the glow lasted a while, but progress is slow. Owen is a different personality than Matteo Musso, who chooses to type on a stage for people to watch. Owen is coming to typing at 24. If we had begun this with Owen at eleven I wonder how his life might have been different! But although I had read some great stories and watched some great movies, I never really believed Owen to be a deep thinking person trapped in an uncooperative body.  Whether because of his age or his temperament, it is also hard for Owen to trust the new world we are stepping out into. Word by word, phrase by phrase, he has begun to reveal himself. It feels like building a rope bridge across a chasm, plank by plank.

We are figuring out the best time of day to fit this into our lives, the ways to make it comfortable for Owen, how to frame topics and ask questions that are interesting but not threatening.  Owen is not running to the letter card but also seems unhappy if we do not keep a schedule of trying to type. As I always have, I read his body movements, his few words, and try to understand. The whole thing feels precarious. But the only way to go forward is letter by letter, and word by word, hand in hand.

 

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These are Matteo’s words, typed to his mother, letter by letter, word by word.

 

 

 

It Her Need

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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.

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Out of Chaos

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

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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.

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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.

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