Exposure Anxiety

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.


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.

Flying back from Midwest Summer Institute, University of Northern Iowa

2 thoughts on “Exposure Anxiety

  1. Janice Lumsden July 16, 2018 / 3:27 pm

    Wystan, than you so much for sharing your journey of discovery and opening doors.


  2. Mary P Grubb July 21, 2018 / 4:22 pm

    I agree, thanks for sharing! It’s all quite amazing and fascinating !


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