“My Story to Write” 

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Owen in front of the Jim Henson Memorial, University of MD campus

Owen, Edward, Trum the bulldog, and I are back home now.  We still have work to do. Not all the rooms are reclaimed. But I no longer have the dizziness that bothered me for so many months. My arms no longer ache as they did, with lymph that is not draining. Home feels pretty much like home. Our house smells good – even Owen says so, and that boy has a nose for mold.

But as I try to get back to my writing here, I am blocked. As Owen’s own voice slowly emerges through the constant “noise” of unintended movements and mental distractions, I am more and more aware of the ethical complexity of writing “about” him – his behaviors, and our crazy life together. In the past as mother/ observer/writer, I described my son’s doings as I tried to understand them, dealing with my own pain by objectifying my experience  of him, imagining and wondering about his experience of us. Now Owen tells me “I AM EMBARRASSED WHEN YOU TALK ABOUT ME” after listening to me talk about him to his sister. I am discovering that he is a pretty private guy. 

Do I have the right to tell Owen’s story?  Human beings are not objects; one person’s pain should not be another’s entertainment. But what about my experience? I argue. Some part of this story belongs to me, too. People love to read about Owen. Writing this blog about my struggles, I find I gain insights about how to do it better. And through stories of our shared experience of the chaos his disabilities create, we help other people to understand very different kind of mind, a very different human experience. Surely that is a good thing?

“I haven’t written a post for Embracing Chaos since December,” I said, sitting down beside Owen. “ I don’t know how to go forward with it. I don’t want to invade your privacy.” Owen made a reflexive movement, and I offered him the paperboard and stylus. “I APPRECIATE THAT” Owen spelled out.

Doggon it! I thought. “I am really glad you told me that,” I made my mouth say. “But on the other hand,” I could not help adding, “your mom is a writer. Families of writers often have to deal with being written about.” I went out of the room to get him some clothes or a toothbrush. That ended the conversation for the moment. It is easy to get the last word with Owen. 

Stuck underneath an unresponsive and downright contrary body, Owen’s having any voice at all depends on someone remembering to ask, and waiting while he fights with his body and reaches for each letter. As I understand it, physically his body has its own animal agenda, mentally his thoughts run much faster than his ability to catch them into words, and psychologically he is riddled with anxiety about being seen and known. He must reach through all these layers to  have a voice. Facilitated spelling and typing offer a person with non-speaking autism a way out of prison, but it is like stepping out onto a swaying rope bridge across a chasm over fiery lava.  It requires trust and bravery, and a lot of practice.  In several of our conversations this winter, Owen has tried to impress on me how helpful to his writing (and his behavior) a SCHEDULE is. “But I am no good at schedules” I moaned to him. “I THINK THAT WE HAVE TO TRY” he compassionately spelled back.  

The issue of how to go forward with the blog was still in discussion when Owen and I visited his therapist Megan for MNRI (Mastgutova Neurosensory-motor Reflex Integration Therapy – more on that later). I chatted away to Megan about it while Owen, unable to tell his mother to shut up, received his therapy. Megan suggested we check out Brene Brown, author and TED talker on the power of vulnerability.  Of course I was very interested. (Had the topic been “The Value of Privacy” I might not have been so enthusiastic.) I think I asked Owen if he wanted to listen to it. I hope I did.  We drove around the Beltway listening the TED talk by Brene Brown that made her famous, and earned her nickname “vulnerability Ted” in some circles. I loved what she had to say. Owen’s body was very quiet as he listened.  (Brene Brown TED talk) 

The fascinating thing about Brene Brown is that she hates vulnerability. You can actually hear this her voice, as she tells her story. She only studied the subject so she could subdue it –  “to solve the problem of human pain, package it in a Bento box” and move on to the next agenda item. Very tidy. And then when her research seemed to reveal that to be vulnerable to being hurt is necessary to human growth and creativity, she had a nervous breakdown. Because of being such an unlikely and terrible poster child for the subject, she becomes an excellent spokeswoman for her subject. But it isn’t easy.

It seems to me that life (job, family, spouse, health…) often asks of us the very thing we are not good at doing. I have heard that often people chose a path that leans on their weak spot — like Brene Brown the control freak becoming spokesperson for vulnerability. Or Winston Churchill, Barbara Walters, and Carly Simon, all of whom have speech impediments, becoming public speakers.  Another way of coming at this subject is what Malcolm Gladwell writes in his book Outsiders — that there is no class of super- talented super-achievers outside the norm, destined for greatness. Gladwell claims that opportunity, luck, and 10,000 hours of focused practice are what made Bill Gates into Bill Gates, and turned a 1960s boy band into the Beatles. 

Owen by his personality hates being exposed, and yet his autism causes him to constantly behave in a way that draws attention to himself. Still all the attention we may pay his behaviors will never reveal who he really is, since those behaviors do not represent him.  He tells me he longs to become a spiritual leader, “a minister of some kind” which will require him to work through layers of physical and emotional resistance, and hire a support to help him control his behaviors and get his body to release his thoughts.  I think Owen is being called to an opportunity now to serve the autistic community, and his country, and really the world, by sharing his experience here in this blog. But like anybody Owen has a choice about how he responds to that call. How will he minister? 

“So how shall we go forward with Embracing Chaos then?” I asked Owen later. “Do you want to edit it? Or be a contributing writer? Or would you just rather not know what I am saying about you? “

“I WOULD LIKE TO WRITE AND EDIT.” Owen spelled out. “IT FEELS LIKE MY STORY TO WRITE.”  

And so it is. This is the first blog post that we are co-writing, about our joint chaos. It is harder, but it is very interesting. I read him a rough draft of this post. Then at the keyboard Owen typed:

i like the post you wrote mom. i think i like the part best where you tell about the ride to megan.

And what did Owen think about Brene Brown and the power of vulnerability, in artwork, friendship, and life?

Owen thinks for a long time before answering. Then he types, very slowly.

i think that it is very hard to be vulnerable.  because i feel naked when i make mistakes. 

I will be reading Owen this post again, in its final form. Maybe I will find out that it is not the final form… One thing is for sure, it is exciting to watch another writer emerge and find his wings.

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Owen uses his eyebrows a lot to communicate the affirmative

[Note: Owen’s voice is shown in BLOCK CAPS when his spelling/pointing is quoted, and in italics when his typing on keyboard is quoted.  Because typing a capital letter requires from him a 3 step process with caps lock, we generally do without capitalization at this stage.]

11 thoughts on ““My Story to Write” 

  1. Betsy April 15, 2019 / 9:52 am

    I haven’t seen a picture of Owen for a while. The first thing that struck me is that he looks so relaxed.

    Like

    • wystansimons April 21, 2019 / 12:24 pm

      That is so great to hear Betsy. It is really hard to evaluate this kind of stuff when you are with someone all the time – but I sense that something has changed/is changing and evolving for Owen that’s for sure. Wait til you see his new glasses!

      Like

      • Ann April 21, 2019 / 9:43 pm

        I had the same thought: he is so happy. He is so much more fully comfortable in his body. Inhabiting it.

        Like

  2. nabobs05@msn.com April 15, 2019 / 2:30 pm

    Thanks for this, Wystan. Amazing. When weighing the problem of Owen’s right to privacy and your need as a person/mother/writer, you might consider the impact your writing has on readers. Learning about Owen and about your life with him may help all sorts of people learn things they wouldn’t know without your blogs and who knows, perhaps help them with their own problems. – Aunt N.

    ________________________________

    Like

  3. Janice D Lumsden April 15, 2019 / 3:55 pm

    Love this Wystan. Thank you Owen, for sharing your journey with us.

    Like

  4. Dan April 15, 2019 / 10:08 pm

    Owen-

    Thank you for allowing your mom to write about your mutual story and joining her in doing so. It helps all of us grow and be more compassionate people and parents (for those of us with kids).

    With love and respect, Dan

    Like

  5. Cc April 16, 2019 / 6:12 pm

    This mom needs to realize that her son says no. No means no. Stop posting about your son’s life. He is aware and you should honor his choices.

    Like

    • wystansimons April 21, 2019 / 12:20 pm

      Dear Cc – I honor the way you respect the voiceless. Owen worked with me on this piece, and gave his “ok” for this post. I will be consulting him on anything I write about him hereafter. After thinking about it, I have decided that as long as he is comfortable with what is said, he will serve the world better to have his story known, than to live a life hidden from the world. So many people with special needs have lived that way, separated and cut off from the mainstream, and that is denying us all the beauty of contact with them, and them access to a life of use.
      Thank you for caring about this issue.
      Wystan

      Like

  6. Lori Odhner April 18, 2019 / 3:51 pm

    Waaa! I write about Ben too!! Sigh. Thanks for writing this.

    Like

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