Embracing Chaos

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 Tribute) Beautiful 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.

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 our spech teacher 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 it is to generate writing 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 in frustration, “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.