Owen began hitting me as soon as I coerced him to get off the van. I should say say swatting because his hitting isn’t very hard. But this swatting carried a lot more  intent than other times: anger and frustration. I was not prepared for it, groggy from my nap, and felt a flash of anger rise in me and I popped  him in the chest back before I thought about it. Sigh…Not a real good way to teach communication skills. Owen was upset. Still I found it hard to apologize as we walked up to the house, though I knew I should. I lectured him angrily all the way up the lawn.  My non-rational side still registered that I had been attacked, for no reason.

We came inside and I went right for the letter-board. What is the matter? I asked him, more calmly now. You need to explain what is going on when you hit someone.

I think that, Owen spelled out slowly, I am angry because you get friendships with people on the van.

Ah.

I held my arms around him in silence, just loving him, not saying much. This was a good instinct. Owen’s energy was heavy and depressed. It hurt to know that he was in so much pain. I remembered my mom talking so easily to my friends when I was a teenager, and ever so gawky. The frustration. The helpless feeling – how come it was so easy for her?

However, because I am a word-oriented person and a mom, I soon began to layer word solutions over his problem.  “Honey don’t you know that the reason I talk to the people on the van is for you? So people will like you?” I said.  “And BTW, it isn’t a really great way to get to know people, throwing your trash on them and stealing their stuff…”

Owen pulled away and twitched and I put the stylus into this hands.

I hate my life. he spelled out. I am nothin — 

He left without finishing.

No matter what I do it is the wrong thing, I thought. I am getting hit for trying to help. I am hitting when I should be understanding, and talking when I should be silent. Maybe my mom felt the same way years ago, watching with pain her unhappy and awkward teen daughter, unable to transmit to me the social cues I lacked.

I sat exhausted. “I need help,” I said aloud. My mind raced through whom I could call – Marilyn? Angie? Sometimes the best solution is right there near to hand.  I went for my cell phone.

Can Owen and I come and see you at the office?  I texted to Edward.

On a conference call. Ok in 5 min maybe 10, Edward texted back, unsuspecting what an emotional roil was about to land on him..

“Owen we are going to see Dad,” I said. “Get on your coat.”

In the communication session that followed Edward facilitated, and I tried to support and transcribe, as we gave our son space to express his pain. It wasn’t easy. The truth of the matter is that there wasn’t and there isn’t a “solution” for what Owen is facing, the loneliness that his disabilities impose upon him, the longing for and the inability to generate friendship with another human being. But writing about it has to be better than just having those emotions trapped inside. I hope it was a relief to him to have his parents trying to help. It was a relief to me to share the burden with my best friend and feel his patience and calm.

After a while Edward needed a break and I tried facilitating Owen. Somewhere about here Owen gave up on spelling and went for speaking.

“A beast,” he said, looking me right in the eyes. One of his old familiar morphs, but how poignant it felt.

“No Owen,” I said, my voice breaking into tears, “You are not a beast. You are a man.”

“Pinocchio,” Owen said.

“No,” I wept looking right into his face, “You are a real boy.” The Disney-esque words were not funny.

We packed up to go home. Owen stood in the middle of the office, and I stuffed his communication tools back into his backpack.

“Hercules,” Owen said.

“YES Owen, ” I said, without turning around, “Yes. You are Hercules.”

*                     *                     *

Today, as we prepare to gather with family, I am gearing up and wondering how it will go. So many bodies stuffed together in a rented house for the holiday.  Owen both loving to be with family, but unable to be with family without grabbing their stuff and generally annoying everyone. It’s only for a few days.

Still I am thinking — Thank the Lord for all of you. For wonderful husbands who take time to hear their children, for open-armed sisters and brothers, who reach out across whatever divides us, for the voice of support at the other end of the phone, or just a drive away.

Get ready. Here comes Hercules.

 

 

 

 

 

 

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.