Honestly Lying

Estate LindHolm (home of limes), St John, USVI

I am a poor liar. So, I might as well confess upfront that this weekend Edward and I have flown far from snow drifts to warm weather.  The fact that we needed respite badly does not mean we deserved it. What does”deserve” mean? We all need it.

Owen wholeheartedly agrees with any guilt I have, and he let me know that it was totally unfair. He pointed out that he has missed out on so many trips. It’s true. He was pretty bitter to be left behind, and also anxious that we might not return but leave him there, in the apartment that isn’t home, coping with a Pennsylvanian winter.

His parents are thawing. Uncoiling. Reading about sea turtles. Heartlessly writing in the sunshine by the pool, or snorkeling in the bay.

Even so, the ties that bind humans to each other and to their work are powerful and mysterious forces. We found ourselves standing at the waters edge on a beautiful beach, in lively conversation with a special ed teacher from St Thomas and a speech pathologist who serves the entire Virgin Islands. These dynamic women impressed us, committed to their work, serving an underserved population.

What also impressed me was that hearing the story of Owen’s voice emerging from silence through supported communication delighted them. They rejoiced.

This is not the common response among speech professionals of America. ASHA (the American Speech-Language-Hearing Association) has officially come out against supported communication. Plenty of other bright minds see it as a lie too. Consider Amy  Lutz, an author and mother of a young man with profound autism and movement dysfunction. Lutz is a doctoral candidate at UPenn, out to prove that supported communication is a hoax. Her research involves pretending to families to be interested, and under the guise of interest observing them in their homes. Sadly she cannot see the independent movements that supporters feel. Owen started out supported at the hand. Now he can at times write supported at the elbow! But he had to start somewhere.

But even those who honestly believe they accept the premise of the split between Owen’s autistic behaviors and his true intentions, find themselves uncomfortable in that space. Doubt or disbelief do not surprise me.  Even at the best of times we humans have a hard time listening to each other. When  the motor system, at the mercy of lower brain anxiety, is at war with the upper brain, whether the diagnosis is autism, cerebral palsy, or stroke, it’s a lot harder. If this guy can control some movement, why not all of them? How can you move “unintentionally”? I hope science finds more answers.

Reflecting on inconsistent ability to move body parts, reminds me of a friend of ours. She told us she has first hand experience of what it feels like to be Owen after experiencing a stroke. She named one of her arms “she” because it would sometimes move unbidden, doing its own thing without permission. “Variable control” you could call it.

how do you firmly guard your soda bottle against mounted attack while conversing to (rather than about, or over the head of) the person in front of you, who is grabbing for it?  And who shows no visible signs of being interested in anything you are saying?

So much easier to look away or to change the subject or leave, than to stand calmly, as our mason John Reagan did when meeting Owen last month. Owen had been thrashing around the house we are renovating, violently kicking the trashcans, likely because it is disturbing to see this house all torn up, still all torn up, but also because trash cans in general are his nemesis. Whatever their cause, the behaviors are exhausting to both of us, and I proposed saying “hi” to John on the way out the door. 

I hardly needed to prompt his arm though, since Owen reached out toward John immediately, arm up and fingers forward in a salute that he uses sometimes with new people.  Sort of like E.T.  And John stopped smoothing  cement, and looked up into Owen’s eyes and smiled and helloed back.  His energy seemed completely relaxed. If he was faking he was really good at it, he seemed at peace. I loved that moment; it set me up for a week.

It has to be satisfying to finally let people know some tiny portion of the million thoughts and dreams pent up inside you. But it is clearly also pretty frustrating, like trying to run Niagra Falls through a pin hole. And the irony is that if you can speak, then you have the ability to lie. Apparently discovering that you can tell a story and make waves makes a nice change from powerlessness.  Other caregivers of spellers and typers have lots of stories of lying, I discovered. It’s a phenomenon.


I remember the shock of the first time Owen told me a lie, and the greater shock when he told a lie about me.  “Why would you do that?” I gasped, “that’s your voice!!”

It is his voice. That’s the point, isn’t it.

And this very autonomy that we sought for our children in the first place may be one part of the explanation for the failure to prove it is happening at all. Maybe it parley explains why the attempts to test supported typers and spellers have created damning, inconclusive, or confusing results.  A bright mind that can communicate can be witty, can speak with double entendre. Or sarcasm.

If you can speak, you can lie.

Although, honestly, telling the unvarnished truth can be just as hard to take.



ST. JOHN


Going away

My parents are going to St. John
It is really warm and beautiful there
I want to go too

I would play in the sea
And lie on the beach
I would look at the clouds
And the palm trees
Birds would dive and soar

I can’t go and mom and dad
Are leaving me in the snow
I will be cold here with Trumbull
Just hoping they come back

Please take me with you
But if you don’t

Please come home

Owen Simons  
2/23/21

Peter Bay beach, St John

Golden

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What do you see?

When you see this photo do you think “Wow! Cool! Golden plastic!’ or do you think “Eww, raw meat bacteria!”

I realized, as Owen darted off with the gold wrapper in his hand, that I have known two people who feel excitement about trash. One of course is Owen. But perhaps Owen comes by it honestly – his great granny, Mary Scalbom Nicholson might very well have seen that golden meat wrapper the same way.

Grama Nick (as I called her) had a real eye for possibilities – and re-using refuse. She made dolls with hour glass figures using dish soap bottles. She stuffed some of her dollies with plastic bags. She sewed old panty hose or stockings onto the tops of her dollies heads (their bodies were made of recycled nylon slip) to create brown curly hair. Admittedly Owen is not so creative with his finds. But as he escaped with the meat package from the sink, I suddenly thought of Grama and smiled. And laughed. I could see her holding up that wrapper to study it, and hear her musing, “Oh look at this! Now it seems like you should be able to do something wonderful with this…”  

I witnessed her doing just that, with an old plastic box or a wrapper. She had a way of seeing things.

The Brazilian-American artist Vik Muniz is such a visionary. His approach to the world’s largest garbage dump in Rio de Janerio, for example, was transformative – for the trash pickers, for himself, and for the viewers too, I’d say. If you haven’t seen the documentary Wasteland, that describes his work there with garbage, with the workers themselves, I recommend getting it from Netflix.

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I like to imagine Vik Muniz meeting Grama. I think they would have shared a lot of mutual respect.

Today I would like to take this idea of re-seeing things one step further. In a way this is the ongoing theme of this blog, re-seeing – the difficult – the tragic – the painful as something transformative instead. In the draft for my book Embracing Chaos I write about a family in my church community who had a baby girl with Downs syndrome. Apparently the young couple did not have a negative reaction to their baby’s disability – they  embraced it, felt it was meant to be. She is perfect, the father wrote in a special needs support newsletter, he wouldn’t even want to change her, if he could. This was hard for me. It irritated me. I felt he was weird, and an extremist, and young, and wrong. His point of view challenged the anger I felt at being the mom of a boy with an intellectual disability. I loved my boy – but not what came with him.

First you have to be angry when trash falls on your life.

But after a while – a long while – of breathing – and coping – and breathing – and coping – you may find yourself staring at the same old piece of trash (it recycles for a while just as trash, have you noticed? before any transforming happens at all) in the sink. And on this day it is possible that you may find yourself asking, “Hmm. Ok. What can I do with this?”

And when you are standing at the kitchen sink of life, and the bacteria laden meat wrapper, now washed out with warm soap suds, looks like something golden – when that happens, you are looking with Owen’s eyes. And Grama Nick’s.

 

 

Bad King John

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King John was not a good man –  

He had his little ways.  

And sometimes no one spoke to him

For days and days and days…                                  A.A.Milne,  Now We Are Six

Owen has been sending me messages. He might not have a lot of language accessible, but he has his little ways. Which is probably why I found myself reciting this poem in meaningful tones. I am hunting for the toothpaste and find it, chopped. Photos of his siblings lie in a pile of cut pieces.

A few days ago Owen wouldn’t come down for dinner when called. I had to go upstairs, into his room, where he was bending over  his collection of plastics in the big rolling drawer under his bed, chopping away.  After a peaceful dinner together, when he seemed finished eating, I cleared the food away, and sunk down exhausted to watch a movie. I invited him to join me. But Owen didn’t go for The Fisher King with Jeff Bridges and Robin Williams. While I was absorbing the bizarre plot, he stood outside the kitchen reaching across the counter eating more and more of the green beans and green peppers than any reasonable person should even want to contain. So there went tomorrow’s lunch.

“Seems a little excessive, Owen,” I said as I harumphed up from my movie. “Been on my feet this whole time,” I sulked to him, scooping what was left of supper into plastic boxes for lunch. “How many green beans can one person hold?” I asked rhetorically. There’s stress-eating, and there’s eating from loneliness, and then there’s eating to tick your mother off. To show that you can, perhaps. To assert independence

King John was not a good man,  

  He lived his life aloof;  

Alone he thought his message out      

  While climbing up the roof.

He wrote it down and propped it up

  Against the chimney stack–

Since Owen didn’t want to watch a movie with me, I figured it was bedtime. But once upstairs Owen didn’t want to get undressed. He didn’t want to come into his bedroom either, but stood out in the hall in an abstract attitude.

“You ignore me, I ignore you.” It couldn’t be plainer if he had written it out.

Amazing that you could spend hours, days, years even, caring for someone’s body needs and remain oblivious of his social, psychological, emotional, or spiritual needs. Shocking to recognize it – and annoying! – but yeah, it’s true. Knowing Owen as well a I do, I can still easily miss cues. I can find myself tuning him out mentally while I am busily caring for his physical needs. When I realize that a set of behaviors are a message, it’s a relief – but some part of my mind still feels manipulated, still asks “Why didn’t you just say so?”

King John was not a good man –

  He wrote his message out,

And gat him to his room again

  Descending by the spout.

Communication is just good. Any old kind. That’s the thing. And I am so glad that Owen persists stubbornly on, trying to tell me stuff when I am too tuned out to notice or listen or see what life looks like from his perspective. Dinner at home with just dad and mom is pretty dull compared to what he grew up with; dinner with only mom who is tired and plunks down in front of a boring movie is even worse. It’s really lonely to be tuned out or ignored – much worse than actually being alone, in your bedroom.

I was reminded this weekend how much Owen likes to have his tribe around him when half of the family came over for a Redskins game Sunday afternoon. Owen had been SO BUSY looking everywhere for hiding Christmas packages I think, hunting through the packets in my closet and my studio, pulling out a package of candles, throwing half of them into the trash…aaarrggghhh. I took him and the dogs for a walk to give his dad some peaceful visiting time, and when we came home there was a fire in fireplace, and family gathered around the television, roaring appropriately, and Owen became very calm.

I want some crackers,  

  And I want some candy.   

I think a box of chocolates

  Would come in handy.  

I don’t mind oranges,

  I do like nuts    

And I SHOULD like a pocket knife – that really cuts.  

  And, oh!  Father Christmas if you love me at all—

King John had his own dreams for Christmas (link below to read more about him), and Owen seems to share many of them. But I wouldn’t be a bit surprised to learn (if he were able to tell me) that for Owen, the biggest thing on his wish list is to be surrounded by his family — with lots of oranges, nuts and chocolates thrown in for good measure.file_001

 

 

 

 

Not familiar?  To read all of A. A. Milne’s whimsical poem about Bad King John and Father Christmas, click on this link. Continue reading