Autism

Move It

wystansimons2 Comments

By Owen and Wystan 

Written in the camper, on the return drive from Treasure Island, FL. March 2023

On this morning, just before we left, Owen spun out of the beach house at an early hour – I found him just down the road, at the center of police cars and ambulances. He was unhurt, but had things to say.

Wystan: Want to spell or to type?  

Owen:  “Sp”

Owen: “That was frustrating when the police got my hands and put those handcuffs on my wrists.”

W: They seemed like pretty nice guys to me. What do you wish would have happened differently?

O: ” I wish they would only use handcuffs if a person is not listening.”

W: Maybe he thought you weren’t listening? Maybe that’s what they just do for everyone who looks like a robber? Until they know better?

[Owen pulls the card out of my hands, sets it down and won’t talk]

O: “I was not a dangerous person. I was eating their– ” [disrupted movement, small smile]

W: Yeah, what WERE you eating btw?

O: “- their cookies. And chocolate.”

W: Sometimes people are on drugs, and do very strange things, like that guy Dad saw on the beach. But also could be suddenly violent. I am guessing the police see stuff like that. They don’t know what might happen.

O: “It hurts my feelings [bang, bang, bang] that they would think–”

[Big meltdown here]

W: We don’t know what they think. I’m just trying to help you see the situation through other people’s eyes, to help you understand what you experienced.

Would you like to keep processing this?

O: “Y”

W: If you were a policeman,  called to a situation like that, seeing a guy in someone’s kitchen early in the morning, a guy who did not speak or answer questions, what would you do? What would you like police people to know about how to handle non-speakers?

O: “I would not have the handcuffs out. I would stay calm and I guess I wish I could talk.

W:  Do you mean you wish the police people knew that you wished you could talk?

O: “Yes. Every day every minute of every hour.”

[After a break]

W: So what happened when you got up out of bed this morning?

O: “I was worried about getting into the kitchen again so I went out because that door is easy to open.”

W: I have a question about that. Is it true that you are trying not to break through the locks that we put up? Like do you know how to open them, but you’re trying not to open them? How come you can open things sometimes, but not other times?

O: “Because sometimes it is harder to make my body listen” [Owen starts laughing]. “Sometimes I want–” [more laughing]

W: Does your laughing really mean laughing right now?

O: “Y”

O: [he continues laughing]  “–to get out. And most times –”

[Owen pulls the card away from me and sets it down.]

[Next day]

W: Do you want me to start w a question?

O: N 

[Owen continues to move and sort plastic bags]

W: Would you like to ask me a question?

O: It is hard to write because we have been going so long in the camper that it makes me feeel really deterred from moving.

W: Interesting choice of words. Seems like there’s so little we know about dysregulated movement, or why there would be this separation of cognitive function from muscular function.

O: Yes. I have very little real control of my body. 

[Next day]

W.: Could you describe how getting resistance, or resistive pressure, helps you?

O: it is like havinbg really the wonderful feeling of moving your arm the way you mean it to go. i feel like i cant move.                                

W: Yes, I have seen you get stuck. But sometimes you move very fast, too.

O: i have a hard time with both things .  how to not move is just as hard as moving.

W: Here is part of a conversation that we had a while ago, on this same subject:

W: Do you remember the time before May 2018, before you first spelled?

O: yes i do. it  was reallly terrible. i would standn  at the counter and no one couuld ask what i wanted. to eat.  

W: Do you remember being fed foods that you did not want to eat? 

O: yes it happened a loyt [lot]. i hated eggs and green pepers, and yoiu gzagve them to me so many times. they made me sick. i hafd sto,macnh avchdes [aches]. 

W: Yeah, I remember that you would burp a lot, getting on the school bus. I thought I was giving you a sturdy breakfast.  Some people might not understand why you would eat something, if you disliked it so much.

O: i wsas hungry and you did not give me another fchoice but if you gave me eggs today i would still eat them, beca8use i cannnt sgtop mysrrelggfg [myself].  my body iis not able to stop eating whatever i see .

W: Thanks for providing these insights O. Do you have any last thoughts?

O: it matters that we non-speakers have a voice in the world. the world does not believe that we reallllly are thinking people…but we have brains trapped inside bodies that act crazy. people need to get to even know us.

♥️ ♥️ ♥️ ♥️ ♥️

Owen’s words are literally, word for word, letter for letter, what he spelled out. When he was spelling on a letterboard (in the moving camper), I transcribed it so it is in standard spellings and capitalizations. When he was typing on his keyboard the text is as he typed it. As he describes, when getting started, or tired, or in a state of high emotion, he has a much harder time with accuracy, and even staying in the chair at all. It is a great effort – and I feel so lucky to know him, and all the other wonderful young people who spell and type who have come into our lives.  This interview took place over several days.

For more on this subject, read Owen’s post about getting into garbage: “Pica Hell” January 27, 2020

https://embracingchaos.net/2020/01/

Painting A New Day

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Owen and I are painting together in the Quarry Road Center, a special room in our house. We are “painting together” in the sense of dancing together, where one is the star and the other guy the prop. Being a good prop for Owen’s movements has been my study for three years now. The goal of the whole project is to work myself out of a job.

Owen has been claiming greater and greater control of his arm and fingers. When typing he now points his forefinger independently. And moves his arm forward with light resistive pressure under his elbow about 80% of the time.

But holding a brush for painting is another matter.  Another neutral pathway? a much more complex set of movements?  Or is it because he desperately wants to do it?  His hand is limp, barely able to grasp the brush. The painting is interrupted by Owen’s random body movements, also by my grabbing up a painty communication card so he can spell the answers to my questions, so I can correctly understand what he is trying to make his body do. What color next? Where on the page? What kind of mark do you want? How wide a mark? A tedious process only better than not painting it all. 

So around and around the room he eddies instead, trying to fight his way back to the paper tablet with his half finished painting on it. And I wait. He wraps and unwraps silky golden ribbon around a glass, around rock, plastic, wood, metal. His movements become only faster as my irritation with him grows.

Like Mozart’s father.                                            Like every other sick parent out there.               It doesn’t work. But it is real.

I am too invested, clearly. I want to see you paint, Owen. I want to see what color you will select. What direction you will take this new piece. I also want to feel that the sacrifice of my own time is justified by your production. 

Yoga and deep breathing are my friends. Drop shoulders. Let go of control. Release the irritation. Live longer.

Regardless of his other issues Owen’s boundaries are too good to allow being guilted into anything. He will repel my physical “support” if I cross too far over the psychological space between us. 

It is good, it is healthy, that Owen is irritated with me. Lately he is irritated all the time. He is lonely. He is constantly frustrated by his own impulsivity – by his lack of body control, his lack of autonomy, his lack of friendships. He is frustrated by his own frustration. 

I am also slowly learning to recognize the boundaries between us. Owen is running Owens’ life, on the inside if not on the outside. If my son is unhappy, I don’t need to be unhappy. His life is his own. He is allowed to be eaten up by hated of it, or try to make of it the best he can. 

When last we painted, something was different. Owen picked up the card because he had directions to give me. He picked up a tube of color because he really wanted to paint with it. And his grip on the brush was stronger. Purposeful moments. I hold my breath. A huge tiny step forward, as exciting as the painting he generated that afternoon.  

A couple weeks later we are at an Art Museum. Owen’s body is full of dysregulated movement as we study massive canvasses by Salvador Dali.  An average onlooker would never guess that he wants to be there. He pulls away, toward tiny scraps in the floor, as his dad and I grasp his backpack straps tightly to keep him standing still. The guards eyeball him, although kindly. They have been trained to be “autism friendly.” Still, it’s stressful. 

The Dali Museum, St Petersburg, FL

Afterwards, as we sit all three exhausted at a cafe table, I check in. Did you like it?   “Y” Which one did you like best?  Owen grins. “Abe”.    Ahhh.     

“Gala Contemplating the Mediterranean Sea which at Twenty Meters Becomes the Portrait of Abraham Lincoln – Homage to Rothko.”                  

Never underestimate a young person with dysregulated body movement.  I bet every one has an inner world painted in brilliant colors, that this world has yet to see.

Honestly Lying

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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

Predicting the Weather

wystansimons7 Comments

Feb 2018

Fact: bitter cold can be Bracing! Energizing! but by Groundhog day it gets kinda hard to take. Hang in there everybody. Most of my energy seems to be going into the basic need categories, 1. food  2. washing 3. finding sweaters 4. watching old Downton Abbey episodes.  Not so much writing. So, today I offer you a wander down memory lane. A re-post.  (Here:  Drained)

Attempting to prepare to write this week, I read back through the blog. It was encouraging, which is far better than the alternative!  Have you ever done that? Looked through old journals or letters, and been surprised to see growth in yourself? When I discovered a post from August 2015, I was amazed at how much my attitude and life have changed from that soggy moment. What I wrote there still has the zing of truth for me, but I could not have imagined in August 2015 how happy and content I would be in my life as it is now in 2018 — with all our other kids moved out leaving Edward, Owen, and me to make a go of it.  I couldn’t see . I could not have known.  Frankly, I love being reminded how little I know.  This limitation is a huge relief.  Wow, I am not In Charge of All Things? I love being smacked gently on the head with remembrance that people have ideas, situations arise, and things happen that I could not have dreamed up. It isn’t my responsibility to run your life! (Aren’t you glad I remembered?) 

Every year I seem to learn greater appreciation of life with an Owen to care for in it.

I don’t want to sugarcoat this. Regular readers have seen enough of our adventures-with-Owen to know how hot and gritty things can be around here. I simply could not be Owen’s caregiver without the support that we get, without regular breaks, without respite for each of us apart, and together. We are grateful for every bit of it. Human beings are meant to grow up, and when they do not, extra supports are required for caregivers to maintain that kind of high intensity care.  I am acutely aware that many who need it do not get it.

Owen is enriched by breaks from us too, I think. The outings with his wonderful sitter Kathie — the wanderings, the parks, the please-touch display at the Patuxent Wildlife Refuge, the turtle at the Nature Center — are stimulating to his brain and hisimagination. He is still growing and evolving. His parents are still growing and evolving.

I take comfort in not knowing, but the well-known cycles are comforting, too. Winter can be bitter, but underground roots are growing slowly in winter, too. Time moves forward, never back. And spring is always coming.

I hope you enjoy a peek back into 2015, when I was feeling Drained…

image.jpg
Photo by Kathie Constable, January 2018

 

Owen the Plastic King

wystansimons5 Comments

 

 

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If you caught my last posting for Suburban Growing, you know that plastic has been much on my mind. How could it be otherwise, you might ask, when you live with a guy who is a plastic connoisseur?  A guy who chops up plastic for an occupation – a mission – a passion? Too true, Owen and I are both passionate about plastic.

Ok, ask the next obvious question: how on earth have you, a plastic hater, allowed so much plastic into your son’s life anyway? Until the floor of your house is gritty and lumpy with chopped up bottles and dismembered toys, and dissected plastic bags swirl by a the ankles (hey, only on a bad day) as you pass through the room?  Ah well, that is a very different kind of question, and the answer has something to do with fatigue and giving up in the face of the storm. Something any mom or dad gets.

Heck, until recently Owen’s morning bathtub could be swimming in plastic –  multi-colored hard plastic shards, or shimmering plastic bag ribbons and banners. Sometimes there was hardly room for him in there, if the baskets went in too. Owen enjoys taking things to extremes. I had to pick plastic out of the drain regularly to keep the water moving.

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But no more. After I listened to that pivotal NPR program about pervasive micro plastic pollution last November, I gathered steam to put my foot down. In a very nice way (of course!). It is one thing to allow a person to make a mess, but it’s another to hurt the environment and poison his body thereby.  I may be a hippy, but I have limits.

I told Owen, “Plastic is great for cutting, but not for baths. Plastic in your bath will make you sick. Wooden things can go into the bath.”  Owen was naturally not all in with this new regimen. Yet I have been amazed at how much he has accepted the new rule for plastics. He didn’t get mad. He didn’t stamp his feet. I was prepared for those things. Maybe designated chopping times and locations makes his life a little more interesting.  I know that his life is boring to him, an issue of much greater concern. The other explanation is that Owen understands when I say “This will hurt you.” That would be wonderful.

Every morning he brings his plastic basketful of plastic into the bathroom, and every morning I say cheerfully (of course!) “Oh plastics are great for cutting, but they don’t go in the bath.” It is easy to be cheerful when Owen is co-operating with me, when I getting things my way. It is a great relief to get those piles of plastic out of the one most sensitive areas of Owen’s life.  If only there were a way to get it out of our lives all together! Don’t worry buddy, no chance of that any time soon.

After putting my foot down, Owen and I took a trip to the local Goodwill, and perused the shelves for wooden objects. We had a good time. Owen loves wandering the Goodwill.  Besides a wooden rolling pin, and a weird wooden and metal agility toy, I found a whole set of wooden alphabet  blocks.  Apart from being non-toxic to Owen and the waterways, the switch to wooden bath objects has yielded an unexpected benefit.  Using some giant wooden letters I found at Target and the secondhand alphabet blocks I am taking a few minutes each day to talk to Owen about  letters and their sounds while he is in his tub. Keeping it fun. Am I imagining it or does he seem to be listening?

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You can’t do much to manipulate wooden alphabet blocks though, and manipulation is exactly what Owen loves about plastics (and aluminum cans too, if he can get one)  To be able to act your will on something and alter it –  the whole broken down to bits, ripped, chopped. Those large and brand new letters from Target are (were) more intriguing since they can be broken up. Now our E is an F, and the S has been deconstructed into two lower case “u”s. But I am not giving up – I sense cognitive receptivity in Owen that I do not remember sensing before.  Maybe his brain is maturing, on its own maverick arc? Maybe if you are bored enough with your life when opportunity presents itself you respond?  Could it be that standing up against plastics is the spark for an entirely new journey for me and Owen?

Or is it possible that by fixating on plastics so obsessively, Owen has been making that point all along?  Look at this horrible stuff that I am dragging into the house, and piling in the corners, and finding in the fields and in the woods, and the parking lots!  LOOK MOM! LOOK!! Isn’t this GROSS!?!

(Read more about impact of plastics on human health here Invisibles, Orb Media , watch here Drinking Microplastics?  or listen to an NPR program here Plastics Are Forever, November 1, 2017 .)