Autism

Too Heavy

wystansimons4 Comments

Owen and I made it almost on time for church. This small victory was more impressive since Edward was away, and I was doing things solo. Nevertheless, Owen did not like walking in late, and at first I thought we wouldn’t be able to stay, as his embarrassment manifested through his body. We both stayed tense, sitting on the edge of our chairs, backpacks on. It didn’t help that today’s minister was different.

But the visiting minister was chill. And he had engaging things to say. Owen was able to override the anxiety-that-becomes-hitting, pulled it together, and we followed the unspooling of thoughts. Asked to picture an object that might be seen as carrying a message to me of something deeper, I studied a large ceramic planter on the floor near the window. It looked just like the kind of thing that Edward would tell me not to try to move by myself. It stood on a rolling tray.

I studied that pot, feeling certain that the massive form held something for me to get. 

So many things in my life feel so very heavy. The challenges before me feel insurmountable, frightening.  That’s if I peer in at my inner self. Usually I keep that door closed, just keep threading my way across the chasm on the swinging rope bridge, and don’t look down. The day to day challenges of assisting a person who needs a great deal of support to get through life can be fatiguing, but that isn’t it. It’s the larger question of how to keep our educational organization Real Voices of Philly (realvoicesphilly.org) alive and independent, and how to create a home for Owen with a small group of typers and spellers, so he can age with friends. Able to communicate his thoughts. Able to do his writing. Funded. Cared for kindly.  Safe from predators….

I have no idea how to do those things. I never got training in those things, and more than that, it isn’t what I wanted to do with my life. I know that as Edward and I are setting it up we will be told over and over “that is too heavy for you”  and “you can’t/aren’t allowed to do that.”  

And the other truly frightening thing – what if my partner in crime, who understands the financial side of the undertaking so much better than I, moves out of this world before we figure it out? How can I possibly navigate this enormous problem solo? (As I am writing this I can feel my blood pressure rise.)

The huge heavy pot sits on a little tray with casters. I don’t remember what was growing in it. I visualize the big clay pot. Something that the minister says reminds me of the history of the wheel – an ancient invention. One of the earliest.  A way to carry very heavy objects that has been with us for a long, long time. The tool is there. It is literally right underneath, waiting to be put to use. 

Sitting in that room, on the edge of my chair with my backpack on and waiting for Owen to fall apart, I take a deep breath. I believe this pot’s message. What I need to carry my burden is already there. It is under my feet. Start with this room of caring individuals, and the two ministers who lead the group – they all make a space for Owen, and are interested in his thoughts. 

And in my life this spring, it is true – remarkable things have happened. People I never dreamed existed have shown up in our lives. Ever since we moved to the Philadelphia area people have arrived seemingly out of nowhere. Even though we spent many days of terrible anxiety or exhaustion, uncertain we could keep it up, actually helpers did arrive. This fall even more people have come out of nowhere, enthusiastic for the mission, presuming without difficulty the intelligence of our non-speakers. Wanting to learn to support communication. Able to take in stride and with compassion the behaviors that autism brings. 

Not really out of nowhere. I had to ask. I had to push against the weight – reach out for help. Write a message, find time to follow up. Sometimes ask again. Organize my life better, organize my thoughts. Write a proposal to be able to ask more specifically.  I had to talk people through things. Let go of some things. 

But, I am not alone. There are now other parents, other students, more teachers, and helpers, aides for just Owen and also for the organization that gives him something meaningful to do with his life. That prayer that I used to say, that if this was meant to happen then it would be you God doing it, because I couldn’t, I couldn’t, I couldn’t possibly do this lift…that prayer seems to be answered. Maybe it IS meant to be. 

Because now I see that the heavy pot once rolling, could take new form, could transform.  Become a huge hot air balloon lifting the weighty basket of beloved people.  Fueled properly, perhaps it rises, independent, airborn, and floats slowly upward, while I shade my eyes watching, in awe. 

Move It

wystansimons4 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

Golden

wystansimons7 Comments

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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 →