Spoon rest, by Bronwyn Simons

I love the cranky prophet, Jonah. He who, dragged back to the task assigned him by God, unappreciative of being saved from drowning (by a large fish), unsuccessfully calls the city Ninevah to repent its evil deeds, and then watches sour but hopeful to see Ninevah blasted for disobedience. But Poor Jonah! God forgives them. Some religious leader. He makes me laugh.

I think I laugh because I see myself there, all my plans and my agenda(s).

When I got the memo that a large portion of the rest of my life might be given over care of a person with significant special needs I was bitter. Like Jonah – hey! I didn’t ask to go to Ninevah! And it wasn’t just care of Owen that overwhelmed me. I ran away from my caring for children job in a hundred little ways.

A poem written at that time, most likely scrabbled down standing at the kitchen counter on my way to doing something else, expresses it —

Running to Kansas —-

in the garden patch

among the bees

Running away at the sewing machine

the washing machine

the committee meeting

Running to the novel in the bathroom – the music in choir–

Standing at the kitchen sink,

you are running away,

mother at home.

Standing now, to face the human need—

the hands that grab

the mouths that want

the eyes that want and weep,.

release the urge to find another world.

It will wait.

Creation like life never ends —

Be here, now.

Mother at home.


It has taken many of my 26 years with Owen to accept the job with grace. To learn how to physically care for another human without resentment or impatience — not to merely tolerate it, but to enjoy it. Of course I love my son, but the work of physically caring for another far past the usual cut off point is what I mean here. Side note: some of those unsteady moods I experienced (sadness, rage, despair) can be attributed to bipolar illness. I take medicine now to balance my mental states, and it is a gift.

Most recently in my mother journey, I understand my task is to support without intruding my agenda. EVEN if it is a very supportive, enthusiastic, loving agenda. Mom’s enthusiasm can be in the way. Last month Owen stopped being willing to communicate with me supporting him. I missed that connection sadly. But it wouldn’t work. After a few weeks he was able to spell an explanation: I CANT TYPE WITH YOU BECAUSE I FEEL YOUR GREAT HOPES FOR THINGS THAT COULD BE. Then he walked away. Later he explained more, in a conversation supported by his dad – I HAVE THEM [hopes] TOO. I JUST WANT TO DO IT MY WAY.

If you love someone, set them free.

How ironic to try to set someone free who depends on you for nearly every action in his life. Yet no person is more in need of that emotional freedom.

This Mother’s Day, I was treated wonderfully well by all my children, with calls and flowers, cards and gifts. One surprising gift was a song by Owen co-written with his teacher Brian Laidlaw.

It meant so much to receive this gift from you, Owen, to hear your words, to know that you feel this way, after all that we have been through together. You wrote those words, and in the same way that love produces more love, a never-ending stream or trickle (just when the pot seems empty sometimes), so artistic creation seems to breed more artistic creation – there is no end. So your entrée into the creation of your own artwork fuels mine – and where once I felt like I was drowning, I discover myself rescued and carried by a magical fish, to dry land.

My Mom is love to me,

my Mom is love to me;

She can see me.

My mom is love to me.

She gives me hope,

she makes me hope,

she wakes my hope —

She gives me hope,

she makes me hope,

she wakes my hope.

My mom teaches me, my om teaches me

She keeps me healthy,

My mom teaches me.

She gives me hope,

she makes me hope,

she wakes my hope—

she gives me hope,

she makes me hope,

she wakes my hope.

It’s a lot of work caring for me,

but she never gives up,

both physically and mentally–

but she never gives up.

She gives me hope,

she makes me hope,

she wakes my hope—-

she gives me hope,

she makes me hope,

she wakes my hope.



i feel nervous about germs. this might seem funny to you since i ouilli have a struggle to not eat garbage.  but i really am afraid of getting sick.     

my mom says that i have an incredibly strong immune system because i eat garbage.  she feels that that the germs make me stronger but i still feeeeel worried.    

i need more evidence.    


[UPDATE: This is a link — I hope — to a song that Owen recently co-wrote, with Brian Laidlaw, his new teacher – called the CoVid Blues]


[Owen uses supported communication. As he practices with his support people, he is gaining more and more control of his disobedient muscles, more and more independence at the keyboard.  I compare the process to what a person recovering from a stroke might go through, recovering the connection between brain and body..  This piece is entirely his work, as he wants you to see it. — Wystan]

Eating Broccoli on the Moon


I wear the wind.

The wind changes me

from a tense figure

to a galloping gaucho.

The wind quiets

and I am a striding explorer

in the Valley of Many Voices.

I close my ears

and feel the swirling wind

transform me to a lone skater

spinning on a frozen lake.

I eventually fall

into the gentle rocking

of a boat going slowly

down a stream.

The wind crafts the story.

It costumes me and feeds me cues.

I shout into the gales

with joy.

I am moved

by their force.

I am freed

by their fury.

When the air is calm

I sigh

and rebecome


Dustin Duby-Koffman

2019 by Unrestricted Editions, Minneapolis, MN

Author’s Bio:

I am a poet and songwriter who has been communicating with a letter board or keyboard for about five years. I wrote this poem to express my longing to be free of limits. I hope others let loose and experience life in every gale or breeze. I find that writing is a good first step to becoming who you are.

March 28th, 2020


I would be very happy for you to share my poem. I am very glad you like it. I will check out your blog this weekend. I think it’s great that you and Owen have a joint project.

Please tell Owen not to despair. I also came to letter boards quite late. I still get angry when I make a mistake or can’t get my thoughts out as quickly as I’d like. My parents would like to see me type independently, but I freeze at the very idea. I don’t know why, but every new step is scary.

Owen might want to try sessions with Chris Martin for poetry writing. He got me started.



Eating Broccoli on the Moon, is available at or Amazon.

Advice from Professor Anliker

Pandora by Roger Anliker, Gouache

Thirty-five years ago I studied at Temple University’s Tyler School of Art, with a professor Roger Anliker.  When I knew him, Anliker was a petite man with jet black hair combed back from a pale and lined face. He smoked in class.  He seemed fragile, but highly intelligent and scary.

When I climb back onto that page of my history, I am standing in a large airy studio before a tilted drawing table, the rumble of an enormous ventilation system filling the air.  My miserable and vague charcoal sketch of a nude male lies before me, sans genitalia. I am hoping no one has noticed. Maybe the tilted table hides my lack of skill and bravery. I am new at drawing from nude models, and dreading the professor’s approach.  But Anliker stands beside me, a cigarette between his shakey fingers, and an enormous ash built up and dangling from its end. A few sheds of ash fall across the paper and he whisks them impatiently away. 

Whatever he actually said about my attempt at drawing is lost to my memory – but if he had said something clever or critical I am sure I would have remembered it. (I can still hear Stanley Whitney cheerfully using my first painting in his class as the bad example, “Ah, now this is a piece of shit.”) What I do remember is a sense of patience…and humor. Anliker (my class called him Roger) was the kind of man whose razor wit terrified junior classmen — some students called him “God” — but under the apparent arrogance and critical tongue was a kind heart.

Everyone deals with chaos on the pages of their lives, one way or another. And certain things Roger Anliker taught about drawing have armed me for arenas I doubt he expected. Though it’s true, he did cast a pretty wide net. He had no trouble presenting himself as a deity.

When you are starting a picture, Roger said, always make three models. Don’t just go with your first idea, he said. Come up with three ideas and choose the best one. This stuck with me. Chicken coop additions, strategies for fundraising, ways to talk to difficult people have all benefited from this counsel. So of course have my paintings and screenplay scripts. Christmas plays. Garden designs. Puppy training. My children can tell you that “make three models” has been an idea impressed on them, too.

Create three examples. Draw three pictures. Think of three possibilities. And choose the best one.

Roger had more to say about models. Always have a model, he said. Don’t draw from memory, from your head. If you’re going to draw an alligator, and you don’t have an alligator, find something that looks remotely like an alligator and use that.

He also said, ” If Grumbacher [sketch paper company] knew how large your painting was meant to be, and sold you a piece of paper exactly the right size for your drawing, that would great. But they don’t. If you get to the edge of your paper and you aren’t finished, then grab another piece, and attach it and keep going! Don’t allow the size of the paper to determine what you are creating.”

Thirty-five years later, as I am standing in my kitchen, making the morning smoothies, I suddenly remember those famous words. I am trying to think how to deal creatively with my son’s anger and unhappiness with his lot in life. He is stuck. We are all frustrated and stuck. How do we go forward?

Imagine life outside the confines of the page you see. Ignore the edges. Make three models. Throw out the two that don’t work. And go.

Pica Hell by Owen Simons


i want to write about rotten food.

i sometimes grab garbage and eat it. i hate that i do that.    i think i want to. yuck. myself. out so. i. grab the grossest thing i can.  find and i stuff it in my mouth.

i find myself in front of my. neighbors trash can.  i dive in to drag out the plastic bag full of trash.  i rip open the plastic bag. i want to stop but i cant. i feel inside the bag looking for something. sweet. but i only find greasy meat. i cant eat that but the thing. under it is bread. i can eat bread.  i. shove it into my mouth. it tastes like garbage. i. hate the. taste but i. cant. spit it.  out. my mouth muscles dont. do that movement



the trash can raiding was becoming a. pattern. then i. was eating garbage one afternoon and i. heard.  my mom coming.

mom came and yelled at me. she had  an idea how. to get me to. stop. she went inside and found the malva the. little bottle that she used to stop freya from sucking her thumb. she went back to the trash can and painted the top of the trash bag. then she painted my mouth and. my  fingers.   it tasted awful. really really.  terrible. the worst thing. i have ever had in my mouth.  but it worked.  i have eaten. garbage since then. but. i have not gone across.  the road to get it.


PICA : A craving for something that is not normally regarded as nutritive, such as dirt, clay, paper, or chalk. (…)Pica is also seen as a symptom in several neurobiological disorders, including autism and Tourette’s syndrome…     (





Up on the Roof

Photo credit:

“If this old world starts gettin’ you down, there’s room enough for two, up on the roof…”         James Taylor, Up On the Roof, Flag album

I am driving along with Owen, toward Saturday errands. It is a grey January morning after our gym workouts. I feel good, but Owen has been down. His inability to control body movements has been greater, and his sense of being dead-ended. James Taylor’s version of the iconic Motown song moves me – I hear in those words everything I want to say to Owen about perspective – that how you look changes what you see –  and how you see what “is.” I sing along, and glance at his profile.

Christmas was nice, in spite of sickness, in spite of the absence of some family members. (Owen told his sister Freya more than once that if she didn’t come home, she wasn’t getting a present. She ignored the threat and got her present anyway.) Our love connected us, despite distance of all kinds. Some love was transported by voices enabled by modern technology. Some required other kinds of energy. I found myself thinking frequently of my dad and my mom, and my brother Keith, each of whom left this world near Christmastime. A little more emotion in an already highly charged season.

I THINK YOU ARE GETTING TOO MANIC Owen spelled out to me, sometime in early December. I THINK YOU SHOULD TAKE MORE MEDICINE.

I felt a tad resentful at this. A bit…rebellious. Judged unfairly. Still, I increased my small dose of Lamotrigine (with the blessing of my psychiatrist), and split it into two parts, the first one earlier in the day.  Not earth-shaking, but no ill effects; it has been a good idea. Owen has insights. It is true that “He is not,” as his sister Bronwyn pointed out once (resentfully?), “an oracle.”  Not an oracle, but an intuitive.  Perhaps with so many abilities compromised, others are more greatly developed?  But intuitives can still be blind; no human way of seeing is whole. We need many perspectives.

The holiday viruses that captured us, and held us hostage, missing special people and events, also had their perks. On Christmas morning I dozed on the couch through our family worship readings, and woke surrounded by music. Unable to sing, Owen and I both listened silently (he chopping) in the middle of the cloud of music.  Even without our family alto and  some of our tenor voices, beautiful harmony filled the room. Because I know to look for it, I saw/felt Owen’s body still and listening.  This is Owen’s always world, I thought. Listening, surrounded by sound. Good? or bad?  This fall Owen started piano lessons. Now we know how much he loves music, and I will make sure his new year includes concerts. Somehow we will figure it out.

But first we must forge our way through the after-holidays. Now the mornings seem darker. Now the chopped hot water bottle, the stolen, crushed and emptied husks of my cleaning products, proclaim Owen’s inner turmoil. An afternoon wandering a park with his aide only seems to have intensified this state of mind; he cannot type or spell coherently that evening. Next morning he is able to tell me — he is angry. He is frustrated. His hand punches the letter card. His younger brother Oskar gets to leave. Oskar gets to go to college. Owen is trapped.

Do you think that it is fair for you to damage my stuff because you are angry and don’t like your life? I ask him, striving for emotion-neutral tones.


Owen seemed to feel calmer after this. His typing hand was not so punchy.

Let’s think of a way I say, sitting down beside the tub, tablet and pen in hand. I begin to scribble ideas, ways Owen could turn that frustration into art…   Slowly, the schedule for Owen’s winter studies is taking shape.

Once you couldn’t tell me, Owen. Now you can. You may feel darkness now now, but I hope you will return to a new view of it, the incredible if imperfect gift of speaking by assisted spelling. To you. To us. To the world, reading your words. The remarkable journey that you are on.

Some readers, following this blog, reading our words, may also struggle to see what I see, may have doubts that what we write could be true. Could a person who rushes about grabbing, chopping or biting plastic really have an active intellect?  Could such a one be alive inside, intelligent but retreated? disconnected from the insanity of his own body movements, unable to stop himself? Could a person seeming so out of it have intuition or extra-sensory perceptions of other kinds? and can such a one be called forth by focused support, learn to connect his brain and body?  As the stroke victim recovers ability in a frozen body part, via purposeful therapy, so Owen is slowly learning to direct his fingers and hands. We have various methods to deploy: reflex integration therapy (MNRI), music/drumming, piano lessons, swimming. But all of it starts with supported movement.

Thank God for its inventors – intrepid Rosemary Crossley in Australia,  inspired by a twinkle in the eye of a young woman with cerebral palsy.  Soma Mukhopadhyay, who kept on nudging her son’s arm because this enabled his hand to move, and his poetry poured forth.

A new year has begun. Take a fresh look. Come on up on the roof.

“Everything is alright, everything is alright…”      James Taylor, Up On the Roof

Post Script:

Owen is laughing in the tub as I read him this last blog draft, asking for his edits.     Do you feel better when you type out your anger or frustrations? I ask.  YES I DO he spells.   His mouth says  A witch. A tinman. A tinman. A tinman.                                                            Should I use the paraphrasing or your own words in the middle? I ask.   USE THE PARAF  (he stops spelling.  I think it’s a PH, I say.) PHRASING  YOU DID A GOOD JOB.

The Broken Bandaid


I want to start a writing a new blog post.

I was living for three weeks in the worst place i have ever been. It showed me things that I never knew about people.. The people in this place wanted to look nice but they did not act nice. They ignored the poeple they were taking care of. They treated them like they were not valuable or interesting. I had a hard time thinking in an environment where I did not feel that people thought i was able to think. I feel that this home very much should not be allowed to care for people.

I feel sad when i think about the people who are still there. I wish there was something I could do to help them.
[Was there anything good that you feel you learned from having this sad experience?] I think that there is a lot to learn from people who are doing things badly. I hope to be part of the solution.

Home Again

Note: this post is shown as written, titled, and edited by Owen Simons. He chose how the photos should look, helping to design the first one.