Pica Hell by Owen Simons

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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

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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.

[Grin]

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…     (Medicinenet.com)

 

 

 

 

Up on the Roof

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Photo credit: donyc.com

“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.

NO  I WISH THERE WAS ANOTHER WAY I COULD EXPRESS MYSELF Owen tells me.

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

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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.

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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.
WEGS

Warrior Mother or Other Mother?

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[resent w apologies for yesterday’s transmission errors]
I got hailed as a “Warrior Mom” not long ago, by a woman whom I feel really deserves that honor. Lately I have been meeting more and more of them. Mothers who leave no stone unturned, who cut through walls of academic bramble, who start their own group homes, who search to find or who create the things that will make that difference, to improve life for their son or daughter — these are Warrior Moms in the autism and special needs community.

Only, in real life, mothers tire. Mothers are human, and as such they get impatient, and angry — they wear out. They bleed. And they can crack.

About two weeks ago, on a Monday morning I found myself falling hard into an emotional abyss for the third time in six weeks. I could tell I needed help. I had been feeling myself beginning to crumble for months. I stood in the kitchen making Owen’s breakfast sobbing and thought of people I could call. Any of them would have been a good idea. But I didn’t call. In the weeks before this I cancelled three therapist appointments. Why? I don’t know, it’s illogical. I felt like talking could not help me. But I knew I needed help.

I need medicine, I thought that Monday, I need to see my doctor. But I just cried. On this morning it felt like my husband was uninterested and unavailable to Owen and me, that I was alone in a job that was too big and too heavy. So, the MOST logical person to reach out to, my best friend and husband, was the last one I wanted to see. The idea of climbing into our tub and slicing open a vein once again suggested itself as the only way to find peace; on this morning, for the first time, there was an idea in my head that this was really the inevitable choice.
And yet, had you seen me the week before this, I had seemed very well indeed — in fact, super. A superwoman. I had amazed myself. Why did I seem to need so little sleep? I knew I was tired, yet I kept overriding my fatigue. Alll week while Edward was in Dallas I took Owen to appointments, washed clothes, cooked, and got some writing time in on the sides. I stayed up late and got up early. I was able to mostly be really patient with Owen, too. This amazed me. I was desperate for social life by the time Edward came home, and triple booked myself with supportive appointments that I couldn’t keep. Edward was frustrated with me, and very tired from his trip. But by naptime Sunday afternoon instead of sleep ideas for future projects exploded in my brain — I couldn’t write them down fast enough.

And when Owen’s MNRI therapist arrived Monday morning, to find me a sobbing, falling apart, she did what she had to do in that situation. I know that she called the authorities to our home out of love for us, to force our hand, to help us find a better way to manage our lives. Even though it didn’t feel that way at first. As my son’s therapist she had an obligation to do so. She had seen how exhausted I was, and she had personal experience with suicide.

The learning curve for what I have been trying to provide for Owen is a steep one. Nothing in my life has ever been as difficult as the walk we have with Owen now, trying to help him claim a life for himself in an environment of academic skepticism and ignorance. Trying to build a scaffold of supports without any training in how to do that, in a general environment that does not presume competence for those with strange behaviors, but rather the opposite. The most dangerous people to Owen, I have found, are those who claim, “Oh I know all about autism…”

I recognize that this post is shocking to read. Please understand that I am allowing this view into very private matter in order to help others who may also be suffering. I was taught there are no dumb questions. I am saying it exactly because it makes me cringe to do so. Because Warrior Moms do not act like this. A warrior mom would never be confused, lose her way, or grow impatient with the very one she went to help. She would never terrify her own beloved child with self-destructive thoughts or words. A Warrior Mom would never need to have her child removed from the house by Adult Protective Services…

Because Warrior Moms do not act like this. A warrior mom would never be confused, lose her way, or grow impatient with the very one she went to help. She would never terrify her own beloved child with self-destructive thoughts or words. A Warrior Mom would never need to have her child removed from the house by Adult Protective Services…

It has been a very uncomfortable experience, having our home and privacy invaded, trying to understand another way to do what I was trying to do, but with help from strangers. But it is a measure of how truly exhausted I had become that it was also a relief. A relief to let go of the care of Owen. To sit still in the rocking chair and read and write. To sleep. A relief to get medicine and a psychiatric evaluation ” bipolar type 2.” Sometimes, the things we dread are the best things that could have happened to us. Like falling apart, and having strangers evaluate you. I really dislike the idea of strangers caring for Owen, especially in our home. But I see that that will be our way, going forward. I have to save my energy, if allow larger goals are to be reached. Sometimes we don’t know what we need; sometimes the “seeing” can be blind, sometimes those with hearing can be deaf. Sometimes we just don’t know where to go for help.
Sometimes moms and dads can crack. And they can be helped. And they can heal.
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Warrior Mother – Or Other Mother?

I got hailed as a “Warrior Mom” not long ago, by a woman whom I feel really deserves that honor. Lately I have been meeting more and more of them. Mothers who leave no stone unturned, who cut through walls of academic bramble, who start their own group homes, who search to find or who create the things that will make that difference, to improve life for their son or daughter — these are Warrior Moms in the autism and special needs community.

Only, in real life, mothers tire. Mothers are human, and as such they get impatient, and angry — they wear out. They bleed. And they can crack.

About two weeks ago, on a Monday morning I found myself falling hard into an emotional abyss for the third time in six weeks. I could tell I needed help. I had been feeling myself beginning to crumble for months. I stood in the kitchen making Owen’s breakfast sobbing and thought of people I could call. Any of them would have been a good idea. But I didn’t call. In the weeks before this I cancelled three therapist appointments. Why? I don’t know, it’s illogical. I felt like talking could not help me. But I knew I needed help.

I need medicine, I thought that Monday, I need to see my doctor. But I just cried. On this morning it felt like my husband was uninterested and unavailable to Owen and me, that I was alone in a job that was too big and too heavy. So, the MOST logical person to reach out to, my best friend and husband, was the last one I wanted to see. The idea of climbing into our tub and slicing open a vein once again suggested itself as the only way to find peace; on this morning, for the first time, there was an idea in my head that this was really the inevitable choice.
And yet, had you seen me the week before this, I had seemed very well indeed — in fact, super. A superwoman. I had amazed myself. Why did I seem to need so little sleep? I knew I was tired, yet I kept overriding my fatigue. Alll week while Edward was in Dallas I took Owen to appointments, washed clothes, cooked, and got some writing time in on the sides. I stayed up late and got up early. I was able to mostly be really patient with Owen, too. This amazed me. I was desperate for social life by the time Edward came home, and triple booked myself with supportive appointments that I couldn’t keep. Edward was frustrated with me, and very tired from his trip. But by naptime Sunday afternoon instead of sleep ideas for future projects exploded in my brain — I couldn’t write them down fast enough.

And when Owen’s MNRI therapist arrived Monday morning, to find me a sobbing, falling apart, she did what she had to do in that situation. I know that she called the authorities to our home out of love for us, to force our hand, to help us find a better way to manage our lives. Even though it didn’t feel that way at first. As my son’s therapist she had an obligation to do so. She had seen how exhausted I was, and she had personal experience with suicide.

The learning curve for what I have been trying to provide for Owen is a steep one. Nothing in my life has ever been as difficult as the walk we have with Owen now, trying to help him claim a life for himself in an environment of academic skepticism and ignorance. Trying to build a scaffold of supports without any training in how to do that, in a general environment that does not presume competence for those with strange behaviors, but rather the opposite. The most dangerous people to Owen, I have found, are those who claim, “Oh I know all about autism…”

I recognize that this post is shocking to read. Please understand that I am allowing this view into very private matter in order to help others who may also be suffering. I was taught there are no dumb questions. I am saying it exactly because it makes me cringe to do so. Because Warrior Moms do not act like this. A warrior mom would never be confused, lose her way, or grow impatient with the very one she went to help. She would never terrify her own beloved child with self-destructive thoughts or words. A Warrior Mom would never need to have her child removed from the house by Adult Protective Services…

Because Warrior Moms do not act like this. A warrior mom would never be confused, lose her way, or grow impatient with the very one she went to help. She would never terrify her own beloved child with self-destructive thoughts or words. A Warrior Mom would never need to have her child removed from the house by Adult Protective Services…

It has been a very uncomfortable experience, having our home and privacy invaded, trying to understand another way to do what I was trying to do, but with help from strangers. But it is a measure of how truly exhausted I had become that it was also a relief. A relief to let go of the care of Owen. To sit still in the rocking chair and read and write. To sleep. A relief to get medicine and a psychiatric evaluation ” bipolar type 2.” Sometimes, the things we dread are the best things that could have happened to us. Like falling apart, and having strangers evaluate you. I really dislike the idea of strangers caring for Owen, especially in our home. But I see that that will be our way, going forward. I have to save my energy, if allow larger goals are to be reached. Sometimes we don’t know what we need; sometimes the “seeing” can be blind, sometimes those with hearing can be deaf. Sometimes we just don’t know where to go for help.
Sometimes moms and dads can crack. And they can be helped. And they can heal.

my sister’s. wedding

any one can get married, but it takes a musician. to evenually marry everyone.
i mean that the musician is the conductor of. the whole thing. the music is the glue that holds the service together.

freya and keir got married last sunday. freya was beautiful please know that she made her dress. keir was handsome. they are beautiful together and have my love.

Shitty-Wonderful

photo of yellow flowers in a glass vase next to a window
Photo by Kristina Paukshtite on Pexels.com

The fact is that although you and I are co-writing this blog, Owen, not everything I have to say is about you. So forgive me, but I gotta whine. You can put your two cents in later, ok?

I began texting this thought to some friends, but this thought is too big for texting. I have been chewing on it for a while: motherhood is a shitty-wonderful job. Okay, it’s one of them. One of many.

I tried to explain my thinking to parent friends in a letter-I-never-sent, written by candlelight tubside at the end of a long day. But I wasn’t sure if my friends would understand — and now you can all wonder whether this post was the letter originally meant for you. And it was. All of you. That letter, it turns out was the first draft of a brewing blog post. If I had only known, I wrote, how gut-wrenching this job of parenting was to be, I would have been way to chicken to do it.

So I am glad I didn’t know.

For instance, raising babies and riding the highs and lows in that cozy relationship nest you build together, longing for and delighting in each sign of Growth and Maturity! — only to realize the end game is being left. See ya. Empty nest is not a joke. And for those parents whose kids stay local: You. Have. No. Idea. So don’t talk to me.

And when parenting morphs into a new and different kind of support role: wow. Watching your young adult work to integrate into a world that misunderstands, mis-judges or ignores him or her, listening while they voice their pain — their RAGE — while you are giving your all, witnessing while the voiceless reach out but go unheard by family, that is the like being stretched on the wrack.

And although I doubt it is standard protocol for human agony, semi-sweet chocolate chips are called for. (Never mind the carob. Pure, organic chocolate morsels) Can’t help mocking myself. It helps me keep moving on. So, a 1/2 bag of chocolate chips on the sly and a mommy-time-out later, I am (over) charged and (if feeling ill) ready to go. Back into the trenches.

Mothering is shitty-wonderful I say. Parenting is what I mean, though.

I was so proud earlier this summer, watching our son leave the dinner table with his tantruming baby daughter. He correctly understood what that tantrum was communicating. He listened to her. I watched him sit with the baby on the ground at the backyard fire pit, allowing her to ogle the blazing fire that she so desperately wanted to see, but not to touch it. He was hungry for his supper, and (I suspect) worn out with dealing her needs at that moment. But he rose above that, and above any opinions that any grandparents at the table might have had about her behavior or his choice of how to handle it. He followed his gut and/or his convictions. Then they came back to the table and ate supper. I know at his age I would not have been wise enough to see the value in doing what he did. But I could see it when he did it. It was a teaching for me. It is so good to be taught. Shitty but wonderful, in fact. To quote Glennon Merton, “Brutal and beautiful. Brutiful.”

My daughter called last night. She took a while to get to it, but she was able to say a very hard thing. Please don’t evaluate our relationship based on how often I call you. Or how often I don’t call you. I just don’t call people, she went on, I probably call you more often than other people. Well, ok, I was able to say, I just need to find some people who want to connect more often than once a month. That’s all.

Valuable. Satisfying. I hope she felt the release in saying it that I felt I hearing her words. You are more to me than some numerical extrapolation of our phone minutes. Please don’t impose that evaluation on me – or us.

Our children are our teachers. And our forebears also keep on teaching us long after they are gone. Too late I understand some of the pain I caused my dad. Raising a young adult with special nees is difficult, still parenting as grandchildren start arriving is much more difficult. I judged my father harshly for his apparent lack of interest. I longed for him to coo and to cuddle, to show his interest in my children in certain visible ways that would make up for the absence of my mother, who had died many years before. Now, life has provided that I shall know by experience how it is to grandparent while continuing to parent. The truth of course is it’s shitty-wonderful. I am thrilled to be a grandma – I just don’t know if I will have the energy to be any good at it.

But the upshot of this chocolate-infused moan, is…I guess more wonderful than shitty. Tough as things can get, I have to confess that I would never take back even the most difficult parts of my journey so far. Because each of those (after a lot of digestion) has resulted in my greatest growth. Deeper insight. And, yeah, each episode hurts like hell. The rack.

Which is my read of what Jesus demonstrated in permitting his cruxifixction, if you will pardon a religious digression. Whether you see Jesus as a guy, or as God-energy in a human form, the teaching seems the same. Everything I speak to you is a parable, he said. You will be crucified, to be re-born. Let go, and be taught – let your ego die, and live. Roses can grow great in manure, as long as it’s well-composted.

Yeah. I get it. More than that, I feel it. Ouch! Which gives me hope.

Your two cents, Owen? Is this one ok?

yeah. i like it. i think this one is ready to go.