i am moving to bryn athyn pennsylvannia this summer. i feel happy to go. but it is also very stressful packing up uoilli everything. i hope it is over soon.
i think that the new house would be perfect for my parents because it is smaller. it is not home but it is lightt inside and very good for having people over for parties.
i hoped we could move in soon but not everything about this house is perfect for us. we will be living in temporary housing until it is ready for us. it will just be harrrrd not to have finished the house beffore we go from maryland.
i am going because i need a better life and friends. that is the thing to remember.
Owen and I are each working on posts for the blog, amidst the confusion of a crazy summer. But meantime, this just arrived in my inbox and I had to share it with you all. From the Peace of Heart Community blog, written by my dear friend Amy Groschell. Amy writes here on a topic that has been in my heart all summer, and I couldn’t have said it any better. With love, dear readers —
“Any dance of celebration must weave both the sorrows and the blessings into a joyful step…To heal is to let the Holy Spirit call me to dance, to believe again, even amid my pain, that God will orchestrate and guide my life.” Henri J.M. Nouwen
BLOG: Joy & Pain, the dance of life
I am convinced that behind every belief system lies either a private pain or a fear of pain and suffering. Today’s current climate couldn’t be more reflective of this. While it is true that a virus of little known magnitude is sweeping through our world, it is also true that many others have gone before it. What makes our response to this one so different? I would propose it is our ability to name it and, to some degree, avoid it unlike the life-altering diagnosis of autism or cancer as it seems our fear of infectious disease is exponentially greater than diseases of unknown etiology. The human mind has a great desire to know what it is dealing with it we can find a solution to it. In some ways, the ability to name it (via testing) has given it power. In addition to power, the ability to name it has provoked fear. Fear of catching it, fear of a loved one catching it, or fear of what will happen if one does catch it. Often, fear of the unknown is greater than the unknown’s reality. Somewhere in America we missed the memo that suffering is a part of this world. It’s part of the experience that makes us human. Those who have suffered the greatest often are those most compassionate to others around them experiencing hardship. As one who has had a fair share of suffering, I don’t mean to sound insensitive. At one point we will all undergo something very hard. Something that seems like it will overtake us. Some experience that sends us into deep waters. What will our response be? While we cannot control the response of others, we can control our own. Many who have traveled to 3rd world countries notice immediately the joy and happiness of those with much less. They don’t have shoes, insurance or access to immediate medical care or medications yet find joy in the smallest things. How can this be? I believe the answer is simple: they know joy and sorrow are intricately connected. They know them to be part of the same human experience. I lived an idyllic life as a child. Autism hit me as a young mother: twice. I became fearful of “what was next”. When the dreaded next thing happened, losing my husband and father at the same moment, I knew it was impossible to avoid suffering. I began to see life less as something I controlled and more as something I navigated. Essential to me was giving space for God to move. The more I tried to have control, the less space He had. The result under those conditions were always less than desirable. Reducing my expectations gave way for scenarios I could never have dreamed of.
The question remains, what is our response to suffering or the fear of it? Do we behave recklessly or in blatant disregard of others? No. We dig deep into our beliefs systems about our bodies, how our immune systems are designed to work and how we can support them, and we make other lifestyle changes that support our health. We seek medical attention if we do get sick. We reduce our exposure to media and social media. We check in on our family and neighbors and make sure we help meet any unmet needs they have. We do not stand as judge of the beliefs of others knowing they have a secret pain or fear that they alone must navigate. We recognize their journey as their own. We trust that God ultimately is in control of all things. We use strategies like prayer and meditation, and we follow experts who give us tools that bring us peace. “…In this world you will have trouble. But take heart! I have overcome the world.” (John 16:33b)
Amy Groshell, Co-Founder, Peace of Heart Community
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.
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]
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 unrestrictedinterest.com or Amazon.
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.
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… (Medicinenet.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
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.
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.
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.
[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.