The Broken Bandaid

1028191501

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.

1021191905a
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?

1016191356.jpg
[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.
1011191411c-1.jpg

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.

Learning to Dance

0617190731
Fetal Movement by Gillian Bedford

It’s one thing to want communication for your child. It’s another to do what is required to allow communication to take place.

Let’s not sugar coat this. Most of us get impatient with people who require special work to know, or care for, or listen to. Our eyes glaze over, and we begin to think what we might be doing, elsewhere, when a friend take too much time or too many words.  I long to share with the world what Owen, Edward, and I have learned about supporting communication for nonverbal people. Especially with those now sitting in silence, or unable to make their language say what they want it to. But the truth is that facilitating communication is quite difficult. The theory is simple, the practice arduous. How many will have time, energy, patience to let someone speak who isn’t speaking on his own?

So as much as I wish for Owen a community of fellow typers, and for the nonspeaking folks I see everywhere to have access to this method, I have to wonder how many will be granted these tools to scale the barriers that stand in their way? Will families have time and energy to help their child/brother/sister speak? Will other people slow down their lives to wait for those words to journey down misfiring neurons and muscles, down uncooperative arms and fingers, to the paperboard or the laptop screen? If a person with autism turns away, if they look like they have nothing to say, will family or caregivers go after them to make sure that body movements are representing real feelings?

Owen described recently that when he want to run towards something, his body runs away from it. Ido Kedar describes the same thing (Ido in Autismland). How many of our young people with autism are misread this way every day? How many are punished in a hundred ways, lost opportunities, misunderstood choices, a life of constant frustration, because of their disordered, chaotic movements? We earthlings read bodies to understand people, and we believe what we see. Even when we know better.

Writing with Owen looks like this: it’s messy – lots of interruptions. It’s hard – for both of us. It’s slow. And it’s absolutely beautiful. There are Owen’s thoughts and ideas, his words, typed out, bit by bit, onto the tablet screen. Is there influence, depending on who supports him? I imagine there is. Isn’t there always influence? Owen is new to writing, he is vulnerable. Learning to support a typer is technically easy; the difficulty is all in the ego department. As a communication partner or support, you must learn to keep your opinions, your impatience, your expectation and assumptions about what’s coming down the communication pipeline,  your excitement even, to yourself. You are helping communication to happen, but the communicator isn’t you.

What makes me a good support for my son is that I am a highly intuitive person, and I have been reading him for meaning (often incorrectly) all his life. And I love it – I get enormous joy from hearing what he writes. I love his insights. But what makes me good is also what makes me dangerous. I must not guess, I must not assume based on my intuition. Being a communication partner winds up basically a spiritual practice: letting go control, in so many ways.

Do I have the chops for it? Will I allow resentment about what I could be doing (like my own writing) to spill into the energy between Owen and me? Will I respond to the siren call of impatience, the longing for Owen  to complete project, to come out my mouth? Even percolating in my brain, my anger, frustration, impatience, desire to control will shut him down (not entirely, but it sure doesn’t help).

And it isn’t simple to know where these boundaries lie. I imagine they are different with every person who types to communicate. But part of my job for Owen is to help him get  his body to table, while still allowing him to chose not to be there. I don’t want to drag him there. But if he types that he wants to write, I believe THAT, and not what I SEE. I am also learning to see his attempts. Owen tells us how hard he is trying, all the time, to go where he wants to go, to not grab what isn’t his.  So I speak encouragingly. I go find him. I tug on his clothing gently. Or I sit at the table and wait, believing in him, while he convinces his body inch by inch to get there. I do what seems to work for him. On the good days, I remember all this.

I love writing with my son. Even though the bitchy, mouthy, impatient side of me gets in our way, and Owen’s dark moods don’t help, watching another writer begin to express himself gives me enormous joy. So yes, praise God, I believe I can learn to have the chops.  And I am able to, as well as willing to, give my time. Owen will need other supports though — this is his first step. I remind myself that Helen Keller required a support to live and survive and communicate to the outside world. Owen will require these supports too.

Wonderfully, Owen’s personal support and his siblings have put real energy into learning to listen to and to support their brother’s communication too. The more people Owen works with (learns to be facilitated by) the better, to establish his own voice and improve his confidence and skills. 

It troubles me the inaccessibility of these tools. Once again the number of dollars in a person’s pocket seem to dictate the quality of their life, to the extent of having a voice. But I remind myself that the only reason that we know about Helen Keller today is because her parents were wealthy enough to go to the ends of the earth, looking for some kind of help for their daughter. I have thought of them, and of Helen and Annie Sullivan, so many times over these 25 years of our searching.  Their means provided Helen a one-to-one support and so a voice for her entire life, rather than sitting in a dark corner. And because it happened for Helen Keller, eventually it happened for more blind children.  Ido Kedar, and Matteo Musso, and Owen Simons are paving the way for others.

0423191816b_HDR

 

Plastic Man

0530192008

Study of the world about me – as well as that between my ears –  convinces me that we have no idea the extent to which we evaluate humans based on how they look. We make assumptions all the time that outsides of a person (physique, accent,  behaviors) accurately reveal their insides.  What that person wants. How smart that person is. Who that person is, essentially.

Owen is here to remind us of how little we actually know, of even the most basic kind of knowing, about him, or possibly anyone else.

Plastic

i am an autistic person who loves plastic. the fact is that the plastic loves me.  i actually hate playing with plastic.  but I have no ability to stop my hands.  i think that kind of stinks.  you think you know who I am.  but the fact is that that is not the real me.  the real me is buried under all the behaviors.  just remember that the next time you see me.

i believe i will overcome the obsession. i will no longer be plastic man.

January 2019

0505191740d

Owen wrote this in response to a call for articles on the topic of sensory experience. It was published in the volume 25, Spring 2019 edition of The Communicator, a publication of the Autism National Committee.  A few corrections were made of errors caused by involuntary moments, and spaces were added between sentences for clarity, otherwise it is as originally typed by the author, using supported communication. In supported communication the partner resists movements by the typer, and this resistance and emotional support allows a person with movement challenges to focus his movement and get his words down. For Owen to generate a capital letter requires a three step process with caps lock. He doesn’t always bother with them. Getting his body to sit still, and his hand to follow the direction of his mind is more important, most of the time.