Today was a remarkable day. Today I learned that Owen reads words. Today Owen typed sentences to tell about his thoughts and feelings.
If you watched the process by which these words were brought to birth, you would very likely be skeptical. And I would understand your skepticism. I felt divided in half for much of the day, both weeping as I listened to my son’s mind emerging, and yet… skeptical. Incredulous.
At the beginning of learning typing to communicate, the support person must hold the typer’s hand, and no one looking at that process could tell who was doing what, esspecially with my son’s wriggling, twisting, grabbing for things and having to be redirected, again and again to focus, to come back to it, to finish telling us what he wanted to say.
Rome wasn’t built in a day. We are asking a person who has always been defined by his behaviors, by his outside, by his dis-ability, to be now reveal to us his abilities and to be defined by what is inside his head and his heart. It’s a big ask. It will take time.
But watch videos for yourself. I have seen now (at Marilyn’s presentation tonight) how the children, teens, adults who have been typing to speak for a long time do so with very little support. A hand at the shoulder, at the elbow.
Tomorrow Edward and I will have more lessons in talking with Owen. Learning the method. Baby steps. Don’t think too far into the future, just take “the very next step,” Marilyn says.
Actually, Marilyn is coming to teach me and Edward. She will be here with us today and tomorrow, watching and developing an understanding of Owen, and of each of his parents. How does Owen already communicate? How do we communicate with him? How can she invite him to reach out into a wider world of speaking? And how can she teach us how to continue this work with him? The beginning of speaking does not happen in a minute, for anyone.
The answers to these questions are what Marilyn must try to discover in these hours we have together, today and tomorrow.
The questions that haunt Owen’s mother and father are different. They wonder, Can this really be possible? What kind of understanding does their son really have? Could it be that his behaviors and his funny echoing speech hide an active, bored and frustrated 24 year old intelligence, as they have often thought? Can it really be possible that Owen’s mind can begin to wake up, to be born today as the words of others who type to communicate describe? Is this possibly all a hoax? Owen’s mom keeps thinking of Helen Keller…and Annie Sullivan.
We will see.
If you live locally you also can meet Marilyn. Tonight, at 7pm, she will talk about Assisted Communication methods and show footage of people for whom this has worked. Here is where to come to meet Marilyn Chadwick — you are all invited. Please be sure to share this invitation with anyone you know who has a nonverbal person in their lives.
An Evening with Marilyn Chadwick – 7pm Thursday May 17th
The Washington New Church – 11914 Progress Lane, Mitchellville, MD 20721
“Seeing people as intelligent is foundational to the method and to the assessment process. Treating people as intelligent is critical to setting the proper tone and approach to the invitation to communicate.”
Marilyn Chadwick, Facilitated Communication Manuel
Owen is re-aranging the woods. He hoists a sturdy fallen branch, then another, then another, until his arms are full of grubby logs with ragged bark, some under his armpits, some clutched to his chest. Then, at a whim it seems, he jettisons them, one! two! three! to rot elsewhere, farther down the trail. Our little caravan just gets walking smoothly again when Owen darts down off the path, jerking our poor bulldog abruptly backwards, to test a giant rotting log – – can he lift it?
“That’s too big Owen” I say. And he knows it, anyway, and settles for ripping off a handful of the satisfyingly crumbly, spongy interior instead. The dog strains forward, unwilling to abandon the walk he has waited for too long today. “No pull, Trum,” I say, to no particular purpose. The dog will keep pulling, and Owen will keep reaching for the logs that capture his attention.
Besides rotting logs, Owen seems especially drawn to wood partially obscured by leaves and forest floor, the most wet and muddy. He digs them out and clutches a couple to his chest, and I sigh inwardly. In a less patient moment, I hear myself kvetch. “No, Owen. Not the muddy one. I just washed that jacket. Why…?”
Whining “why” is to no purpose either. Who knows why?
I can’t imagine that Owen hears too much of my fussing. He has a job to do. He is on a mission. And since Owen on a mission is so much more fun than Owen in a state of fog, I can’t feel too unhappy about the mud on his shirt and coat.
Here he stops by another favorite : the splintering trunk of a tree, broken off in high winds. Owen grabs a huge splinter in the group that fans out jagged, and he twists and works it until the jag of wood rips free. Or it doesn’t. Never mind, he will be back to wrestle with it again. Eventually, it will give in. Those usually limp hands of his can be surprisingly strong. Insistent.
We have reached the bottom of the valley, and crossed the funny patched up wooden bridge over the stream there, allowing the dog to get a drink — well, I allowed it, taking the leash to give the dog’s neck a rest. Trumbull the bulldog is very helpful on these walks, straining forward as dogs will do, keeping Owen moving, but it isn’t much fun for him. Our old dog Rascal and Owen were more copacetic. They both meandered, putzing along, taking turns pulling each other. Rascal seemed to understand Owen – maybe it was because being a herding dog he understood the nature of his job.
Now the walking is more tiring as the path rises, until we can look down into the ravine covered in last year’s leaf fall. Owen moves slower. Or stops. His fatigue makes him go slower — but mine makes me want to push forward, up the hill, and get this walk over with. I want to be already home and cooking supper – even better sitting down and eating it. Owen’s body going slow, in front of me on the path, blocking forward movement suddenly, overwhelmingly, presents the picture of how the care of him is consuming my life right now, draining me, exhausting me, preventing me from doing what I want to do. My thoughts turn suicidal and murderous, and I step off the path to give myself a time-out on a smooth fallen trunk. Tears and sobs shift the ugly state of mind. The sun peeks across into my eyes from behind striated western clouds, through the tiny green foliage of many beech trees. Owen presents me with a rotten log. To be helpful? To see if I will be mad at him for picking up more muddy rotten wood? Who knows. I can only nod at him, waiting for the sadness to process through me, and leave me clear again.
And Owen strides through the woods, back and forth between the trees, checking trunks, investigating under logs, re-arranging the forest to his own mysterious specs.
You haven’t heard from us for a while. We have been submerged. Health protocols of Dr. Mark Hyman. Owen has been dragged along with his mother and father into a new world of vegetable and fruit smoothies, serious water consumption, and relaxing Epsom salts and baking soda baths.
Generally speaking, over the years anything that one member of the Simons family has explored has impacted the rest of us. Things I tried out for Owen’s health always tended to trickle over into the way I cared for the other kids, to Bronwyn and Freya’s annoyance. Wellness initiatives I began for Oskar or Edward have ended up changing how I eat, and helping me. The positive thinking philosophy The Secret that Scotty brought home with him was usefully deployed for parental sanity. And when Daric left Rich Dad Poor Dad by financial guru Robert Kiyosaki lying around the house, it resulted in our garage apartment and a new revenue stream. We are just those kind of people — not as skeptical as some – willing to go boldly into new protocols. And drag everyone else along for the ride.
Owen is happy to have PGX packets added to his ever expanding collection, and he has taken to salads with great interest. Smoothies and hot baths are always fun. But detoxing isn’t always easy. And it isn’t always pretty.
Detoxing Owen is uphill work. Just for starters, remember his love of plastic and tubbing. Turns out that not only is a nice hot bath filled with plastic not a brilliant idea for detoxing a body (since the warm wet very likely accelerates the release of chemical substances by one, and their absorption by the other), but turns out the tub itself could be releasing lead. Yes, lead. I assumed a porcelain tub was dah bomb for chemical stability — I had been worried about our acrylic tub! For whatever reason, some makers of cast iron porcelain tubs incorporate lead into their manufacturing process. Madness. Idiocy! So now you know. Aren’t you glad? Another thing to worry about. There are kits that can test your tub for it. Maybe I will buy a lead testing kit. Maybe I don’t want to know.
It turns out that the real uphill work of detoxing may not be physical. Even getting a sluggish bowel functioning is easier than decreasing STRESS. Or, to be more accurate, moving of bowels seems to be Owen’s particular detoxing challenge, but removal of toxic levels of psychic stress and worry from my life/mind is my own. How much does a breast cancer survivor want to know about the possibilities for toxicity in the environment? Or how many more wonderful plant products should be consumed to boost the body’s ability to fight cancer? Whether the concern is improving mental function (and that means bowel function, they are deeply connected), or fending off diabetes, or beating cancer’s recurrence, a person can only eat so many kale salads and veggie smoothies, or swallow so many supplements. My research and reflection over the past weeks shows me one thing: the most toxic thing really has to be anxiety — that is to say stress, and its buddies fear, tension, and anger.
Well, Owen has me beat for coping with stress. He does not do stress, as far as I know. Maybe I cause him stress. But at stressful moments, his natural reaction is to laugh. And aggravating as it is for me in that moment, laughter has to be a far healthier reaction to the poop of life than anger and frustration.
Last week I caught Owen listening to French President Emmanuel Macron. I had been busy finishing dinner and getting it to the table when I looked up to see Owen on pause, all movement stopped. He was listening. His whole face lit up into a grin. Of course I stopped everything too, to try to hear what he was hearing. President Macron was speaking English with a heavy French accent on the National Public Radio news. As far as I could tell this cracked Owen up. His eyes twinkled, his face grew bright, his laugh was infectious. Owen has always loved accents. And here was this guy, sounding like Lumiere from Beauty and the Beast, right in the middle of Mom’s radio news! What a hoot!
I don’t think Owen is Nationalistic, but his uses as a diplomat for peace could be limited to his capacity for infectious laughter. Maybe that would be enough. It is very healing. And it is when I sit down to write about my life with Owen that I most benefit from the laughing, able then in reflection to see what is delightful or life-giving in what was just maddening or aggravating before. So maybe the best detoxing for me is here, at the keyboard, searching out the words to describe the essence of my life with Owen for you.
March was a travelin’ month for Owen this year. Is he lucky or put upon? I’m not sure. Traveling is exciting and Owen loves doing stuff, but it is confusing and disorienting to be sleeping and eating in new spaces, at different times, in different air and water, and to have none of the same schedule. And to not know why. But Edward and I had decided to just take him along with us to check up on his G’mom in Florida, so two weeks after our Colorado adventure we found ourselves on an airplane once again, headed for Treasure Island.
Standing folded into the airplane lavatory to assist Owen there (a Rubeck’s Cube kind of experience) I did feel like we deserved some kind of ingenuity award. It is remarkable what can be done a tiny space. One thing about Owen – he has a sense of humor and appreciates the absurd.
Florida gave us both sun and rain,
warm and cold — andblustery!
Our blustery day walk was a highlight of the trip. Owen seemed pretty amused to be pushed down the beach by the bossy wind, which blew his collecting bag out at right angles to his body, spinning and spinning it round his fingers.
After Owen had added a certain amount of additional plastic bits to the marine environment of the Gulf, he and I took a rainy day drive to Jacksonville to see Peace of Heart Community Farm. During our eight plus round trip that day, we rolled through a fascinating variety of Floridian interstates, farm fields, and back roads thanks to the wonders of GPS navigating. Owen ate way too many nuts, and was heartily sick of the car by the end of that day. But we did get to witness a miracle in progress — the beginning stages of an assisted living community with a farm built in, a home that will also provide a life’s purpose and a connection to the larger community through the vegetables the residents and a their support staff (some family, some volunteer, some hired) will grow.
Peace of Heart Community Farm is the brainchild of Amy and Howard Groschell. Their daughter Gentry has autism. Years ago, Gentry and Owen attended the same clinic in Atlanta for a summer of saunas. The Groschells dreamed up and are building this beautiful home where Gentry can live and be cared for into old age, along with five other young women with autism. It has not been smooth sailing, Amy told me, it’s a concept in progress. But the garden is up and running, with a local farmer’s market presence, and some of the girls already help out.
Gentry’s paintings line the walls of the house. After years of trying to heal her by bio-medical means, Amy says it was learning two methods of communication that made the biggest change in Gentry’s life: painting, and assisted typing.
She paints her large vibrant canvases with the assistance of her stepdad Howard. This and the method of using a keyboard with assistance allows Gentry to express herself, and have made huge difference in Gentry’s happiness, Amy told me. She shared with me the name of the woman (Marilyn Chadwick) who taught them how to use the keyboard technique. I came away from our long drive to Jacksonville full of ideas – inspired and hopeful.
A vacation rich in experiences! part lounging in the sun, part touring, part drinking in new ideas— oh yeah and part running after Owen and trying to keep him out of Gmom’s stuff…
It was a remarkable trip, but we were tired and ready to get home — to our own dear, cold, recently-snowed-on Maryland to digest it all.
Owen traveled to COLORADO by plane, and stayed just down the street from his brother Scott, sister in law Meg and baby niece Marlee. I was anxious about how disruptive the trip could be on Owen and Owen on the trip, but unlike the last time Owen went to Colorado, this time no police were called in to locate him.. He did not go for a solo tour of the Denver neighborhood. He seemed agreeable to the whole trip.
I know he liked our outing to Red Rocks—!
(Two determined men)
It was VERY fun to climb up — and slip over (!!) — and squelch through — and descend down the Red Rocks of Colorado — all the way down to the museum and amphitheater on the other side. Whew! What a memorable adventure.
But it was pretty nice to have Oskar climb back up and over and down and get the car, to pick us up! And take us home…
Was it just a week ago that Owen walked with Kathie in the snow on a wintry Wednesday afternoon? Then we had the 70s and were out cleaning up garden beds, before the temperature dropped us down again. Today the wind howls violently, hurling patio furniture across the yard.
Lately I have been thinking about Love. The hot and cold of it. The way the warmth you feel in any given moment for someone does not have that much to do with how much you actually care about them. Like crazy weather, our emotions warm and cool, overheat, freeze, storm, or grow balmy, dependent on how much we have eaten, or slept, or what our hormones might be doing that day.
But Actual Love is something larger than the weather of our emotional landscape. I believe it’s something human beings receive, if we want to, and through long practice of bending, behaving nicer than we feel. I have seen nothing in a short 54 years to indicate that we humans know how to Love on our own. What I am describing is too pure for us to invent. We get pretty constantly distracted in self-interest, even on the way to Loving. It contaminates everything we do. At least that’s my experience, both giving and receiving. And yet we humans experience genuine, not self-interested love for someone else when we persevere caring for him or her kindly, through all the highs and lows of the emo river.
And while I am still just persevering, if I change Owen’s bed from smelly to sweet smelling sheets, or run him a warm bath to sooth his itchy skin, does he really care if I don’t actually feel super loving doing it? The doing is good. The bed and bath are still welcome.
And as I strove against rage and desire to do bodily harm in February, dealing with an unexpected Owen messes at the end of the day, the writing of these words was called into action. No – I don’t have to feel loving to be Loving. I can remonstrate, even raise my voice at my son, (though it’s doubtful how much good a raised voice does). The act of not doing him harm is LOVING him. Sometimes that is as loving as I am capable of being, in that moment. And that’s a comfort to know, when you are sitting across the table from your child for supper, to give yourself some extra space from him.
So much going on in February (even outside my churning brain) showcased the ebb and flow of human emotion, contrasted with the steadiness of Actual Love. On the world stage, the struggles and triumphs, and struggles and losses of the Olympic games. The grief, pain, loss and anger associated with the shooting deaths of high school students and teachers in Parkland, Florida — will positive things grow out of the horrible violence and subsequent anger? What does Actual Love look like here?
The February passing of an old friend and mentor of mine, Dr. Jane Williams-Hogan, deepened my reflections on this topic. Jane was a highly intellectual woman, who also seemed to have an enormous capacity to care. I attended her memorial service, at which she was remembered for her tireless work with numerous students who all benefitted from her extra support to help them grow and flourish in (and graduate from) academia. Sometimes Actual Loving must start by simply seeing people. Seeing the unique strengths latent in each one. Jane sat at a lunch party once, years ago, with aa youn Owen and me. I remember her calm manner with him. I remember that she spoke directly to him. I remember what a relief this was, how unusual it felt at that time of my life.
Maybe we would all love to manifest Professor Williams-Hogan’s warmth and patience. But it seems we show Love differently.
My father’s birthday falls after Valentines Day, and he was much in my thoughts all month. How has his life enriched, since last we knew him? My father worked with Dr. Williams-Hogan at Bryn Athyn College, but while Jane was not easily embarrassed by out-of-the-groove people, this was not my father’s strength. Maybe this was part of his generation, which associated shame with being mentally atypical, or challenged, or slow. Maybe he was affected by long-term exposure to collegiate prejudice for the intellectual. Whatever the reason, although he was a warm-hearted and very fair man, mental and physical deformities disturbed him. Despite his exposure to a mentally challenged father, and son, and grandson, my dad did not develop ease with the special needs population. He valued mental agility, wordplay, urbane discourse, and other ways of being, knowing, communicating. One of my daughters has said she feels her grandfather did not like or love Owen.
Although I know this is not true, I know what she is referencing. Dad was a liberal thinker who embraced reforms that would care for all all underprivileged – he was never rude, or unkind. Just embarrassed perhaps, maybe uncertain. I know he worried for me, having the burden of care of such a person as Owen. He never seemed able to see the flip side – the joy, the beauty, the humor, or the peace that is also part of the world of Owen. He did not (yet) have Jane’s talent for not being embarrassed by difficult people.
My sister’s family, who are avid videographers, have very amusing footage of a young Owen standing behind Grampa’s deck chair during a summer family reunion. Little Owen is massaging his grandpa’s curly hair, patting his face, and feeling his neck with moist invasive little hands. What inspired this show of interest? Grampa had been talking to Owen in his Donald Duck voice.
Now, I am not going to suggest that he looks comfortable in the video, crunched down in his deck chair, and I know the whole thing was instigated by my step-mom, trying to help Dad make a connection with his grandchildren. But this image : the uncomfortable grandpa tolerating a weird moment with his sticky, invasive little grandson, stays with me. I doubt my Dad was experiencing love in that moment. And yet, looking back upon it, that’s Love by my measure.