Owen and I are painting together in the Quarry Road Center, a special room in our house. We are “painting together” in the sense of dancing together, where one is the star and the other guy the prop. Being a good prop for Owen’s movements has been my study for three years now. The goal of the whole project is to work myself out of a job.
Owen has been claiming greater and greater control of his arm and fingers. When typing he now points his forefinger independently. And moves his arm forward with light resistive pressure under his elbow about 80% of the time.
But holding a brush for painting is another matter. Another neutral pathway? a much more complex set of movements? Or is it because he desperately wants to do it? His hand is limp, barely able to grasp the brush. The painting is interrupted by Owen’s random body movements, also by my grabbing up a painty communication card so he can spell the answers to my questions, so I can correctly understand what he is trying to make his body do. What color next? Where on the page? What kind of mark do you want? How wide a mark? A tedious process only better than not painting it all.
So around and around the room he eddies instead, trying to fight his way back to the paper tablet with his half finished painting on it. And I wait. He wraps and unwraps silky golden ribbon around a glass, around rock, plastic, wood, metal. His movements become only faster as my irritation with him grows.
Like Mozart’s father. Like every other sick parent out there. It doesn’t work. But it is real.
I am too invested, clearly. I want to see you paint, Owen. I want to see what color you will select. What direction you will take this new piece. I also want to feel that the sacrifice of my own time is justified by your production.
Yoga and deep breathing are my friends. Drop shoulders. Let go of control. Release the irritation. Live longer.
Regardless of his other issues Owen’s boundaries are too good to allow being guilted into anything. He will repel my physical “support” if I cross too far over the psychological space between us.
It is good, it is healthy, that Owen is irritated with me. Lately he is irritated all the time. He is lonely. He is constantly frustrated by his own impulsivity – by his lack of body control, his lack of autonomy, his lack of friendships. He is frustrated by his own frustration.
I am also slowly learning to recognize the boundaries between us. Owen is running Owens’ life, on the inside if not on the outside. If my son is unhappy, I don’t need to be unhappy. His life is his own. He is allowed to be eaten up by hated of it, or try to make of it the best he can.
When last we painted, something was different. Owen picked up the card because he had directions to give me. He picked up a tube of color because he really wanted to paint with it. And his grip on the brush was stronger. Purposeful moments. I hold my breath. A huge tiny step forward, as exciting as the painting he generated that afternoon.
A couple weeks later we are at an Art Museum. Owen’s body is full of dysregulated movement as we study massive canvasses by Salvador Dali. An average onlooker would never guess that he wants to be there. He pulls away, toward tiny scraps in the floor, as his dad and I grasp his backpack straps tightly to keep him standing still. The guards eyeball him, although kindly. They have been trained to be “autism friendly.” Still, it’s stressful.
Afterwards, as we sit all three exhausted at a cafe table, I check in. Did you like it? “Y” Which one did you like best? Owen grins. “Abe”. Ahhh.
“Gala Contemplating the Mediterranean Sea which at Twenty Meters Becomes the Portrait of Abraham Lincoln – Homage to Rothko.”
Never underestimate a young person with dysregulated body movement. I bet every one has an inner world painted in brilliant colors, that this world has yet to see.
Our new house looks like a real house finally. It doesnt have weiird bars in front any more. The stucco is on over the grey block. The gutters look ready to catch rain.
The floor inside is covered wood that smells like citrus because it was washed with benefect. It had lots of dirty walls and it has been washed over and over. The fireplace built from stones looks great. We are going to cook our turkey in its oven, this thanksgiving.
My bedroom looks good. I like it. I look out at the woods just like in Maryland which makes me both happy and sad. It will need lots of curtains it has big windows.
i feeellll hopeful that there really will not be any more moving. I really hate moving.
[One of several poems written this month about his favorite celebration…]
Ghosts going through the dark
Just flying around
Has a scary effect on everyone
On the ground
Get ready for spooks
You might be afraid
To walk down the street
Because witches serenade
Trick or treats yell the kids
As they run down street
Filling their bags
With candy too sweet
I love Halloween
The fun and the tricks
The decorations and costumes
The treats and the pics
You better be careful
You better watch out
Halloween is coming
Bring it full shout!
[Owen got his voice just before his 25th birthday, when his parents and he learned supported spelling and typing. His parents had been told told that he had the intelligence of a three year old. In fact, he knew how to read, to write, and to do math in his head — but was unable to reliably control his body to let the world know it. To find out more about this, you could read ” Ido in Autismland” by Ido Kedar. And, hopefully soon, you can read Wystan and Owen’s own book about their journey together out of darkness into understanding.]
The man sitting at the KOA picnic table put his slices into the toaster and depressed the handle. His amore was cooking up eggs and bacon in an electric teflon skillet. I smiled, and hurried by to get some sheets into the laundry before departure. We were breaking camp that morning outside Indianapolis, the last leg of our month long expedition, stopping in ten states and driving through eleven. Cooper’s Landing Campground, MO far off the beaten track, along the Missouri River was the winner (in spite of the flies), with the campground in Mackinaw, Michigan on the shore of Lake Huron a close second.
But I have no business smiling at a man hauling an electric toaster along camping — we were far from roughing it, in the Winnebago that we spontaneously purchased this June. We have a small bathroom, a kitchen with gas stove and a view, a generator to power our blender, and even (embarrassingly) AC. Owen’s bed is a loft that drops down over the driver’s seats, a nice distance from the queen size bed in the back.. It also carries a tent in the cargo space underneath for anyone wishing 1) a more legitimate nature experience, or more likely 2) a break from hours living with the Simonses as we joggle along.
Even with its comforts, life in a portable house requires a lot of figuring out. How to carry drinking water? (oh oh water filter leaking) How to cook dinner standing while Edward is driving? (brace your knees!) How to get supper going over a campfire? Can I dry bedding over the campfire? (maybe) Well, then can I dry laundry in the moving RV?? Can I wash laundry in a small tub and get it dry before bedtime in the bright Dakota sunshine??? (yes!!) Tedious tasks take on new glamour with the added spice of innovation.
When we contemplated a family vacation at great-grandpa Oscar’s cabins on Lake Kaubashine in northern Wisconsin, renting a camper seemed like a good plan. That would address the mold sensitivities that now hamper me. And it might feel more comfortable to Owen, we thought, to stay in the same bed. AND if we got a camper, we could extend the trip and go on to Colorado to see our granddaughters! But there was nary a camper to rent – all of America took to the open road this year. Further exploration and then we took a sudden dive, when we found by some miracle one Winnebago available to purchase on the lot at Fretz RV. Just one. The salesman assured me that we would have no trouble selling it again at the end of the season. But I don’t see that happening. I am attached to my tiny home on wheels. **!No Mold Yet!!** The bed is very comfortable.
Owen’s new sensitivity to airplane travel was another part of the camper decision. (The last time we flew he was overwhelmed by a feeling that we were all going to crash.). I’ll let him tell his own story about a month of life in a Winnebago, but he seems to be adapting ok. It wasn’t easy for him. A camper in motion makes a lot of squeeks, squacks, and bangs. Pretty irritating and stressful to a guy already coping with altered perception of incoming sensory info. I pictured having lots of opportunities to support Owen’s writing on this trip. But the way this RV shakes everyone around (depending partly on the state of the roads – better out west! ), typing on a keyboard or even spelling on a card was very difficult. But then every part of Owen’s life is difficult, so why not take it on the road?
If Trum the dog could write his own travelogue I am pretty sure it would be scathing. That is except for the week we spent in the cabins on Kaubashine, where he swam every day and chased squirrels and chipmunks to his heart’s content. Somewhere in the middle of Kansas at a potty stop, he finally had had enough, and tried to take me off down an exit …anywhere… In the moving camper he isn’t sure which would be better, standing at the prow of the vessel, or cowering, pasted to the driver’s leg. When he discovered a niche to lie down in up in the wide dashboard, that filled his desire to be the leader of the pack. Kind of. It’s not particularly safe. But then neither is impeding the driver’s foot.
This story of the road would not be complete without a shout out to the women who made it a vacation, Owen’s support team (and friends) Heidi McCardell and Sheyla Munguia — two awesome, creative, and hard working women!! They each joined us for half of the trip.
Owen’s support women kindly served as Trum’s support team too. He would never have made it without them. Maybe they comforted each other. Seems that all three of them suffer from motion sickness. Having a tent “space of her own” was a critical component of the success of the trip. Heidi is an old hand at camping, which she adores. This was Sheyla’s first time at it, but despite the roar of traffic past most KOAs she got happier and happier about me setting up her tent…
Now that we are back,and the RV parked in the smoldering August sun, I am dreaming of the NEXT trip. Atlanta? Florida? …..
I been wand’rin’ early and late,. from New York City to the Golden gate, and it don’t look like I’ll ever stop my wanderin’… James Taylor
Seventeen days ago we came to G’moms house on the beach, to clear out old furniture, and begin renovations. I shouldn’t be surprised by now that there was significant mold growing there. Molds seem to be ubiquitous. Either that or the stuff is following me. Luckily we never planned to sleep in the house during renovations. Instead we have been trudging back and forth from here to a hotel. Now that most of the furniture is out, I look forward to sleeping here one day again. (I was not always as sensitive to mold as I have become.)
The pink and coral beach house stands between the intercoastal and the Gulf, on a long spit of land called Treasure Island. The island mascot, pirate Captain Jack, welcomes us each morning as we come across the causeway from the mainland. Mailbox kitsch is everywhere on display. The lavender house matches its lavender mailbox. Sun sparkles between palm leaves and over hibiscus flowers on the deck at 8300 Bayshore Drive — one block from Sunset Beach, one of the best beaches I know.
But this place isn’t just a beach destination. It’s a community. When Owen took off this morning, Tom the nextdoor neighbor went out on his motorcycle to help me find him. The neighbors on the other side (whose recycling Owen had just been pilfering), called out “Hello Owen!” and introduced themselves to him, as I supported him getting back to the house.
I am ready to go home. Seventeen days is a long time. Owen is restless and bored. All of us miss our normal routine. The trip should have been a week, but we added on ten days after Owen and I tested positive for CoVid. (All better, symptoms lasted a few days.) Although we appreciated them at first, we are sleeping badly on the hotel beds now, and tired of breathing dry hotel conditioned air.
But we will miss arriving each morning for smoothies and writing on the deck. We will miss finishing our days with feet in hot sand, lulled by rushing waves… until the sun lowers, and we realize that once again we are late to get supper…
I am a poor liar. So, I might as well confess upfront that this weekend Edward and I have flown far from snow drifts to warm weather. The fact that we needed respite badly does not mean we deserved it. What does”deserve” mean? We all need it.
Owen wholeheartedly agrees with any guilt I have, and he let me know that it was totally unfair. He pointed out that he has missed out on so many trips. It’s true. He was pretty bitter to be left behind, and also anxious that we might not return but leave him there, in the apartment that isn’t home, coping with a Pennsylvanian winter.
His parents are thawing. Uncoiling. Reading about sea turtles. Heartlessly writing in the sunshine by the pool, or snorkeling in the bay.
Even so, the ties that bind humans to each other and to their work are powerful and mysterious forces. We found ourselves standing at the waters edge on a beautiful beach, in lively conversation with a special ed teacher from St Thomas and a speech pathologist who serves the entire Virgin Islands. These dynamic women impressed us, committed to their work, serving an underserved population.
What also impressed me was that hearing the story of Owen’s voice emerging from silence through supported communication delighted them. They rejoiced.
This is not the common response among speech professionals of America. ASHA (the American Speech-Language-Hearing Association) has officially come out against supported communication. Plenty of other bright minds see it as a lie too. Consider Amy Lutz, an author and mother of a young man with profound autism and movement dysfunction. Lutz is a doctoral candidate at UPenn, out to prove that supported communication is a hoax. Her research involves pretending to families to be interested, and under the guise of interest observing them in their homes. Sadly she cannot see the independent movements that supporters feel. Owen started out supported at the hand. Now he can at times write supported at the elbow! But he had to start somewhere.
But even those who honestly believe they accept the premise of the split between Owen’s autistic behaviors and his true intentions, find themselves uncomfortable in that space. Doubt or disbelief do not surprise me. Even at the best of times we humans have a hard time listening to each other. When the motor system, at the mercy of lower brain anxiety, is at war with the upper brain, whether the diagnosis is autism, cerebral palsy, or stroke, it’s a lot harder. If this guy can control some movement, why not all of them? How can you move “unintentionally”? I hope science finds more answers.
Reflecting on inconsistent ability to move body parts, reminds me of a friend of ours. She told us she has first hand experience of what it feels like to be Owen after experiencing a stroke. She named one of her arms “she” because it would sometimes move unbidden, doing its own thing without permission. “Variable control” you could call it.
how do you firmly guard your soda bottle against mounted attack while conversing to (rather than about, or over the head of) the person in front of you, who is grabbing for it? And who shows no visible signs of being interested in anything you are saying?
So much easier to look away or to change the subject or leave, than to stand calmly, as our mason John Reagan did when meeting Owen last month. Owen had been thrashing around the house we are renovating, violently kicking the trashcans, likely because it is disturbing to see this house all torn up, still all torn up, but also because trash cans in general are his nemesis. Whatever their cause, the behaviors are exhausting to both of us, and I proposed saying “hi” to John on the way out the door.
I hardly needed to prompt his arm though, since Owen reached out toward John immediately, arm up and fingers forward in a salute that he uses sometimes with new people. Sort of like E.T. And John stopped smoothing cement, and looked up into Owen’s eyes and smiled and helloed back. His energy seemed completely relaxed. If he was faking he was really good at it, he seemed at peace. I loved that moment; it set me up for a week.
It has to be satisfying to finally let people know some tiny portion of the million thoughts and dreams pent up inside you. But it is clearly also pretty frustrating, like trying to run Niagra Falls through a pin hole. And the irony is that if you can speak, then you have the ability to lie. Apparently discovering that you can tell a story and make waves makes a nice change from powerlessness. Other caregivers of spellers and typers have lots of stories of lying, I discovered. It’s a phenomenon.
I remember the shock of the first time Owen told me a lie, and the greater shock when he told a lie about me. “Why would you do that?” I gasped, “that’s your voice!!”
It is his voice. That’s the point, isn’t it.
And this very autonomy that we sought for our children in the first place may be one part of the explanation for the failure to prove it is happening at all. Maybe it parley explains why the attempts to test supported typers and spellers have created damning, inconclusive, or confusing results. A bright mind that can communicate can be witty, can speak with double entendre. Or sarcasm.
If you can speak, you can lie.
Although, honestly, telling the unvarnished truth can be just as hard to take.
My parents are going to St. John It is really warm and beautiful there I want to go too
I would play in the sea And lie on the beach I would look at the clouds And the palm trees Birds would dive and soar
I can’t go and mom and dad Are leaving me in the snow I will be cold here with Trumbull Just hoping they come back
In the center of our parking lot at Meadowbrook Apartments stands a lone pine tree. It must have endured some kind of trauma in its young life, that chopped out or stunted the center top. Its Y shape branches salute me every morning and every evening, as I come and go from our temporary home here. The tree feels to me like a sentinel or a messenger. It isn’t an old tree. But it has seen a few things, already, and hasn’t let hard luck of being planted in tiny strip of grass in an acre of macadam crush its spirit. An old spirit in a young body. “Chill out lady. And smile, ok?”
My temporary home is his permanent one. The apartment complex, like Casablanca in the famous movie, is a place people come hoping to get somewhere else. People from all over the world are perched here, various languages spoken. Moving trucks come and go frequently. And some also call it home.
Like the pine.
Everyone wants peace. How do we find it? Where do we find it? Today in the parking lot, outside unit 503.
The boxes not in storage are mostly unpacked now. We are installed at Meadowbrook Apartments, on the second floor, waiting not-too-patiently for our new home to be renovated. It’s a nice apartment, looking out into a huge oak. Although ours is located next to the hospital it’s quiet. I haven’t seen a meadow or brook, but the West Trenton line runs though the woods beside our parking lot; the train thunders cheerfully by now and then. The whole complex is full of old trees, consequently squirrels. Also a clowder (a glaring?) of well-fed stray cats. The cats, and the old lady who feeds them, remind me of Berith, a force to be reckoned with, who loved her cats and dogs.
Berith C. Acton was my mom-in-law. She died suddenly, just as we entered the enormous effort of packing our house. I have hardly Had time to think about it. But when I see the prowling kitties, or when Owen wears his bright orange SunCoast tshirt, it aches to be reminded of the empty chair and puzzle table in Treasure Island Florida, just a block from Sunset Beach. Mom did not approve of our move. She let us know that it was “very sad” that we were leaving our home in Maryland, which she had visited so many times, to help after babies came, to witness Halloween, to help us get our tree and bake cookies for Christmas.
One of the early statements Mom made to me was regarding living on a barrier reef island – “terrible for the environment. No one should live on a barrier reef island.” But she did, and loved being so close to the Gulf. She loved living with her sister Gwenda, her travel partner all over the world, who also drove her nuts. She was always complaining about Gwenda. And I am cetain Berith drove Aunt Gwenda just as nuts. Mom loved classical music, Gwenda didn’t care for it. Mom disliked air conditioning, Gwenda liked it. Mom loved sci-fi (Star Wars!! StarTrek!!! even Buffy the Vampire Slayer), while Gwenda enjoyed romance novels. Mom loved cats, but didn’t have one for years because Gwenda hated them. Of course all my information comes from one point of view. When Mom took over the downstairs apartment, each sister had her own floor of the tiny beach house. Then cats could enter the equation.
Berith Acton passed from one life into the next life at noon on June 17th, with her boys all standing near. Even if it had been possible for me to be present, it would not have been appropriate to enter that sacred intimate family space. I would not have wanted to invade Edward’s and his brothers’ time with her, but I wouldn’t have minded a moment of my own. All summer, in the spaces between packing up our house, I have been trying to process the hole that Berith leaves behind, in my life, and in our family’s. Part of that story is also the story of the loss of my own mother, so many years before.
Under very different circumstances than Berith’s my own mom, Marianne Nicholson Gladish, died just before Christmas in1984, when I was twenty-one. It was sudden, the result of an aneurysm from her cancer drugs. She died as the medical staff tried desperately to save her life, no family members were with her. Afterwards my grieving dad dealt with the whole thing himself, on auto-pilot. I cannot imagine how hard that must have been for him. We had no opportunity to say farewell to her body, and it was not a time for cozy family remembrances of her. We desperately carried on all Marianne’s traditions, in an effort to keep some normalcy in our shorn lives. It is no exaggeration to say that the loss of my mom has affected my marriage, and the lives of all my children – for good as well as for bad.
One of the effects of that loss of my biological mother was that I needed Berith in a way that I would not have, otherwise. And over the years, I would find myself trying to plug Berith into that “Marianne void” with very poor results. My mom and my mom-in-law were very different women, with very different stories, and very different life experiences. The kind of open, warm affection that was natural to my mom (and dad) was foreign to my mom-in-law — I suspect that she never received it herself. Her family was more shy, and in Marianne’s family emotional wounds hung out there. My mom was the “golden child” in her family of origin, my mom-in-law seems to have been the “problem child” of the family — with a super-achiever older sister keeping her in line. Would Mariane have enjoyed knowing Berith? I think so; my mom had an excellent sense of humor, and wonderful social skills — something her daughter has struggled to learn.
The first time I spoke to my mother-in-law was by phone from University of Chicago, on pretext of finding a book, since she ran a book shop. Berith could sniff out a “pretext” a mile away, and did not care for polite chat. She was very uncomfortable talking to me, and edgy, and basically let me know she didn’t understand why the hell I was calling her to ask such a question. I was not prepared to be completely rebuffed. I wasn’t prepared any of the subsequent times it happened either.
By the time I met her, Mom-Berith had a long colorful history expressing herself boldly, loudly, and heartlessly, in defiance of the niceties of social life. Everyone in the entire extended family including Edward’s dad seemed to have stories of outrageous or hurtful things she had said, at one time or another. But then the whole family Is a loud, boistrous group, protective of each other and connected, but much more comfortable drinking together than talking about emotional wounds or repairing them. Not a good place for bleeding hearts. Or, is it?
But my mom-by-marriage doted on her cats. Mom told her cats all the crazy, affectionate, and silly things, in a loving voice, that she couldn’t say to her loved humans. (She is known in Treasure Island for yodeling at the top of her lungs to call the kitty home for bed.) To her human children she sent her love by mail — packages for every holiday, cards with money in them for every birthday of every son, daughter-in-law and grandchild. Elaborately wrapped gifts arrived at Christmas with lots of handmade bows, and later hefty checks when shopping became too much. She loved her family, yet she could not express her love for her family. The first time she echoed my “love you!” at the end of our family phone call Edward said that was the first time he had ever heard her say those words. Did I mean it? Did she?
Each Decemeber for many years Mom came to stay with us to bake her famous Christmas cookies. I would take her shopping, and let her take over my kitchen, mixing, rolling, baking, then wrapping each one, and packaging them in boxes to ship out to the family recipients. It is challenging, letting another woman take over your kitchen, and every year it started smooth then got uncomfortable, as I inevitably chatted too much and about topics that made her uncomfortable, and she prickled and took contrary views apparently just to pick a fight.
Looking back it reads like theater: Right at the time of year when my psyche was preparing for the anniversary of this blow the loss of my own mother, into my life I invite a woman who is famously undemonstrative and difficult. Usually Berith would not have wasted time on someone of my personality, nor I on her. We were complete mis-matches. And how much more so at Christmas time, season of family and pain, fullness of heart and emptiness, of loving and loneliness. She and I floundered and frustrated each other, year after year. Certainly she wanted to know her grandchildren and connect with Edward, even if she was not able to tell them the things she really wanted them to know. Instead she rolled cookies with them, argued about politics, drank her gin on the rocks, and watched the news.
The dark humor here could have been the end of the story. But looking back, I see that it is not. In her last years, loneliness softened her, and Mom-Berith expressed care for me, possibly to enjoy my company, or at least trust that I cared for her and was not a faker. And I learned to be better at loving safely, creating the required boundaries, and not to pour my heart out.
I remember how hard my own mother tried to teach me these social skills, with little success. I took my psychic wounds seriously; I bled. Mom-Marianne tried to teach me teen social skills, too: how to talk to my peers, how to stand, to appear nonchalant…she was very gifted at putting things into words. But I didn’t get it. Poor Marianne! She worried about me (which of course was no help). Later my wonderful husband showed me how, by loving me and being a fantastic example of social ease. But Mom-Berith showed me in her own way, brutally, but not brutal on purpose but because that is just the way she had always functioned. Reflecting on this makes me laugh out loud, as I am typing it. How we confused each other!
And, I loved her. I feel protective of her. Edward came back from Florida saying “My mother had a hard life.” I believe that she had no tools to say what was in her heart, and so she grew a thorny, hilarious, dramatic, prickly shell over her tender side to protect it. I long to hold the little girl she was, to tell her all the things that were special about her. That is my way. But I expect that little girl might have stamped on my toe and told me to cut it out. That was her way.
What makes us who we are? Nature? or Nurture? You have enriched my life, Mom. I am amused, and improved, and in the end warmed by knowing you. I am sure you are giving them fits in heaven. XO
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.