Real Voices

It’s Friday afternoon in my home. At the other end of the house, participants in RealVoices of Philadelphia are working on creative writing. In the living room, a student’s mom is working at her computer. I am finishing lunch. 

The morning classes for RVP addressed environmental microbiomes and sewing.  That was a lot more active – and reactive. There were extra hands on deck to support dysregulated bodies as they cut, and practiced sewing a seam with the machine. (Brave teacher!) But this afternoon there’s nothing but a quiet hum from the room where Megan is instructing them in how to create rich and interesting writing.

If the students were not doing these classes what else would they be doing? Possibly taking a walk outside or circling the mall. One more lap. They might be sitting in a room with a TV set. Or running errands with a parent.  If they are lucky they would be with a 1:1 support with a list of activities. If they were more unlucky they could be sitting or standing with a group of other individuals in an adult day care, getting ready for the bus after a day of doing nothing. They might be biting themselves, chewing or ripping objects, flapping arms, vocalizing – coping as best they can with the soul crushing boredom of being an intelligent mind in a world that doesn’t see you are there.

Instead, these young adults are together, learning history, science, mythology, math. They are discussing. They are composing. They are asking questions. They may also be wandering, jumping up, running to the bathroom, needing breaks or walks, or rocking to soothe irritable nervous systems. But while their bodies may continue uncooperative, their minds are free.

Does it matter that human beings are or are not given voice and opportunity to learn? How might we measure the importance of these things?  What is the reason for their learning? Can you put a dollar value on the opening up of the mind? 

I don’t know how to answer those questions. I only know that I am paid back by the excitement in their eyes as they arrive, by the smiles on their faces.

I see you.

If you are interested in supporting the work of RealVoices of Philadelphia, please consider taking part in our current fundraiser. And thank you as always for reading! https://gofund.me/4c994410

https://gofund.me/4c994410

June Joy

Bronwyn and Bob June 4th, 2022

Can it be a week ago — more now — that we celebrated a wonderful wedding for Bronwyn and her new husband Bob?  I cannot believe it. My photos do not do it justice, still I smile as I look through them, images like jewels, slipping through my fingers—

Gorgeous weather. House full of family. Every corner full..  On the one rainy evening, Bronwyn’s Fire Circle comes inside, symbolized by a table full of candles. The table surrounded by a circle of aunts, sisters, mothers, cousins, friends, warm-hearted women speaking with love about marriage and relationship, encircled again by buckets of wedding flowers.

Then preparations…and practice…

Sister love!
Oskar decorating….
… With Aunt Ann.
Sister Freya, dress maker and musician and…
Rehearsal….

… And feasting! …speeches, and songs…-

Father of the groom and father of the bride
Uncles singing supervised by Madge the mastiff
Joel and Lee, joyful parents of the groom

Suddenly it’s the wedding day– bright sun, dewy grass under my feet and dogwood petal shower for my girl. A sunny room full of bride and bridesmaids getting beautiful — and little granddaughters running back and forth admiring.

Our new house is suddenly complete, very much a home.

Then hurry to dress — to arrive at the cathedral and watch our daughter and her groom standing for photographs, overlooking the valley below.                                                            No time to find out from Owen, “What are you thinking?…” From your beginning there was always the two of you, sharing bottles and laughter.

Our new soon-to-be in-laws beaming, gracious in gorgeous togs. Everyone smiling — groomsmen, bridesmaids, parents, grandparents — holding each other close because life is so precious. Even those who have passed from us seem close, holding us with love–

Brother Chris gets the feel for supporting Owen
More sister love
Sister Libby, and Grandma Margaret anchor the bevy of beauties
You said it James
Beauty
Grandaughter Marlee dispensing petals
Skye dispensing more petals – her first gig…
Shepherded by grandson Stephen, bearing rings.

Heart-opening vows to each other, against the stone stained by purple light… then joy

beaming on their way back down the aisle.

Everything too fast– too fast.

I admit I’m greedy. I cling.  It ‘s hard to let go of all that family, and say goodbye. It has taken  days to recover. The bride’s room is emptied of its bride, except for a spill of flower petals on the floor. The candles are still placed, discarded flowers. I can’t bring myself to put the furniture away where it goes. My wonderful sisters head back to their own homes… No little granddaughter voices pipe in the hallways, no one to ride on the concrete rabbit in the garden. The dollies, so happy to be rediscovered after their long hibernation, sit on the couch, hair askew.

Still, the memory of the beautiful couple driving off into the sunshine on Sunday afternoon, loaded with gifts, to build their first home together in Atlanta stays with me, and nourishes me. Extravagant waving. Farewell to a prior life – even though I still see my little girl collecting things in her shopping cart, and adorned in costumes, and the teenager singing in the woods, the art student exploring expression in clay adventuring in Italy — those days are really done.

“Nostalgia is a trap,” my mom once said.

My neighbor stopped by to congratulate us. She says I must teach her how to play Pooh Sticks over the Pennypack Creek.  Not the same as playing it with granddaughters Marlee and Skye…but I’ll take it.

Painting A New Day

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. 

The Dali Museum, St Petersburg, FL

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.

There Are We Home Again

By Owen Simons

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…]

[halloween poem]

10/12/21


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.]

I Been Wandrin’

July 2021

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 with Heidi on the dock

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…

Sheyla and Owen outside Indianapolis

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

Treasure

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…

Thank you G’mom. We will be back.

Honestly Lying

Estate LindHolm (home of limes), St John, USVI

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.



ST. JOHN


Going away

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

Please take me with you
But if you don’t

Please come home

Owen Simons  
2/23/21

Peter Bay beach, St John

Be Aware, Have High Hopes

Owen’s recent poetry.

BE AWARE, HAVE HIGH HOPES, KNOW YOUR FEARS

Have high feelings 

Be aware

Have your hopes 

Know your fears 

My great young mind is

Aware of many good things

People just feeling good

Or trying to get by

Like having fear 

And wanting peace 

Knowing hope

Like you grow tired

Of fighting for a voice

To express yourself 

I can type

I can speak

Try to listen 

My kindness is real

Please know just know

My voice

Know me 

1/12/2021

TRY TO IMAGINE MY LIFE 

I read feelings 

From people 

I get vibrations

From their spheres 

Try to understand 

Just try

Have you had

Really true heart hugs

by connection 

I get feelings 

Easily

Do you?

Try to connect

By sphere

Feel the connection

In your soul

Really open your 

Heart 

Find your connections

1/19/21

 

The Peace Pine

Good morning!

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.