Too Heavy

Owen and I made it almost on time for church. This small victory was more impressive since Edward was away, and I was doing things solo. Nevertheless, Owen did not like walking in late, and at first I thought we wouldn’t be able to stay, as his embarrassment manifested through his body. We both stayed tense, sitting on the edge of our chairs, backpacks on. It didn’t help that today’s minister was different.

But the visiting minister was chill. And he had engaging things to say. Owen was able to override the anxiety-that-becomes-hitting, pulled it together, and we followed the unspooling of thoughts. Asked to picture an object that might be seen as carrying a message to me of something deeper, I studied a large ceramic planter on the floor near the window. It looked just like the kind of thing that Edward would tell me not to try to move by myself. It stood on a rolling tray.

I studied that pot, feeling certain that the massive form held something for me to get. 

So many things in my life feel so very heavy. The challenges before me feel insurmountable, frightening.  That’s if I peer in at my inner self. Usually I keep that door closed, just keep threading my way across the chasm on the swinging rope bridge, and don’t look down. The day to day challenges of assisting a person who needs a great deal of support to get through life can be fatiguing, but that isn’t it. It’s the larger question of how to keep our educational organization Real Voices of Philly ( alive and independent, and how to create a home for Owen with a small group of typers and spellers, so he can age with friends. Able to communicate his thoughts. Able to do his writing. Funded. Cared for kindly.  Safe from predators….

I have no idea how to do those things. I never got training in those things, and more than that, it isn’t what I wanted to do with my life. I know that as Edward and I are setting it up we will be told over and over “that is too heavy for you”  and “you can’t/aren’t allowed to do that.”  

And the other truly frightening thing – what if my partner in crime, who understands the financial side of the undertaking so much better than I, moves out of this world before we figure it out? How can I possibly navigate this enormous problem solo? (As I am writing this I can feel my blood pressure rise.)

The huge heavy pot sits on a little tray with casters. I don’t remember what was growing in it. I visualize the big clay pot. Something that the minister says reminds me of the history of the wheel – an ancient invention. One of the earliest.  A way to carry very heavy objects that has been with us for a long, long time. The tool is there. It is literally right underneath, waiting to be put to use. 

Sitting in that room, on the edge of my chair with my backpack on and waiting for Owen to fall apart, I take a deep breath. I believe this pot’s message. What I need to carry my burden is already there. It is under my feet. Start with this room of caring individuals, and the two ministers who lead the group – they all make a space for Owen, and are interested in his thoughts. 

And in my life this spring, it is true – remarkable things have happened. People I never dreamed existed have shown up in our lives. Ever since we moved to the Philadelphia area people have arrived seemingly out of nowhere. Even though we spent many days of terrible anxiety or exhaustion, uncertain we could keep it up, actually helpers did arrive. This fall even more people have come out of nowhere, enthusiastic for the mission, presuming without difficulty the intelligence of our non-speakers. Wanting to learn to support communication. Able to take in stride and with compassion the behaviors that autism brings. 

Not really out of nowhere. I had to ask. I had to push against the weight – reach out for help. Write a message, find time to follow up. Sometimes ask again. Organize my life better, organize my thoughts. Write a proposal to be able to ask more specifically.  I had to talk people through things. Let go of some things. 

But, I am not alone. There are now other parents, other students, more teachers, and helpers, aides for just Owen and also for the organization that gives him something meaningful to do with his life. That prayer that I used to say, that if this was meant to happen then it would be you God doing it, because I couldn’t, I couldn’t, I couldn’t possibly do this lift…that prayer seems to be answered. Maybe it IS meant to be. 

Because now I see that the heavy pot once rolling, could take new form, could transform.  Become a huge hot air balloon lifting the weighty basket of beloved people.  Fueled properly, perhaps it rises, independent, airborn, and floats slowly upward, while I shade my eyes watching, in awe. 

Move It

By Owen and Wystan 

Written in the camper, on the return drive from Treasure Island, FL. March 2023

On this morning, just before we left, Owen spun out of the beach house at an early hour – I found him just down the road, at the center of police cars and ambulances. He was unhurt, but had things to say.

Wystan: Want to spell or to type?  

Owen:  “Sp”

Owen: “That was frustrating when the police got my hands and put those handcuffs on my wrists.”

W: They seemed like pretty nice guys to me. What do you wish would have happened differently?

O: ” I wish they would only use handcuffs if a person is not listening.”

W: Maybe he thought you weren’t listening? Maybe that’s what they just do for everyone who looks like a robber? Until they know better?

[Owen pulls the card out of my hands, sets it down and won’t talk]

O: “I was not a dangerous person. I was eating their– ” [disrupted movement, small smile]

W: Yeah, what WERE you eating btw?

O: “- their cookies. And chocolate.”

W: Sometimes people are on drugs, and do very strange things, like that guy Dad saw on the beach. But also could be suddenly violent. I am guessing the police see stuff like that. They don’t know what might happen.

O: “It hurts my feelings [bang, bang, bang] that they would think–”

[Big meltdown here]

W: We don’t know what they think. I’m just trying to help you see the situation through other people’s eyes, to help you understand what you experienced.

Would you like to keep processing this?

O: “Y”

W: If you were a policeman,  called to a situation like that, seeing a guy in someone’s kitchen early in the morning, a guy who did not speak or answer questions, what would you do? What would you like police people to know about how to handle non-speakers?

O: “I would not have the handcuffs out. I would stay calm and I guess I wish I could talk.

W:  Do you mean you wish the police people knew that you wished you could talk?

O: “Yes. Every day every minute of every hour.”

[After a break]

W: So what happened when you got up out of bed this morning?

O: “I was worried about getting into the kitchen again so I went out because that door is easy to open.”

W: I have a question about that. Is it true that you are trying not to break through the locks that we put up? Like do you know how to open them, but you’re trying not to open them? How come you can open things sometimes, but not other times?

O: “Because sometimes it is harder to make my body listen” [Owen starts laughing]. “Sometimes I want–” [more laughing]

W: Does your laughing really mean laughing right now?

O: “Y”

O: [he continues laughing]  “–to get out. And most times –”

[Owen pulls the card away from me and sets it down.]

[Next day]

W: Do you want me to start w a question?

O: N 

[Owen continues to move and sort plastic bags]

W: Would you like to ask me a question?

O: It is hard to write because we have been going so long in the camper that it makes me feeel really deterred from moving.

W: Interesting choice of words. Seems like there’s so little we know about dysregulated movement, or why there would be this separation of cognitive function from muscular function.

O: Yes. I have very little real control of my body. 

[Next day]

W.: Could you describe how getting resistance, or resistive pressure, helps you?

O: it is like havinbg really the wonderful feeling of moving your arm the way you mean it to go. i feel like i cant move.                                

W: Yes, I have seen you get stuck. But sometimes you move very fast, too.

O: i have a hard time with both things .  how to not move is just as hard as moving.

W: Here is part of a conversation that we had a while ago, on this same subject:

W: Do you remember the time before May 2018, before you first spelled?

O: yes i do. it  was reallly terrible. i would standn  at the counter and no one couuld ask what i wanted. to eat.  

W: Do you remember being fed foods that you did not want to eat? 

O: yes it happened a loyt [lot]. i hated eggs and green pepers, and yoiu gzagve them to me so many times. they made me sick. i hafd sto,macnh avchdes [aches]

W: Yeah, I remember that you would burp a lot, getting on the school bus. I thought I was giving you a sturdy breakfast.  Some people might not understand why you would eat something, if you disliked it so much.

O: i wsas hungry and you did not give me another fchoice but if you gave me eggs today i would still eat them, beca8use i cannnt sgtop mysrrelggfg [myself].  my body iis not able to stop eating whatever i see .

W: Thanks for providing these insights O. Do you have any last thoughts?

O: it matters that we non-speakers have a voice in the world. the world does not believe that we reallllly are thinking people…but we have brains trapped inside bodies that act crazy. people need to get to even know us.

♥️ ♥️ ♥️ ♥️ ♥️

Owen’s words are literally, word for word, letter for letter, what he spelled out. When he was spelling on a letterboard (in the moving camper), I transcribed it so it is in standard spellings and capitalizations. When he was typing on his keyboard the text is as he typed it. As he describes, when getting started, or tired, or in a state of high emotion, he has a much harder time with accuracy, and even staying in the chair at all. It is a great effort – and I feel so lucky to know him, and all the other wonderful young people who spell and type who have come into our lives.  This interview took place over several days.

For more on this subject, read Owen’s post about getting into garbage: “Pica Hell” January 27, 2020

RealVoices Fall Session  

RealVoices is the sound of wonderful things developing. It began as a four person group of friends last spring. Today it is a group of five or six and the day  is 10 to 3pm.  We love to have each other to learn with, and to talk to.  We love hearing each others ideas. We focus on our ideas We get to forget our bodies.  

The Andes mountains are yearning to speak. How you hear them really is the question. 

The real business of RealVoices is finding every real voice, and delivering it. Not everyone will see the person behind the disrupted  movement, but there are those who do.

Fortunately there are the ones who do.


Owen and I thought it would be useful for readers to see some of his process.

Like any other writer, Owen begins his work with a rough draft where the main goal is just to keep the words coming. There are lots of insurance movements, so spelling mistakes. Owen often uses repeat letters for emphasis, as well. But he is pretty conservative about his final drafts. All his words are always his own, and any edits as well. (Mom might think she can guess where it’s going, but no!) To edit we set the tablet side by side with the keyboard. Owen touches the laptop screen to get the general vicinity and fine tunes with laborious use of the cursor. As a one fingered writer, to capitalize he hits “caps lock” – so he does all his caps at one time.

Original draft Dec 13

the realvoiced fakk sesssion  realvoicves is the sound ooooof wonderful things developing. it began as a fourrrr person group of friends last sprinfg. today. it is a group of five or six and the day  is 10 to 3pm.  we love to have each other to learn with, and to talkto.  we love hearing each others ideas. we forcus on our ideas we get to forget our bodies. the andes mountains are yearning to speak .how you even.  hear. them really is the question. 

the realbuusiness of real voices is finding every real voice, and delivering it. not everyone will see the perssson behind t

Owen’s Dec 18 edit

the RealVoices Fall Session

RealVoices is the sound of wonderful things developing. It began as a four person group of friends last spring. Today it is a group of five or six and the day is 10 to 3pm. We love to have each other to learn with, and to talk to. We love hearing each others ideas. We forcus on our ideas We get to forget our bodies.

The andes mountains are yearning to speak .how you even. hear. them really is the question.

the realbuusiness of real voices is finding every real voice, and delivering it. not everyone will see the perssson behind the dysrupted movement, bbut

Owen’s Dec 21 edit

the RealVoices Fall Session  

RealVoices is the sound of wonderful things developing. It began as a four person group of friends last spring. Today it is a group of five or six and the day  is 10 to 3pm.  We love to have each other to learn with, and to talk to.  We love hearing each others ideas. We forcus on our ideas We get to forget our bodies.  

The Andes mountains are yearning to speak. How you hear them really is the question. 

the realbuusiness of real voices is finding every real voice, and delivering it. not everyone will see the perssson behind the dysrupted  movement, bbut there arde thosee who do. to 

What is Supported Communication?

“Supported Communication” means resisting the typer’s forward movements, which stabilizes and focuses their efforts to make the controlled movements necessary to spell out their thoughts. Writing, for those with disrupted or dysregulated movement is hard, requiring a lot of patience, effort, and time. Many individuals experience movement dysregulation, those with autism and cerebral palsy among many other illnesses that affect ability of the brain to control the nervous system.

Correctly practiced, supporting communication never involves directing the communicator’s hand, nor guessing, or “helping” – it is just resistive pressure. The tablet/laptop  or letter board remains stationary. If it is unclear whether the communicator’s movement is purposeful or non-purposeful that is dysregulated, or being influenced by the support, the support will come back to a neutral position to allow the communicator to start over again on a path toward a desired letter.

For more information about supported communication, check out the website and contact info at

Preliminary draft for logo

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!

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…

… 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
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]


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


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.


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  

Peter Bay beach, St John