Matteo

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I met Matteo’s mother first.

I was at the AutismOne Conference outside Chicago. I had learned days before that the Lanier Weed, the young typer from the iTYPE video would be there (iTYPE), and felt powerfully that I wanted to be there. To see for myself. To talk to other parents. To learn how this typing-to-communicate thing works. We don’t usually think of Owen as autistic, although for a while that world was our world. But it hardly matters. People with all different diagnoses type. When Edward found me a last minute airfare for a reasonable rate and a $95 room at the Lombard Westin that sealed it.

It is hard to describe how it feels to suddenly have a door opened to someone you feel you have always known, yet never known. On both sides, there is fear to step through that door. To embrace a totally new way of knowing and communicating is to step out into the unknown. Joy fights with disbelief. Hope and fear. I know what it is to hope and be disappointed – in people, in business, in medical professionals. I needed that joy desperately and my very need made me skeptical.  The maternal part of me rejoiced, but still struggled to comprehend how the boy who played with plastic and stole the butter could have a mature intellect, if a very scrambled delivery system. The scientific side of me was leary. Although Edward and Freya had typed with Owen, I had still not felt Owen move my hand to type for himself.

Lanier’s video gave me hope. She types freely, on a keyboard, with her mother by her side for emotional support. Surely it must be true. It could be done. We could do it. I watched other videos – a Canadian young woman and her story of typing to communicate (Carly Fleishman). Full of hope then, not to mention joy at having a “mommy escape” weekend, I boarded the plane.

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While boarding I received a message from an old high school classmate, a speech pathologist. He had just read my blog post. He had information to share about facilitated communication, he said, and Marilyn Chadwick, “if I wanted to know it.”  I  felt immediately that I did not want to know it. I was genuinely shocked that this particular man would send it. Had he not just read my blog? how excited we were?  how hopeful? Wasn’t it a little late now to “save” me anyway? Did he really think he was doing a good thing to cast doubt over our hopes? Was he suggesting that my husband and daughter would not be able to tell if Owen was moving the pencil to type words? That a speech pathologist of all people would close any possible pathway, however strange sounding, shocked me.  My classmate was offended. I apologized. I turned off my phone, shaken.

When I got to the hotel, I learned that Lanier would not able to attend the convention. She was ill, and could not make the trip. The event was still worth it to me, I decided, but it was very disappointing. Late that night, after an afternoon full of speakers and vendors, I decided to look at the article my classmate sent. It debunked everything I had been learning. In the mind of the writer, and apparently of the larger speech therapy community,  “facilitated communication” was worse than a joke.  It was exposed as an unscientific fraud, dangerously infiltrating the school system. The results were unable to be duplicated. And there was a sex scandal  — a therapist had had a love affair with a man whose speaking she facilitated. I fell asleep trying to sort through the conflicting reports.  I slept very poorly that night.

In the morning I called my daughter. “Mom,” Freya asserted firmly, “it was real. I came home really suspicious. But as soon as I typed with Owen it was clear. That was Owen moving my hand.” It was good to hear that. I decided I could form my own conclusions from the conflicting stories. It was a weepy day.

In the afternoon I sat down next to a blond haired woman for a presentation about probiotics. The woman was Annette Musso. “My son is presenting tonight, at 5pm,” she said.  He felt called to go to events like this one, and spread the word. “I’m not a public speaker, but I have learned,” she said.  She told how unfazed Matteo was by the questions of disbelieving woman at a prior convention, who said if he were really able to type himself, why would he need his mother beside him?  Matteo had typed, “Have you ever been nervous doing something, and needed support?” She and her son had been typing together for two years. He had written books.  After I had finished sobbing on her shoulder and she dried me off, Annette cheerily parted ways. I went to get a nap.

That night I met Matteo Musso. He is thirteen, a petite young man, unable to speak but able to whisper, or to belt out the high pitched keening typical of people with autism. When not typing he paced back and forth compulsively, muttering and smiling to himself.  For their presentation he sat at a table on a well-lit stage, his mother standing beside him holding a clear plastic card with the alphabet printed on it. We watched through the plastic as Matteo moved a pencil eraser from letter to letter, his mother speaking the letter aloud, and then the word after it emerged. Annette paused him at the end of each accumulated sentence to restate it for us. She did not hold his hand or arm. Just the card in front of him.  Periodically Matteo reached across with his left hand to touch hers.

When he had finished his presentation I stood up. I had to thank him, to personally connect with him.  I felt sure that at least part of the reason he was there on that stage that night was for me. But emotion choked my voice. I sobbed out my message of thanks, telling him how we had learned only last week that my son could type,  how I had hoped and then despaired. And how seeing him tonight confirmed the truth of typing to communicate, in the face of the ugly stories. Around me heard others weeping who knew the hope and the pain of my story first hand.

As he took in my words Matteo squinched up his face and covered his ear with one hand. Then he moved his pencil tip across the card to respond —

“WOW. YOUR SON WILL BE SO GLAD YOU DID THIS. SO — GET OUT THE KLEENEX.”

There was more to Matteo’s response, but I was in no condition to write it down. These words are stuck in my memory.

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Originally I wanted Owen to be at the Conference too, picturing the benefit to him meeting other typers. But he had responded “no.” I see now how good it was I went away alone. We hired Marilyn Chadwick on the recommendation of a friend, for whose child she had been a turning point.  I did not know anything of the controversy surrounding facilitated communication. But I needed to know about it. And far away in Chicago the states of grief, doubt and fear that I processed could not harm him. Feeling me disbelieving and desperate would have been poisonous, as Owen makes his tentative steps forward. I felt lead through the whole process, from hope through pain, to confirmation of joy again, meeting Matteo.

Back at home, the glow lasted a while, but progress is slow. Owen is a different personality than Matteo Musso, who chooses to type on a stage for people to watch. Owen is coming to typing at 24. If we had begun this with Owen at eleven I wonder how his life might have been different! But although I had read some great stories and watched some great movies, I never really believed Owen to be a deep thinking person trapped in an uncooperative body.  Whether because of his age or his temperament, it is also hard for Owen to trust the new world we are stepping out into. Word by word, phrase by phrase, he has begun to reveal himself. It feels like building a rope bridge across a chasm, plank by plank.

We are figuring out the best time of day to fit this into our lives, the ways to make it comfortable for Owen, how to frame topics and ask questions that are interesting but not threatening.  Owen is not running to the letter card but also seems unhappy if we do not keep a schedule of trying to type. As I always have, I read his body movements, his few words, and try to understand. The whole thing feels precarious. But the only way to go forward is letter by letter, and word by word, hand in hand.

 

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These are Matteo’s words, typed to his mother, letter by letter, word by word.

 

 

 

It Her Need

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Already last Thursday seems a long time ago. I went to add something to the calendar and noticed I had written “Owen Typed” on one square. “Yes of course Owen types,” I thought. Then I remembered that before last Thursday I did not know he could.

Over the three day period, May 17th -19th Owen communicated ideas in words as  I never dreamed he would, assisted by the speech guru Marilyn Chadwick, by Edward, and by Freya. Since Marilyn left, and Freya left, and then Edward left on a business trip, there have not been wonderful sentences. That’s ok. I expected it. I would not have wanted to type assisted by my mother either.  (For one mother and son duo Marilyn says it took six months before he could type with her support.) But I know now that there will be sentences. Having once seen my son laugh and go with purpose to communicate, I know that he can.  More than once during the days that Marilyn was with us, he wanted to be facilitated. To make the unseen seen – to show us his wonderful mind. He also retreated again and again, caught up in what Marilyn guesses is “exposure anxiety.” Maybe it’s safer not to let the world know.  To do otherwise is so difficult. It will never be easy. Maybe it’s better to return to the drawer full of plastic, put your head down and to just keep chopping —  to hide inside the shell you’ve built. Like the turtle Kathie says Owen always watches when they go the Nature Center at Watkins Park.  Safer to stay the mysterious Beast of one of his favorite movies. A Beast whom Beauty never calls forth to become a naked and defenseless human man.

“Just peace” he typed in answer to one of Marilyn’s questions.

Too late Owen. We will call you forth. We will keep coming back to get you. We will reach out to convince you, we promise to help you feel safe. We want to know what you have to say. We want to know who you really are. Help us learn how to hear your voice in the subtle movements of your hands, letter by letter. One day I think you will type by yourself, for yourself. I think so.

Already there is something unfrozen between Owen and me. Total Communication, Marilyn said. You do not replace what you have with typing. CONNECTION is the most important thing. All forms of communication are good – body language, pointing, speaking, movements of the eyebrow or eyes, the jaw, smiles, a direct look. I know this, but as women will do I doubted my knowing. Marilyn has shown me my son.  I have been reading him for years, and she has validated what I knew but constantly discredited.

Suddenly things that felt so heavy, depressing, worrisome, do not matter at all to me. The thing is, who cares if Owen wears a diaper for the rest of his life? Knowing that he has an active mind has freed me from any embarasment. I know stories of those crippled in part by uncooperative bodies who have had great things to give to the world. You know those stories too. My Left Foot. The Theory of Everything.  It isn’t that I hope he will be revealed a genius scientist or artist. What Owen is here to do on this earth I cannot possibly guess. But his first gift to the world is his insightful and  compassionate heart. I had a dim sense of this before, but through his own words I know it.

On the Friday morning as the rain poured and poured, I struggled with my feelings of inadequacy, feeling crowded, feeling blocked, and watched Marilyn draw words from my son while I took notes. Edward already was way better than I at this Facilitated Typing, which didn’t surprise me, but it was hard all the same. Marilyn was encouraging me to stay neutral, to think of non-threatening topics. Edward is good at doing that. He has a lot of social sense about how to put people at ease.

“Dad is great” Owen typed with Marilyn after an interchange about favorite characters from Wind in the Willows.

But I wanted to know things. I had so many worries on so many topics. Like Camp. “I want to know about camp,” I said to Marilyn. “How does Owen feel about camp?” Marilyn had tried to tell me that my emotions around a subject (like my worry and guilt about sending Owen to camp) would make it harder for Owen to talk about it. A mom’s emotional presence complicates things for typers most of the time.

But she recomposed my question: “Owen, what do you like about camp?”

Letter by letter Owen created a response, redirected or re-positioned as he fidgeted, while Edward and I looked on.  Owen put the spaces between the words, and the punctuation. I wrote down the letters as Marilyn spoke them aloud:

“It reason for my swimming. Understanding I it her need.”

I looked down at the jumble of words in frustration.  “I don’t know what it means,” I said.  But Edward and Marilyn said, “Oh I do.” Then the fog cleared out of my brain.

I understanding her it need.  I like the swimming. I understand Mom needs me to go.

It is a deep gift to be understood. I do not know a greater one. My son Owen and I know each other deeply, if not by words. He has seen my at my best and my very worst, and many stops in between.  I do not need to be Owen’s best typing facilitator. It is enough to know that he will be able to pull off the chains of silence, to unmask his mind. We have always spoken, he and I. The language we use has been explained and validated, and now I recognize my own knowing. And the clog of fear and frustration that had weighed me down lately has been swept away.

I feel free, sure, and clear. Protected by his own ability to speak, I know that Owen will be ok now. And so will I.

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Out of Chaos

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Today was a remarkable day. Today I learned that Owen reads words. Today Owen typed sentences to tell about his thoughts and feelings.

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If you watched the process by which these words were brought to birth, you would very likely be skeptical. And I would understand your skepticism. I felt divided in half for much of the day, both weeping as I listened to my son’s mind emerging, and yet… skeptical. Incredulous.

At the beginning of learning typing to communicate, the support person must hold the typer’s hand, and no one looking at that process could tell who was doing what, esspecially with my son’s wriggling, twisting, grabbing for things and having to be redirected, again and again to focus, to come back to it, to finish telling us what he wanted to say.

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Rome wasn’t built in a day. We are asking a person who has always been defined by his behaviors, by his outside, by his dis-ability, to be now reveal to us his abilities and to be defined by what is inside his head and his heart. It’s a big ask. It will take time.

But watch videos for yourself. I have seen now (at Marilyn’s presentation tonight) how the children, teens, adults who have been typing to speak for a long time do so with very little support. A hand at the shoulder, at the elbow.

Tomorrow Edward and I will have more lessons in talking with Owen. Learning the method. Baby steps. Don’t think too far into the future, just take “the very next step,” Marilyn says.

So – here we go.

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Invited

Marilyn-Chadwick

Today Owen meets his new teacher, Marilyn.

Actually, Marilyn is coming to teach me and Edward. She will be here with us today and tomorrow, watching and developing an understanding of Owen, and of each of his parents. How does Owen already communicate? How do we communicate with him? How can she invite him to reach out into a wider world of speaking? And how can she teach us how to continue this work with him?  The beginning of speaking does not happen in a minute, for anyone.

The answers to these questions are what Marilyn must try to discover in these hours we have together, today and tomorrow.

The questions that haunt Owen’s mother and father are different. They wonder, Can this really be possible? What kind of understanding does their son really have? Could it be that his behaviors and his funny echoing speech hide an active, bored and frustrated 24 year old intelligence, as they have often thought? Can it really be possible that Owen’s mind can begin to  wake up, to be born today as the words of others who type to communicate describe? Is this possibly all a hoax? Owen’s mom keeps thinking of Helen Keller…and Annie Sullivan.

We will see.

If you live locally you also can meet Marilyn. Tonight, at 7pm, she will talk about Assisted Communication methods and show footage of people for whom this has worked.  Here is where to come to meet Marilyn Chadwick — you are all invited. Please be sure to share this invitation with anyone you know who has a nonverbal person in their lives.

An Evening with Marilyn Chadwick  –  7pm Thursday May 17th

The Washington New Church  –  11914 Progress Lane, Mitchellville, MD 20721

“Seeing people as intelligent is foundational to the method and to the assessment process. Treating people as intelligent is critical to setting the proper tone and approach to the invitation to communicate.”    

Marilyn Chadwick, Facilitated Communication Manuel

 

 

Re-Arranging

 

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The month of April had some hard moments in it.

Owen is re-aranging the woods. He hoists a sturdy fallen branch, then another, then another, until his arms are full of grubby logs with ragged bark, some under his armpits, some clutched to his chest. Then, at a whim it seems, he jettisons them, one! two! three! to rot elsewhere, farther down the trail.  Our little caravan just gets walking smoothly again when Owen darts down off the path, jerking our poor bulldog abruptly backwards, to test a giant rotting log – – can he lift it?

“That’s too big Owen” I say. And he knows it, anyway, and settles for ripping off a handful of the satisfyingly crumbly, spongy interior instead. The dog strains forward, unwilling to abandon the walk he has waited for too long today. “No pull, Trum,” I say, to no particular purpose. The dog will keep pulling, and Owen will keep reaching for the logs that capture his attention.

Besides rotting logs, Owen seems especially drawn to wood partially obscured by leaves and forest floor, the most wet and muddy. He digs them out and clutches a couple to his chest, and I sigh inwardly. In a less patient moment, I hear myself kvetch. “No, Owen. Not the muddy one. I just washed that jacket. Why…?

 

Whining “why” is to no purpose either. Who knows why?

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I can’t imagine that Owen hears too much of my fussing. He has a job to do. He is on a mission. And since Owen on a mission is so much more fun than Owen in a state of fog, I can’t feel too unhappy about the mud on his shirt and coat.

Here he stops by another favorite : the splintering trunk of a tree, broken off in high winds. Owen grabs a huge splinter in the group that fans out jagged, and he twists and works it until the jag of wood rips free. Or it doesn’t. Never mind, he will be back to wrestle with it again. Eventually, it will give in. Those usually limp hands of his can be surprisingly strong. Insistent. 

We have reached the bottom of the valley, and crossed the funny patched up wooden bridge over the stream there, allowing the dog to get a drink — well, I allowed it, taking the leash to give the dog’s neck a rest. Trumbull the bulldog is very helpful on these walks, straining forward as dogs will do, keeping Owen moving, but it isn’t much fun for him.  Our old dog Rascal and Owen were more copacetic. They both meandered, putzing along, taking turns pulling each other. Rascal seemed to understand Owen – maybe it was because being a herding dog he understood the nature of his job.

Now the walking is more tiring as the path rises, until we can look down into the ravine covered in last year’s leaf fall. Owen moves slower. Or stops. His fatigue makes him go slower — but mine makes me want to push forward, up the hill, and get this walk over with. I want to be already home and cooking supper – even better sitting down and eating it. Owen’s body going slow, in front of me on the path, blocking forward movement suddenly, overwhelmingly, presents the picture of how the care of him is consuming my life right now, draining me, exhausting me, preventing me from doing what I want to do. My thoughts turn suicidal and murderous, and I step off the path to give myself a time-out on a smooth fallen trunk.  Tears and sobs shift the ugly state of mind. The sun peeks across into my eyes from behind striated western clouds, through the tiny green foliage of many beech trees. Owen presents me with a rotten log. To be helpful? To see if I will be mad at him for picking up more muddy rotten wood? Who knows.  I can only nod at him, waiting for the sadness to process through me, and leave me clear again.

And Owen strides through the woods, back and forth between the trees, checking trunks, investigating under logs, re-arranging the forest to his own mysterious specs.

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Owen Detoxes

 

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You haven’t heard from us for a while. We have been submerged. Health protocols of Dr. Mark Hyman. Owen has been dragged along with his mother and father into a new world of vegetable and fruit smoothies, serious water consumption, and relaxing Epsom salts and baking soda baths.

Generally speaking, over the years anything that one member of the Simons family has explored has impacted the rest of us.  Things I tried out for Owen’s health always tended to trickle over into the way I cared for the other kids, to Bronwyn and Freya’s annoyance. Wellness initiatives I began for Oskar or Edward have ended up changing how I eat, and helping me. The positive thinking philosophy The Secret that Scotty brought home with him was usefully deployed for parental sanity. And when Daric left Rich Dad Poor Dad by financial guru Robert Kiyosaki lying around the house, it resulted in our garage apartment and a new revenue stream. We are just those kind of people — not as skeptical as some – willing to go boldly into new protocols. And drag everyone else along for the ride. 

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Owen is happy to have PGX packets added to his ever expanding collection, and he has taken to salads with great interest. Smoothies and hot baths are always fun. But detoxing isn’t always easy.  And it isn’t always pretty. 

Detoxing Owen is uphill work.  Just for starters, remember his love of plastic and tubbing. Turns out that not only is a nice hot bath filled with plastic not a brilliant idea for detoxing a body (since the warm wet very likely accelerates the release of chemical substances by one, and their absorption by the other), but turns out the tub itself could be releasing lead. Yes, lead. I assumed a porcelain tub was dah bomb for chemical stability — I had been worried about our acrylic tub! For whatever reason, some makers of cast iron porcelain tubs incorporate lead into their manufacturing process. Madness. Idiocy! So now you know. Aren’t you glad? Another thing to worry about. There are kits that can test your tub for it. Maybe I will buy a lead testing kit.  Maybe I don’t want to know.

It turns out that the real uphill work of detoxing may not be physical. Even getting a sluggish bowel functioning is easier than decreasing STRESS.  Or, to be more accurate, moving of bowels seems to be Owen’s particular detoxing challenge, but removal of toxic levels of psychic stress and worry from my life/mind is my own. How much does a breast cancer survivor want to know about the possibilities for toxicity in the environment? Or how many more wonderful plant products should be consumed to boost the body’s ability to fight cancer?  Whether the concern is improving mental function (and that means bowel function, they are deeply connected), or fending off diabetes, or beating cancer’s recurrence, a person can only eat so many kale salads and veggie smoothies, or swallow so many supplements. My research and reflection over the past weeks shows me one thing:  the most toxic thing really has to be anxiety — that is to say stress, and its buddies fear, tension, and anger.

Well, Owen has me beat for coping with stress. He does not do stress, as far as I know.  Maybe I cause him stress. But at stressful moments, his natural reaction is to laugh. And aggravating as it is for me in that moment, laughter has to be a far healthier reaction to the poop of life than anger and frustration.

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Last week I caught Owen listening to French President Emmanuel Macron. I had been busy finishing dinner and getting it to the table when I looked up to see Owen on pause, all movement stopped. He was listening. His whole face lit up into a grin. Of course I stopped everything too, to try to hear what he was hearing.  President Macron was speaking English with a heavy French accent on the National Public Radio news. As far as I could tell this cracked Owen up. His eyes twinkled, his face grew bright, his laugh was infectious. Owen has always loved accents. And here was this guy, sounding like Lumiere from Beauty and the Beast, right in the middle of Mom’s radio news! What a hoot! 

I don’t think Owen is Nationalistic, but his uses as a diplomat for peace could be limited to his capacity for infectious laughter. Maybe that would be enough. It is very healing.  And it is when I sit down to write about my life with Owen that I most benefit from the laughing, able then in reflection to see what is delightful or life-giving in what was just maddening or aggravating before. So maybe the best detoxing for me is here, at the keyboard, searching out the words to describe the essence of my life with Owen for you.

Namaste, dear readers. Here’s to your health.

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Travelin’ Man

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March was a travelin’ month for Owen this year. Is he lucky or put upon? I’m not sure. Traveling is exciting and Owen loves doing stuff, but it is confusing and disorienting to be sleeping and eating in new spaces, at different times, in different air and water, and to have none of the same schedule. And to not know why.  But Edward and I had decided to just take him along with us to check up on his G’mom in Florida, so two weeks after our Colorado adventure we found ourselves on an airplane once again, headed for Treasure Island.

Standing folded into the airplane lavatory to assist Owen there (a Rubeck’s Cube kind of experience) I did feel like we deserved some kind of ingenuity award. It is remarkable what can be done a tiny space. One thing about Owen – he has a sense of humor and appreciates the absurd.

Florida gave us both sun and rain,

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G’mom’s beach

 

 

 

 

 

 

 

 

 

 

 

 

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warm and cold — and blustery!

 

Our blustery day walk was a highlight of the trip. Owen seemed pretty amused to be pushed down the beach by the bossy wind, which blew his collecting bag out at right angles to his body, spinning and spinning it round his fingers.

After Owen had added a certain amount of additional plastic bits to the marine environment of the Gulf, he and I took a rainy day drive to Jacksonville to see Peace of Heart Community Farm. During our eight plus round trip that day, we rolled through a fascinating variety of Floridian interstates, farm fields, and back roads thanks to the wonders of GPS navigating. Owen ate way too many nuts, and was heartily sick of the car by the end of that day. But we did get to witness a miracle in progress — the beginning stages of an assisted living community with a farm built in, a home that will also provide a life’s purpose and a connection to the larger community through the vegetables the residents and a their support staff (some family, some volunteer, some hired) will grow.

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POHC organic greens growing
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Howard’s chickens

 

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Peace of Heart Community Farm is the brainchild of Amy and Howard Groschell. Their daughter Gentry has autism. Years ago, Gentry and Owen attended the same clinic in Atlanta for a summer of saunas. The Groschells dreamed up and are building this beautiful home where Gentry can live and be cared for into old age, along with five other young women with autism. It has not been smooth sailing, Amy told me, it’s a concept in progress. But the garden is up and running, with a local farmer’s market presence, and some of the girls already help out.

Gentry’s paintings line the walls of the house.  After years of trying to heal her by bio-medical means, Amy says it was learning two methods of communication that made the biggest change in Gentry’s life: painting, and assisted typing.

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She paints her large vibrant canvases with the assistance of her stepdad Howard. This and the method of using a keyboard with assistance allows Gentry to express herself, and have made huge difference in Gentry’s happiness, Amy told me. She shared with me the name of the woman (Marilyn Chadwick) who taught them how to use the keyboard technique. I came away from our long drive to Jacksonville full of ideas –  inspired and hopeful.

A vacation rich in experiences!  part lounging in the sun, part touring, part drinking in new ideas— oh yeah and part running after Owen and trying to keep him out of Gmom’s stuff…

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The Star Wars Costumes show, St. Petersburg Fine Arts Museum

It was a remarkable trip, but we were tired and ready to get home — to our own dear, cold, recently-snowed-on Maryland to digest it all.

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Photo by Kathie Constable