VOICES FROM THE EDGE: The Art of Magical Thinking

You will go out in joy
    and be led forth in peace;
the mountains and hills
    will burst into song before you,
and all the trees of the field
    will clap their hands.

Isaiah 55:12

I am at my desk, editing a dissertation for a client, when Allen slides a piece of white paper to me. Before I turn to my son, I put on my "I-believe-anything you say" face. "Hi," I say.

"This will be Dad's new body," he says and taps the paper.


"Oh." I study the sketch he has made. The facial features are blurred, but the outline has broad shoulders, muscular arms, a slim waist, long and rugged legs, slender feet. It is clearly human, but I know certain attributes have been influenced by the places we have visited in the past two weeks: the tallest tree at Rosetree Park, the strongest horse at Linvilla Orchards, the oldest bridge at Smedly, the fastest speed skater we could find on Wikipedia.

This is magical thinking at its best and most concrete, Allen's firm belief that if he can just concoct the right ingredients, his recently deceased father will come back again in a new body, one not broken by illness.

It began with the trees of the field.

Allen, who lives on the high functioning end of the autism spectrum and grapples with a world that is too loud, too bright, and too overwhelming, came in from the Plaza down the street one day last week and said to me, "The trees are whispering Dad's name."

"That's nice," I said. "God made the trees and Dad is now with God."

He gave me a curious look. "Not yet," he told me.

"But you know Dad died. You know he went to Heaven and God gave him a new body."

Allen nods. "I know. But I also know that Dad fooled death before. Maybe he can do it again. Remember?"

I remember. The night of the car accident, the surgeon who put the pieces of Ron back together again said to me, "Your husband is a strong man. Only a strong man could survive that." Time and time again in the last nineteen years, surgery after surgery, Ron defied the odds. Until on July 13th, he didn't.

I try to reason with Allen. "But you saw Dad at the funeral. You were there when we buried his body."

My son nods. "That was his OLD body. He didn't need it anymore. This," and he taps on the paper, "is his NEW body."


I get it, or at least I try to. Even before Joan Didion wrote her landmark book on grieving, A Year of Magical Thinking, the strategy Allen is using was a known anthropological concept. In short, it is the belief that a series of actions--performed carefully and in order--will result in a desired event. It is an illusion of control sorely needed by my son, to whom the forever loss of his father is just too much to accept.

And that's where magical thinking comes in. According to St. James, Handelman, and Taylor (2011), magical thinking provides a connection to what has been broken and helps the thinker cope with cultural expectations of control. During the days between Ron's death and his funeral, Allen needed to hold himself together, shaking hands and accepting hugs, saying "thank you" to those who expressed their condolences. 

All the kids miss their father keenly, but Dennis and Bonnie have their adult lives, their jobs, their partners. Dad was an everyday fixture to Allen, a large presence in his life. It's left a gaping hole. It's not the same with just the two of us, he complains. Hard to play Monopoly with only two people. I murmur in agreement.


"So, just how does all this work?" I asked Allen on Wednesday as we trudged through Smedly Park in the rain. I breathed a sigh of relief when I remembered where the old stone railroad trestle was. Allen needed something "old and stone that was from ancient times." It was ancient enough for him, part of my ancient childhood. 

Allen whirled and faced me quickly, tears in his eyes.  "You can't ask about it," he said. "You just have to let it happen. You just have to believe."

And I do. I believe that any amount of magical thinking will not bring back Allen's father, but I also believe that at this moment it helps Allen to feel safety in an unsafe world (Philosophy Talk, 2018). Every time he proposes a new expedition we need to take that is part of his carefully constructed script towards designing Ron's new body, I remind myself that autism grief is not neurotypical grief (Fisher, 2012.)

In a way, we're all guilty of a little magical thinking. Is his insistence that he hears his father's name in the leaves of the trees any different from Joan Didion's inability to part with a pair of her late husband's shoes because he would need them when he came back? Of if he thinks his father will have a new body with the strength of a horse far off from the lady at the bank who told me that each morning she wakes up and smells the breakfast her husband, gone 17 years, made every morning?

You just have to believe. I believe Ron is no longer in pain. I believe he is happy in Heaven. I believe I will see him again. 

And sometimes, I hear the trees whisper his name.

Can you make it to the end?

VOICES FROM THE EDGE: RULES FOR GRIEVING

Therefore, you too have sorrow now; but I will see you again, and your heart will rejoice, and no one will take your joy away from you.

John 16:22

"Can I have Dad's blanket?" my son asks.


 It is a hot day in July and I cannot imagine why Allen wants a blanket brought from a hospital visit but it has been a draining week and I haven't the energy to form a question and listen to a response.

"Okay," I say. "I washed it this morning. It's in the dryer now." Allen heads to the basement and I think of the soiled laundry I dragged downstairs a few hours ago; shorts and T-shirts, bed pads and sheets. Things to fold and place into neat piles and think of giving away.

Allen is back in a few minutes, the white blanket in one hand, a purple sheet in the other. "Can I have the sheet, too?" he asks and I nod. "They're just what I need," he says happily and carries them up to his room, the place that holds an assortment of eclectic items important to Allen.

I heave a sigh and settle into a chair, a pile of mail in my hand. An ad for tires. A credit card offer for Ron. Irony at its best. Four cards, all addressed to "Linda and Family." I open each one and cry a little, then place them in the basket Bonnie has designated "the card holder."

I hear Allen in his room, moving things around, murmuring to himself. While I am proud of all three of my children and the love they displayed this week, I am particularly proud of my youngest son, whose Asperger's Syndrome makes sensory input and social interactions painful. Yet from Saturday night when EMT's flooded the house and the blue-lights of emergency vehicles revolved outside to the burial at the cemetery five days later,  he has--with the utmost of strength--kept himself together and with us. His siblings and I have allowed him to process things in his own way.

Like all of us, he's had to find his own way to say good-bye to his father.

Bonnie and Dennis stood on the back deck, arms around each other, openly sobbing as paramedics tried and failed to save Ron. Allen sat in a kitchen chair, an ice cube in each hand, letting the sensation of cold block out the cacophony of sensory overload. He seemed calm and detached, but inside his neuro-atypical brain was trying to make sense of the insensible. Order and preparation are necessary tools on the autism spectrum, but death always catches us off-guard.

We'd had conversations about it. All three children had seen their father struggle through many surgeries and hospitalizations, seen his  body grew weaker, seen the pain he suffered on a daily basis. We talked about the "some day", never giving a name to it, hoping that by not naming it we could prolong its coming.

It didn't work.

On Saturday, July 13, at 9:45 according to the policeman who stood vigil, Ron passed peacefully away, the soda and pretzel Allen had gone up to WaWa to get him two hours before on the tray table next to him.

 Lynne Soraya, writing for Psychology Today (2014), says for those on the ASD spectrum, there are just no blueprints for some situations that have the potential for sensory overload. The death of a beloved parent--particularly when it occurs at home, where safety and security are assumed, can easily throw an aspie into a meltdown. Karla Fisher (2012) explains the "meltdown model" in her own reaction to her father's sudden death. A meltdown may not be an outburst--screaming, kicking, acting out--but an inward processing failure. The four emotions readily recognized by most autistics--happy, sad, anger, fear--collide and entangle in ways foreign and strange to neuro-typicals.

Those on the spectrum, like the rest of us, need to process grief in our own way. Dennis, our oldest, holds himself together carefully, afraid to let any cracks show lest he fall apart completely. He keeps his feelings in check, but sketches things out on scraps of paper. He hangs onto the things he shared with his dad, like trips to the Spectrum to see the WWF, and the complicated games Ron invented. I am grateful he has Laura to help absorb his grief.

Bonnie --Daddy's Little Girl--throws herself into projects, sorting through photos for favorite pictures of Dad, creating a memory box to stow precious moments. She spent most of the first, awful week with me, the same way she dealt with each of her father's surgeries and hospitalizations, project bag in hand. I am grateful to Jared who keeps her grounded.

I read and write in my journal, call my best friend every day, knit and watch movies I do not pay attention to. I think about what life will look like now for Allen and I. I think, irrationally, of painting the kitchen cabinets and getting a rug for the living room, now that Ron's walker and wheelchair can no longer catch on it.

And Allen, whose life is still here at home, asks me a hundred times a day if I am okay. I am his touchstone. If I am okay, he can be okay. When someone asks how he is doing, he says, "Mom knows." Right now, it is all that matters to him.

Well, that and a few of his father's possessions he carefully guards: a blanket, a sheet, a card game, a golf club, the chess board he and his dad used to make up a zany game with GI Joes.

Allen knows his father is gone. He knows we buried Ron's broken body at Lawncroft Cemetery last Thursday. But in some part of his being, beyond the senses and the need for ice cubes in his hands, he knows that death is not really the end. He told his therapist just yesterday, when she asked him how he felt, "I know what everyone says. I know they all say my dad is dead. I just want Dad to know that if he wants to, he can come back. 'Cause we love him."

It's not quite John 16:22. But it's close.

It is evening now and we have picked at a supper. Allen has joined me in the living room where I am knitting and pretending to watch a movie. He has his dad's blanket and the chess board. He sits at Ron's tray table, playing by himself the complicated game he and Ron made up. He turns to me and asks,"Do you think Dad is playing with your dog that died?"

"Yes," I say.

He nods and smiles. "All I'm asking," he says seriously, "is for you to believe in the possibility that we'll see Dad again. Maybe not for a really long time, but that we WILL see him again."

I nod. Tears spring to my eyes. "I can believe that," I tell my son.

In fact, I'm counting on it.

What's in a Name?

“Do not fear: I have redeemed you. I have summoned you by name; you are mine." Isaiah 43:1

 I passed out blank paper and pencils and asked my students to choose several colors. Then, using the room’s white board to draw my own example, I asked them all to write their names in the middle of the paper, nice and big. Puzzled, they looked at each other and then at me. Surely this was not content for a college class?

But as I wrote “Linda” in the middle of the space I’d made on the board, they followed suit. “This is the name the world knows you as,” I said. “But what other names or roles do you have?”

With no further instruction, I turned back to the white board and began to cover the square I’d drawn with other words: Mother, wife, sister, daughter, teacher, aunt, writer, reader, knitter, professor. Then I added nicknames I’d had through the years: Honeybear, Bubbles (don’t ask), Giggles, Lyn, Da (my brother’s childhood name for me).

 Still curious and unsure of the purpose, the 31 adults in the class began to fill their own pages. Within ten minutes, they’d loosened up, using a multitude of colors, writing in cursive and print and bubble letters.

 Finally, I turned back to them. “We all have a lot of names and a lot of roles,” I told the class. “Now I want you to circle the name or the role that YOU choose to identify yourself. Who are you?”

 Slowly, they all began to smile. Returning to college as an adult is not an easy task. They needed to see themselves as capable students, to break away from the naysayers who told them they could never earn a college degree. To be something other than what they had been.

 On Sunday, Pastor Tim told the story of a woman in Joshua 2 who was known by one name: Harlot. I imagine her blank piece of paper might have held other words: slut, prostitute, whore and additional derisive terms. But she could have added other roles: daughter, sister, spinner of linen, protector of family, seeker of truth. Roles no one else in Jericho called her, but things she saw in herself.

 All of Jericho knew what Rahab did. It was how she was known. Her house was built against the outer wall, the seedy side of town, and all her neighbors could see the many men that entered into the house. The travelers who came seeking “the harlot Rahab” told her stories of God’s miracles, such as the parting of the Red Sea and the overthrow of Sihon and Og (Bible Gateway). And while her neighbors only saw a woman with loose morals, God saw someone whose faith could make her a heroine.

 Can you imagine the scene? In Joshua 2, the spies come
to Rahab. Given her reputation, no one thinks it odd when strange men enter her house. The neighbors probably just shake their heads and wink at each other. But she, astute woman, knows the stories she has heard from travelers about the God of Israel are true. She makes the decision to throw her lot in with the spies; she takes a risk to save herself and her family.

 Pastor Tim summed it up this way:



1. Rahab knew there was a problem. In her case, more than one. She was not only a prostitute, she did not believe in God.
2. Rahab responded to God’s salvation. She did not let her name or her reputation stop her.
3. We are like Rahab. We might not have her exact sins on our piece of paper, but unflattering things about us are scrawled all over it.

 In Matthew 1:5, we note another name Rahab can add to her paper: ancestress of Jesus. Rahab lived the rest of her life as the wife of a righteous man, Salmon, and was the mother of Boaz. She is one of only four women mentioned in the genealogy of Jesus. Quite a change from the name she was known as on the streets of Jericho.

 After the initial “Introduction to college skills” class, most of my adult students went on to graduate. Some even asked for letters of recommendation to graduate programs. And many still keep in touch with me, years after they have gone onto other things. They came to see themselves, not as others saw them, but as they saw themselves.

Just as Rahab came to see herself as God saw her.

 It does not matter what happened before. All that matters is that God knows us and calls us by name.

 He has redeemed us! (Isaiah 43:1)

https://docs.google.com/document/d/e/2PACX-1vSSBkKattFwptkhJljzO5LyOJpWqJWwjJeaU5ZLGQtncZ9TJ3D8UoppyMHheXz23nr2NXPpWcIFB7p9/pub

Won't You Be My Neighbor?

Luke 10:27. He answered, "Love the Lord your God with all your heart and with all your soul and with all your mind and love your neighbor as yourself."




The other day, my BFF Chris and I were bemoaning the fact that neighborhoods aren't what they used to be. Used to be, we said that neighbors helped each other out. You know, the guy with the snowblower did everyone's driveway without expecting more than a "Thanks" and you could borrow a long ladder from the fellow down the block to clean out your gutters without having to go on Takl and place a bid.  You knew your neighbors would watch your house while you were  on vacation and send a kid over to collect your mail. And if someone in your family was sick or in the hospital, your neighbors would provide you with casseroles and home made brownies. 


As an older woman with a disabled husband and an autistic son, I could sure use some neighbors like that.



But my conversation with Chris got me thinking. What happened to the day of the friendly and helpful neighbor? Linda Poon (2015) writing for the website CityLab, reports that a full third of Americans do not know the names of their neighbors. Yet only five decades ago--you know, those prehistoric days when the Flintstones and the Rubbles were spending every waking moment together--people interacted with their neighbors at least twice a week. It's true our hectic schedules--what Mac Dunkelman (The Vanishing Neighbor, 2014) calls "limited social capital"-- allow us less time for this sort of camaraderie, but is there more to it than that? And, more importantly, can we change it?

 
The Story of the Good Samaritan in Luke 10:25-37 is often told in Sunday Schools; we want our children to applaud the acts of the stranger in stopping to provide succor to the man beaten and left for dead. We tell the kiddos that the Samaritans were pretty much despised by the Jewish people without going into detail. To get an idea of how far the loathing went, think Severus Snape in the Harry Potter books. How ironic, then, that the Samaritan--like Snape who was trying to protect Harry all along--turns out to be the hero.


But if that's all we see--the grumpy old Mr. Wilson coming to rescue Dennis Mitchell--we're missing the point. According to Marilyn Salmon, a Professor of New Testament Studies at the United Theological Seminary, we need to look at the story from the perspective of the robbed and beaten man, lying broken on the side of the road. He didn't care who offered him help. Priest, Levite, Samaritan. Heck, even Severus Snape would do.



And rather than casting ourselves in the role of the hero, let's realize that we ARE broken people, in desperate need of a hero to save us. And that hero is--ta da!--Jesus the Christ, who serves as an example of the most neighborly of neighbors. 


Remember the Samaritan left the injured man at the Inn and gave the Innkeeper two silver coins as a down payment on the man's care? While experts are a bit hazy on the exact amount, the two silver coins would have bought at least two weeks room and board! Getting involved is costly. Just look at the price that Jesus paid.So if we can put ourselves in the place of the wounded and beaten stranger, we realize that we need to look not at the "otherness" like race, religion, and culture of those around us but the humanness. We're all broken. Every single one. 


It is a young lawyer who asks Jesus, "What must I do to receive eternal life?" The irony here is that the fellow already knows the answer. But Jesus recites Deuteronomy 6:5, the "great commandment", not to embarrass the man but to make a point or two: the way in which we walk with God and connect with others in our lives cannot be separated.


So instead of complaining about the good old days and wishing someone with a ladder would just show up and offer to clean out my gutters, I have decided to take a cue from Jesus and be as neighborly as possible, and that means being open to what their needs might be. When the lady next door told me it was hot in her house because she couldn't carry her room air conditioner up from the basement, I grabbed my tall son and we headed over with a screwdriver. It wasn't two pieces of silver but it was what broken people could do.



It's what I would want someone to do for me. 

Voices from the Edge: Tale of a Haircut

My youngest child got his haircut yesterday, and as I sat watching the very patient hairdresser continually checking with him and asking if he was alright, I almost began to cry. Haircuts can be traumatic. But before you begin asking for photos of my bouncing baby boy, let me tell you that Allen is an adult on the autism spectrum and getting him to even consider a haircut --let alone actually allow someone to take a scissors to his treasured locks--was a process I began two weeks ago.

With Allen, I have learned to take things one step at a time.



The Center for Disease Control (2012) estimates that caring for adults with autism costs the government between $175 and $196 billion per year. But this figure, high as it seems, only amounts to 7% of the total allotted to research and education for children on the spectrum. Research from Sweden indicates that this amount could be cut by 2/3s with early identification; while this makes sense, it is little help to those who, like my son, were not identified until adulthood. Currently, the Office of Autism Research Coordination (OOARC, 2019) states that only 1% of government expenditures for autism goes towards the care and needs of adults with ASD. That's depressing news for 2.7% of the adult population.

Meanwhile, those of us who are parenting an adult child on the spectrum are essentially flying without a net. We learn by doing, stepping back and forth in a dance with our offspring, figuring out what works and what doesn't. Then figuring it out all over again when the tried and true method fails.

In Allen's case, surprises are a no-no. Careful preparation is required for anything more than a change in dinner menu. If I need to address a new situation with Allen, I lie in wait like a mother lioness on the prowl, sniffing for clues that might allow me to broach a new topic.

Two weeks ago, as Allen stood at my dresser mirror, lamenting his thinning hair and the sad fact  that, "all men's haircare products lie," I saw my chance. I stowed the clue away in my brain and waited for an opening, which came a few days later when he and I were running errands and he ran his hands through his hair, expressing dismay at the tangles which had taken over his head.

"You know," I said casually, "Grandmom was a hairdresser.  And she always said that hair grew faster when you cut it. Just something to think about."

And he did. Two days later he approached me and said, "I remember Grandmom cutting my hair. But maybe that only applies to lady's hair."

My pulse quickened, but like the wise lioness, I kept my breathing steady. "Maybe," I said. "Maybe we could talk to someone who knows men's hair about it."

He shot me a suspicious look and I shrugged as if the outcome did not matter to me. "Okay," he said.

Then began the investigation to find a hair salon that worked with adults with special needs. Thanks fo Google, I found Benny's Hairstyling in Springfield. When I called and explained the situation, I was told to make an appointment with Sally. I did.

Next, I started my preparation of Allen, using all of my wily mother lioness skills. We're just talking. You don't have to get it cut if you don't want to. We'll go for lunch afterwards. Yes, anywhere you want.

As a complex development disability, Autism is a spectrum because it affects individuals differently. Allen's hot buttons are mostly sensory--heat, noise, bright lights--but also extend to social situations and the inability to discern non-verbal cues. When we arrived at Benny's, I was pleasantly surprised to find that Sally works in an area separate from the other stylists so noise is limited. Sally invited Allen into her chair, and he backed up with a frightened expression on his face.

Wisely, she took the hint. "We can sit over here," she said, "and just talk."

They did. After a few minutes, he was willing to sit in the barber chair. After a few more, he was agreeable to having his hair trimmed. A little more conversation, and the tangles and knots were falling onto the floor. Then--wonder of wonders--he agreed to let her wash his hair.

According to three different reports summarized on OpenMind.com, in another ten years, 3 out of every 100 adults will exist somewhere on the autism spectrum. And the $330,000 currently spent on researching the needs of adults just isn't--pardon the pun--going to cut it.

Zac Smith, writing for VOX, says this about his own adult diagnosis of autism: Autism  spectrum is a 
broad and constantly redefined space, a frontier of the mind that's still mostly wilderness. The revised definitions of it on the DSM 5--just a few years ago--are still controversial. It's still easier to diagnose aspects of the spectrum in people and more difficult to determine if a formal diagnosis is necessary, if it's even a problem.

Trust me on this, it's a problem and one that is likely to worsen until we recognize the need to explore the wilderness and remove the stigma that is often attached to "having autism."

And we need more people like Sally at Benny's Hairstyling, who treated Allen with the respect and kindness owed to every human being.

And now, since you waited so nicely, here is a picture of my bouncing baby boy. All 6 foot 6 inches of him.