Voices from the Edge: God, Dad, and the Fortress of Solitude

“All of us need a private space. Autistic children need their secret places too in which they can hide and retreat to their own world. After all autism is a withinness disability and autistic children need the security of their own hideaways. I had mine, it was a place for me to think and recharge myself.” Temple Grandin

FedEx:Delivered 07/23 at 5:23 PM.

"Allen," I call into the dining room where Allen is playing a game on my computer. "I just got a text that your tent was delivered!"

"Really?" my son shouts back to me. "I thought it was going to be late!" I hear the chair scrape across the

floor and the sliding door Allen keeps shut to block out the game noises is opened. Excitedly, he rushes to the front door, eager to retrieve the package we ordered two weeks ago. I settle back into my rocking chair and pick up my knitting. A lot of preparation has gone into this event. We have put up a shed, sorted through Allen's collections of salvaged items stored for the last year under a tarp on the patio, and engaged in long conversations about the usefulness--or not--of certain things. The patio is now clear and ready for the tent--a pop-up gazebo--that will provide a space for Allen to work on his projects.

Like others who live on the autism spectrum, Allen needs his own personal space. It has not always been easy to attain in a small three-bedroom row house with siblings and a series of "lost boys" trooping in and out. A year ago, he claimed his now-married sister's abandoned room--once my office--as his project room, but I've lately been dropping hints about taking it back. Ordering the gazebo provided a space for Allen during the warmer months but also served as a prompt for him to clean off the patio. Win, win.

Or not. Allen comes in from the front yard, fists clenched together, struggling to control his breathing. "Let me see the text" he yells and grabs my phone. "Well, it says it was delivered but it was not! They are lying to me!"

I sense the beginning of a melt-down, something we struggle to avoid and have been managing well lately. I speak slowly and calmly; chances are, my son will follow my lead. "Hmmm," I say. I notice his breathing levels out. "Well, let's think about what we should do. Let's think about other things we've had delivered that didn't arrive."

Allen sits on the edge of the couch, my cell phone still in his hand. He stares at the text again. In a moment, he speaks. "We look in other places. Like neighbors' houses."

"Right!" I say, happy he is moving into problem solving. "So, let's go do that."

I abandon my knitting and my peaceful evening and we venture out into the summer night, heading in opposite directions as we check the porches and front stoops of neighbors. But, alas, the box is not to be found. I steel myself for what might happen.

But Allen remains calm. "There's that guy down the street with the dog," Allen says. "Sometimes we get packages for him and we have to drop them off. Maybe he got ours today."

"Good thought," I say so Allen grabs his car keys and takes a short drive to the mentioned house. I take the opportunity to call Fed Ex and reach a real live person, which is not an easy thing to do and may possibly cause me to have my own meltdown. I am told, politely, that the package was delivered but the driver will be contacted and someone will get back to me. I hang up knowing that no one will.

Allen returns and does a little bit of verbal stimming--grunts and groans--before he settles onto the couch again. "The thing is," he says, "I NEED the tent. It's, like, my space. My own personal space. I need it to work on my projects. I need it so you can have your office back." He eyes me. "You know, that, right?"

I assure him that I do know that and that I have called Fed -Ex. It is getting late now and there is not much more we can do tonight except wait, something Allen is not very good at.

He heaves a deep sigh. "There is one more thing we can do," he says. He gulps. "We can pray."

I am surprised to hear this as an option. It has been over a year, to my knowledge anyway, that Allen has prayed. I speak slowly, carefully. Allen is like a baby deer, sometimes, easily spooked. "Well," I say in my totally calm teacher voice, "that is a good idea. What made you think of such a good idea?"

He shrugs but I can tell he is pleased. "Well, Dad always liked my projects, right?" I nod. "But Dad is in Heaven with God now, right?" I nod again and try to keep tears from falling. "So I thought maybe Dad could talk to God about it, and let God know how much I NEED the tent. I think God will listen to Dad because, well, God's a dad, too."

I cannot argue with Allen's logic so together we bow our heads while Allen prays: "Dear God, if you have the time, could you go find my dad? He can tell you why I need the tent and how important it is to me. And if you talk to him, tell him Allen says 'hi'." My son finishes his prayer and looks up expectantly. "I'll check!" he says and goes to open the front door. "Nothing yet." He shuts the door again. "But there's a lot of people in Heaven. It might take God a while to find Dad."

I nod, not trusting my voice to speak.We watch an episode of Marvel: Agents of Shield. Allen prays again. And, after he has gone to bed, I add my own prayer. Fervently. On my knees.

The first thing Allen does the next morning is check for his package. It's also the second and the third thing he does. While he goes outside to move a few things into the shed, I make a phone call to the company that sold the tent. The woman I speak with, Jennifer, offers to send us a replacement or a refund. I tell her I will talk to Allen and let her know.

I am on my way outside, reluctant to damage Allen's fledgling faith, when I hear a thump at the front door. My heart pounding loudly, I go to the door and there, on the step, in all it's banged up and taped back together glory is a long heavy box. There is a picture of the gazebo tent on it.

"Thank you, God!" I shout as I rush through the kitchen and to the back door. "Allen!" I call across the yard. "It came! Your tent came!"

As excited as any small boy on Christmas morning, Allen rushes to the front and pulls the purloined package into the house, unpacking it and laying the pieces out carefully. "Wow," he says time and again. "Wow. God heard me. He must have talked to Dad!"

We haul the pieces to the patio and, with some effort and muscle, manage to get the gazebo upright and stable. Allen walks around happily hammering the tent stakes in place and asking which of the deck chairs he can use. Any of them, I tell him. I am probably as happy as he is that his place, his fortress of solitude, is now up and ready. But in a moment, I am even happier.

Allen, my tall son who has lived all of his life on the edge of the autism spectrum, who has struggled to adapt to a world he does not understand, who has in the last year come to a peaceful acceptance of his father's death, stands in the middle of the tent, his arms open to encompass his own territory. "Every time I am in my work space," he says, " I will remember that Dad still loves me." He lowers his voice. "And, I guess, God does, too."

DAD'S COAT: A CHRISTMAS STORY

Matthew 25:40

"The King will reply, 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.'

Allen and I are wrapping Christmas presents, enjoying a “Dad moment” as we remember the
crazy shapes Ron would wrap presents in so no one could guess the contents. Allen sticks a bow
onto a gift--just a plain old shirt box--and whispers to me conspiratorially. “I already knew what I was
getting Dad for Christmas,” he says. 

“Really?” I say in surprise. “Dad died in July. How could you already know what he needed?”

Allen sighs. I know he is processing the words that will make sense to both him and me. Reconciling
himself to his father’s death five months ago was not easy and my autistic son spent weeks
believing his father would come back again if only he could find the magic formula. “Well,” he begins,
“Back when I thought Dad was coming back..” his voice catches "...I was thinking that Dad
needed to be safe and protected. You know, from all the illnesses and stuff.” He looks at me for
confirmation and I nod. “So, I wanted to get him a big coat--like the firemen wear--to protect him.”

As always, I am touched by the heart of my youngest son whose concern for his ill father was a
focus of most of his life. It is a moment before I can trust my voice to answer. “I am sure Dad would
have appreciated that,” I say. “But you know, we gave Dad a new coat last year.” I swallow.
“He only wore it once.”

Allen does not reply. He picks up another gift to wrap. “I still wish I could give Dad something.”

So do I, I want to say. But a person who is living in the Heavenly Kingdom has no need of material
items. Still, how could we honor Ron and his life? I begin to recall the gifts of years past and the
many, many years when we had no money to give anything to each other and scraped together
Christmas for our kids. Then, a thought enters my mind.

“You know,” I say casually, “my school is collecting things to give to the homeless population in
Philadelphia. Every Tuesday, a group goes down to Center City and gives out hats and gloves and
scarves.” I take a moment to fight back tears. “How about if we give Dad’s coat away?”

Allen considers it. “We’re sure Dad won’t need it?”

I shake my head. “No. Dad has no need of a coat. You know where he is, Allen. You know he’s not
coming back.”

There is a sigh. Allen’s acceptance has been hard won and is still tenuous. “I know,” he whispers.
“Sometimes I just like to pretend he is.”

“That’s okay,” I say. “It’s okay to pretend that. So, what do you think? Should we give Dad’s coat
away?” I go on wrapping presents as his atypical mind processes the information.

Finally, there is a nod. “Okay. Can I be the one to put it in a bag?”

“Of course,” I say.

The next morning, I pick up the bag Allen has left on the enclosed porch and carry it out to the car. Even though I was the one who suggested it, I am strangely reluctant to give the coat away. It seems so final. I bought the coat a year ago with hope: hope that Ron’s physical therapy would help him improve to the point where he might be able to leave the house; hope that with assistance  from his nursing aid and the elevator at church he might once again be able to join me at Sunday services; hope that a few small steps taken outside on the sidewalk might lead to a walk around the park, a Saturday in the spring sitting on a park bench watching the boats sail down the Delaware River, a family outing to a Phillies’ game. 

None of which happened. I feel the weight of the lost hopes as I heft the bag into my car and drive to
school, my eyes smarting tears, my heart breaking. I carry it into the school and it sits behind my
desk, an accusation. Why did I continue to hope? Why did I continue to think things would get better?
Finally, I ask a student to carry the damning bag upstairs to Brother David. I can breathe easier
when it is gone. Back home, I only tell Allen I have given the coat to the school.

During the days up to Christmas, I struggle to maintain some Christmas cheer. I engage with my students and the Christmas traditions of a Catholic high school in the best ways I can: the Ugly Sweater Day, the cookie exchange, the Secret Santa pick. At home I collapse after supper, going to bed early and waking up still tired. I plod along, expending emotional energy at school and with Allen, and helping my two older children as much as I can. I pack away more of Ron’s clothing for the Good Will donations and I order his grave marker at the cemetery. I put up a small tree for Allen and me, I unpack decorations. I function.

It is the day before school breaks for Christmas and I am getting my classroom ready for the students
that arrive before the first bell, students who are still learning English and crave the warm safety of
my ESL room. I am humming “O Holy Night” and taking deep breaths whenever I think of my late
husband. Ron loved Christmas. Everyday, I swim through the thick memories to surface with my
students.

I am switching on the lights when Brother David appears at my door. “Merry Christmas,” he says and
I respond. “I wanted you to know,” he continues, “that your husband’s coat found a home yesterday.
We were able to give it to a homeless man who was very appreciative.”

My heart swells even as tears spring to my eyes. I can feel Ron’s warm smile bathing me. My husband had a generous heart.

"But it's funny how it happened," says Brother David. "We'd had the coat a few weeks, you know, but
we didn't meet anyone that needed a 4-X coat. Then, on Tuesday, a large man came by and said
he'd been looking for a coat but he could never find one to fit him. He said he didn't often come down
near City Hall, but someone he barely knew told him to come see us. In fact, he couldn't remember
ever seeing that person before. So he came down and there we were. And your husband's coat fit
him perfectly."

I nod but find I cannot speak.

"He said," Brother David continued, "that he'd been offered some construction work over the holidays
but he knew he needed something warm to wear. He'd just about given up finding a coat. He was
wearing a couple of sweat shirts, but that's all he had. When we gave him the coat, he cried. He said
it gave him hope that he could turn his life around."

I am crying right now, realizing that the hope I held for the coat I'd bought for Ron had been fulfilled
after all. Brother David reaches out and hugs me. All day, I hide this gift in my heart, thinking of how my son will react when I tell him his father’s coat is now protecting someone else.

Back home again, Allen has hot tea ready for me and I settle into my chair. “Dad’s coat found a home
today,” I tell him. I tell him the story from Brother David. Allen smiles, then is thoughtful for a moment.

"We should hang up Dad' stocking," he says. "Because it feels like Dad is still here."

"He still is," I say as Allen dives into the box of Christmas decorations to retrieve the stocking. "And he always will be."

FINDING DAD

1 Corinthians 2:9 But, as it is written, “What no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him."

The grass is beginning to grow and cover the earth. Beneath it, a few feet down, is my husband's casket. Only a flag and its holder, placed there three weeks ago, marks the spot. It is time, I tell myself, to order the grave marker, another step on my widow's walk.

I've asked the kids their opinions. Dennis had none, just names and dates. Bonnie wants John 3:16, Ron's favorite verse, and an eagle for Ron's favorite team. Allen, whose presence on the autism spectrum has made his father's death a difficult concept to grasp, has refused to respond. 

But that was three weeks ago. Allen and I have had a good--but busy--day. With a school holiday courtesy of All Saints Day, we have managed to make our way through a long list of errands. Allen even got his hair cut, a task that was daunting back in June but which he now takes in stride. He even accepted a different barber, telling Rachel how he wanted his hair cut and politely shaking her hand
and thanking her when she was done. 

We are driving past Long Croft Cemetery, our trunk full of groceries, the last of our errands completed. Allen, who finds social interactions taxing, is already half-asleep in the passenger seat. But it's been a good day--such a good day--and I feel I can push him just a little more.

"I'm going to order Dad's grave marker on Monday," I say and motion to the cemetery.

"I'm not coming," he murmurs. There is a sigh and a pause. "Why do people do that."

"Do what?"

"Put--you know--markers on people's graves. What's the point?"

Those on the ASD spectrum tend to think in terms of absolutes. What would be a concrete reason I can give? "Well," I say, "I think it's so families can find where their loved one is buried. So they can bring flowers. So they know where they are." I push a little more. "So we'll know where Dad is."

"Dad's not there," Allen says quietly. "Just his old, broken body is there."

I feel a lump in my throat. The fine art of magical thinking has convinced Allen that his father would come back if only he found the right formula. For thirteen weeks after Ron's death, Allen and I spent every Saturday hunting for clues, looking for Ron. We visited Linvilla Orchards and found the strongest horse, sprinkling a few hairs from Ron's brush along the path. We located the tallest tree at Rosetree Park, wrapping a ribbon around its trunk. We explored the oldest bridge at Smedley Park, leaving one of his father's shirts behind. Marking spots where Ron might return. We waited at the station for a train that never came and for two weeks used Google Earth to track the route of a ship on the Delaware with a mysterious symbol that, said Allen, "meant something."

Allen didn't find his father, but he found a way to the other side of his grief. Two weeks ago, the magical journeys ceased. Allen said he was transferring his "sad memories" about his father's last, painful year into his newest and strongest sword. He was done, he said, looking for Dad.

And it seems to have worked. In the last two weeks, any conversation about Ron has been happy: the way he loved to play board games but always cheated, his booming laugh and warm hugs, his crazy dance movements known in the family as "doing the Ronnie."

Autism grief is not neuro-typical grief. Allen has needed time to figure it out. I have tried to be wise enough to let him. We seemed to have arrived at a good place. But it's been a good day, a really good day, so I venture one more question.

"If Dad's not at the cemetery and he's not on the boat and he's not on the train, where is he?"

Autism grief is not neuro-typical grief. But with enough time, enough magic, enough faith, and enough love, we can all find what we need.

My son looks at me with tears in his eyes. "Well," he says, "sometimes I like to pretend he's across the street at the firehouse, talking to the guys. Because that helps me. But," and he lets a few tears fall, "I know he's in heaven. And I know he's okay."

And Allen, too, will be okay.

THE MAGIC SWORD

“Never say goodbye because goodbye means going away and going away means forgetting.”― J.M. Barrie, Peter Pan

Allen lays three of his swords on the rug in front of me. Like others who function on the autism spectrum, he has many collections of many things, but swords are his favorite. One sword is heavy and broad, one is short with a curved blade, and one is thin but strong with a fancy handle. It is the last one that is the newest, purchased just hours ago at Booth Corner's Farmer's Market for Allen's birthday.

"I need to put my consciousness into one of these swords," he says. "Which one do you think will be best?'

A million questions circle through my head, but I look at each sword and ask the one I think matters the most. "All of your consciousness," I ask, "or just part of it?"

It is the right question. "Just the bad things," Allen says. He sighs. "I'm tired of feeling bad about Dad. I'm tired of trying to make him come back. I know..." he gulps "that he's gone. I did everything I could but--" he holds his hands out in front of him--"none of it worked."

I nod in sympathy. In the fifteen weeks since Ron passed away quite peacefully in his easy chair, Allen's magical thinking has kept alive the hope that his father will one day conquer death and return. Almost every Saturday has found us on another quest for clues. About three weeks ago, the journeys stopped as Allen processed the finality of his father's death and struggled with his loss.

Allen stands up and takes a deep breath. "I don't want to feel bad about it anymore. I don't want to remember the bad things. Like how sick Dad was. And how much pain he was in. It was really sad and I don't like thinking about it."

"Neither do I," I say and fight back tears. The nineteen years since the car accident injured Ron have been difficult, but the past two years were particularly grueling, not  only for Ron but for our family.

"So," Allen continues, "I'm going to take the bad thoughts and I'm going to transfer them to a sword. And then I will only have the good thoughts about Dad. The fun things. The happy things."

"I think, " I say, " that is an excellent idea." I get down on the floor to examine each of the swords carefully. I am not at all alarmed by my son's idea. As an adult with Asperger's Syndrome (HFA), Allen needs tangible items to help with intangible ideas. Many therapists posit writing down your worries on a piece of paper, folding the paper up, and letting the paper handle the worries (PsychCentral). 1 Peter 5:7 suggests that we, "Cast all your worries on Him, because He cares for you." Harvard Health concludes that many people with Asperger's suffer from anxiety but find it difficult to address. I've let Allen do what he needed to do to come to terms with the finality of his father's recent death.

And it seems we have arrived. I study each sword and comment on its good points. Then I touch the one in the middle, the one just recently purchased. A "Three Musketeer Sword" the seller called it because if its fancy red and gold grip. "This one," I say. "And I have two reasons."

"I agree that's a good choice," said Allen. "But why?"



So I tell him. "This sword was not here when Dad was here. So it has no...previous print from Dad. It has no...memories of him, you know?" Allen nods. "And it's long and strong and made of steel. It will hold even your unhappiest memories."

"Okay," says Allen and gathers up his swords. He takes a deep breath. "Good bye to the bad memories!" he says and carried the swords up to his room.

"Good-bye," I whisper and turn back to my knitting. Upstairs I hear the sounds of Allen's footsteps, his door opening, then silence. I do not know how long it will take to transfer all Allen's bad feelings about his dad.

But it does not take long at all. In a few minutes he is back. "I did it!" he says. "Now, I don't need to feel bad about Dad anymore. They're all there in the sword. I don't need to carry them."

"Great," I say.

"But," and he grins at me with the smile that has charmed since childhood, "I kept the good memories." He touches his chest." I kept them all right here."

I nod and look down at my knitting, letting my tears fall. "I kept my good ones, too," I say. 

FADING MAGIC

The magic thread of its huge haunting spell,
And that linked his life to magic kingdoms
And to lotus-land
--Tom Wolfe

He'd tried his best. For the last twelve weeks, he'd hung his father's shirts on the branches of a tree at Smedley Park, watched a horse race across the field at Linvilla, set his Dad's shoes out on the porch, waited for a train that never came, and watched a ship with a mysterious symbol on its hull float down the Delaware River. He'd kept hope alive in his heart, even as it grew fainter with each passing day, trying to read into the world around him clues about his father's return.

Despite it all, despite his fervent wish, despite the magical thinking that kept him from grieving too deeply, his dad hadn't come back. And now, as more and more pieces of his father were packed up and put away and the sounds of his father's voice became fainter in his memory, he began to think that maybe the magic wouldn't work. Maybe, wherever his father had gone, he just wasn't coming back.

"Why wouldn't Dad want to come back?" Allen asks me one evening.

Inwardly, I sigh. It has been a common theme of our conversation the last three months. Patiently, I give him the same answer I have been giving him all along.  "I'm sure he wants to come back," I say in a level tone. "But I don't think he can. It's like he's in another dimension in heaven. He just can't take a train or a boat to get back to us."

"Sounds stupid to me," says my son who lives on the upper edges of the autism spectrum and understands the world in the most concrete of terms. "If he wants to come back, he should be allowed to."

Ever since Ron passed away in his sleep, quietly slipping from us while my daughter and I were visiting my father, I have struggled to help Allen accept the finality of death. It is a concept illogical to most on the autism spectrum who find comfort in the ability to control the world around them, a world they often find too loud, too colorful, too busy. I have tried to make Allen's life predictable again with routines for the two of us: who cooks dinner, who cleans up, who does the laundry. Every Friday night is market night and take-out supper; every Monday night is pasta and a movie. The routines help Allen whose emotions have been scrambled by his deep loss (Indiana University, 2019). 



And I have accepted the pieces of magical thinking that has found us spending most Saturdays searching for clues to Ron's return, seeing each of Allen's ideas as a step he needed to take in order to mourn his dad. I have put no time table on it, resolving to participate in the magical journeys as long as Allen needed them.

But the magic appears to be fading. It has been two weeks since we have waited at a train station or checked the shirt Allen hung on a tree. 

"The thing that really bothers me," and Allen pounds his fist on the table to make his point, "is that the night Dad...left"--his voice catches on the word--"he didn't say good-bye. " His voice drops to a whisper. "I wish he'd said good-bye. Then I could have said good-bye to him."

"I know," I tell my son. "I wish that, too. But I don't think Dad knew he was leaving, that God was going to call him to Heaven. I don't think he had time to say good-bye."

"I was just upstairs," says Allen. "If he'd called me, I would have come downstairs."

"I know," I assure him. "And Dad knew you loved him."

Allen nods his head sadly and is silent for a few moments. I wait, giving him time to process. Then he heaves a huge sigh--full of loss and pain--and closes his eyes. From experience, I know that he is putting his words together carefully. "I guess," he says after a while, "the only thing left to do is to find a way to honor him."

My heart soars. This is a huge step towards acceptance. I nod my head.

"What would you suggest?" I ask.

He shrugs. "Well, maybe like once a month we could cook his favorite foods and play his favorite game," he says.

"That would be good."

"And at Christmas we could still hang his stocking."

"Definitely."

"And once in a while we can go outside at night and look at the stars. And think that Dad is looking at them, too."

I hold back my tears and nod. "Sounds good. And when Bonnie and Dennis are here on Sunday for your birthday, we're going to go put the flag from the VA on Dad's grave."

He is thoughtful. "My first birthday without Dad."

"I know. It's sad, but we'll all be together."

"Okay. Maybe we can sing the birthday song in the off-key crazy way Dad had."

"Of course," I say. "It's a family tradition."

Allen smiles at me and walks into the kitchen to get a snack. "I'm making you tea!" he says.

"Nice," I say. Magical thinking may not bring his father back, but it has been helping Allen cope with his loss and move into a world without his father at his own pace and in his own time. I hear him in the kitchen now, talking to himself as he fills the tea kettle, takes a mug from the cabinet, gathers up the creamer and the sugar. Step by step, he reminds himself what needs to be done. He gets to the other side of the task.

He, like his brother and sister, is getting to the other side, beginning to imagine life without Ron.

I look at the family picture on the shelf next to my desk, a photo taken years ago when the kids were small and Ron was well. On some plane, on some level, Ron still exists. Then I feel a tear escape from my eye. I, too, am learning to move into a life without my husband. 

I think I am going to miss the Saturday journeys. Even though I knew Allen's magical thinking would not bring Ron back, it was nice to keep the magic alive just a while longer.