Pointy Things

 My new paring knife is missing and I need it for the roasted potatoes I am preparing for our Sunday supper. I shout to my son.

“Allen! Where is my paring knife? The one with the black and gray handle!” I specify the color because two other knives--both with plain black handles--have been heisted from the utensil drawer by Allen, who says they are both his and now reside in, respectively, his tool box and his shaving kit. 

“Was it a pointy thing?” asks Allen.

Yes. Pointy and sharp and metal. A knife. You know, a knife!

But Allen doesn’t know. The concept of specific names for things is difficult for him to grasp. He can easily recall what we name articles of clothing--socks, shoes, shirts, pants--but other things have much more fluid labels. 

“What’s that wooden thing we use on the leaves, Mom?” he will ask me.

“A rake?”

“Ah, yes. A rake. A rake.” He’ll repeat it several more times, trying to embed it in his brain that has too many synapses trying to make connections. He’ll probably ask me the name again when the leaves start to fall.

The rooms in our house are, to Allen, defined only by their contents. The living room is, “the place where we watch movies”, the kitchen is, “where we keep the refrigerator”, and the dining room is, currently, “where the computer is.” I can understand his confusion with the dining room which has been, in his lifetime, “the room with the big table,”, “the room where we do our homework,” and --in the last year of my husband’s life--”where Dad sleeps in the funny bed.”

Not only are the monikers changeable, the use of the items in our house are flexible. I see a dented tea kettle with a melted handle and Allen sees a steam engine used to power a mini-bike. I fold up a box from Amazon and place it in the trash and he shouts, “Mom! I can use that for my safety stand!” I do not know what his safety stand is and I don’t ask. I just hand over the cardboard.

If I want to throw something away, I wrap it in a black plastic bag and bury at the bottom of the trash bin.

“Great grandpa Waltersdorf would have loved you,” I tell my son. “He liked to collect things. He had a ball of string--little bits he’d saved and tied together--this big.” I spread my hands the width of a pumpkin.

“Where is it?” asks Allen. I’m sure his brain is already thinking of constructing an intricate spider web he can use to catch energy waves.

I shrug. “Gone long before you were born.” He looks sad, probably at the loss of the string and not a great grandparent he never knew.

Like those of many people who exist on the autism spectrum, Allen’s thought processes are often difficult to change. Supper must be at 5:30, Friday is when we order pizza, and market day is Thursday. The predictability helps him stay grounded in a world that changes too fast. Social skills are not his strength; we work hard to prepare for any situation involving people outside his immediate family, laying the foundation weeks in advance and social stories to help him with societal expectations. “I don’t know why that’s important,” he will say when I ask him to comb his unruly hair before his grandmother comes, “but I’ll do it.”

His rigidity in some areas is a dichotomy to his creativity. He sees objects and their potentials in a way no one else can. The tangled copper wire in the basement will become the spokes of a bike designed for outer space. The 2 by 4 on the porch with the pulley and rope will serve as the support for the elevator of his sister’s new house. I see none of these possibilities in these items,  but, as he points out to me, I’ve got about a hundred skeins of yarn stored in my closet that I envision as blankets and sweaters.

It is the need to create--to DO something--that helped Allen come to terms with his father’s death last year. While his brother and sister mourned in more conventional ways, the additional synapses in his neurotypical brain provided him with excess information. He needed to see for himself that his dad, no matter how much he wanted it, was not coming back. I think of it like reading an encyclopedia that has no index. Allen doesn’t know how to pare the input down.

I’ve come to understand my son and his different way of looking at life. I, too, can be flexible. 

“I don’t know where the gray and black pointy thing is,” he tells me, “but you can use mine.” He obligingly brings me the black handled pointy thing from his Dopp kit, used to clean his razors. Resigned, I wash it in hot water, pare my potatoes, and hand it back to him. He watches me carefully, making sure I do not slide it into the utensil drawer. 

“Thank you, “ I say.

“Anytime,” he says before he carries it upstairs. “You can use it anytime. Just ask.”

I smile as he leaves the room. On my way home from work tomorrow, I will stop at the Family Dollar Store and buy a new pointy thing, perhaps red. I will stow it among my baskets of wool and mohair and cotton on the shelves of my closet, a place Allen never goes. He, poor thing, cannot see the possibility of creations among the rainbow colors.

He sees only yarn.

Voices from the Edge: Handle with Kid Gloves

It was the White Rabbit returning , splendidly dressed, with a pair of white kid gloves in one hand and a large fan in the other: he came trotting along in a great hurry, muttering to himself as he came, "Oh! the Duchess, the Duchess! Oh! won't she be savage if I've kept her waiting!"

—Lewis Carroll, Alice's Adventures in Wonderland, 1865

Allen has pulled a shopping cart from the corral and tied our market bags to it. He adjusts his face mask and prepares to push into the market. I stop him with a touch on his arm.

“Remember what I said about the gloves?” I nod to the heavy gloves he has been wearing for the last two days as we worked on the yard, clipping bushes and clearing up the debris from many winters of neglect.  

He shakes off my hand impatiently.  “What?”

I put on a smile. “I asked you not to wear those work gloves in the store because you’ve been using them in the yard. They are full of dirt. We don’t want to spread anything.”

His outburst is instantaneous. “Then I can’t go in!” he says loudly. A couple of people turn in our direction but after years of mothering this autistic adult, I know it best to just ignore them. “I need to protect my hands! The CDC says so because of the virus!”

I speak calmly, my mind exploring alternatives. “You could put plastic bags on your hands, the ones they have for the vegetables.”

But my son is adamant. “NO! I have to wear gloves! I have to!” I fear we are bordering on a meltdown, the last thing any mother wants in a public place. And at 6 foot 4 inches, Allen’s meltdowns can make others wary. 

“Okay,” I say to him. “We’ll just go home and get a clean pair of gloves.” He is mollified for a moment but becomes agitated once back in the car.

“I just have other things to do!” He says. “I don’t need this!” He is taking short breaths, hyperventilating, and begins a series of grunts and groans, verbal stims.

“I know,” I say as I pull out of the parking lot. “It’ll just take a few minutes.” I keep my tone light. No pressure. All is well. The more I believe it, the more Allen will, too. 

He is silent for a few minutes, slapping his hands against his thighs, but his breathing is becoming even. I can almost feel the fury leaving him as he sinks back against the seat.

We are two blocks from home when he speaks again, his voice quiet and regretful.  “I hate when the beast in me comes out. I don’t like it at all. I don’t like to act that way.”

“I know,” I tell him. “None of us like to get mad.” As Allen has gotten older, he has gained more control of his meltdowns. They are now few and far between.

“I really try to have good intentions,” he tells me. “Like helping you shop and do the yard work. But then things go wrong. And I feel like a beast. And I just want to roar and I feel  like I could just, like, eat the whole world.”

Lately, Allen has been able to verbalize his feelings more clearly and be open with them. I am proud of how hard he is working at it.  “But you knew how to control it,” I tell him. “ You knew what the problem was and you told me.”

“And you solved it,” he said.

“No,” I tell him. “You solved it. You knew what you needed and asked for it.” I shrug. “I just happened to be smart enough to buy several pairs of gloves.”

We pull up to the house. I take a moment to admire the work we have been doing. The overgrown rose

bushes are now trimmed, the ground beneath them covered with mulch. The bushes on the hill are sprouting the little yellow flowers that were hidden under dead leaves. It has been a long, long time--years--since I have had time to give to a garden. I wonder briefly what Ron would think of the outside now.  I go onto the porch to get a clean pair of work gloves, passing the little stone I have placed by the front steps. “ Goodbyes are not forever, goodbyes are not the end. They simply mean I’ll miss you, until we meet again. “ I return quickly  to the car and hand the gloves to Allen. He puts them on and seems happy with them. 

“You can use these for market gloves,” I tell him. “We’ll wash them each time.” He nods and turns his hands

over, stretching his fingers. Sensory issues are a problem sometimes, but the gloves seem to be passing

the test. 

Unexpected Blessings: Voices from the edge

My son is in a hurry to get the marketing done because I have promised him Wendy's for supper. He races around Save a Lot, gathering the things we get every week: pizza, chips, soda. I take a more leisurely approach, pushing my cart up and down every aisle as I peruse my list.

"Do you know where the baking powder is?" asks an elderly woman in the baking aisle.

"Right here," I say and reach up on the top shelf to get the item. I hand it to her.

"Don't know why they keep changing things around," she grumbles and I just smile. Just then, I see Allen barreling towards us, his arms full of the microwave sandwiches he likes. He dumps them unceremoniously into the cart and rushes on past. My shopping companion holds her hand to her chest.

"Mercy!" she says. "What's wrong with him?"

I turn to look at my son's retreating form, trying to see what she sees. To me he is just my youngest child, an adult on the autism spectrum. But I know the wild hair--getting Allen to comb it is an issue most days--and the brusque attitude is often seen as others to be strange. Add to that Allen's tall stature--all 6 feet 6 inches of him--and some people do feel threatened by him.

But I know Allen. I know him to be gentle and kind and often confused by the world. I turn and face the woman next to me. "That's my son," I say gently. "He has autism."

"Mercy!" she declares again. "You poor thing!" she pats my arm. "To have a mental child like that!"

I take a deep breath. I could smile and walk on. But even though it might fall on deaf ears, I make a decision to educate. I am, after all, a teacher as well as a mother. "His brain works differently than some," I tell the woman. "There is nothing wrong with his brain. It just takes him longer to understand things. And right now," I lean in towards her conspiratorially, "his mind is focused on getting a burger at Wendy's for supper."

"Still," says the woman, her voice a bit unsure now," must be a burden on you."

"Not at all," I say. "Allen and I understand each other. We have a routine. He gets the things we need every week." Just then Allen roars past us again, adding a container of cat litter and a box of trash bags to the cart. He barely pauses as he rounds the corner.

The woman pats my arm again. "Bless your heart," she says.

"You know" I tell her as I begin to move my cart away from hers, " many people are autistic. You might even know some. One in 54 people has some form."

"Really?" She seems surprised. "Are they all like..." she points, "your son?"

I shake my head. "No. Some cannot talk. Some function so well you might not even know they were autistic." I move down the aisle. "Have a nice day," I say.

What's wrong with him? I am sorry to say that I hear that question a lot. Allen doesn't always look like others, or act like others. It takes an intense amount of effort on his part to behave the way society expects him to. His father's funeral a few months ago, for example, required Allen to expend enormous effort to stand by my side and shake hands. And helping Allen process his grief at his father's loss is an ongoing journey. "Autism grief is not neurotypical grief" is a phrase that is now engraved into my brain.

When Allen was born, he seemed to be a healthy baby boy. As the youngest of our three, he was content with very little; he seldom cried or fussed. His older brother and sister made up games with him in the starring role. It wasn't until Allen was 3 that we learned he had some developmental delays. Ron and I needed to help Allen in different ways than we had helped Dennis and Bonnie. He needed different methods of educations. And long with the developmental delays were some physical problems: A blood condition that produces too much ammonia, and an inability to produce salt. he gets dizzy spells sometimes. The diagnosis of autism did not come until adulthood.


Did we ask why? I know Ron did. I know that the thought of a disabled child was troubling. Me? I was his mother. No matter what.

But the woman in the market is not unlike the people in John 9 who asked of Jesus, "Who sinned, Rabbi, his man or his parents that he was born blind?" (vs 2). Jesus responded, "Neither this man nor his parents sinned but this happened so that the works of God might be displayed in him."

Allen, and others who reside somewhere on the spectrum of autism or are differently abled, is a work of God. Others may not see it, but I know the gentleness that resides within my giant son. Each afternoon, he makes me a cup of tea so I can relax before dinner. Each night, he carefully double-checks the locks on the doors to keep us safe.

I am halfway up the frozen food aisle when I see Allen again. He grins at me and places a package of Tastykakes into the cart. "Almost done?" he asks. Now that the task is almost accomplished, he can slow down. Many who are on the spectrum, like him, can only handle one thing at a time.

"Almost," I say and put a few bags of vegetables into the cart. Just then I spy the woman from the baking aisle coming towards me.

"Don't know why they put the bread up so high," she grumbles.

Allen strides over to her. "Which one do you want?" he asks. "White or wheat?"

"What?" She is clearly startled. She steps back and eyes him warily. His hair is still wild, but he is smiling now. "Oh, wheat," she says.

Allen grabs the bag and hands it to her. "That's what my mom always gets," he tells her and moves back towards me. The woman is still standing there, holding the bag in her hand, looking at Allen as we walk towards the cash registers.

Works of God come in many forms. Some of them are unexpected. Some of them are a tall young man with wild hair and a kind smile.

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.