Voices from the Edge: Rules for Grieving


Voices from the Edge: Rules for Grieving

"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 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.

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