From Family Stories

Losing a Pet in an Autistic Household

When our beloved seventeen-year-old cat was dying, Tyoma, our autistic son, reacted thus:
“Oh. So, then we’ll get a new kitty.”
No emotional depth. No concern. No sadness.

This did not fool us.

Kitty Pearl filled our son’s daily imaginings. Wobbly scratching posts and sinister-looking grooming contraptions were built in her honor. He wrote her sentimental “I-love-you-kitty” letters and taped kitty-centric schedules near her water bowl. Homemade Kitty Forts stretched across rooms and cluttered staircases.

Kitty Portal

Then there were lists. Page after page of numbered instructions pertaining to the cat:

  1. Pet kitty gently.
  2. Add ice cubes to fresh water.
  3. Brush with the fur.
  4. No pestering.

Tyoma needed to organize his interactions with Pearl, not just to remind him of his duties but also to cope with the delicious and abhorrent impulse to pull her tail.

Pearl’s declining state preoccupied Tyoma later that evening. He spread inky equationed papers on the bed and announced that his calculations showed Pearl would live until August 4, 2014. Propelled with anxious, hyperkinetic energy, he expounded: “The next day (hop), Pearl will be cured (hop) and returned to live with us forever (hop, flap, twist, jump).” I nodded and replied, “I hope so.”

The Sunday before Pearl passed, Papa suggested something different for their weekly project. He asked Tyoma if he would like to build Pearl a casket. Tyoma’s face whitened. “No burial,” he said, “Cremation only.” Within ten minutes, an atomic autistic meltdown consumed him. Books and tears flew. A hole in the woods behind us was too dark and ugly for her, he howled.

After an hour of outcry, he vanished into the computer room, asking not to be disturbed. He resurfaced with the creation to the left.

This Boardmaker sheet is a window into his mind. It translated the enormity of Pearl’s kidney failure into something concrete and measurable.

Like other autistics, he needed to anchor to the tangible before venturing into the realm of emotion.

Every few hours, he filled out a new worksheet and tacked it to the refrigerator. He helped her the way he knew best—with discrete bits of information recorded on paper.

We held a vigil for Pearl on her final day. Tyoma read her his favorite stories as I stroked her. He addressed her in the same sing-songy voice I reserve for sick days and jarring injuries. His imitation of my soothing strategies struck me. Autistic children retain more than we realize.

Papa came home early to sit with Tyoma while I took Pearl to the vet.  We did not disclose the ultimate purpose of the trip, to keep departure subdued. None of us copes well with strong emotion.

An hour into the appointment, Papa told Tyoma.

My cell rang as I finished tucking a homemade blanket around Pearl’s inert form. Sorrow weighed upon me so heavily, answering required unexpected resolve.

Initially, I mistook Tyoma for a shrill, unhinged octogenarian who dialed a wrong number. His hysterical voice rattled my cheap crackly phone:

“I know about Pearl.  Are you going to cremate her or bring her home? Is she dead? Are you going to bring her home? Is she dead? Will I see her dead body? Will you burn her on the charcoal grill? Is she dead? “

He pleaded for details about the cremation: where would it be, how long would it take, and could he keep her ashes in his room?  I squeezed out appropriate answers and hung up.

The significance of cremation finally occurred to me. Remains in our home were less of a transition than burial, which held a sad and somber finality.

Tyoma continued to call for reassurance. My cell chimed cheery tunes as I exited the vet’s office. He left five more voice messages and sent six emails before I arrived home to hugs, tears, and many, many lists.

The day after Pearl died, I thought of her constantly. Her absence seemed inexplicably more powerful than her presence; like when I lost my watch weeks ago. I never realized how often I checked the time until my empty arm reminded me. How sad the stripe of skin on my wrist registered emptiness more than presence.

Tyoma processed his grief with questions. The first wave concerned the minutia of biological death, followed by a shower of spiritual inquiries. At last, he asked how I felt. A grief inquisition ensued.  As if he knew emotion collapses me inward, Tyoma tugged and pulled each word out of me, like an invasive, but beneficial medical procedure.

qs

He led me through sorrow as if he were an expert. Each question I answered took me closer to peace and acceptance.  Perhaps all little askers of questions are armed with the tools to heal. Great sadness can come from passing, but grief is not a monster to slay. Grief means a life changed yours.

Months have passed. Pearl lives on in Tyoma, but not in a dark, sad way. She inhabits his imagination, her ghost flits by windows and lingers half-perceived in kitty-fictions and Tyoma-escapades. We welcome her as an addition to the family. To be spoken of and remembered.

Pearl may have died, but she’s in my heart.

She’ll go when I do. Do what I do.

Okay, she died, but she’s in my heart, yeah!

Pearl may have died, but she is in my shoe.

She’ll go when I do. Do what I do.

Okay she died, but she’s in my shoe, yeah!

Adapting to Family Illness

My Home

I prefer not to post vague references to personal events–I either share proudly or maintain privacy. Nevertheless, events occur that require delicacy to balance discretion and disclosure.

Last week I put my mother in a skilled nursing facility. Mom had hid her illness to protect Dad and me, but when her health took such a sudden and alarming decline, Egor and I flew to New Mexico to help.

Mom wanted to stay home, but we could not honor her request and keep my father safe as well. She agreed to the changes we needed to make and is content in her new place.

I do not know how long Mom will be with us, but I do know how much Dad needs us. During their 50 years of marriage, they have rarely parted for more than a few days.  Dad says the house is painfully empty without her.

I call Mom and Dad daily. Every month I will fly out.  A Quiet Week in the House will continue as a creative outlet, but I am scaling back on interactions to focus on family.

Thank you for reading my posts and sharing your thoughts and well-wishes. I look forward to connecting with you more in the future. Your visits  mean a great deal to me.

Warmest wishes,

sig2

#Schizophrenia Revealed: Accepting Uncle Leopold

Uncle Leopold

Uncle Leo was the sort of fellow who didn’t care if Dad collected rattlesnakes for spare cash and curiosity. Dad, for his part, was unfazed by Leo’s tendency to hoard rocks and weave captivating, if odd conspiracy theories.  So, in in the late 1950’s the two graduate students roomed together.

Dad usually vanished over weekends, spelunking, exploring, or just being manly. He’d leave his destination with Leo, “to help the authorities find the body,” lest he didn’t make a timely return. Near Christmas, 1961, as Dad left for a weekend trip, Uncle Leo ignored his parting jests. Engrossed in cleaning his gun, Leo absently scuffed his feet at the kitchen table.

Dad blew in Sunday to find Leo still cleaning his gun–the floor beneath him scuffed to the concrete.

Dad packed up his unresponsive roommate for the three-day trip back to Ohio. Uncle Leo never spoke, never ate, only stared.

My future grandfather and ten inches of snow met Dad at the train station. Leo shivered as Dad handed him over to Grandpa, who said little but squeezed Dad’s hand tight. Uncle Leo went straight to the Athens State Mental Hospital—birthplace of the lobotomy.

Mental asylum

They treated his schizophrenia with two seasons of the “miracle drug” Thorazine before Uncle Leo bolted. He preferred flying saucers and CIA persecution to the blunted, stunted world of Thorazine.

Meanwhile, Mom and Dad met, married and moved an hour south.

Throughout the 70s, Uncle Leo visited with Mom and me.  Unannounced, he materialized in army fatigues, concealing weapons and clenching notebooks. Mom required Uncle Leo to unload his guns during visits. One time, he refused with prickly, whispered intensity.

Silence choked the kitchen. My feisty, outspoken mother did not insist. Instead, she hustled me out the back door to visit a neighbor. Dad came home soon after and had a quiet, brief talk with Uncle Leo. When I was summoned home, a weeping Uncle Leo apologized to me for making our home “a scary place.”

I felt sorry for Uncle Leo–a quiet talk with my Dad was much scarier to me than my uncle and a boatload of guns. His sadness and remorse gnawed on my brain at nighttime. I pictured his blotchy sunburned face, streaked clean by channels of tears.  Why was he so sad? What did Dad say? Was I somehow to blame?

My Uncle Leo

Years passed before I could grasp the fear which seized my mother, or appreciate how my father resolved the situation. Dad did not threaten Uncle Leo; he assured him he was safe. Our house was CIA-proof and Uncle Leo was not allowed to bring his fear into a house with his adoring niece in it.

And I did adore Uncle Leo. His arrival meant strange surprises: bottles of minerals with supernatural properties or odd homemade dolls with intricate embroidered faces.  Then, he told stories.  Amazing, bizarre and a little incomprehensible, his tales of adventure and persecution entranced me. His narratives left me so deliciously agog that my mother issued a disclaimer with every visit: Uncle Leo’s stories were just as fictional as Grandmam’s ghost stories.

In my mind, however, his sincerity outweighed Grandmam’s theatrics. I could imagine orange glowing ufos burning hieroglyphic notes in the desert sand to Uncle Leo, who had to scramble to find them before The Company agents did.

Two years after the gun incident, Uncle Leo quit visiting.

Home

Uncle Leo shot himself dead when I was fourteen. His story unfolded in yellow legal pads, crowded with capital letters.  The Company’s campaign of malicious activities culminated with his poisoning: they had infected him with cancer. His last despondent words were printed neatly in black felt ink: “Cleansers not working. Will not suffer.”

Poignantly, the medical examiner reported that the vast quantities of “cleansers,” (i.e. bone meal/vitamins) he ingested to purify himself contributed to the sickness he mistook for cancer.

If only we knew.

Clean-up was dreadful. Spooked by the quantity of weaponry, strange wires and eerie notes, local law enforcement minimized their efforts. Mom and Dad walked into a house floored  inches thick with newspapers. Military ammunition boxes lined the main hallways. Snatched from his highway job, sticks of dynamite cluttered his shower floor.  Hazardous chemicals and poisons shared shelves with bottles of aspirin and laxatives.

To add to the unnerving chaos, Uncle Leo had booby-trapped several rooms. My folks encountered a rusty shotgun half-heartedly rigged to a doorknob.  The kitchen housed a heavily chained refrigerator festooned with locks and seemingly wired with explosives.  Fortunately, the wires dead-ended in a closet. Mom and Dad, nevertheless, used a mattress to protect themselves as they pried it open. Inside, a large steel firebox secured a single head of cabbage.  Mom wept over the sadness of it for days.

A raw and painful reminder of his mental decline, the months it took to clear Uncle Leo’s property crawled by. Shocked by Leo’s disturbing living conditions, Mom blamed herself for not visiting him or questioning why his visits ceased. Dad sympathized and carried his own burden of guilt.  I reacted by destroying things when my parents weren’t home.  I hammered old electronic stuff in to bits and buried them in our backyard.

Broken Years later, Mom and I unearthed a demolition project. Mom laughed and said, “Ah, one of your Uncle Leo relics.”  I must have gasped, because she touched my shoulder, and added, “Everyone works through grief differently.”

I still think of him.  Uncle Leopold altered the course of my life.  I was not content to be an engineer or mathematician. I needed to know why some people were different and what to do about it. Some answers live in text, but most come from relationships with schizophrenic people.

My current views of neurodiversity and autism acceptance sprang from these connections. You can’t cure a person with schizophrenia, but you can give them control over symptoms that distress them. You can accept them as beautiful and whole people. Isn’t this what any person, regardless of circumstance wants?

Accept

In Praise of Fathers on the Autism Spectrum

Father's Day 2013

Today I spoke to my Dad for three minutes on the telephone to wish him a happy Father’s Day. Dad is notoriously uncomfortable on the phone, so we keep conversations short. It does not matter. Dad knows I love him. We can cram a world full of emotion into the tiniest sentence.

This brief exchange compelled me to examine fatherhood on the autism spectrum.

My Dad worked incredibly hard to support our family. Daily, he coped with anxiety and insomnia. To fit in with his co-workers he memorized jokes, stories and scripts.  He stuck to lists and written instructions for organization and daily living. Long before Asperger’s syndrome diagnoses reached our family, he handled life with aplomb.

fathers day 2
Dad, singing at a campfire.

I am deeply proud of my father.  Please permit me to generalize wonderful things about my dad to all fathers on the autism spectrum:

  1. They share with you. I once asked my Dad how to tie a knot. Heh. For the next three weeks we explored the history of knot making. Not only did dad personally show me how to tie dozens of fancy, complicated knots, but he gave their full background and a stack of illustrated books to study.
  2.  They will be honest with you. At six I asked my dad if Santa was real. A pained expression crossed his face. He said, “The spirit of Christmas is real.” I pressed, “So Santa’s not real?” He shook his head, “Santa is an idea. He represents the giving spirit of Christmas.”  Over thirty years have passed, but I remember the moment vividly. He respected me enough to tell the truth.
  3. Their enthusiasm is contagious. When my Dad talks about his favorite subjects, he glows. You not only see his incredible joy, but it washed over you. He loves spelunking and mineralogy. Ten minutes with him and you will dream about sparkling crystals and mysterious caves
  4. They are loyal.  Public school distressed me. Every four months or so, I crashed and missed three or four weeks straight. The school system so harassed my mother over absenteeism, that  a school administration meeting was scheduled so my father could attend. Wild-eyed and fearsome, Dad defended me so staunchly that the issue was resolved for the remainder of my school days.
  5. They will understand you. My Dad always had great compassion for my war with anxiety. When I was 25, I dropped out of college for the fifth time. Heartbroken, I felt like an utter failure. He took my hand and told me it would be okay. He promised me that as a family we would find a way to finish school and select an agreeable career.  In the ten years it took me to get my degree, he never begrudged my tuition. He accepted my struggles long before my Asperger’s diagnosis gave a name to my difficulties.

Adrift in a Sea of Viruses

Adrift in a Sea of Viruses

The hardest thing about transplanting from sunny, arid New Mexico to lush, seasonal New England is not the climate. The hardest thing about moving to New England is sickness. We are awash in a sea of viruses.

Boston looms forty minutes away. Germs must hold massive conventions there, planning annual pandemics and local outbreaks alike.  Our first year here we experienced an unparalleled infectious onslaught.

We arrived in New Hampshire during the special time of year known as “Norovirus Season.”  As sure as leaves drop in fall, digestive systems convulse in late February. Alone in a new city, without a car or friends to help, our inaugural bout with this awful illness left us weak and drained. We ran out of everything— soup, crackers, Gatorade, even toilet paper.  I vowed to never be unprepared again.  Our pantry shelves now creak under the weight of Sprite and Campbell’s soup.

On his first New England birthday, my husband became so ill that he almost saw a doctor.  Several days later I wound up in an urgent care since I coughed up blood. The bored doctor told me I strained my throat coughing and that I should drink fluids because I had a virus. My husband smirked and rasped, “Told you it was just a cold.” Eight weeks later, I smirked back—we had pertussis—whooping cough.

We were miserable. A pertussis coughing fit is like trying to gargle your lungs. You need to cough more than you need to breathe, and your lungs would feel much better on the outside of your body. The sensation is worsened by lying down.  We wound up sleeping in different parts of the house due to unsynchronized coughing spells. We endured convulsive coughing spells for months.

And then, we came down with H1N1…

Virus City

Seasoned New Englanders explained that the first year is the hardest for newcomers. Our bodies would adapt to regional bugs and we would healthy again in months. Heh.

Five years have passed and we still feel like the sickest family on the Eastern seaboard. Egor and I discussed this at length the other night. Why are we always ill?

Part of it is exposure. Big cities breed hearty immune systems. My husband and I grew up in hometowns with a surprising commonality—a scarcity of international traffic.  Seasonal illness was rare in my secluded and sun-drenched town. Likewise, even large Russian cities were isolated in the 1970s; few people had permission to leave the city, let alone travel worldwide.  Sickness was regional.

Culture also sheltered us from getting sick. Egor described how Russians responded to fevers. A doctor was summoned the moment a child had a fever.  He prescribed a week of bed rest following the last day of fever. Sickness seldom spread school wide. My mother reacted similarly, considering it shameful to send an ill child to school.

Time, however, changes everything. No one legitimately fears contracting diphtheria, typhus, or measles in modern schools.  Civilization mixes germs and people. Sheltering a healthy child from circulating viruses is counterintuitive.  School provides an immune system education as well as an academic one.

Tyoma will need it.

Our immune systems have changed, adapted to New England. We are sick less often, less intensely.  What hasn’t changed is our brains’ response to sickness. Under the thrall of illness, our self-management skills vanish. Ill health leaves me mentally hollow. I cannot focus, organize, or tolerate strong sensory input. I am impaired. Tyoma, at six, is much more so. A cold sends him zipping back toward toddlerhood. He loses his words and anxiety and irritability engulf him.

If I wished for one magic thing, it would be a steadfast plan for sick days. I accept the toll they take on my brain, but something is missing. Not a medication, or a diet, or a lifestyle change, but a pen and paper sort of thing–a way to use my gifts preemptively to tide me over on the ill days. I need the mental equivalent of my stash of sprite and toilet paper.

This is my grand challenge; to equip myself for the next round of viruses. Wish me well!

 

 


Norovirus Creations
Recovery from February Vacation
Losing the Battle
Summer of Infernal Illnesses