Tourette’s Syndrome: Why I Say Bewp

Bewp Sunny

I have been bewping for the past few weeks. Bewp–a nonsense word–roosted in my brain weeks ago. This simple syllable bursts out of my idle mouth and mind continuously.

Bewp.

Why do I say bewp?

Imagine an insufferable itch. Once you say “Bewp”, it goes away.

So.

Bewp.

Bewp Cloudy

When Tourette’s and autism are part of your life, vocal tics can be quite jolly but not everyone else is in on the joke. And it is a joke, an “in thing,” a single word that word sets neurons afire like Shakespeare or the catchiest tune.

Bewp.

Think of a song, haunting you long after you heard it, and condense its melody into a word. This is also bewp to me.

Bewp.

Bewp pleases my mouth muscles. Which delights more, the b’s bilabial stop that feels like a kiss? The yodeling long u? Or the plosive, spitting, p? All three, please! A circus for my teeth and tongue.

Bewp.

With proper intonation, bewp conveys every emotion. Bewp is a festive word to punctuate the joy of sunny days and happy feelings.

Bewp is also a moody, melancholy, utterance; fit for rainy days and misty mornings.

Perhaps bewp is most of all a nighttime sound, filling my head instead of sleep. I stare at the dark speckled ceiling whispering “Bewp bewp bewp…”

Bewp Nightime

So.

This happened last night.

My husband dashed down the stairs with quick thump-bump footsteps. He swished to the patio door and flung it open with action-hero intensity. “Bewp!”  I said.

SSSSSSShhhhttT!” he shushed me. I gasped. I have not been shushed since my porpoise squeaks became problematic during Wimbledon nine years ago.

His scolding stunned me silent (but I thought, “Bewp?”). Why, I asked, amidst an ocean of my odd noises, did this bothered him? He said he simply heard one too many bewps today and he wanted me to stop. He huffed up the stairs as I laughed and laughed. Tears streaked my face,  my stomach cramped. Asking a Touretter to stop a tic is an exercise in ironic process theory. Try not to think of a pink elephant.

Bewp, husband, bewp.

I dried happy-silly tears, reflecting on my son’s parade of strange and repeated vocalizations. Bewp is to me as “Bim bim bim” is to him (or “Angus pow,” “Moo moo MOOO,” and “Porta-potty banana”).  Some word or sound will always hijack our voices.

Tomorrow, bewps and bims will continue, and so will my sanguine husband’s cheer, for our home is an accepting one. Everyone deserves a safe space to be their unique selves. So, if your child says the same thing over and over, be calm. Accept. Those utterances may provide comfort, relief, and delight in a way you do not understand.  Nurture self-confidence, for we are not all made the same and that is a blessing.

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!

Summer Onset Depression

June Depression

I am part of the less than 1% of the population affected by “reverse Seasonal Affective Disorder” or summer onset depression.  I find summer days insufferably long and empty.

Doctors can’t identify what causes reverse SAD, but theorize that heat and extended sunlight hours are likely causes.  I am a native New Mexican and veteran of months of 100+ degree weather.  I attribute my troubles more to humidity than heat.  Most of all, I blame long summer days.

In New Mexico, my June Blues resembled a lasting case of the blahs. School was over, so I rented movies by the armful.  Watching movies and reading books for six weeks seemed like an awesome way to spend half the summer. Besides, the snakes were too active for rock collecting or desert adventures.

White Night 2

I experienced my first unmistakable summer depression in Russia. I assumed my new marriage, new country and new language overwhelmed and exhausted me.  The contribution of heat and unremitting sunlight were unconsidered factors.

On my honeymoon, I collapsed.  The air was crisp and fresh as Egor and I sailed north of Saint Petersburg to picturesque Vaalam .  Daylight glowed incessantly. Surrounded by pastoral riverfronts and whimsical Karelian cottages, I should have explored miles of coastline.

Instead, the white nights stupefied me. The sun scraped the horizon, casting the land in a hazy twilight.  Like an over-exposed Polaroid, the world was bleary, bleached, and glazed with an unnatural film.

Disoriented, I slept for most of the next two days. I assumed some mysterious northern illness incapacitated me, when actually the culprits were depression and sensory sensitivity.

whitenight

One of our white nights.

After two blinding summers in Moscow, Egor and I moved back to New Mexico. I welcomed the darker, longer summer nights.  My seasonal doldrums persisted, overlooked.

Moving to New Hampshire, my June Blues emerged conspicuously.  Although our visible light lingers only 90 minutes more than in New Mexico, some sensitive neurological pathway is disturbed.

June’s eight p.m. sun feels like an unsavory protuberant eye, leering at me with wild diurnal thoughts. This gaze is as disconcerting as a nude stroll in a crowded, but hushed stadium.  So, I climb into bed, toss a black sheet over my head and watch movies on the laptop.

My blog, Tumblr, Facebook, and Twitter have fallen silent. I have not finished reading my dear friend’s novel.  A weekly shower is a major goal.

June Blues 2

This is not a pity party, however. Despite the electronic vanishing act, I manage my family responsibilities with aplomb.  I shop, clean, cook and vacuum.  I water colored twelve thank you cards for Tyoma’s awesome treatment team.  I even put up bookshelves!

Solstice means the June Blues will be behind me.  I await you, August Idylls!

ETA: This is a revision of an older post. I still feel the blahs, but daily schedules have helped me stay organized and busy, thus more cheerful. Heat and light can impact many on the autism spectrum, especially those with co-occurring Tourette’s  syndrome (heat exacerbates tics). Help yourself and autistic loved ones by boosting structure (schedules) and encouraging the pursuit of special interests.

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

Celebrating My Mother: She Can Fix It!

She Can Fix It!

I knew it was January because another car engine sat in our living room.

After the excitement of Christmas faded, my restless mother decided to rebuild our 1970 Grand Prix. She didn’t have a shop or a mechanics education, but she did have a library card and a neighbor who would answer countless questions for a case of beer.

Mom’s fascination with mechanics began with an old gasoline powered washing machine. At six, she disassembled the monstrosity and stacked the pieces together in the most sensible arrangement she could think of.  When she reported her experiment, her irate father insisted she put the washer back “the way she found it.” Mom assembled the pieces more convincingly, and plotted her next mechanical adventure.

In the 1970s, the family passion was underwater photography. Factory-made underwater camera housings never satisfied Mom. She had no tolerance for poor design or awkward functioning.  To meet her specifications, she modified every camera, strobe, and battery pack she came across.

Consequently, our guest room housed projects, not people. Spread on the floor, our good sheets hosted O-rings, tiny bolts, clips and mysterious metal bits. The arrangements seemed haphazard, but Mom knew if anything was out of place. Once, I tiptoed across one of her projects, lodging a teeny screw between my toes.  I tossed it back on the sheet absently. Three days later, Mom advised me to hand her future wayward parts.

Mom and the Engine

In the mid-1980s, a series of hurricanes wiped out my parent’s favorite diving spots, requiring them to economize for more exotic trips. This meant long boring winters for my mom. With no exciting place to go or camera gear to tinker with, she turned her eyes and hands to auto mechanics. For most of the eighties, engine re-builds swallowed late winters and early springs.

One year, Mom decided to rebuild our 1970 grand prix Pontiac. This was to be my car.   Some kids got junkers or fancy sedans. My mother built me a racecar–a 455 cu in (7.5 L) V8 with a hot cam.

The Pontiac turned into a family member before I ever drove it, settling itself in our living room.  Its metal and grease smell permeated our house in a pleasant, friendly way, like the subtle cologne of a favorite aunt.  On windy March days, curing silicone gaskets gave off a vinegary odor, reminding me of Easter egg dye and spring holidays.

As spring ushered in desert wildflowers, I helped out, holding casings or pumping molybdenum lubricant into joints. Mostly, I watched or poured the occasional glass of wine.

One glorious April day, quite close to my birthday, the neighborhood assembled to celebrate the placing of the Pontiac’s engine. Champagne filled our glasses while our loving neighbors popped the tops of Budweisers.  Sputtering to life amidst cheers and whistles, we christened the car “The Blue Bomb,” since the engine rumbled “Baa-bomb—baa—bomb—baa–bomb.”

1970 Grand Prix

The occasion was momentous enough to warrant a visit from Dad, who famously despises social gatherings. Nevertheless, he entertained a cluster of senior ladies for a full twenty minutes, before stoutly shaking hands and excusing himself.

Mom, the guest of honor, discussed automotive mechanics until her companions became uncivilly inebriated. The balance of the evening was spent at the kitchen table, nibbling nachos with wives and daughters. The specifics of these conversations are lost on me but I can recreate the mood in a flash.   The atmosphere was convivial; a feeling of warmth and acceptance united the women around the table. Mom was the neighborhood Rosie the Riveter. “She can fix it” became “I can fix it.” We all sat a little straighter, spoke a little louder, planned a little bigger.

A week after the engine-starting, Mom, Dad, and I took the Blue Bomb on its inaugural drive.  Mom planned the maiden voyage with precision. A new engine must “settle in” through a complex combination of long distance driving and oil changes.

We drove to Gallup, NM and back. Dad followed us in the family van, filled with such a quantity of tools that care was taken to distribute their weight equally over the vehicle’s axels.

Windows down, we zoomed across the weedy, flowery desert. As we approached Truth or Consequences, New Mexico, Mom opened the engine up further, tearing along at maximum speed to seat pistons and O-rings. Toes tightened and the Pontiac resonated.

As sure as Vikings exalted the majesty of the open water in their longboats, my mother and I embraced our own frontier–a car speeding amidst a sea of desert flowers. A future of possibilities swam before us; we can fix it resonated in our ears.

The Fan

A Sunrise for Mom

A Birthday Wish

Dark Nest

Follow

Get every new post delivered to your Inbox.

Join 4,620 other followers

%d bloggers like this: