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.

My First Memory

My earliest memory was of my mother, watching our tiny black and white television. Transfixed by the drama of Apollo 13, her eyes burned wet and bright reflecting tense newscasters and rooms full of jostling scientists.  Her breath hitched as the command module splashed down in the Pacific Ocean. “Remember this, Lori. This is history.” I did not understand what was happening but longed to be a part of the world that did.  Although my memory of the event is as grainy as the black and white newscast, the sight of her flickering profile stays with me.

Perhaps this foreshadowed my future.  I am forever outside a privileged circle of simpatico, the last one to get jokes, to fathom motivations, to follow instructions. At least though, I am in the room, wondering.

Compulsive Pestering and My Autistic Child

boozle

This spring my son hinked my boozle.

After an episode of Curious George, he sauntered up to me and gave me a probing glance. In an instant, his hands leaped up to my bosom. “Hink! Hink!” he exclaimed as he honked my motherly bits.

I gasped in surprise. “It is not okay to hink mama.”

I lectured him on boundaries, explaining that a woman’s bosom is for feeding babies.

Our conversation devolved into an anxious personal space inquisition. My son wanted diagrams detailing a child’s age and allowable “hinking.” Our afternoon of graph making closed with chalk driveway charts. Local dog walkers lingered during their peregrinations for days.

Our afternoon of social instruction left me feeling victorious.  Appropriateness is a difficult lesson for autistic individuals, especially young autistic individuals.

A few weeks later, I chatted with Liev’s case manager, Crystalyn. She asked me, “What is a boozle?”

Perplexed, I questioned her until it became clear that “boozle” was his mispronunciation of “bosom.”

Liev had been annoying teachers with his “hinks.”  I explained the situation and told her my strategy was to ignore him and redirect him to shoulder squeezing.

Sporadic outbreaks of boozle hinking peppered the remainder of the school year.  Liev hinked most when he felt ill. I could gauge a fever by hinks per hour.

Summer vacation detonated the atom bomb of boozle hinks. My son became a tiny, diabolical Benny Hill. His twitchy, pinchy fingers bedeviled me so much I expected to hear Yackety Sax on a loop in the background.

Benny

The fact that my usual tricks failed shocked me. I asked for advice and tried new methods. Every intervention failed or only worked for a single day. I did not understand what I was missing.

Eventually, my husband and I concluded that Liev was trapped in a “hinking loop.”  Anxious about summer changes, Liev became obsessed with hinking.  Squeezing or poking me relieved an internal pressure.  Even though he had firm and consistent consequences, with enough anxiety he’d hink until his fingers dropped off.

I needed to be patient, ignore, and re-direct.  I gritted my teeth, nevertheless.

Weeks flitted by and hinking diminished as our summer schedule became routine.

Then one day, my husband took Liev out to pick flowers. Egor helped Liev fill a plastic shoebox with daisies. With abundant joy, Liev presented them to me. “Oh!” I gasped. “What lovely flowers! You are the sweetest little boy on the planet!” I extended my arms for a hug. Liev took three ecstatic hops toward me and poked my bosom. “Hink! Hink!” he said sweetly and hugged me.

My husband and I laughed aloud. A loving glow shined in Liev’s eyes. His hinks were indeed neurological hiccups, pint-size impulsive bursts of energy generated by a brain completely thrilled and overloaded by giving his Mama flowers.

Digital elements by Sherrie Drumond. Benny Hill is from “The Ultimate Benny Hill Album.”

The Mystery of the Thinning Hair

Countessa with Squid by Omar Rayyan
Countessa with Squid by Omar Rayyan.

Ah, to possess tentacle hair!

With my luck, one side would still be limp and scraggly. Could I comb my tentacles over to one side to cover up? No. This is my latest strategy, however.

I part my hair to the side. I’ve worn it that way for years. When my bangs misadjust themselves, a toss of my head rearranges them. What people who don’t live with me miss, is that I toss my head interminably throughout the day.

The frequency and intensity of head tossing are directly related to two things—anxiety of course, and the length of my bangs.  To keep my head tossing muscles from becoming too prominent and glossy, I schedule bimestrial hair appointments.

Our family stylist, Kira, is a blessing. She has a brother with Asperger’s, so she is very sensitive to Liev and me.  She entertains and soothes Liev with the flair of a favorite aunt.  On a particularly twitchy morning, she hauled out the big book of hair colors for me to peruse. She knew I would savor the nylon expanse of color.

I feel so comfortable with Kira, I shared my worry over the problematic right side of my head.

My hair has a fine, European texture.  One woman told me I had “Disney Princess” hair. This is the most laughable thing I ever heard.  My hair is soft and silky—but it is distributed in a bizarre manner.

The back of my head is a tropical tangle and the left side is modestly dense. The right side, however, is thinning badly. It isn’t quite Yoda-ish, but at the rate my hair is thinning, I am concerned.

Kira suggested I might be doing something specific to thin my hair. Do I sleep always on the same side? No.  Do I twist or tug at my hair? No.

Trichotillomaniacs pepper our family, so I took note. I might pursue a pimple with lusty gusto, but I don’t pull out my hair. We decide to style my hair parted to the left to normalize my appearance.

As she finishes my ‘do, she encouraged me. “It will occur to you, Lori. One moment you will be doing something…” She paused and tipped her head to the side. Dramatically she swooped her fingers through her hair. “And you will realize what is thinning your hair.”

In an instant, I realized– that is what I do!  I am a compulsive hair-raker.  I must rake my hands through the right side of my hair three dozen times a day. I never connected my quirk with hair loss. I don’t fuss with the left side because I am right-handed. I would not reach across my field of vision.

Kira solved a grand mystery. I’ve had periodic thinning for years. Under stress, I rake manically. Raking is a tic of sorts, a nervous re-adjustment.

Why would anybody rake their hair into such a state? Well, you would pull up a pair of sinking baggy pants. You notice the sensation and hike up your trousers. If the sensation is too annoying, you get new pants or a belt. I am stuck with my scalp, so I might consider a headband.

Ha.  I reckon I’d wind up with a little bald ring circumnavigating my head, so perhaps not.

Heaven help me, I might need to use some self-control!

The portrait is “Countessa with Squid” by the incredible Omar Rayyan.