Tourette’s Syndrome and Autism: How Diagnosis Helped Us

Change

Change can be an enemy. Change disorganizes, disrupts and confuses.  Change can also refresh and relieve.

For over a year, Tyoma has exhibited strange and inconsistent behaviors that did not respond to conventional or intuitive interventions.

At times T is super-charged– as if he inhales pure electricity and discharges it in torrents of motion and sound.   He hops, skips, twists, shrugs and nods. Even in sleep his body twitches.  He snorts, grunts, clacks, chomps and spouts random words.

In our household, this seems rather normal.  Papa and I exhibit motor idiosyncrasies: I am seized by bursts of frenzied finger snapping while Papa smooths phantom wrinkles out of his trousers.

Moreover, our house is rarely quiet (despite the name of my blog). Someone is always making noise. My husband trains his voice with strange and exciting vocal exercises, which I echo with delight.  Orchestras of self-soothing sounds emerge from me as I cook, clean, or fold laundry.

Riot Week in the House
More like “Riot Week in the House.”

It was natural to assume autism explained all of Tyoma’s energy and sound.  We, his parents, brim with energy and sound ourselves.

When the cursing began and did not end, we knew something was different. This final clue sent us seeking answers. Now we have some and change is afoot.

November 9, Tyoma was diagnosed with Tourette’s syndrome (TS). His motor and phonic tics are classic indicators.  Cursing—the Tourette’s symptom the media hypes—is actually uncommon. Only 8% of Touretters curse involuntarily.

Maybe not every mother says, “Yay! It’s Tourette’s,” but I feel like it.  I fancy baking my son a Welcome Farty cake to celebrate.

Welcome Farty!

By identifying TS, our family’s quality of life improves—especially Tyoma’s.  Neurological conditions like Tourette’s require unique and specific behavior management plans.  TS tics are not the same as garden-variety mischief.

In fact, we used many TS behavior strategies intuitively over the past year. When I learned that ignoring tics relieves their severity, I was buoyed.  I can dismiss fears of our parenting creating unrelenting cursing and shenanigans.

We do not intend to “beat” or “defeat” Tyoma’s TS.  Tourette’s is as much of him as autism. We will focus on solutions and insights to promote quality of life for Tyoma and our family.

Come to think of it, this is not as much change as I first expected!

Bad Language: Summer of the Swearing Schoolboy

Bad Language: Our Household History

Compulsive Pestering and My Asperger’s Child

The Monkey-Shower Dream

Could It be Tourette’s Syndrome?

Maintaining My Poise

A few weeks into summer vacation, Tyoma came home from an afternoon of swimming with a new word: Fart.

Coincident with this, I was no longer “Mama.”

My son christened me “Farty.”

I should have ignored him, knowing attention feeds certain behaviors–but I love to lecture. I preached appropriateness and cultural norms. I discussed disrespect and hurt feelings. I diagrammed charts to organize his behavior.

Tyoma attended solemnly and gave every indication of having learned his lesson. Victorious, I gave myself copious pats on the back–my child would never call me “Farty” again.

The next day at breakfast, T blurted out, “Get me some juice, Farty!” I reeled, dumbstruck. He shook his head, “Uh-uhn, Mama.  Mama, may I please have some juice?” I examined his little face for mischief. None. I complimented his manners and made a mental note.

Three days later, the stupids arrived. Mostly, it was just the word “stupid” by itself, but not always. I heard a few “Stupid Mamas” and plenty of “Stupid Farties”.  Appalled, I wondered where this came from.

My encyclopedia of behavioral interventions failed to eradicate offensive words. Recalling his boozle hinking episodes, I decided to ignore him. This choice reduced both our anxiety, yet I was still awash in a sea of stupids.

Midsummer brought the shut ups. No amount of lecturing, positive reinforcement, or consequences helped. In fact, everything I did worsened the shut ups. He began shouting “Shut up!” at the TV and computer. He whispered “shut up” to himself as he read. And of course, there was “Shut up, stupid Farty,” addressed to me, or the cat, or Papa.

Ms. Michelle

Bewildered, I scoured forums, took data, and read books. At last, I consulted our respite provider, Michelle.  A blessing from the start, Michelle is a skilled school psychologist, savvy to all things autistic. Many of Tyoma’s baffling behaviors, she explained, stem from compulsions—irresistible urges.
If a sainted spot in heaven awaits wise and peppy school psychologists, the angels have a berth just for Michelle. Some form of OCD must underpin Tyoma’s behavior, since OCD-specific interventions remedied many behavioral incidents.

OCD should not be a surprise. It thrives in our family.  I take a dash of meds to keep me from repeatedly checking the front door at night.  Nonetheless, after scrutinizing three childhood OCD books, I realized that OCD and autism did not explain our behavioral issues.

Tourette’s syndrome and autism, however,  matched our experiences with uncanny accuracy.

To be continued…

Bad Language: Our Household History

Marriage
I am a child of the seventies.  My generation listened as profanity switched from absurdly scandalous to cutting-edge conversational. My parent embraced the zeitgeist with humor and creativity.

Yet, I live in a home free of rough words.

I do not curse because I married a Russian.

In Russia, women and children never use profanity. To do so would be as taboo as using ethnic slurs in our culture—offensive in the extreme. In seventeen years of marriage, my husband’s worst oath has been “The devil can have this as a gift!”

It took me a month to temper my language around my new husband. A year later, my brain re-wired itself so much that my own mother scandalized me. Seventeen years later, my Mom re-wired her brain for her blushing daughter!

Every household is a miniature culture, with its own customs and prohibitions. Our home honors Russian tradition and my injunction against personal insults.  We do not say “stupid”, “idiot,” or demand someone to “shut up.”

So, this summer, my brows lifted when I overheard Tyoma’s cartoon du jour, Phineas and Ferb, feature a shut up-stupid shouting match.

I didn’t ban the cartoon outright. He will hear the same words at a playground or at school. At six, Tyoma seemed ready for a life lesson on bad language.

Heh.

House of Curses

Actually, I was the one who learned a life lesson about bad language.

To be continued…

Social Media Anxiety

Social Media Axiety

Social media is a blessing to me. I interact with few people in real life, so my internet acquaintances give me a sense of companionship and community.

Yet, I struggle with social media anxiety. I gaze at glowing pages of insightful words.  I read and react—internally.

I long to respond, but my thoughts are like a shattered vase. The effort to restore the vase, splinter by splinter, dazzles me.  I return to an easier task, usually a visual or intellectual project.

Why do in flit in and out of the social media scene?

Part of it is diminished social need.  I don’t reach out, I draw in. I reflect, dissect and recharge.  My social interaction capacity is finite and largely consumed by my family. Excess mental energy fuels forays into Twitter, Facebook, and blogdom.

My intolerance of change also impacts my participation in social media. Small events disrupt my equilibrium, fueling anxiety. I freeze up. Tyoma’s trip to the emergency room left me with a few quivery, obsessive days. Larger occurrences interrupt the flow of my life—I must use all my strength to manage my responsibilities. Little remains for cheery comments or thoughtful dialogue.

Schedule changes, unexpected home maintenance, visits from relatives—despite my reaction to them, these are small changes.  A profound change impacts your thinking and outlook. Tyoma’s autism diagnosis was a profound change.

And now, we face another prodigious change. Like Tyoma’s autism diagnosis, this will transform our life in wonderful and unexpected ways.  I am not managing my online relationships well while I wrestle with new information.

Tourette's Awareness

I shall return, soon.

 

XO

Lori