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 endure convulsive coughing spells for months.

And then, we came down with H1N1…

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

It’s three am. My son hollers from across the house, “Rest with meeeeee!”

He’s had another nightmare.

Tyoma’s sleeping mind conjures strange and spectacular horrors. In his dreams, bathtub drains have teeth and eat little boy fingers.  Lurid moons peep through his curtains with “frowns and smiles so tight it hurts to look at them.” Limbs detach themselves and ambulate to our basement for exercise.

Tonight, the kitchen trash became sentient.  Tyoma’s dream-self heard its irritable rustling a half a house away.  I rest with him and doze off until Papa wakes me at 7:00.

Most nights are like this.

Prior to last spring, Tyoma slept well, waking only when routines went awry. That May, his brain began cranking out bizarre dreams regularly.

Part of me wanted to high-five him–weird dreams are a rite of passage in our family. The other part offered its tenderest sympathies.

My childhood nightmare factory produced horrors similar to Tyoma’s.  In fact, my dreams resemble his so closely I suspect a genetic component.

My most frightening dream involved murderous dishtowels with superhuman strength. A pack of them stalked me in our living room, intent on smothering me.  When a ratty plaid terry towel flipped over the couch and found me cowering, I woke up screaming.

No alien or zombie filled movie will ever equal the terror of the evil dishtowels. Perhaps Tyoma and I fear the mundane turned sinister because we crave predictability. The unexpected petrifies.

As we weather Tyoma’s nightmare surge, I’d like to share how our family manages to sleep well despite frequent wakings.

Accept sleep disruption.  Nightmares peak for all children five to eight years old. Children like Tyoma who have autism and/or Tourette’s syndrome are more anxious and creative, causing intense dreams.   Dreams are to my six year old what diapers are to a baby, a natural part of his development.

Adjust the sleep environment. Most autistic children do not have the skills to unwind alone after a frightening dream, requiring someone to stay with them until they fall asleep.  Any way you can secure sleep is excellent, even if it seems peculiar.

A happy accident worked wonderfully for us: T kept rolling off his twin bed so we gave him the queen guest bed.  He now boasts two beds for nightmare recovery. A parent keeps him company as needed, either on the spare twin or next to him, according to need.  I don’t worry about where I sleep, so long as I do sleep and so does everyone else.  Each parent has a thousand waking, calm moments to teach a child independence. Let sleep be their respite.

Redirect fear. We do not discuss nightmares in the bedroom.  I give Tyoma a courtesy sentence to relate his nightmare, but I don’t let him elaborate. I distract with a snack, brisk walk, or story if he can’t stop talking. Children with OCD or autism easily get worrisome thoughts stuck, so I act quickly to prevent T from reliving his fear and losing an entire night’s sleep.

Use tools.  Some parents make “nightmare spray” or “monster traps” for their children. Others train their child to change the ending of their dreams. While Tyoma invents multiple nightmare fighting tools, he eventually asks, “What if it doesn’t work?” This frightening realization can swallow a child whole.  I advocate honesty and composure. We tell Tyoma, “You will wake up and someone will be with you.”  Sometimes we need to say this a few times, but it ends the conversation. Knowing he is safe and loved is the most powerful tool of all.

My Mother’s Day card.

 
Tyoma’s sleeping mind is as extraordinary as his waking one. One day, I will look back at the night he dreamed his eyes got stuck in one socket. I will recall our trips to the mirror, deep breathing, and reading fairytales until he fell asleep. I will cherish the moments we shared together when I was an all-powerful mother and conqueror of nightmares.
 
 

Roach Nightmare Protecting my son from sinister forces.
Autism and Empathy: The Yogurt Incident Kickstarter for my son’s nightmares.
The Monkey Shower Dream Processing confusion before our Tourette’s syndrome diagnosis.
The Circle of Life A strange dream for a preschooler.
The Red Frog An early nightmare.
Finger Dream Vanity vs. responsibility.

But we are greedy.

We want to change the world.

So we join the flourishing tribes of allies, autists, and kin striving to eradicate outdated myths.

I would like to share autism positivity from three perspectives of the autism spectrum:

• As the mother of an autistic child.
• As the daughter of a father with Asperger’s syndrome.
• As an autistic adult.

Here are some delightful slices of my life:
 

Tyoma

At six years old, Tyoma is a remarkable child. Most are struck by his intellect and vocabulary. Tyoma loves projects.  He embraces each one with unrelenting enthusiasm and meticulous design.  You can find him building LED displays or creating fonts on Fontstruct.  A language lover, Tyoma has taught himself Japanese hiragana and he can even read you  highlights from your Toyota manual. He is quirky in a charming, innocent fashion; endearing himself with unusual observations and out-of-the-box thinking.
 

Dad

Dad has always been a collector and an adventurer. Before marrying my Mom in the 60s, he split his time between working on his Ph.D.  (mathematics!) and collecting minerals. He even took a job in the Alaskan goldmines so he could add a few specific specimens to his treasury. After marrying mom, Dad became a collector of photographs. Their website hosts images from their trips to the Great Barrier Reef, Galapagos Islands, Caribbean, Gulf of Mexico and many other destinations.
 

Me

I blush to pat myself on the back, so I asked my husband to name my most positive characteristic.  Without hesitation, said “empathy.” I laughed. Empathy is a characteristic not often associated with autism.  He is correct, however. Autism boosts my empathy. Emotional regulation issues allow me to experience emotions intensely—I am a sensitive person. Processing the emotional states of others is hard work for me. Body language, facial expressions, and cues other than spoken words are continuously monitored.  This combination of effort and sensitivity opens my heart. I care how people feel and I long to nurture, soothe, and support.

Last year, I discovered Asperger’s syndrome and emotional regulation were connected. For many on the autism spectrum, emotions come in three flavors: happy, depressed, and anxious. Typical people detect a broad, nuanced range of emotion, whereas some autistic individuals possess emotional dials that click on grooves set at too happy, too anxious, or too depressed.

Happiness

My good moods have never been manic, but they are disproportionate. I’m rarely a little jolly; I’m full-on yahoo happy.  My tipping point for bliss is low. A new set of watercolors evokes a shout and a jig, which I try not to perform in front of the craft store staff.   Even when I eat, I am not “normal.” I am jazzed because these nachos are delicious!!!

My proclivity for cheer is a blessing. Despite other dysregulated emotions, I am grateful to bob in a mirthful sea.

Depression

Opposing happiness is depression. I equate depression with being tired. Not tired in an I-need-to-sleep way, but tired in an I-need-to-be-alone way.

This weariness is a murky, heavy sensation. Like a thick toxic gas, it engorges the limbs and stifles the mind. For me, this miserable state is indistinguishable from all other negative emotions.

In fact, I experience illness, tiredness, boredom, and depression exactly the same.   I only differentiate these conditions by how they respond to various interventions:

• Illness responds to rest.
• Tiredness responds to tea.
• Boredom responds to art.
• Depression responds to activity.

Each time fatigue grips me, the Cure List brings relief. It may be cumbersome, but the strategy helps me more than any diet, therapy, supplement, or medication. I advocate a list strategy for all who struggle with “big chunk” emotions.

Anxiety

While I cannot differentiate negative emotions, I can categorize a thousand types of anxiety. Perhaps my experience of happiness and depression are crude because my mental wiring is bound up with endless gradations of anxiety. Every miniscule discomfort and nagging worry enjoys its own specific register.  The unease of an unlocked door differs from the fretfulness of unsanitized hands.

Likewise, not recognizing someone I should know prickles my skin in a different way than missing an obvious joke.

My son, however, cannot discern anxiety from anger.  To him, all anxiety feels like anger.   I wonder how many “anger management” classes host similarly wired individuals.

Self-Acceptance

Literature concerning self-acceptance tends to ignore the greater issue of societal acceptance. A person who experiences emotions differently than the majority can feel isolated, especially when pressure is put on them to conform.  Emotions are our deepest, most personal gifts and the last place anyone should meddle.

I encourage spectrumites struggling with emotional regulation to pursue strategies to boost their quality of life. Keep a mood journal and look for “big block” patterns—that’s how I recognized that I experience negative states as “tired” and positive states as “really happy.”

Experiment with what helps regulation and document the activities that enhance wellness the most. After I’ve drank my tea, I kick-start a sluggish brain with some organizing (or spinning!). It pulls me out of a depressed day I would have confused with a sick day. And when I’m sick—Netflix!

I love floating through life with extra happiness.  I channel the mental zing anxiety gives me into worthy tasks. I still struggle with negative states but my tools work well. I accept myself.

We each can be our own master, our own specialist, notebooks and calculator in hand. Even when our brains muddle over feelings we can use our strengths as data gathers and pattern recognition experts to craft our own wellness. Meet life’s persistent challenges with confidence by mastering the strategies that work best for you.

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 device 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.

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.”

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 Birthday Wish

Dark Nest

Broader Autism Phenotype Quiz

WORTHY

We cannot choose our birth nor predict our health, intellect, or neurology. Even when born typical, mishaps can  snatch mobility and mental agility. Age propels us from acceptable norms toward frailty and infirmity.  Any one of us is potentially different.

Autistic people are worthy. Humble or grand, let our value be created by our actions and not by how well we match accepted norms and ideals.

The Dream

Six months ago, I dreamt I lived in a vast black basement and never slept.

My singular duty was to stoke an enormous and intensely hot furnace. I heaved mound after mound of dusty coal into the roaring inferno.  My back ached. My mouth burned with thirst. Yet, I shoveled on.

At intervals, I rested.  The sudden stillness dizzied me, as if I were falling asleep. Heat and light jarred me back to alertness.

I pondered the purpose of the inferno. Does it fuel a city? Power a massive factory? Or is this subterranean monster an entity of its own?

I waved away the thought. Work resumed in minutes. I needed a few moments of mindless relief.

I shoveled.  Unequivocally ravenous and implacable, the fire vaporized  fuel as quickly as I could provide it. I increased my pace. The walls of coal began creeping closer. I shoveled frantically to avoid being pushed into the flames.

I could not maintain this furious pace.

Should I make peace with my doom or continue to  shovel?

I woke up.

The First Interpretation

The struggle of fueling a voracious furnace resembles raising a twice exceptional child.

Forever vigilant, I juggle interventions for anxious, tourettic behavior. Today I dab balm on eyelids chapped from compulsive rubbing. Tomorrow I hide tomatoes and bananas under dishtowels.  Our home is a stage constantly reset to remove temptations. Everything is just so, to reduce spills, plumber bills and frustration.

Tyoma’s intelligence generates another kind of perpetual effort. Keeping pace with profound giftedness demands more than hiding scissors or stowing away hand soap.  Intellectual thirst requires mental fleetness, abundant creativity and cognitive endurance. Without stimulation, a gifted brain agonizes. Boredom triggers unedurable tension and restlessness.

I strive to support our son. Should my attentiveness wane, I fear I will be engulfed. Meltdowns,  intense emotions, and wild behavior disorient me. I fear I will fail him.

I secured these thoughts in a notebook. My legacy to Tyoma will not be an interminable online ode on how hard it is to raise him.

The Truth

A week ago,  I revisited my notebook. As I re-read my words, I realized the inferno dream was less about raising a twice exceptional child and more about my own struggle with twice exceptionality.

Long before Tyoma entered our world, I shoveled. I fed the fires of schools, university degrees, jobs and interpersonal relationships. I put forth enormous effort to maintain impossible standards.  At times, the furnace snuffled me in; blackening me into deep depressive spells.

No six year old holds me captive in a basement. I’ve always been here. And now I have company.

My dear, sweet, bright little boy grips a shovel in his hand. His furnace roars. I hope to teach him the finest shoveling techniques.  I hope to teach him to enjoy the radiance of his gifts without being gobbled up by his differences. Above all, I hope to teach him how to brush away the ashes and begin anew.

My six year old son has groused about Valentine’s Day since early last fall. He wants nothing to do with giving cards and heart shaped candy. His obsessiveness has been building to a frenzied climax.

I asked Danielle, our family caregiver, for advice. She has x-ray eyes when it comes to behavior. She also finds the perfect words to describe her observations. She rocks, in the most awesome way.

This excerpt from the email she sent me packs a powerful punch of wisdom. For anyone with a child who hates Valentine’s Day, this might explain why:

Tyoma has explained to me that he does not like Valentine’s Day.  I can understand this since it is based on social exchanges involving emotions that Tyoma is not comfortable with outside his family.

 Most kids at his age are “into” the valentine thing because they receive valentines…kids love to get mail and treats.  They give valentines mostly because they have to if they want to get some for themselves

 Since T has no interest in receiving valentines he has no motivation to give them.  Also, because T is so literal in his translations I can see how it would make him very uncomfortable to extend an invitation to classmates that show affection/love/or the term “Be My Valentine”.

 When you combine the abstract ideas (be mine, valentines, etc.), the fact that it is an emotion based holiday, and the requirement to socially interact on some level with everyone it does not surprise me at all that Tyoma would like to avoid the whole thing.

 In my opinion it is perfectly ok for you to allow Tyoma to opt out of V day.  Because he is required to appropriately interact socially every day, and for the most part he does…or tries to the best of his ability given the situation, I think it is enough for him at this age/stage of his development.  To ask more of him when he clearly is not interested simply because everyone else is doing it… isn’t really fair to him and in the long run may cause him to pull away more socially.

 When we talked about Valentines, T told me he was a serious boy, not a pink heart boy.  We talked about that being quite alright.  He wanted nothing to do with valentines as school (because he doesn’t love those kids… which is true).  We talked about him just thinking about people he really does love and just think about them on Valentine’s Day.  He agreed that the day wouldn’t be bad if he could just tell you and Papa about love and maybe give you guys a valentine.

Danielle

Yay!

Poor Tyoma fretted so much over the holiday, he hardly slept last night. His anxiety unleashed a torrent of tics, which vanished after a few hours with his caretaker Danielle. She planned a low-key cake eating event with his favorite drink orange-juice.

Even an anti-holiday can be good.

Thank you Danielle!

Eighteen years ago, I married a Russian national.

Six months later,  alone in our Moscow flat, I sweltered. Outside, smoldering peat fires ringed the city, intensifying the hottest summer in years. Open windows benefitted little when acrid smoke and automotive exhaust coated the apartment with visible grit.

Russian city life shocked me. Apartment complexes switched off hot water for half the year. Washing machines were rare and expensive. In fact, laundromats charged upwards of $20 for a modest load.  Naturally, I became accustomed to cold showers and shampooing clothes in the kitchen sink.

On this hot, lonesome day I decided to clean our sheets in the bathtub.  I visualized my husband’s surprise when he returned from the university to fresh, ironed bedclothes.

Heh.

It was a herculean effort. Linen sheets soak up an improbable amount of water. Each wet sheet weighed as much as a small child. Squeezing out water consumed most of the afternoon.

I reflected as I worked the sheets.  Marriage is one of the greatest choices in life. Even in a foreign country, whose language I did not read or speak, laundry took on a quality of romantic suffering.  Genuine misery could have been a real probability.

We chose marriage within months of meeting. Something seemed profoundly right about togetherness. As a woman with Asperger’s, misreading others is de rigueur. Circumstance blessed me.

I hauled the sheets to the kitchen laundry lines (anything hung outside collected soot from cars passing below).

Despite my best efforts to wrest out the water, the sheets dribbled lukewarm puddles on to the kitchen table and floor. The puddles required towels that would similarly need to be wrung out and dried. I laughed.

Life is like this: circular, ironic, difficult and blissful. I stood in the steaming summer kitchen joyous. I had the perfect partner to pass through time with.

My husband arrived late that evening and nearly fainted from shock.  It was a man’s duty to wrestle sodden sheets, he emphasised. I overlooked the subtle sexist remark. Those sheets were heavy!  He slept on crinkly bare mattresses without complaint.

Eighteen years later, I am still mind-numbingly  grateful.

Egor is my anchor–prudent, unprejudiced, intelligent and unflappable. His solidness balances the flinging vigor of my moods. I am a zany planet orbiting my husband’s grave and pensive sun.  He is nourished by my chipper, eccentric energy.

The two of us once joked how we did not view each other as people, but rather as special beloved pets.

This makes sense. When a pet lover comes home to a wagging tale or resounding purr, is their heart not instantly filled with the purest, most non-judgmental love?  I want to yodel when I see my hubby in the morning.  If I had a tail, I’d thump glasses off tables.

So, I raise that upturned glass to my special interest of eighteen years.  Happy anniversary, dear Egor!

Before drifts of valentine snow gobble me up, I want to thank you.

Thank you for following my blog, reading my posts as lending your sweet support in comments.

Although I am inconstant, I am grateful for your friendship. I am cheered by your visits.

My son and I will make valentines to fill glittery classroom shoe boxes this weekend.  I will think of my online friends while I sprinkle and glue.

Love and eyeball-roses,

Lori