Acceptance for All

Accept Autism and Tourette's.

Upstairs, my son hums a violin-like, Flight of the Bumblebee melody. A volley of ceiling-shaking hops accompanies his next tune, which morphs into a chorus of odd fluty noises– part Oster blender, part baby’s babble. Nasal “mmm—mmmm—mmmm’s” and toneless, almost sinister laughter follows. More hops. The water in my glass ripples Jurassic Park-style.

Not even a minute has passed.

Now he runs–percussive footfalls sound like boulders bouncing down a wooden hill.

“Mmmmm-mmmmmm-mmmmm.”

Then silence, calm and uncanny.  In stillness, minutes are twice as long.

I peek in the computer room. Soft keyboard clicks whisper.   Rapt, Tyoma composes a bedtime plan as tidy as any accountant.

“Look at this mama. I’ve decided to modify my bedtime schedule…”

As he rattles on, I smile. He speaks at me, rather than to me. Therapists might shake their heads at this observation, but I have a different perspective. Tyoma is energized, passionate. Ask yourself–when your favorite team scores and you cry out, “Hooray!” is your “hooray” a conversation or an exclamation from your heart? My son’s Super bowl is composing schedules.

After his plan is printed, violin humming and bouncing boulders resume.

Tourette’s.

Autism.

Not fearful words, descriptive ones. His whirlwind of tics, hops, and songs are as a beautiful as his quiet typing. Nourish every child as a whole person.  We are all part nature and nurture, but nurture is for nature, not against it. By accepting neurology instead of suppressing it, the worth and dignity you give now will sustain a child through a lifetime of difficult moments and judging glances.

A Thanksgiving Lesson

Fifteen years ago, my mother and I fixed our last Thanksgiving Dinner together.

Mom, who is our usual chef and organizer of fantastic feasts, declined hosting the celebration due to a painful hip.  Since my husband and I recently purchased our first home, I jumped at the chance to hold an All-Lori, All-About Me Thanksgiving Spectacle. Our aging Montgomery Ward table would creak under the weight of my homemade repast.

The day before the dinner, I invited Mom over to prep. Vegetables would be chopped, bread cubed, and chardonnay sipped.

Mom pulled up at noon in the family ¾-ton van. Limping heavily, she asked me to unload boxes. I swung open van doors to a staggering assortment of containers. I should not have been surprised. Mom’s approach to everything is militaristic—a task to conquer and subdue. Incredible detail goes into her perfect dinners.

Box one contained two quarts of crystal clear turkey stock for gravy. Formulated from organic turkey necks, gizzards, and her proprietary bouquet garni, Mom detailed its production and the how to achieve the broth’s jewel-like clarity. I discretely poured my murky, gritty broth into our dog’s dish, making a mental note that furious and prolonged boiling of animal parts is better suited to making glue than gravy.

Mom’s second box held her seasoning blends. Handpicked and hand mixed, the aroma evoked decades of Quaker Thanksgiving pasts.  Generations of women before us used these same herbs, perhaps even diced and rubbed with the same fastidiousness.   Butter, margarine, and two kinds of cooking oil nestled in the third box. I smiled, remembering Mom teaching me about the properties of cooking oils. Peanut oil is flavorless and rarely smokes. Butter needs special attention lest it burns.  I make a mental note to scoop my recently charred onions into the compost pile.

Box four held folded parchment paper and ancient copper cookware. “Always buy quality,” Mom reminded me, “Good equipment means good cooking.”

I opened box five, a 12-gallon metal-hinged storage container. Mom’s bundled cutlery collection shared space with her favorite chopping blocks and a hodgepodge of, plates, dishes, and 1970’s Tupperware. Mismatched measuring cups and favorite stirring spoons protruded from items wrapped in decades-old (but immaculate!) dishtowels.  As I hauled in a sixth box (Favorite frying pan! Gargantuan whisk! Metal bowls I remember from first grade! ), I felt overwhelmed by the Mom-stuff, crowding my newly appointed Dollar Store kitchen. Was the idea of post-Thanksgiving washing and packing up thirty years of loved kitchen supplies daunting? Not as much as feeling small and un-hostess-like.

I equipped Mom’s cooking station, according to detailed directions. Each instruction rendered me younger and younger until at last, I was six years old. My broth sucked. My onions burned. My spices stank. How could I host such a special event? Tension stirred my shoulders, but remembering my real age, I poured us each a glass of wine. Conviviality resumed.

Back to following instructions, I handed Mom her largest cutting board delicately wrapped in a pillowcase that once belonged to my grandmother.  Mom unmasked it with a musical “Tada!”

I cringed.  Satan’s unsavory, punched-out-by-Jesus incisor would have looked more wholesome.  An abundance of crisscrossing knife marks etched and blackened its putrid yellow surface. Mom, noting my grimace, reminded me that her chopping block was quite sanitary since she microwaves it daily. “Bleaching your chopping block,” she said, “ruins the taste of the food you cut on it.” The knowing twinkle in her eye tells me she is teasing–I disinfect with swathes of Tilex Mold & Mildew Remover with Bleach, which she finds revolting.

Mom launched into her chopping ceremony with a knife sharpening ritual (she also brought her sharpening kit). I washed veggies and used the food processor to mince Vidalia onions for my famous green chile cranberry sauce. My mechanical dicing scandalized mom, who discussed it with our dog Misty (“Food processing destroys the cellular structure of the onions, Misty!”).  I joined Mom at the cooking station, with my super-ultra-white bleached cutting board.

Mom’s freshly sharpened knives gleamed before her. She described the particulars of her favorite cutting tools selected to optimize the paring, chopping, dicing and trimming of specific ingredients for tomorrow’s meal. When Mom sensed me drifting off, she addressed Misty. Here is a knife for onions, a knife for celery, a knife for bread, a knife for me to stab myself in the head with, and so on.

The more she instructed, the more irritable I became.  I was the hostess! This was my meal to screw up or succeed. I wanted her to listen to me, be proud of me, and accept me and my burnt onions as good enough because I was her daughter. Of course, I didn’t say this. Instead, I snapped at her when she asked Misty why I forgot to buy shallots.

“I didn’t forget them, Mom! I burned the shallots along with the onions,” I said, showing her my pan of shame.

Mom pursed her lips and eyed Misty, but wisely stayed silent.  I huffed around the kitchen for a bit, until I noticed Mom and Misty regarding me with amused affection. I shook my head and laughed, meeting Mom’s warm eyes.  She laughed, too and Misty dashed around the house in celebration.  An unspoken peace presided. Mom praised my green chile cranberry sauce, and I offered her my special nut-chopping knife.  Compliments flowed. With her guidance, we served an excellent meal.

As I look back, I realize I missed what was happening. Mom was passing the torch to me. I became the maker of Thanksgiving Feasts, and Mom was showing me how to do it right. She packed up her whole kitchen with delicate care. She assembled ancestral herbs spices and took her time to walk me through it step by step. I was so enamored by the thrill of being the host; I forgot the tradition, deliciousness, and my dear mothers place in our family history.

Mom and I now live 2,000 miles apart, so we don’t cook together any longer. Her lessons, however, are still with me. I burn onions and dry out the turkey, but now these misadventures are funny stories we share. Maybe the biggest lesson I learned was to accept myself as imperfect and know that I am loved.

Twice Exceptional or Half Capable?

In high school, I laughed too loud and too long. Shushed a thousand times, I never realized how annoying I was until our French class videotaped a comic recital. When we re-watched it after school, my lusty guffaws drown out the players on stage. My whole body blushed. Adding to my mortification, our teacher, Ms. Lucia, commented, “And here is Lori laughing…”

She did not say this in a jovial manner, to ease my embarrassment. She sounded defeated, sad for me, as if my laughter was a sign of incurable illness or impending disaster.

This hurt. I thought Ms. Lucia enjoyed my good spirits. Afterall, I spent hours writing comical journals and assignments for class. Classmates encouraged my boisterous antics and skits. I longed to be her favorite!  But that honor went to another. Michelle. Plop a Tonya Harding haircut on Snow White, add mom jeans and a Peter Pan collar and you have Michelle. Starched and stalwart, her seriousness contrasted sharply with my over the top exuberance. If I sat next to her, she scooted her erasers and highlighters opposite me. (I was in the habit of transforming them into smiley faces mid-lesson). She stifled her discomfort but eventually,  I felt it–an electric current of stay away.

We did not begin as adversaries. French class meant the world to me and I liked Michelle. She worked hard for every quiz, test, and assignment. I, however, aced exams and sailed through lessons with barely a glance at the material.

Grasshopper in Snow
Winter at last.

Since routine classwork bored me, I created little narratives.  I never handed in six-sentence verb exercises or blasé paragraphs about the library. Instead, I illustrated three-page epics replete with new vocabulary and painstakingly researched grammar.  My teacher commended my stories, but since I took my time handing them in, I seldom got credit.

Michelle, however, was always on time. She completed assignments as instructed, in neat and precise handwriting. I worked, when and how it suited me. Below average grades on my late masterpieces didn’t matter because I enjoyed writing them. Michelle worked with daily determination for good grades. She was the ant, and I was the grasshopper, except winter never came.

My senior year showed me where I stood with Ms. Lucia. Without enough students for a French III class, the ambitious could petition to study an extra year under her guidance. Michelle was accepted, and I was not. When I made a fuss, Ms. Lucia handed me a book and told me to study on my own during a free period. Without support, I drifted away. Decades have passed, but her rejection still visits me. In dreams, I sit forever alone before an open textbook, sad, bored, and failing French III.

Twice-exceptional* students struggle with rote and repetitive class work. This grind is hard in a non-intellectual way. Results seem so distant that it feels like climbing an endless stairway to a pointless destination. Just sitting still was an effort for me, so I respected Michelle’s tenacity as she hauled herself up each long and boring step. I managed by completing projects with a flourish. Unfortunately, the world finds flourishes less valuable than deadlines, so I’ve failed plenty of courses. Every time, the recipe was the same–I mired myself in interesting tangents and details while neglecting routine assignments. Somehow, I skipped over skills that others had been building since kindergarten.

I’d like to change the past–but not to improve my grade. I want to go back for Michelle.  She never realized that I equated her between-class studiousness with my story-writing industriousness. We both worked hard for French and thus, were sisters. I tried my awkward best to be friendly, to make her smile, but somehow I managed to only alienate her further. The more I bumbled, the more anxious I became. Anxiety fueled future stupid and off-putting behavior, to my eternal chagrin. Friendship isn’t something Michelle owed me,  but if she understood that my behavior was neurological and not conceit or ridicule, my heart would be at ease.

Get Along Together

In retrospect, I wonder if Ms. Lucia was worthy of the affection I held for her. She could have spoken kindly to me about my unintended laugh track. She could have sat me further from the microphone. She could have paired me with Michelle instead of setting me adrift in an empty classroom.  Michelle and I could have collaborated and emerged twice as capable.  Come to think of it, Ms. Lucia’s every wince, sigh, and impatient gesture taught students like Michelle that I was somehow less-than.

Fortunately, the “needs of the many outweigh the needs of the few”educational philosophy of the 80s is vanishing.  Feeling less-than, unliked, and discarded can haunt students well beyond grade school. I am grateful my son’s school has a progressive and positive atmosphere.  When his neurology kicks into overdrive, his teachers support him and set a strong example of acceptance. As I write, he has found his own Michelle, and I cannot wait to see what they create together.

 

 

*My exceptionalities are autism and Tourette’s syndrome

Lyme Disease in an Autistic Household

 

One July, an angry, quarter-sized rash appeared on my husband’s abdomen. Red as a raspberry, puffy and erythematous, it looked like a smaller cousin to the hives that sent our son to the hospital for a penicillin allergy. Under hot, bright halogen lights, I saw no telltale bite marks. The troubling blotch mystified us.

The next morning the spot doubled in size and fury.  It crept across Egor’s chest, spreading unwholesome shades of red and purple.  I wondered if by midnight he would be craving brains.

Egor lifted his shirt on the third morning with a somber face.  I gasped.  Evil ruby rings engulfed his torso.  Despite the alarming exponential growth, E rejected a doctor visit. His refusal must have been a cultural formality since it took little subsequent argument to send him off.

The doctor confirmed our fears: Lyme disease.

A googling frenzy comparable to the one following my son’s autism diagnosis followed.

While the information on Lyme frightened me, overall the consensus relieved us: Lyme is like a bad flu, take your antibiotics, rest, drink water, and you’ll be fine. Yet, I did not find what I needed to navigate my husband’s illness. As an autistic adult, I needed more than facts–I needed a plan! Plans let me ramp up my executive function. Plans also limit my brain’s natural tendency is to generate innumerable horrific outcomes.

Since plans come from the experience of others, I needed to find a Lyme disease narrative I could trust.

Sorting through the uninformed bickering and alarmist tomfoolery that accompanies online information is a headache. Opportunistic shills cash in with proprietary teas, oils or elixirs. No better are Munchausen-esque blogs with prominent donate buttons and reality show melodramatics. I never found that “just right” article to pave the way.  So, I decided to document our Lyme journey, in case someone needed an idea of what to expect. You don’t even need to be autistic!

What We Learned

Risks

The top two risks are location and the time of year. From the map, you can see that 96% of the disease occurs in the Northeast. The majority of all those infections (68%!) happen in June, July, and August. Egor contracted his illness at Lake George, New York in late June.

Prevention

We still don’t know how my meticulous, shower-hungry husband missed a tick on his stomach. The creature must have been as tiny as the bacteria it carried! Otherwise, Egor did everything right.

He wore clothing as a barrier, sprayed on insect repellent, and did tick checks. Nevertheless, the tick stayed on his body for the 36-48 hours it took to infect him!

We now know the popular deep woods mosquito/tick repellent we used was not a good tick repellant. It contained DEET, but permethrin is far superior repellant. Coat your clothing (not your body!) with permethrin, and you should have better luck than us!

Symptoms and Treatment

Thanks to the publicity given to Lyme disease’s distinctive rash, we quickly spotted Egor’s Lyme and sought prompt care. Nevertheless, panic hit hard because the CDC’s picture of a Lyme rash paled beside the monstrosity plastered across my husband’s torso.

We learned that rashes vary, just as people vary. In fact, only 80% of people develop the classic bull’s eye rash. Despite the gruesomeness of Egor’s rash, his infection was average (according to our doctor and oodles of Google).

If you are at risk and notice a circular spreading rash, see a doctor! The sooner you get antibiotics (doxycycline is often prescribed); the sooner the Lyme bacteria will be killed off.

Antibiotic treatment will last 21-30 days.  A word of warning— the antibiotics that treat Lyme can cause intense sensitivity to the sun. Double check with a doctor or pharmacist. We learned the hard way when Egor became ill after mowing the lawn on a sunny day.

What Lyme (and Post Lyme Disease Syndrome) is Like

Until antibiotics wiped out Egor’s Lyme, he describes his experience:

“Lyme is flattening. Aches and pains like the worst flu I ever had, but for weeks on end. I would sweat and shiver, soaking the sheets. I felt so weak, all I could do was lay in bed. The first week was the most miserable. After the rash faded, I slowly improved. Antibiotics do not give instant relief and (over the counter) painkillers did not help much.”

Without treatment, Lyme can devastate a person. Even with treatment, the infection can leave you experiencing symptoms for months. When Lyme symptoms persist after an antibiotic course, it’s called “Post Lyme Disease Syndrome.” When Egor became ill more than three years ago, post Lyme syndrome was viewed with skepticism. Now, it is widely accepted.

Doctors still debate over the treatment of post Lyme disease syndrome. Some believe more antibiotics should be given, while others maintain that the initial infection disrupts the immune system, causing the body to overreact until it re-achieves homeostasis.

We subscribe to the immune system disruption theory.  Every minor bug crossing our threshold caused mono-like relapses of Lyme symptoms for 3-4 months after Egor’s illness. Nevertheless, within eight months he was back to normal.

Our Experiences

This is a list of our personal observations and advice based on notes I kept for almost a year after Egor came down ill. Of course, I am not a doctor, nor is this medical advice or intended to be taken as such. 🙂  We hope this helps if you or someone you love gets Lyme disease.

Warmest wishes,

Lori

For the Sufferer

Our advice to anyone stricken with Lyme: assume one week of misery. Take time off from work and rest! Nighttime sleep will be fitful and not refreshing so you will be exhausted during the day. Neuralgia is a common symptom and was Egor’s worst. Body aches and joint pain responded better to Tylenol than Motrin, but drinking water was the best medicine. Drink a glass of Gatorade for every two glasses of water to keep your electrolytes balanced. Salty chicken soup helps too!

For the Caretaker

For the caretaker, nourish yourself, especially if you are prone to depression. Build up your support network because you will need to devote extra time to your household while your partner recovers.  I struggled most with schedule changes because I am autistic. Weird, I know, but understanding what will happen and when keeps me functioning and regulated. I prefer all my difficulties to make appointments in advance, thank you very much!

Below is a timeline of our Lyme experience.

Week One

Companion’s Symptoms:
• Bull’s eye rash
• Flu-like symptoms
• Chills and sweating, chills were “intense and worst I ever experienced.”

What We Did:
• Get partner to a doctor. Support daily antibiotic routine.
• Encourage partner to sleep as much as possible.
• If you share a bed with your partner, use separate sheets and have spares handy as they might sweat through a few during the night.
• All that sweating can lead to dehydration. Eight cups of water are needed daily. Pedialyte powder was a godsend. Half of all fluids should contain electrolytes.
• Do not use steroids (hydrocortisone) on rash unless directed by a doctor.
• We found aloe vera juice on the rash to be soothing.
• Sleep, rest, water, heating pad. Pain meds were not helpful, but drinking water, Pedialyte, and Gatorade provided most relief.

Weeks Two and Three

Companion’s Symptoms:
• Rash fades.
• Muscle aches come and go. Worse in evening and morning.
• Joint pain on waking up.

What you can do:
• Help your companion alter their sleep schedule to allow for extra time in the morning to get moving.
• Extra sheets are still helpful.
• Limit caffeine, it is dehydrating and won’t help sustain energy. We found it just caused anxiety with no “boost.”
• Epsom salt baths. This is a good time to spoil your household with bath bombs! Eucalyptus, mint, and citrus gave us the best results.
• Herbal teas helped replace coffee. We chose strong flavors like ginger, red hibiscus, and rosehips to satisfy the stimulating effect of coffee.

Weeks Four Through Six

Companion’s Symptoms:
• All symptoms have eased, but minor illnesses (like a cold) caused an almost full relapse in body aches and fatigue.

What you can do:
• Continue to avoid coffee.
• Electrolyte drinks reduced by 2/3.
• Continue to drink eight 250 mL cups of fluid.
• Yay! We re-introduced green and black tea!

Weeks Seven Through Eleven

Companion’s Symptoms:
• Symptoms in remission, but, again,  minor illnesses caused a moderate relapse in body aches and fatigue.

What you can do:
• No extra electrolytes needed.
• Coffee is back!

Next Four Through Six Months

Companion’s Symptoms:
• Be mindful that minor illnesses will cause body aches and fatigue.

What you can do:
• The flu season right after Lyme was more severe for my hubby—fatigue, aches, pains, chills were intense. We repeated Week One and Two advice. By the following year, he was back to normal. When an episode recurs, up the water and rest.

Closing Thoughts

Each person’s response to illness differs. Lyme is especially perplexing because of the range of symptoms each person can have. I hope our story helped you and encourage you to reach out and share yours. Best of luck to you!

 

Sharing Autistic Family Stories

This conversation took place March 2017. Art from of our travel journals.

Twelve years ago, I Livejournaled a cozy confessional–A Quiet Week in the House.  My life, pregnancy, and motherhood were detailed with adorable nicknames and shoddy graphics.

And then.

My husband left the company he built for ten years.

Our son was diagnosed autistic.

My Dad was diagnosed autistic.

I was diagnosed autistic.

The cutesy nicknames felt disingenuous so I dumped them.

We will not shirk or deny our neurology because autism, Tourette’s, and other differences are not wrong or shameful! “Passing” as a typical person is not the goal of childhood or life in general.

Accepting other people, however, is.

Years have passed since I posted about my son’s journey. How could I be upfront about family neurology while respecting his privacy and agency?

Simple–involve Tyoma more!

At ten years old, Tyoma will co-author stories about him. He will control every article featuring him, including past articles. Nothing about him without him.

Our family stories reaffirm our place in the world.

Writing about experiences as an autistic adult, parent, and daughter amplifies the autistic voices in our family.

I hope our stories bring you joy and thoughtfulness.  This site is about family, after all!

E.T.A.”Tyoma” and “T” are nicknames, but I really am Lori.  Identifiers such as last name, location, schools, and people are obscured.