Housekeeping

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This year marks our son’s thirteenth birthday. To celebrate we are giving him a new name (Liev) and removing personal identifiers from this site. Liev’s privacy and personhood are paramount.

Until I tame the renaming, posts will vanish, appear, and reappear. Thank you for your patience as I relaunch my site!

Cheers!

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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, Liev 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. Liev 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.

Fruit Souls

When he was five, my son decided that apricots had souls. His spiritual journey began the day Lull Farm had a sale on fresh apricots. Their unblemished perfection reminded me of the two immense apricot trees that grew in my childhood backyard. These fruit powerhouses kept Mom busy making jams, cobblers, yogurts, and every conceivable confection. Even our dogs harvested apricots, navigating the inner branches to reach choice fruit. Summer wasn’t official until I collected the first pit-filled scat from our scrubby lawn.

To make my favorite treat, fruit leather, Mom boiled apricots into a paste in a two-day marathon. The sweet, almost tropical aroma clung to Naugahyde chairs and bead curtains for weeks. Thick, sticky apricot goop got everywhere, and I licked spoons and fingers until my stomach grumbled ominous warnings.  My son deserved a taste of that glorious tradition, so I purchased a few quarts of fruit.

At home, I cleared the table to make a dramatic presentation to him. Like my mother before me, I offered an apricot to him and asked him to admire its beauty:

“Feel its soft fuzz? Soft, like velvet. Like a horse’s snout. See its colors? Yellow-orange, orange, and pinkish-red? Smell it, almost like a peach…”

“Now, take a bite,”

Liev blinked, his eyes filled with tears.

He shook his head.

“I can’t.”

“Why?” I asked.

“It’s too beautiful. I cannot bear to kill it. I feel sorry for it.”

Even though I followed the script that won me over as a child, it did not work for Liev. He is a child who loves the fragile and defenseless — a rescuer of slugs, earthworms, and pill bugs.  He understood that fruit is likewise helpless. So, his apricot friend rested on our kitchen table until it shrunk and moldered. “Fruit have souls,” Liev stated as he chose a sunny spot for an apricot grave. He buried it with a song, hoping for a baby tree to grow from its seed.

Winter friends, circa 2015.

As  he grew older, Liev adopted occasional fruits and vegetables. Anxiety and stress triggered bouts of fruit hoarding. Perhaps he longed to preserve order in the universe by saying, “No, not this one!” After missing three weeks of fourth grade for an infected finger, a family of winter squash moved into his bedroom. Our new guests became bedtime story celebrities, offering sage advice about taking antibiotics and returning to school.

Liev, savior of produce, is also a champion of spiders.  His affection sprang from toddlerhood when I taught him that capturing and releasing spiders is better than eating them.  Saving spiders became a public affair when Liev turned six. At a nearby Rite-Aid, he chased a swift wolf spider across an expanse of white linoleum near a checkout. Confused patrons and employees scattered as he corralled the wriggling creature on to a sales circular. Shrill squeals erupted from the gathered crowd as the wily spider escaped twice on its journey outside.

So, our home is Halloween-ready year-round. Plump arachnids perch in corners, their children unafraid of newspaper swats. Ghostly wisps of deserted webs remain intact until we are confident the occupants are deceased. If malaria and cholera did not petrify him, Liev would fling doors and windows wide open so spiders could feast on neighborhood mosquitoes and houseflies.

Which brings me to the Cupcake Incident.

Remember Liev’s extended absence? Well, his return day fell on the class Halloween party. An unsuspecting parent hosted the party with a Pinterest inspired activity. She handed out pretzels, chocolate cupcakes, and mournful candy eyes to make “Spider Cupcakes.” Liev was so thrilled to make his a little spider that he stabbed half the pretzel legs deep into the cake and broke the rest. It was his spider! His spider named “Speeder.”

Then his classmates began to eat their spiders. While the details of his outburst are sketchy, it was epic enough for me to pick him up early.  Not only did he shout, “No, no, no you’re killing the spiders! You made them! How could you!” but he also and tried to rescue the spider cupcakes by plucking them from his peer’s hands. Paraeducators appealed to his sweet tooth to tame his uproar, “These spiders are for eating Liev, they are delicious! Yum!” Bad idea. Tears arrived in torrents, “I don’t wanna eat my Speeder! No! No! Don’t make me eat him! I LOVE HIM!”  Red-faced and tearful, staff escorted him to the nurse’s office, promising that he did not have to eat his cupcake nor watch others eat theirs.

Liev’s upset vanished in a quiet setting with quiet words:

“Liev, the other children don’t see the spiders as real. I know spiders are special to you, and you do not need to eat yours. You can take him home and keep him for as long as you like.”

Some compassion and a way to control a situation that caused big emotions was what he needed. After school, when we walked to the car,  he wiped away still-falling tears and said, “Mama, it’s okay for the other kids to eat their spiders, but we should keep this one forever.”  To this day, the spider lives tucked away atop the kitchen cabinets—a testament to the durability of grocery store baked goods and one boy’s love.

Epilouge

At twelve, Liev shrugs when I remind him of the Cupcake Incident:

“My brain understood that Speeder was not real, but the thought that he could get hurt was huge. I still worry about hurting helpless creatures. I even feel sorry if I smoosh a banana. It’s an OCD thing. Some people wash their hands. I want to rescue things.”

The voice of OCD csounds like the voice of your conscience urging you to do the right thing. Liev and I bear the crush of this righteousness upon our brows; a forever voice in our ears that calls to us to be virtuous, to do no harm, and to protect the weak.  While care and responsibility are traits precious to the human condition,  balancing scrupulosity is hard work. Liev is off to a wonderful start!

Sharing Autistic Family Stories

This conversation took place March 2017. Art from 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 Liev more!

At ten years old, Liev 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.”Liev” is a pseudonym but I really am Lori.  Identifiers such as last name, location, schools, and people are obscured. 

Travel Groove

Liev and I journey to beaches with trimestrial regularity. We breathe in crisp Atlantic breezes while connecting to exotic Wi-Fi servers with passcodes like “relax” and “eenjoy.” Years of beach vacations have blessed us with a comfortable travel groove.

We respect each other’s duties, preferences, and energy levels. I drive and tell convoluted special-interest stories. Liev types, prints and recites our schedules. Most recently, he lettered a giant “Excuse me, I have Tourette’s!” sign for the window behind him since some folks with Tourette’s flip people off as well as curse. A dozen members of the Blue Knights Law Enforcement Motorcycle Club will attest to this.

We startle fellow travelers at rest stop vending machines with scheduled disagreements:

“Mama! Give me the quarters! I have to buy us Aquafina!”

“Liev, I want Smart Water instead!”

“NOOOO! Smart Water is a marketing gimmick! Don’t be a fool! You’re wasting our money! We have to buy Aquafina!”

“How about we get Dasani?”

“Oh, okay. Dasani is cool. Can I have starburst, too?

“NOOOOO! Starbursts are too sugary, and you will get diabetes!”

Heh.

Our groove means planning. Smallish totes of noodly soups, cracker assortments, and diverse dry goods nest in a basement corner. Next to them, sit boxes crammed with household tools, electrical components, and trip-only books and fidgets. Not only can Liev and I vanish on a whim, but we are prepared for any apocalypse lasting less than a week.

I sometimes worry my preparedness is excessive. Yet, as we move into our latest efficiency, I spot a desiccated pink dish sponge. It languishes beside an ancient bottle of lemon Ajax dish soap. Hah!  I whip out my new Scotch Brite sponge and green Palmolive in a Purell pump. I am so self-satisfied I whoop, startling a child sneaking behind our cottage.

The giant fan we brought not only drowns out our neighbor’s drinking party but also my son’s expletive-laden reaction to the case of Smart Water I packed.  As I replace the cucumber-overload bar soap with a bottle of Method unscented, I sing a happy song.  I will not spend my vacation semi-distracted by artificial melon residue!

All the toys and books, every sock and extension cord has a special place.  Liev sorts food into the refrigerator and fills ice cube trays as I plop electronics into the top leftmost drawer in our room. We go outside for fresh air and a tension release. Our beer-loving neighbors turn down their music to listen to our three-syllable debate. Liev wants to alert the front desk to the possibility that their ice machines might harbor pathogens.  I want peace and quiet.

“Salmonella! Legionella!  E. coli!”  Liev laments. “Even Typhoid and Cholera live in ice machines! Mama, we could die! It’s a public health issue!”  I know the truth. It’s hot. He’s hungry. Breakfast for dinner will be served and the front desk will receive an adorable, but disturbing note from my nine-year-old. Our neighbors side-eye us but buy their ice from the local grocer.

Fun times and emotional venting go hand in hand because overstimulation does not care. Mind-losing and hysteria are as expected as toilet breaks. So, if you see a mother and child heatedly discussing whether waffles should be eaten like pizza, cast your judgment aside. Cutting food into tiny pieces and forking it into your mouth is hard when you are trying not to shout unforgivable obscenities at nearby giggly teenagers.

Do not think our life hard or sad because we are so different. Most of our moments are double rainbow awesome. Imagine feeling so happy or excited you shout “Holy Cow!” (or a vulgarity of similar import). But instead of it being over the Super Bowl, it’s because waffles are delicious. Imagine never being able to dial that down, even though your brain tells you to chill because everyone is staring.  You learn to either hide from waffle-judgers or to say excuse me over and over again.

Well, life is full of excuse-mes anyway. It’s what you say to be polite when you might bother someone. Our bothers are just unexpected, that’s all. And isn’t the unexpected often delightful?