From Actually Autistic

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. 

Actually Autistic–A Lesson in Patience

I hunch over the laptop, hyper-focused on a task I must perfect now.

In the next room, my husband, Egor, sprays cleaners furiously. Can he, by scrubbing the carpet, mirrors, and windows, also scrub out worry?

I protest the toxic onslaught, shouting, “Stop! Put on a fan! Open a window! You’re killing me!”

With a sigh I hear two rooms away, he opens a window. Once he realizes it needs cleaning, sprays erupt anew.

Minutes pass. Egor asks a polite question. Frustrated with Windows 10 and our shitty Epson printer, I snap back “I can’t talk right now!”

I curse wireless printing and over-complicated word processing programs as if they were his fault.

As I grumble, E selects this very moment to unleash his Dremel tool in the nearest bathroom. The plan? To rip the grout out of the bathtub in the loudest, untidiest, most bothersome way. The grinding whine of the device feels like a dental drill zipping up and down my spine. “NNNNrrr-nnnnrrrr. Nnnnrrrrrrrr-RRRR-rrrrr.”

I want to yell, scream, shout, “Quieeeeet! I am consolidating months’ worth of thoughts into neat paragraphs for the consumption of others!!!” Instead, I frown deeply and worry my favorite scab.

Why the furor? A school meeting looms. Autism, Tourette’s, and noisy classrooms have collided to make school a miserable experience for  our son. We intend to fix it.

The printer dings to life and spits out documents.  I shout to E for a stapler. I shout again. The Dremel tool is LOUD. After five long minutes, he pops his head in the door, “Where are the staplers?” If I were a cartoon, steam would now whistle out my ears. Yet, I calmly reply,  “I dunno. Downstairs, on top of the microwave, in the little catch-all basket.” In a flash, he hands me two mini-staplers and returns to dremeling, which is a good thing, since neither stapler has any staples and my curses definitely need drowning out.

I rummage through his desk for staples and remember that the world’s finest stapler is in the art room—a vintage Swingline in faux wood and black. It never twists or mashes a staple. But I don’t leave for fear the printer will fail if I am not scowling at it.

In minutes, my perfect report is printed, collated, and stapled.   I scurry off to read my missive to Egor.

He shaves as I ramble on, pacing and popping my toes. Suddenly realizing I made a formatting error, I dash off, wailing when we run out of paper after a single copy. Toilet paper soaks up bloody spots on E’s face when I return. I regret intruding on his routine, being wound up, cranky, and self-centered.

Nevertheless, I pick up reading where I left off.

Egor assures me my work is excellent and that one copy can be xeroxed into many at school. He uses the tone reserved for our son’s difficult moments, so  I am annoyed (my agency!) but also delighted with the praise.

The Dremel tool whirs anew and the caulk gun stutters and wheezes. In an hour, the bathtub looks fresh and new.

As we head off to our meeting, the nicks on Egor’s face give him a warrior air. My papers feel like a cudgel.

Though the meeting winds up being more progress than victory, we are satisfied.

As I wind down, I visit our clean-cornered bathroom. Lines of caulk flow like satin ribbons, smooth spotless tiles gleam. Not a trace of paint smears the wall. I recall the crumpled copies of my papers littering our post-meeting table. They seem ephemeral compared to his stalwart paint and tiles.

I reflect.

My husband is patient. He is patient with me, patient with Tyoma, patient with the school. The perfect bathroom and politely delivered stapler stem from a place of focus and purpose.

Patience has been in scant supply with me of late, perhaps because I lost sight of the bigger picture of my life. A picture that is more than one meeting, paper, or doctor’s appointment. A picture of equality for the misunderstood and marginalized.

A thousand crumpled narratives may be written to make the world a better place. Each word is a sword, every sentence, a slice of justice–a reminder of my focus, my purpose.

I vow to add patience to my arsenal of words and writing.

 

“Patience is not simply the ability to wait – it’s how we behave while we’re waiting.”

—Joyce Meyer

 

 

A Happy Return

Medieval lady with Netflix brain.
Netflix: cure-all for stress, boredom, and anxiety. Not recommended for procrastinators.

Nearly two years has passed since I last published online.

I bit my nails as comments and messages piled up. Facebook reproached my torpor with endless shame-inducing notifications.  Tweets and tumbles ceased. Everything online gathered digital dust, save for Netflix and Hulu.

The world forged on as I streamed another episode of Midsomer Murders and fiddled with Pinterest projects.

Why such apathy from someone who cares so much?

I ran out of spoons. My parent’s health and son’s education required my full and immediate attention.

I am resuming my blog because I enjoy documenting my life.

 

 

Edwardian woman with floating fishes and house.
Forecast: partly fishy with scattered anxiety storms.

Putting it out there refreshes me, like opening a window in a stuffy home.

No manifestos here, just finding my footing, and returning to my original journal format—family stories and personal observations.

Join me while I play catch up and share posts long-queued to publish.

Be gentle with yourselves when crochet, crosswords and time wasters are the only palatable way to spend the last minutes of your day.

Most of all, do not be afraid to reconnect. Awesome people await you!

A Quiet Week Celebrates #AutismPositivity2015

One year ago to the day, I put my mother in a nursing home. I feared she would not last the month, let alone recover and look forward to resuming her life at home. Self-care this year has been the key to supporting my parents and adjusting to a new way of life.

Although my blogging subsided, self-nurturance thrived with art journaling. Simple techniques such as rubber stamping and vintage collaging let me put pictures to my feelings, which in turn spurred words and emotion.

Please enjoy my journey and nourish your own.

Warmest wishes,

sig2

Distance

 

Weight

 

Hips

 

Fly

 

Why

 

Dementia

 

Castle

 

Waiting

 

Pain

 

Resolution

Autism Positivity Flashblog 2015

Austism Positivity 2015

Sometimes we cannot do all the things…
Sometimes events are beyond our control…

This year’s Autism Positivity Flashblog has been shifted to May 15 to accommodate the needs of our team. We hope this will suit you as well! The date change is a lovely metaphor that embodies self-care, acceptance, mindfulness and accommodation in all the best ways… for many of us…

The theme for the 2015 flashblog is:

Acceptance, Love and Self-care

Tell us how you celebrate yourself, your Autistic family, friends or loved ones. Tell us how you celebrate the Autistic community. As you share your stories, art work, and poetry tell us how you integrate self-care into your life.

Let’s start a “tsunami” of positivity to honor Autistic pride, acceptance and love!

Join us in celebrating Autism Acceptance and we will once again flood Google with positive messages about Autism.

For the last three years, hundreds of bloggers have come together in a show of support and solidarity in response to negative stigma. The posts that have flooded in from all over the world have been a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we this year again invite you to participate in an intentional celebration of posAutivity and Acceptance within our diverse communities.

We welcome all of you, anyone who is Autistic, anyone who has an Autistic person in their life, and those who blog about autism to create a message of support, wisdom, hope, and pride to this year’s flashblog by posting to:

https://docs.google.com/forms/d/1NCp1QzzX4jtKP2c-mv6hI0qqOHtaXYV_gzukBkgdAP4/viewform#start=embed

To participate:

  1. Publish your post on May 15th in the following title format: “[Your Blog] Acceptance. Love, and Self-care: #AutismPositivity2015″
  2. Share your post on Twitter, Facebook, and any other social media site using the hashtag #AutismPositivity2015
  3. Add your link to the Autism Positivity website (submit here or above) and grab the badge here.
  4. Share/reblog this message to your blog, page, etc.

If you have any questions, please contact us at autismpositivity@gmail.com

We can also be found on:

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