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:

Facebook: https://www.facebook.com/ThinkingAboutPerspectivesAutismPositivity

Pinterest: http://pinterest.com/positivityautie/autism-positivity-2012/

Tumblr: http://autismpositivity.tumblr.com/

Twitter: @PositivityAutie

Tourette’s Syndrome: Why I Say Bewp

Bewp Sunny

I have been bewping for the past few weeks. Bewp–a nonsense word–roosted in my brain weeks ago. This simple syllable bursts out of my idle mouth and mind continuously.

Bewp.

Why do I say bewp?

Imagine an insufferable itch. Once you say “Bewp”, it goes away.

So.

Bewp.

Bewp Cloudy

When Tourette’s and autism are part of your life, vocal tics can be quite jolly but not everyone else is in on the joke. And it is a joke, an “in thing,” a single word that word sets neurons afire like Shakespeare or the catchiest tune.

Bewp.

Think of a song, haunting you long after you heard it, and condense its melody into a word. This is also bewp to me.

Bewp.

Bewp pleases my mouth muscles. Which delights more, the b’s bilabial stop that feels like a kiss? The yodeling long u? Or the plosive, spitting, p? All three, please! A circus for my teeth and tongue.

Bewp.

With proper intonation, bewp conveys every emotion. Bewp is a festive word to punctuate the joy of sunny days and happy feelings.

Bewp is also a moody, melancholy, utterance; fit for rainy days and misty mornings.

Perhaps bewp is most of all a nighttime sound, filling my head instead of sleep. I stare at the dark speckled ceiling whispering “Bewp bewp bewp…”

Bewp Nightime

So.

This happened last night.

My husband dashed down the stairs with quick thump-bump footsteps. He swished to the patio door and flung it open with action-hero intensity. “Bewp!”  I said.

SSSSSSShhhhttT!” he shushed me. I gasped. I have not been shushed since my porpoise squeaks became problematic during Wimbledon nine years ago.

His scolding stunned me silent (but I thought, “Bewp?”). Why, I asked, amidst an ocean of my odd noises, did this bothered him? He said he simply heard one too many bewps today and he wanted me to stop. He huffed up the stairs as I laughed and laughed. Tears streaked my face,  my stomach cramped. Asking a Touretter to stop a tic is an exercise in ironic process theory. Try not to think of a pink elephant.

Bewp, husband, bewp.

I dried happy-silly tears, reflecting on my son’s parade of strange and repeated vocalizations. Bewp is to me as “Bim bim bim” is to him (or “Angus pow,” “Moo moo MOOO,” and “Porta-potty banana”).  Some word or sound will always hijack our voices.

Tomorrow, bewps and bims will continue, and so will my sanguine husband’s cheer, for our home is an accepting one. Everyone deserves a safe space to be their unique selves. So, if your child says the same thing over and over, be calm. Accept. Those utterances may provide comfort, relief, and delight in a way you do not understand.  Nurture self-confidence, for we are not all made the same and that is a blessing.

Losing a Pet in an Autistic Household

When our beloved seventeen-year-old cat was dying, Tyoma, our autistic son, reacted thus:
“Oh. So, then we’ll get a new kitty.”
No emotional depth. No concern. No sadness.

This did not fool us.

Kitty Pearl filled our son’s daily imaginings. Wobbly scratching posts and sinister-looking grooming contraptions were built in her honor. He wrote her sentimental “I-love-you-kitty” letters and taped kitty-centric schedules near her water bowl. Homemade Kitty Forts stretched across rooms and cluttered staircases.

Kitty Portal

Then there were lists. Page after page of numbered instructions pertaining to the cat:

  1. Pet kitty gently.
  2. Add ice cubes to fresh water.
  3. Brush with the fur.
  4. No pestering.

Tyoma needed to organize his interactions with Pearl, not just to remind him of his duties but also to cope with the delicious and abhorrent impulse to pull her tail.

Pearl’s declining state preoccupied Tyoma later that evening. He spread inky equationed papers on the bed and announced that his calculations showed Pearl would live until August 4, 2014. Propelled with anxious, hyperkinetic energy, he expounded: “The next day (hop), Pearl will be cured (hop) and returned to live with us forever (hop, flap, twist, jump).” I nodded and replied, “I hope so.”

The Sunday before Pearl passed, Papa suggested something different for their weekly project. He asked Tyoma if he would like to build Pearl a casket. Tyoma’s face whitened. “No burial,” he said, “Cremation only.” Within ten minutes, an atomic autistic meltdown consumed him. Books and tears flew. A hole in the woods behind us was too dark and ugly for her, he howled.

After an hour of outcry, he vanished into the computer room, asking not to be disturbed. He resurfaced with the creation to the left.

This Boardmaker sheet is a window into his mind. It translated the enormity of Pearl’s kidney failure into something concrete and measurable.

Like other autistics, he needed to anchor to the tangible before venturing into the realm of emotion.

Every few hours, he filled out a new worksheet and tacked it to the refrigerator. He helped her the way he knew best—with discrete bits of information recorded on paper.

We held a vigil for Pearl on her final day. Tyoma read her his favorite stories as I stroked her. He addressed her in the same sing-songy voice I reserve for sick days and jarring injuries. His imitation of my soothing strategies struck me. Autistic children retain more than we realize.

Papa came home early to sit with Tyoma while I took Pearl to the vet.  We did not disclose the ultimate purpose of the trip, to keep departure subdued. None of us copes well with strong emotion.

An hour into the appointment, Papa told Tyoma.

My cell rang as I finished tucking a homemade blanket around Pearl’s inert form. Sorrow weighed upon me so heavily, answering required unexpected resolve.

Initially, I mistook Tyoma for a shrill, unhinged octogenarian who dialed a wrong number. His hysterical voice rattled my cheap crackly phone:

“I know about Pearl.  Are you going to cremate her or bring her home? Is she dead? Are you going to bring her home? Is she dead? Will I see her dead body? Will you burn her on the charcoal grill? Is she dead? “

He pleaded for details about the cremation: where would it be, how long would it take, and could he keep her ashes in his room?  I squeezed out appropriate answers and hung up.

The significance of cremation finally occurred to me. Remains in our home were less of a transition than burial, which held a sad and somber finality.

Tyoma continued to call for reassurance. My cell chimed cheery tunes as I exited the vet’s office. He left five more voice messages and sent six emails before I arrived home to hugs, tears, and many, many lists.

The day after Pearl died, I thought of her constantly. Her absence seemed inexplicably more powerful than her presence; like when I lost my watch weeks ago. I never realized how often I checked the time until my empty arm reminded me. How sad the stripe of skin on my wrist registered emptiness more than presence.

Tyoma processed his grief with questions. The first wave concerned the minutia of biological death, followed by a shower of spiritual inquiries. At last, he asked how I felt. A grief inquisition ensued.  As if he knew emotion collapses me inward, Tyoma tugged and pulled each word out of me, like an invasive, but beneficial medical procedure.

qs

He led me through sorrow as if he were an expert. Each question I answered took me closer to peace and acceptance.  Perhaps all little askers of questions are armed with the tools to heal. Great sadness can come from passing, but grief is not a monster to slay. Grief means a life changed yours.

Months have passed. Pearl lives on in Tyoma, but not in a dark, sad way. She inhabits his imagination, her ghost flits by windows and lingers half-perceived in kitty-fictions and Tyoma-escapades. We welcome her as an addition to the family. To be spoken of and remembered.

Pearl may have died, but she’s in my heart.

She’ll go when I do. Do what I do.

Okay, she died, but she’s in my heart, yeah!

Pearl may have died, but she is in my shoe.

She’ll go when I do. Do what I do.

Okay she died, but she’s in my shoe, yeah!