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:
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.
Why do I say bewp?
Imagine an insufferable itch. Once you say “Bewp”, it goes away.
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.
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 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.
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…”
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.
When our beloved seventeen-year-old cat was dying, Liev, 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.
Then there were lists. Page after page of numbered instructions pertaining to the cat:
Pet kitty gently.
Add ice cubes to fresh water.
Brush with the fur.
Liev 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 Liev 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 Liev if he would like to build Pearl a casket. Liev’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. Liev 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 Liev 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 Liev.
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 Liev 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.
Liev 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.
Liev 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, Liev tugged and pulled each word out of me, like an invasive, but beneficial medical procedure.
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 Liev, but not in a dark, sad way. She inhabits his imagination, her ghost flits by windows and lingers half-perceived in kitty-fictions and Liev-escapades. We welcome her as an addition to the family. To be spoken of and remembered.
Ableist, they cried, and I wondered what they meant. The refrain echoed across the blogs I read, the feeds I followed and the tumbling of social justice writers. What does “ableist” mean? Why are people angry, passionate, and consumed by this word? It feels ugly, like “racist,” but I did not understand.
Concepts confound me. They twist in my brain, making social and political issues abstract, hard to fathom. Understanding ableism took time.
Dictionary words helped:
ableism (noun) able·ism | \ˈā-bə-ˌli-zəm \:discrimination or prejudice against individuals with disabilities.
Stories helped more. When I was ten, Dr. Seuss’s “The Sneetches” created my world view. I can still visualize Mama Sneetch, smug and sneering, walking her child by the no-star Sneetches.
Ableists are Sneetches who consider themselves superior because of their mental and physical health. When people put themselves above others, their actions can demean, patronize, or exclude others. Like a contagion, negative attitudes spread, enabling stereotypes and de-humanizing worthy individuals.
Consider a stutterer and the people who mock him. Is he less of a person because he cannot speak fluently? What about my mother, who tootles along the grocery aisles with her walker? Is she less of a person because she needs extra time to buy her free-range eggs and bruiseless apples? Of course not.
At our local YMCA, a wheelchaired tennis player hauls an improbable amount of gear up and down the elevator. An ableist would swoop in and collect his gear and roll him to the elevator. A respectful person would ask if he needed help. I asked, and he beamed, “I got it!” I beamed back, “Cool!” In the elevator, an unspoken conviviality passed between us as if we were watching a friend blow out birthday candles.
That warm moment motivates me to speak out against ableism. Every person deserves respect, fairness, and autonomy.
I am part of the less than 1% of the population affected by “reverse Seasonal Affective Disorder” or summer onset depression. I find summer days insufferably long and empty.
Doctors can’t identify what causes reverse SAD, but theorize that heat and extended sunlight hours are likely causes. I am a native New Mexican and veteran of months of 100+ degree weather. I attribute my troubles more to humidity than heat. Most of all, I blame long summer days.
In New Mexico, my June Blues resembled a lasting case of the blahs. School was over, so I rented movies by the armful. Watching movies and reading books for six weeks seemed like an awesome way to spend half the summer. Besides, the snakes were too active for rock collecting or desert adventures.
I experienced my first unmistakable summer depression in Russia. I assumed my new marriage, new country and new language overwhelmed and exhausted me. The contribution of heat and unremitting sunlight were unconsidered factors.
On my honeymoon, I collapsed. The air was crisp and fresh as Egor and I sailed north of Saint Petersburg to picturesque Vaalam . Daylight glowed incessantly. Surrounded by pastoral riverfronts and whimsical Karelian cottages, I should have explored miles of coastline.
Instead, the white nights stupefied me. The sun scraped the horizon, casting the land in a hazy twilight. Like an over-exposed Polaroid, the world was bleary, bleached, and glazed with an unnatural film.
Disoriented, I slept for most of the next two days. I assumed some mysterious northern illness incapacitated me, when actually the culprits were depression and sensory sensitivity.
After two blinding summers in Moscow, Egor and I moved back to New Mexico. I welcomed the darker, longer summer nights. My seasonal doldrums persisted, overlooked.
Moving to New Hampshire, my June Blues emerged conspicuously. Although our visible light lingers only 90 minutes more than in New Mexico, some sensitive neurological pathway is disturbed.
June’s eight p.m. sun feels like an unsavory protuberant eye, leering at me with wild diurnal thoughts. This gaze is as disconcerting as a nude stroll in a crowded, but hushed stadium. So, I climb into bed, toss a black sheet over my head and watch movies on the laptop.
My blog, Tumblr, Facebook, and Twitter have fallen silent. I have not finished reading my dear friend’s novel. A weekly shower is a major goal.
This is not a pity party, however. Despite the electronic vanishing act, I manage my family responsibilities with aplomb. I shop, clean, cook and vacuum. I water colored twelve thank you cards for Liev’s awesome treatment team. I even put up bookshelves!
Solstice means the June Blues will be behind me. I await you, August Idylls!
ETA: This is a revision of an older post. I still feel the blahs, but daily schedules have helped me stay organized and busy, thus more cheerful. Heat and light can impact many on the autism spectrum, especially those with co-occurring Tourette’s syndrome (heat exacerbates tics). Help yourself and autistic loved ones by boosting structure (schedules) and encouraging the pursuit of special interests.