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.
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.
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 Tyoma’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.