Why "Running with Bunions"?

Saturday, January 27, 2018

Searching for Mojo

The following is an edited version of a blog originally published in September, 2012 when hubby and I lived in Doha, Qatar, a tiny peninsula shaped country in the Arabian Gulf. Where I spent my days studying Arabic, assuming my way into the culture and writing about it.

Mojo: muse, inspiration, drive, motivation; a person's "umpf"

Oppressive humidity ran my mojo off.  I wallowed a while.  Ate expensive M&M's from Spinney's, ie, the Middle Eastern 7-11, binge-watched Breaking Bad on my computer and ignored writing projects, research opportunities, Arabic homework. Finally the day came when the cupboards were bare. Test approaching. I'd watched all the episodes. Publication was imminent.

Time to find the runaway and drag her home.

I headed into the desert.

desert

Welcome to my Doha summer. Where humidity sucks moisture from the body until all that's left are teeth, toenails and wet clothes. Where Mojo tempts with blue desert skies, taunts with freezing inside temperatures, mocks with unresearchable ideas, teases with a writing sale or two (or three), then…runs away.

I climbed a mountain of sand. Glittering grains danced across the dune's lip, tumbled into the crescent and collided. The sand sang.

listen to the dune sing!
  
What makes a sand dune sing? Size, shape and texture of the grains is important. The dune should be shaped in a semi-circle, like a bowl. Granules must be in motion - and very, very dry.

Niagara Falls, but without the wet.

There are only 40 known singing dunes in the entire world and one of them is right here where I live in Doha, Qatar.

I pressed my fingers into the warm, gritty strand, lifted my face to the sun and listened as ideas circled my brain.

I laughed at Mojo.

Now I know where you live.

Sunday, January 21, 2018

TwirlyGirl, Sister of Autism

The package was soft, colorful and wrapped like candy. Amaze Girl held it to her cheek and squeezed.

"It's a TwirlyGirl dress!" I said. "A just because present."

Just because…you're kind, gentle and genuine, a patient, loving sister to your little brother with autism. Because you strive to overcome your own challenges even when you feel misunderstood and overlooked…

"These aren't ordinary dresses…Fairies sew them in the middle of the night. I pay (the fairies) in unicorn feathers…"
-Cynthia Jamin, CEO, http://www.TwirlyGirlShop.com

Amaze Girl untied the ribbons. She raised the wrapping high, admired its colors and texture. She waved it like a flag. And then? She saw the dress.

Markers, crayons, paint. Amaze Girl is focused on her project.

Wonder Boy collects Amaze Girl's shoes. He thrusts them at her, smudges her drawing.

"Hey!" Amaze Girl says. She pushes the shoes away.

Wonder Boy cries. He hits himself. He throws himself to the ground.

Using his talker, Wonder Boy practices, "Play with me, please." He looks Amaze Girl in the eye. "Play with me, please," he says.

Amaze Girl sighs. She drops her crayons and puts on her shoes.

It's tough to be a sibling of autism.

She was beside him at the breakfast table when he tantrummed because someone put eggs on his plate/there was a string on his sock/he wanted Daddy's hat. He moved her cup, silverware, book, ruined her toys. When he had strep throat and refused to take his medicine, she was expected to focus on homework while he thrashed and screamed in the next room. She paused her piano lesson to help with his therapy. At Wonder Boy's insistence, she watched The Robinsons movie - for the 400th time.

Just because…you're his comfort and balance as you do life together, shuttled between two divergent households. You're his best friend and constant companion; sometimes the only one who understands what he can't yet express...

The dynamics in my household while growing up were at times overwhelming.

Super Daddy makes time for one-one-one attention and just-the-two-of-us outings. But in the everyday, here-and-now? It often seems that it's all about him and never about her.

Her eyes darken and her mind fills with clouds. She steps into the mist, to the place she goes when she senses frustration and negativity. When she returns, Teacher is waiting.

"You're not trying," Teacher says. "Focus. Think. Sit still."

She stares out the window while her classmates attend to the lesson. She lashes out with a pencil, ruining her work and sometimes things too. She's kept in for recess, sent to the buddy room.

It's hard when people don't understand.

The dress was soft, the wide skirt a maelstrom of shimmering color. Amaze Girl twisted and the dress fluttered. She turned and the skirt danced, a whirling, swirling candy cane rainbow.

Amaze Girl raised her head and laughed.

Life has not dealt you an easy hand. But my sweet, darling granddaughter, this moment? It's just for you.

Sunday, January 14, 2018

SNUG: Spontaneous Novel Utterance Generation


"The students who…grow the most in their communication skills and become the most spontaneous are the students who…spend copious amounts of time exploring their (AAC) devices..."
-Kristen Ponce, Speech/Language Pathologist, AAC to the Core

Wonder Boy paced, his AAC device, ie "talker," straps draped across his body shoulder to hip, like a purse. He sat, placed the machine on his knees and tapped buttons. "Blanket," the talker sang.

"I want blanket," said Wonder Boy. He proffered the device, as if to underscore his request.

It was the first time he'd - independently, unprompted, totally on his own - generated purposeful communication using his machine.

Angels sang as the Heavens rejoiced!

"…the ultimate goal for all AAC users is SNUG-Spontaneous Novel Utterance Generation. It means the ability to put words together independently to express your own thoughts and ideas…"
-Kristen Ponce, ibid.

In the beginning, we used sign language to facilitate communication: jump, help, please, toilet, more. We used a Picture Exchange Communication System (PECS); a book of photo images with text.

Then came the AAC Device, ie, Wonder Boy's "words" or "talker."

Screen projection
At school, educators utilize the AAC device and facets of the software to facilitate guided instruction and offer solutions. With help, students create sentences, identify moods, request objects, learn.

At home? Wonder Boy's device sat on a counter, coffee table or beside his bed. Within reach and available, but silent and inert.

We attended a technology class where the many ways devices facilitate communication were outlined. Could we do more, we wondered?

We encouraged Wonder Boy to play with his talker. We showed him how to find words to replace outbursts, identify emotion, express needs and wants. We hung it over his shoulder when he left the house.

When it snowed, we demonstrated how to locate the word on his machine. "Snow," the device said.

Wonder Boy examined the picture, reviewed the text. He placed a wet finger on his cheek. "Snow," he said.

He felt the air, touched the freezing particles. "Cold," sang the machine.

"Cold," said Wonder Boy.

Initially, Wonder Boy didn't like having his talker strapped to his body. He was inconvenienced by the necessity to pause for words when there are still places in his world where independent effort is not required.

bedtime
Today, at his primary residence, Wonder Boy's talker is with him everywhere he goes. At the dinner table, he pages through images, examines text. He listens to words and watches video models. At playtime, the device is beside him on the floor. It's close when he flips on the trampoline and within reach when he uses the bathroom.

His device is with him during therapy.

Almost immediately, Wonder Boy's daily school word usage increased by 75 words/day.

And there's this:

Wonder Boy has "…increase(d) his percentages on both reading accuracy and comprehension this quarter…the continued use of his AAC device at home has helped increase his knowledge base and use of pictures to support his understanding of the text…"
-Wonder Boy's report card, January 2018

Angels sing as the Heavens rejoice!
meanwhile...outside the bathroom door

Sunday, January 7, 2018

First, Presume Competence

Autism is a neurological issue in the brain –not a mental illness or intellectual disability.

"What's the matter? What's the matter?" Wonder Boy cried. He slapped his head.

I placed my iPad beside Wonder Boy's talker. "What's the matter?" I echoed. I tapped his machine.

Wonder Boy pressed buttons. "Carrot," the machine said. "Dragonfly."

"What's the matter?" Wonder Boy muttered.

On my iPad, I typed, "My stomach hurts."

Wonder Boy expertly navigated to the designated words. "My stomach hurts," the machine sang.

"My stomach hurts," Wonder Boy said.

I am hungry. I am tired. I am thirsty. I want to go potty. I want to play.

Wonder Boy copied my keystrokes and spoke each phrase. He was no longer in distress, but I still didn't know the source of his troubles.

In the autism community, "presume competence" is a rally cry reminder to assume, especially in the absence of physical evidence, that every child has the ability and desire to learn and communicate. Responsible caretakers provide experiences that promote learning so each child has the opportunity to one day assert himself in the world.

It's easy to forget to presume competence when a child with autism doesn't communicate in expected ways. When he doesn't make eye contact, respond appropriately or is consumed by stimming and scripting.

We fail to presume competence when we speak to him in a sing-songy voice or carry a physically capable, elementary aged child around like an infant. Failure forgets to plug his talker in overnight, does not insist he's kind, take turns and postpone gratification, even when it's hard. Failure is not patient when he's slow to respond. We fail to presume competence when we talk about him in his presence as though he wasn't there.

Because in most cases? Even when all evidence points to the contrary, and he doesn't, or can't, respond? The child with autism is listening. With comprehension.

What do autistic children understand?

To presume competence is to expect that he can. And to seek the enabling connection, with love and patience, until he does.

Wonder Boy was 5 years old and still in diapers when he came to live with Super Daddy. He couldn't dress himself, brush his teeth, attend to a story, read, write or count. He didn't respond to his name, couldn't hold a pencil and gave no indication he understood language.

Now, a year and a half later, Wonder Boy does all of those things. And more.

Autism alters the brain's mechanics and affects the conditions under which learning happens. Autism does not decree a lack of intelligence.

Wonder Boy copied letters from a pre-written page. Dear GGPa, Dear GGMa, he wrote to his great grandparents. I love you. Independently, Wonder Boy signed his name. Then? He picked up Super Daddy's locked and darkened phone, input the password and navigated, through photos, apps and programs, to a favored game.

There are no guarantees in life - or autism. Diligent effort stacks the possibilities. Persistence increases the odds.

But first? One must presume competence.