Sunday, August 12, 2018

Good Morning Starshine*

So long, Summer 2018! Together we enjoyed mud, dirt, clay mountains, worms, cicadas, contractors, concrete trucks, wood, nails, rocks and hammers. We learned to swim, tie shoes, make beds, play piano, multiply, write in cursive; read. There was daily therapy, Auntie Dimples’ pool, trampoline, the high school track, ice cream cones, road trips, friends, family, music, books, laughter; the great, all-encompassing joy that comes from being together.

And there was dancing! To this song on bright, happy, stay-at-home mornings. “Alexa? Play Good Morning Starshine, please!”:

Good morning starshine
The earth says hello
You twinkle above us
We twinkle below
Good morning starshine
You lead us along
My love and me as we sing
Our early morning singing song

Gliddy glub gloopy, nibby nabby noopy la, la, la, lo, lo
Sabba sibby sabba, nooby abba nabba, le, le, lo, lo
Tooby ooby walla, nooby abba naba
Early morning singing song

Good morning starshine
There's nothing in the skies
Reflecting the sunlight
In my lover’s eyes
Good morning starshine
So happy to be
My love and me as we sing
Our early morning singing song

Gliddy glub gloopy, nibby nabby noopy la, la, la, lo, lo
Sabba sibby sabba, nooby abba nabba, le, le, lo, lo
Tooby ooby walla, nooby abba naba
Early morning singing song

Can you hear me singing a song, a love song
Singing a song
Loving a song, laughing a song
Singing a song
Sing the song, song sing, song, song, song, sing
Sing, sing, sing a song

Song, song, song sing, sing, sing, sing a song
Sing, sing, song, sing a song
Yeah, you can sing, sing, sing song, sing a song
Sing, sing, song, sing a song, sing

*Good Morning Starshine was written for the controversial 1967 musical Hair and popularized by the performer, Oliver. Summer 2018, Amaze Girl and Nonnie enjoyed singing and dancing to this happy tune in the mornings – and at other unspecified moments throughout the day. (Wonder Boy, like his daddy, is decidedly not a morning person and prefers silent snuggles to charismatic outbursts with his waffles. So, by way of full disclosure, we did early a.m. quiet too.)

Saturday, August 4, 2018

A Darling Girl on Meds

Her first day on ADHD meds, Amaze Girl refuses pancakes.

Amaze Girl loves pancakes. Stacked, with lots of syrup. She’ll eat two and ask for three more. Sticky gets in her hair, spills to the table, adheres to her chair, drips to the floor.

We open a Vyvanse capsule and pour the contents into a jigger of water. She drinks it. Almost immediately, she heads to the bathroom. Upset stomach.

Later, she reads about sharks on the couch before retreating to her bed for another hour. Her brother-with-autism absorbs her calm and reads quietly too.

On a typical afternoon, Amaze Girl dashes up and down a mountain of dirt where she’s created a throne and firepit. There’s a craft area where she makes laurel wreaths out of leaves. She swings into the sky, jumps on a trampoline, slides over the end of a 3-foot tall plastic pool. She collects bugs, worms and insects; gathers interesting rocks, scrapes them into dust, adds water – and voila! body paint.

Yesterday, as she examined a translucent, green-speckled, very dead cicada, two grubs wriggle free of its body. “Nonnie, come see!” she exclaims. She uses a nail to dissect and impale the insect. Its insides are missing. Had the grubs feasted on it? Do grubs eat cicadas? “Let’s ask Alexa!” she says, referring to a voice operated search engine device.

The creature falls to the earth. She wipes clay-dusty hands on her shorts, hurries inside.

Later, the cicada’s lacy wings become part of her Collection of Interesting Things.

Amaze Girl’s curiosity is vibrant, intelligent, stimulating. Her enthusiasm is vigorous and contagious. I adore this darling girl as she is: brains, beauty, personality. A bundle of kinetic, ever-moving smarts. Squeezable exuberance. Wild, often unfocused, energy.

“Every day (she) forgets to take her (notebook) to specials.”
-Teacher, May 2018

Overwhelming, all-consuming physiological energy can make it hard to sit still, listen and respond appropriately. It can be tough to finish-what-you-start. When a person has difficulty interacting in a way that makes sense to others, educational and social progress may be impacted.

“…she was skipping questions and not reading them. I get a notification when a student clicks through the test…”
-Teacher, April 2018

Amaze Girl’s route to medical intervention began with a perceptive, caring and persistent teacher who recognized intelligence under the frenzy and ability behind the incomplete assignments. Doctors, tests, counseling and a diagnosis followed. Super Daddy researched therapeutic methods and biochemical solutions. He sought professional advice and accepted counsel from those who’ve “been there.”

This first day on medication, Amaze Girl does not swim, jump, climb, build, make. There are no laurel wreaths, thrones, or impaled insects.

There is: quiet. Calm. Sitting. Thinking. Reading. There is dreaming, talking, writing. She plays her piano memory piece all the way through, legato. She floats in the pool, lays on the trampoline, stares at the sky. On top of her mountain, she focuses on a project that involves rocks, nails and sticks. All afternoon.

She sleeps well that night. And the next morning? She eats a stack of pancakes with honey.

Monday, July 30, 2018

Transition: New Bed

change is hard
Standing in the empty middle of his temporarily shared bedroom, in the space where his bed should be, Wonder Boy screamed. He kicked the floor. He slapped a wall. He pressed buttons on his talker. The machine intoned, “I am angry.”

“Angry,” said Wonder Boy.

In soothing tones, Super Daddy explained: “You have a new bed. I’m putting it together.”

Wonder Boy bobbled his head. His body tensed. Eyes closed. He opened his mouth and screeched, high-pitched, long and loud.

“No screaming,” said Super Daddy.

“Screaming is not nice,” whispered Wonder Boy. He climbed onto Amaze Girl’s bed. Huddled into the masses of blankets, pillows and snugglies - some hers, some his. He buried his face in the familiar softness. He rolled under blankets. He whimpered.

Tearfully, Wonder Boy scripted as he followed Super Daddy through the house to get tools. He muttered familiar phrases as Super Daddy hammered, drilled and drove wooden parts together. He moaned when Amaze Girl’s bed came down and the new frame took shape. He cried as toys were moved and the carpet vacuumed. He howled as Super Daddy placed, first bunkies, then mattresses onto the new sleeping space.

“It’s a bunk bed,” said Super Daddy.

“Bunk bed,” repeated Wonder Boy. He sniffed.

Wonder Boy climbed the ladder and sat. He patted his familiar mattress. He hugged his pillow: just right. He looked at his posters and tapped the ceiling. So close.

He giggled. Now, glee, joy and exuberance pinked his face. A small bounce. A wiggle. A twist. Happiness.

With Super Daddy’s help, Wonder Boy practiced going up and down the ladder. Toes reached, tickled, touched the smooth cherry wood, as his body learned the location of the rungs. Just like the trampoline. He lay flat on his bed. He sat back straight, legs crossed. He paged through a book, rearranged Buzz and Woody, hugged his monkey ball. He looked down at Super Daddy’s head.

Louder this time, Wonder Boy laughed.

“Bath time,” said Super Daddy.

Wonder Boy smiled. “No!” he said.

Later, after bath, books, a summer movie and quiet play; later, when it was time, Wonder Boy climbed the ladder to his bunk. He huddled under his blankets and snuggled into his pillows.

“Good night,” said Super Daddy.

“Good night,” said Wonder Boy. The light clicked off.

Wonder Boy lay still. He absorbed the twists, turns and shadows tucked into his brand-new space.

Eyes wide in the darkness. Ears tuned to the silence. Wonder Boy giggled.

Sunday, July 22, 2018

Presuming Competence in the Summer

With Super Daddy
Wonder Boy rushes into the pool at the shallow-to-deep beach entrance. Water splashes about his knees, hips, belly, circles his neck.

He chortles, eyes closed. He is glee, delight, joy, mirth.

Amaze Girl wears goggles over her eyes and nose. She jumps, ducks, submerges, flips, “tea partys,” “mermaids,” floats. Horizontal in over-her-head water, she kicks her feet. Arms circle her head; one in the air, the other under water. Her body glides across the short end of the pool.
Amaze Girl swims
 Close between them, my heart dances. Even as my over-(grand)parental, hyper-vigilant, two-kids-in-the-pool anxiety rises.

Wonder Boy splashes to the water’s edge. He pulls himself up and stands on the precipice. He points at me, shouts, “Stay Away!” Then?

He jumps.

Liquid whirlpools over his submerged head and body. I count: 1…2…3…4… My heart flutters, metabolism rises. Finally, Wonder Boy’s head pops up. There is exuberance. Joy. Laughter.

The two previous summers, twice a week for a month, Wonder Boy enjoyed expensive, private, “autism swim” instruction in an Olympic-sized pool. He loved the water and individual attention. But he didn’t learn to swim.

Amaze Girl had joined a swim class. It was a great time! But she didn’t learn to swim either.

This year, we presumed the children’s pool competence with regular swim and little actual instruction. With supervision and encouragement, Wonder Boy investigated the water. Amaze Girl frolicked. And when they were ready? They began to swim.

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

Our family summer is overtaken by an addition to our house: plumbers hauling pipe, electricians running wire, carpenters drilling, Super Daddy and Pop hammering, hauling, sawing. Machines, trucks, cranes, mountains of displaced earth. A dumpster and toilet in the driveway.

Still, we’ve made time for what’s important: swim, books, pencils, crayon, piano, running, climbing, digging, reading. A Royals’ game; a visit to see the Great Grands. Togetherness.
fuzzy family
Wonder Boy chooses a book. With help, he points to each word: “Thomas can go.” In the phonics area on his talker he types: c-a-n.

“Kuh-aaa-nnn, can,” says the machine.

“Kuh-aaa-nnn, can,” says Wonder Boy.

He points to another word: “guh-o,” he says, without prompting. “Go.” My heart swells.

Amaze Girl reads. She practices cursive handwriting and multiplication facts to 12. She transposes and notates music and memorizes a song on the piano.

Wonder Boy ties his own shoes. Makes his own bed. Dries himself following a bath. On the piano he’s learned “Middle C Position.” He names notes, claps rhythm and plays “B-I-N-G-O” with help.

At the pool, Amaze Girl kicks and splashes while Wonder Boy treads water vertically. His feet pump like pistons, hands paddle at his chest. He swims to the wall, pulls himself out of the pool and crouches, arms extended. He points at me and laughs.

“I know,” I say. “Stay away!”

“Yes,” he says. Giggles trail like bubbles as he leaps into the mist.
Swimming with Auntie Dimples

Saturday, July 14, 2018

My Special Needs Dictionary

My special education education is a work in process! Entries will be added/edited/changed as I continue to learn…

Applied Behavior Analysis is an individualized, incrementally applied program for individuals with autism and other special needs. ABA utilizes repetition, consistency and reward to improve communication and learning abilities.

Learning differences for those with difficulty focusing bodies and/or minds in a typical educational environment.

Read More: A Darling Girl 

Differences in the brain’s chemical or physical composition that impedes one’s ability to interact with the world.

Read More: On Autism

A Board Certified Behavior Analyst writes and supervises individual Applied Behavior Analysis (ABA) programs.

A computer fitted with special software that facilitates verbal interaction. Interchangeably referred to as a “talker” or “words.”

Socially expected interaction in which individuals look into one another’s eyes to demonstrate interest and attention.

Ear covers that dull the noisy edges for individuals overwhelmed by excess sound. Facilitates the ability to tune in to selected output.

The ability to sense physical urges, for example, hunger, thirst, need to eliminate.

Softer than “kid” and more respectful than “child.” Nicer than “youth” and more personal than “individual.” Special Needs Educators, therapists and others in the field often use this kinder, gentler term to refer to young charges.

Sometimes frightening, potentially dangerous physical/mental loss of control. May begin as a tantrum, ignored need, overstimulation or virtually any other unmanaged situation but spirals into a cause-less stimulus overload.

Refers to the brain’s ability to grow new cells and establish new neural pathways.

To assume in all situations and despite appearances to the contrary that every individual has the capacity to succeed.

The ability to track the body’s position in space, recognize stimuli and respond by appropriately contracting muscles and joints.

Verbal and/or physical repetition produced for pleasure, communication or as part of a frustration response. May be phrases/movements from movies, books or people and may or may not be intended to relay meaning.

Physical harm afflicted to one’s self. May occur for pleasure, communication or as part of a frustration response.

Overstimulation that occurs when input to the senses exceeds the body’s processing capability.

A body’s inability to effectively digest sight, sound, taste, smell, touch, plus other senses, including, but not limited to, recognizing where the body is in space and identifying physical requirements like the need to eat or eliminate.

Acronym for Spontaneous Novel Utterance Generation refers to an individual’s ability to create meaningful language without assistance.

Annual benefit race that provides Communication Devices to special needs individuals.

Read More: Sophie’s Runners

Any physical, educational, social, medical, occupational or other capability that, when lacking, impedes an individual's ability to interact with the world in a meaningful way.

Continuum of physical and mental competencies arranged from least able to most skilled and includes everyone everywhere. Like a prism of infinite hues, capacities intersect, diverge, refract and swell in an ever-changing conundrum of potential combinations.

Calming pressure applied in an organized and/or patterned manner. May help those with proprioceptive and sensory challenges calm and focus body and mind.

Repetitive verbal or physical movements used to calm or ease internal tension.

Cause-based outburst of anger and/or frustration.

A change in activity or state of being, whether unique or mundane.

A child who meets developmental milestones at expected times.

Sensory system involving the inner ear which affects one’s ability to coordinate movement with balance.

Saturday, July 7, 2018

Very Positive Outcomes in Autism

“…there is this subgroup of kids who start out having autism and…lose those symptoms…”
-Geraldine Dawson, psychologist/researcher at Duke University’s department of psychiatry and the Institute for Brain Sciences

“Good morning,” says Wonder Boy. He sits beside Sister Sunshine, a charismatic charmer, dancer and performer with autism. Her glittery hair ribbon bobs as she hugs him. Nearby, a friend in bright yellow peeks at Wonder Boy without turning and a boy creates a heart with his fingers. Another child offers silent eye contact; he likes baseball, music - and Sister Sunshine.

A 2013 study followed 85 children diagnosed with autism at age 2. By 19 years old, 9% of the study group “no longer met the criteria for the disorder.” This was described as a Very Positive Outcome:

Michael, aged 3, showed no interest in language, threw himself into walls, had “stunning tantrums.” His parents were told he should be institutionalized.

Instead, Michael’s parents developed a rigorous 40-hour/week home program. By age 8, Michael’s speech and behavior were at grade level. As a teenager, despite “lingering social deficits,” Michael no longer displayed autism symptoms.

Children in the study who overcame autism were “twice as likely to have received behavioral therapy” than the 91% who retained characteristics of autism. The only other consistent techniques? Patience, perseverance, parental involvement.

No one knows for sure why some kids overcome autism and others don’t.

Experts hypothesize that some autism-like symptoms may be caused by “genetic and environmental etiologies that” merely look like autism. In other words, some individuals “outgrow” diagnoses because they don’t, in fact, have autism.

“I’ve been studying autistic kids for 40 years…and I’m pretty good at what I do. But I can’t predict who is going to get better and who’s not...”
-Deborah Fein, clinical neuropsychologist/instructor at the University of Connecticut

Most kids don’t “beat” autism. But each can hone gifts and talents specific to individual ability.

For example? Model RJ Peete, whose parents were told he’d never communicate, have friends or participate in school. And Tarik El-Abour, who didn’t speak until he was 6 years old and was just drafted by the Kansas City Royals. And Zeke Gibson, who participated in an art exhibit and is well liked in his high school.

“To all the kids with autism…you can do anything you want to.”
-RJ Peete, diagnosed with autism at age 3

“Beating autism” is a bonus possibility that animates the pageant of Very Positive Outcomes for everyone. Dancers, heart makers, baseball enthusiasts, musicians, friends. These Very Positive Outcomes aren’t known until achieved.

In life and autism, the happiest results are to become the best you possible, in spite of life’s unique challenges.

“…Matthew’s autism wasn’t the enemy; it’s what he is…he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”

Sunday, June 24, 2018

Thanks, Janice

“…Physical exercise has particular benefits for children on the autism spectrum…”

Wonder Boy screams, hits himself, scripts, tosses his talker onto the floor.

“Let’s go outside,” I say.

The sky is blue. The sun is bright. There’s a gentle wind. Wonder Boy looks at me from the corner of his eye. “One…” he says.

“Two…” I whisper.

“Three, gooooo!” Half-way down the block, “ooooo’s” glitter in his wake.

Exercise works the proprioceptive and vestibular systems, strengthens hearts and lungs, stimulates appetites, clears minds, directs neurons. Exercise is a brain and body building activity with special benefits for individuals with brain injuries, illnesses and learning differences.

“…exercise…stimulate(s) the release of growth factors—chemicals in the brain that affect the health of brain cells, the growth of new blood vessels in the brain, and even the abundance and survival of new brain cells…”

But in this sedentary age of Netflix and YouTube, how do you get kids moving?

In our house? We lead by example. It’s Janice Huddleston’s fault.

Janice was my mom’s friend and get-up-and-go dealer. She lived at the end of Butterfield, a half-mile long road that coursed the distance between our homes.

Coffee dates with Janice began and ended with Mom panting along the sidewalk in her tennis shoes. “You can do it!” Janice sang.

Once Mom could field the distance between our homes, she expanded her repertoire to include sprints around the high school track.

“Look at my legs!” Mom said. Muscles defined her thighs and outlined her calves.

I splashed Hershey’s syrup on ice cream and shook my head. “Running makes me tired.”

Mom’s pony-tail bounced. “Running creates energy,” she gushed. “It clears your skin and makes your hair and fingernails grow. It gives you whiter teeth!”

Right, I didn’t believe that last one either. But I was the kid and she was the mom, so I rinsed my bowl, laced my shoes and…ran.

I’m naturally round and will never be light-on-my-feet. Hefting my body around a track was like lugging bags of sand through water.

But in the midst of all that red-faced huffing, puffing, grunting and complaining, I developed muscles. Strengthened lungs. Dissolved negative energy.

Exercise has…been linked to better brain health and emotional well-being.

Running never made me skinny. But it banished bad mojo, coordinated physical systems, helped me think. And when I was a mom?

“Run around the tree ten times!” I instructed Super Daddy and his sisters during homeschool PE.

Sure, they huffed, puffed, moaned and complained. Until they were hooked on activity too.

Now, this moment, Wonder Boy detours to the backyard. He climbs a ladder and slips through the trampoline’s netting. He jumps, rolls, tumbles, flips. For hours.

Later, he lays on his back and stares through leaf covered branches at the dappled sky. He listens to the wind and watches trees move.

Autism is complex and moods can seem unpredictable. But in moments following joy-filled physical activity? Wonder Boy’s body and mind are at peace.

Thanks, Janice.

Sunday, June 17, 2018

If Only You Could Tell Me

Wonder Boy is a 7-year old child with autism.
I am his grandma. My name is Nonnie.

Dear darling, adored child, what’s your favorite color?

If only you could tell me.

What did you learn in school today? Did you raise your hand, ask a question, answer one? What’s your favorite subject? Music, art, PE? Science, math? English? Speech? Occupational Therapy?

Did you run? Jump rope? Slide? Did you pump yourself high into the sky on a swing? Did you bask in the sun, run with the wind? Did your imagination soar?

Were you a friend today?

Do you like your teachers? Therapists? Classmates? Who do you like the best? Why is he/she your favorite? Do you have a buddy?

I’m here. I’m listening. I want to know everything.

What did you eat for lunch? Are you hungry? Thirsty? Do you want a snack?

Who did you sit next to in Morning Meeting? Laugh with on the playground?

How do you feel inside right now? Do you think in colors, pictures, symbols, letters, words? Tell me. Show me. Help me understand.

What does it mean when you repeat sounds over and over and shield your eyes with flat palms? What are you thinking? Where are you? Take me there too.

What I know:

You like sandals on bare feet. Hugs. Squeezes, massage.

You need to run, jump, bounce, touch and be touched.

You adore your daddy, Stuart Little, Woody from Toy Story.

You’re excellent at matching, sorting, repetition. You thrive on schedule and routine. You do not like to be wrong and prefer to “do it myself.”

You like privacy in the bathroom, alone-time in your room, “close the door please.”

Very slowly, you’re learning to play piano. You can write letters and numbers. You eat almost everything as long as the textures are separated. You seem to prefer red food. Except in popsicles.

Sometimes you need space and quiet to look at books (are you reading?), roll your cars, race your trains.

And sometimes you prefer company, a hand to hold, a friend to jump with on the trampoline. You like your sister close by. You need your daddy to throw you around, toss balls, race…and snuggle. You like hats, Thomas the Train, playing in sand and water.

What did you say? You want a popsicle? Yes, I’ll get you a popsicle! Thank you for asking! Which color do you want? Red, blue, green?

Orange! Thank you for telling me! I’ll get you an orange popsicle.

You’re welcome, Sweetheart. Take it outside please.

How much do I love you? More than there are numbers. Higher than there is sky. Wider than any ocean. Beyond the place birds fly.

But dear, darling, adored child, what do you think, feel, dream? What niggles at your heart? Tickles your mind?

What do you want to be when you grow up?

What’s your favorite color?

If only you could tell me.

Sunday, June 10, 2018

In My Small House

The following is an edited version of an essay first published in 2010. It’s particularly meaningful today as we adapt our home to meet the needs of our large, loving multi-generational family.

In my small house, elbows bump. The tv and radio are too loud. There is clutter and a line for the bathroom. There is straightening hair in the hallway, a crowd at the mirror and chairs wrapped like ribbon around the dinner table. There is teasing over passed gas, stinky bathrooms, everyone-sick-at-the-same-time.

Like a tiny town, there are no secrets in my small house. No sneaking out when you're grounded or cheating-on-your-diet-no-one-will-know. No hiding Reese's Cups or saving the last bit of cheesecake for a solitary midnight snack.

There is noise and chatter and laughter in my small house. There is talking after lights out in shared bedrooms. There is arguing and there is making up.

Tinkling piano keys stream music into every corner of my small house. Flour footprints trail into the hallway and the sweet aroma of warm sugar cookies tickles my nose.

In the spacious back garden my tow-headed 4-year old learns to swing. Her legs catch the wind as she sails into the sky. For two exhilarating hours. Without stopping.

On the street in front of my small house, my competitive 7-year old meets his 6-year old sister's challenge to ride his bike "no hands!" He does her one better, propping his feet on the handlebars: "No feet either!" He hits a curb, tumbles, snaps his collar bone. Three cozy days at home later, he returns to school with half his math book completed.

My Kidz
Early attempts to teach homeschool PE involve giggling circles around a fat, white bark tree. (Later, we use the space to train for competitive team sports.) We watch a mother butterfly lay eggs on a milkweed plant placed at our kitchen table. We chart the progress of her babies from pupa to wet-winged Monarch.

In the living room of my small house I braid wire into my 10-year old's long hair for her lead role in the homeschool musical. Her endearing, high cee voice sings light into the shadows.

We "do school" all over my small house until one by one my babies leave for high school, college and life.

Now, this very minute, wheels rattle across the hardwood floor in my small house. A pony tailed cherub pushes Big Bird into my kitchen office using a little red stroller. Her soft pillow cheeks puff into a smile. "Nonnie!" she sings.

I swoop my grandbaby into the air and kiss her perfect little face.
So. Much. Love.
 Concrete or wood, tile or carpet; barrier walls or open gardens; a house is just a shell for living. It's what's inside that matters.