Why "Running with Bunions"?

Sunday, October 28, 2018

Until We Find Him

If I have a child who’s lost I’m gonna look for him how long? I’m not gonna look for him a month. I’m not gonna look for him a year. I’m not gonna look for him six years. I’m gonna look for him until I find him or die. I’m gonna look for him UNTIL.

-Dr. Phil implores Tim to not give up on his son (paraphrased): https://www.drphil.com/shows/2121/

According to a recent educational review, in the two years since he came to live with Super Daddy, started school and ABA therapy, and received consistent at-home support, Wonder Boy has learned to read just 11 sight words. He can’t yet add two single-digit numbers to find a sum and requires assistance to remain engaged in an activity. His “cognitive function is an area of concern as evidenced by poor performance in learning new skills, age appropriate adaptive behavior skill development and below expected levels of understanding.”

It seems progress is slow to intermittent. It’s trailed, waned, drooped and declined. But? There is progress.

In the last two years, Wonder Boy has learned to:

use the potty, wash his hands, brush his teeth, dress himself, tie his shoes, zip, snap, fasten. He now cheerfully consumes a variety of healthy foods like meats, fruits and vegetables; his culinary vocabulary having expanded from frozen pepperoni pizza, goldfish and skittles.

He reads musical notes in both bass and treble clefs and simultaneously plays those notes on the piano. On the trampoline, He jumps, hops, flips.

He can run a mile without stopping.

He knows and expresses the names of the people in his life, that a stove and refrigerator are in the kitchen and a couch is in the living room. He requests the bathroom and asks you to “close the door” as you leave. He fills family water glasses at mealtime.

He still likes Thomas the train books but now also sits with I Spy readers, the “How Does a Dinosaur” series and Nursery Rhyme picture books. He follows words, turns pages and laughs appropriately at funny illustrations.

He says please, thank you, you’re welcome, covers his mouth when he coughs and is learning to say “bless you” in response to a sneeze.

He says “I love you.”

He communicates using an AAC Device, Picture Exchange Communication System (PECS) and words. He gives world class hugs and squeezes.

And? He can read 11 sight words consistently, count to 30 and say his ABC’s. He knows his colors and expresses a preference for “red.” He writes his letters on the line. In therapy, he’s working with facilitators to compile a list of 300 mastered nouns.

All this in only two years!

True, there are breaks in his ability to maintain momentum. A portion of his life is spent in a purportedly unstructured, unsupported environment. Where his AAC device is neither used nor charged, language isn’t required, routine is sporadic. Transitions continue to erode precious productive time.

There are moments when he refuses to work, speak, try. There are sleepless periods where he is angry and frustrated for no apparent reason. And tears and tantrums replace eye contact.

Not gonna lie. This gig? It’s. Hard.

How long will we persist? How long will we effort, believe, press, prompt and encourage? How long will we presume competence, seek SNUG? How long will we look for him when he's tucked inside his brain, deep in his own reality?

We're gonna look for him UNTIL.

Sunday, October 14, 2018

October is AAC Month: Fun Farm Field Trip

There were goats. Chickens, roosters, turkeys, geese, horses, sheep and huge, pink pigs. There was a playground, games and piles and piles of pumpkins. But first? Wonder Boy wanted to go on the hay ride.

Wonder Boy howled. His arms and legs tensed. He jabbed a finger in the direction of the green tractor, hitched to a wagon and parked before rows and rows of corn.

I kneeled beside Wonder Boy and tapped the device he wore draped across his shoulders. “Use your words.”

Wonder Boy sniffed. He pulled the device close to his body. “I want to ride the…” He hesitated. Thrust the machine toward me.

I pointed to the button for “groups.” He tapped it and followed up with “vehicles.” He saw the word he needed, pressed another button and the machine spoke. He looked at me. I waited.

“I want to ride the tractor,” he said.

“Thank you for telling me!” I said. “But it’s not our turn.”

Wonder Boy stood, stomped his feet, shook his head, howled.

“Five minutes,” I said. “Wait five minutes.”

We worked on vocabulary as Wonder Boy circled a chicken yard. “Chicken,” said his device. “Chicken,” he repeated. “Rooster,” intoned the machine. “Rooster,” said Wonder Boy. He pointed at the red topped creature.

So many different kinds of bird names to learn
Finally, finally, it was our turn. Wonder Boy raced across the muddy field, climbed the wagon steps, planted himself upon a bale of hay.

He giggled and a million tiny stars exploded joy, delight, hope into my chest.

It's so easy to love this boy.
We love playing in the Corn Crib!

Sunday, October 7, 2018

Everyday People, Every Day

Everyday: a standard element or event that happens, is utilized, manipulated or experienced daily. Comfortable, comforting, common, expected, close, cozy, easy, near; a mainstay, habitual, ally and supporter, normalizer. Something – or someone – who is present and available whenever needed.

It’s lunchtime in summer school. Children’s voices echo against tile, create a low hum in the bright, open space. Rubber soled shoes slap, then squeal against gleaming floors. Silverware clatters. Sweet and spicy smells pepper the conditioned air. Amaze Girl sits at the middle of a long table, surrounded by thirty other giggling second graders.

A door slams open and a small person dashes into the room. He circumvents aides and lunch ladies, rushes between lines of students, makes his way to Amaze Girl’s table.

Wonder Boy’s body tightens, muscles contract. Arms down, head up, he howls. Thirty sets of eyes stare.

Amaze Girl leaps to her feet. “Hey, everyone,” she exults. “This is my brother! He has autism.” She wraps both arms around Wonder Boy and squeezes.

“He ain’t heavy, he’s my brother.”
-The Hollies

Pop! Amaze Girl quarters her snap peas. She separates the round, green balls from the crunchy skins. She chews the fibrous bean, sets globes aside.

When she has a pile of emerald spheres, she reaches across the table and places the roly-poly bits onto her brother’s plate.

Wonder Boy uses two fingers to insert the peas, one at a time, neatly, into his mouth.

Wonder Boy loves peas. Amaze Girl is not as fond.

“…siblings in divorce (can) create something positive, using this shared situation to deepen their bond…”

Movie Night. Super Daddy mics a mountain of buttered popcorn, pours it into a bowl. He reclines on the couch, Wonder Boy snuggles into one side, Amaze Girl huddles close to the other. At a break, Super Daddy stands.

Wordlessly, Amaze Girl slides close to her brother.

“They will not be separated.”
-Super Daddy’s response during custody negotiations to the presented notion that responsibility for the children would be apportioned; one child parceled to Mom, the other to Dad.

It’s time to visit Mommy’s house. Wonder Boy waits at the open front door. Who will pick them up this time? He has his backpack, blanket, talker, hat. His hair is brushed, shoes are tied. It appears he has all he needs – except, perhaps, the most important thing.

Wonder Boy grabs Amaze Girl’s shoes. He rushes to where she’s sitting on the couch, immersed in a book. He thrusts the footwear into his sister’s arms and waits until shoes are on her feet, laced and tied and she’s standing close by his side.

Amaze Girl wraps an arm around her brother. “I’m his everyday person,” she says.

The doorbell rings. Amaze Girl squeezes her brother. And he’s mine.