Jessie is autistic and can’t speak, but he sure loves his words

LAKE STEVENS — They hung out on the back deck, just the two of them: the boy who couldn’t speak and his mother who was desperate to give him words.

Cheryl Pyles had tried to teach her son to print the alphabet at a table inside their Lake Stevens home. The contact of pencil to paper would overtax his tightly wound sensory system. He’d recoil.

Ballpoint pens bothered him, too.

And crayons? Well, those he’d eat.

So Cheryl sat on the deck with Jessie in her lap or by her side. She’d write the letters in capital and lower case and draw shapes in chalk on the wooden planks while Jessie watched intently.

Day after day in the spring and summer of 2013, she would write and Jessie would inspect. The steps and railings leading to the backyard became their giant slate, jumping over the grass to Jessie’s long plastic slide and play area.

Jessie sometimes would erase the shapes, but not the letters. Never the letters.

In time, he began to put his hand over his mother’s wrist or hand, feeling the motion of the characters that so intrigued him.

One afternoon, as July gave way to August, Cheryl called to her husband, Sam. They looked out the kitchen window as Jessie used his forefinger to trace over each of the letters Cheryl had written in the backyard.

It seemed like a breakthrough for parents who wanted to help their autistic child learn to communicate by whatever means possible — the written word, the robotic voice from a computer, a smattering of sign language. Oh, how they’d wished to trade his usual vocalizations — high-volume hums and piercing screeches — for a word or two.

Jessie eventually took to the vast supply of chalk they’d bought at the Dollar Store that summer. Together, mother and son covered the back and a side of their salmon-hued house as far as their arms would stretch. Symbols. Song lyrics. Letters.

These days, at age 7, Jessie has learned to tolerate the sensation of putting pen to paper but he prefers black felt markers, which glide easily over many surfaces. He uses them on interior walls, the refrigerator, the dishwasher and the screen from an old television set. Words are scrawled from floor to ceiling.

Jessie writes on the walls with impunity. His mom and dad figured they’d try an unconventional approach to encourage their unconventional child.

“I know what most people would say, ‘Oh my God, you let your kid write on the wall.’” Cheryl said. “But, to me, it’s like, ‘Look! My kid can write!’”

For a child who does not speak, does not read or know all his letters, Jessie can write big words with flawless spelling.

Many are stockpiled in his brain, memorized from the opening and closing credits of Disney movies. He uses his big toe to push buttons on a VCR that has been kept around just for him. At 50 cents a pop at Half Price Books, videotapes are a bargain that make Jessie happy. He reverses and fast-forwards through the likes of “James and the Giant Peach” to reach the movie credits. He copies the words on the TV screen as they scroll by.

The words float around in his mind long after the TV is turned off.

English writer Daniel Tammet is an autistic savant who thinks in numbers and once spent five hours reciting pi from memory to 22,514 digits. In his mind, numbers have their own shape, color and feel. It is a mystery how Jessie perceives letters and the words they make.

Jessie wrote “Miramax” inches from the ceiling inside his bedroom. The name of the movie company also can be found above the toilet in the upstairs bathroom. He’s written “Universal Studios,” too.

The trick now is getting Jessie to connect his words to the world around him in some useful way.

And that is slowly beginning to happen.

When Cheryl jotted “blue” and “green” on a kitchen wall a while back, Jessie wrote “red” and “yellow” below.

He has correctly written “The Lion King” to identify a song from the popular animated movie when he heard it playing on an iPhone.

Beneath the word “pig,” he penned “Charlotte’s Web.”

Cheryl and Sam draw pictures of animals on the walls for their son.

There is a stick figure of a doctor with a stethoscope and a sentence mentioning that Jessie will be getting anesthesia and an MRI.

Mainly, though, the walls are Jessie’s to fill.

His hands are his voice, and his parents are listening.

“When he runs out of room, we’ll paint over it and he can start again,” Sam said.

Many challenges

About 3.5 million Americans fall somewhere along the autistic spectrum of neuro-developmental disorders affecting social interaction and often communication skills. The most profound cases require a lifetime of around-the-clock care. On the other end are those who hold down jobs and pay mortgages.

On average, one in 68 school-age children land on the spectrum, according to an updated study released by the U.S. Centers for Disease Control and Prevention earlier this month.

Autism is not obvious at birth. In that way, it’s a sucker punch. All can seem well that first year or two, sometimes longer, before it reveals itself. Beautiful babies become socially awkward toddlers. The gap quickly widens between expectation and reality. Parents must face the uncertainty, adrift in worry and at the bottom of long waiting lists for services.

And so it goes.

The diagnosis typically begins with a missed milestone, perhaps speech that is lost or doesn’t develop, a lack of gestures, a gaze that is averted.

In Jessie’s case, his mother noticed early on that he didn’t reach out to her. Alex, her eldest son by a previous marriage, would wrap his arms around her neck. Jessie held his arms limp by his sides and leaned against her.

Doctors initially attributed his odd behavior to a surgery Jessie had at 14 months. He was born cross-eyed. The surgery redirected his wayward eye. The theory was Jessie’s idiosyncracies would go away once his brain had time to adjust.

It turned out to be just one of many challenges for Jessie.

Jessie’s diagnosis includes autism with developmental delay, a sensory-processing disorder, a delayed hearing response in his left ear and apraxia, a speech disorder in which his brain has trouble making his lips, jaw and tongue move.

He also has pica, a word taken from the Latin for magpie, a scavenger bird that seems to eat just about anything. As a baby, Jessie nibbled constantly at his crib. He’d eat drywall, paper, crayons, Velcro and rubber, which explains why the lawn mower no longer has its grips and that trip to the emergency room the day after Christmas when Jessie consumed pieces from a cousin’s foam puzzle.

It’s not the world Sam and Cheryl envisioned when they re-connected later in life and started a family of their own. They’d first met in the 1980s at Lynnwood High School, where they would leave notes for each other on a desk in English class.

They do their best. They’re a one-income working-class couple treading water to pay the bills and meet their son’s many needs. At times, they appear beat, yet they know they’re still in the early legs of their parental journey.

Jessie was 3 when Cheryl left her job as a supermarket garden manager. Today she is his primary companion, the cutter of red tape, the chauffeur to hospital and therapy appointments, the recorder of bowel movements, the haggler with insurance companies and the ogre with the syringe who must get Jessie to eat something nutritious, including pureed blends with lentils or kale.

Worries about Jessie’s future keep her up at night. Odds are he’ll outlive his parents.

Sam’s an apprentice elevator mechanic. Typically, he wakes up at 3 a.m. and heads out the door by 4 a.m. to far-away job sites. Congested traffic during the afternoon commute is part of the gig. Jessie’s high-pitched sounds greet Sam’s weary arrival back home. Jessie is always glad to see his dad, who puts him to bed each night.

By trade, Sam is trained to fix things.

It is not so simple with his son.

“With Jessie, the manual changes every day,” he said.

Yet these days Cheryl and Sam are as hopeful as they have ever been.

“Little victories”

Hope arrived at the front door in November thanks to a 2014 Washington state Supreme Court ruling. It guided professional help into Jessie’s home and into those of other families with autistic children.

After the decision, the state insurance commissioner insisted that state-regulated private health plans provide coverage for medically necessary treatment of autism, including speech, occupational and physical therapies, and what’s known as Applied Behavior Analysis therapy. The theory behind ABA is that people like Jessie are more likely to repeat behaviors that are rewarded than those that are not.

Jessie spends four-hour stretches, five days a week, getting one-on-one help at home before heading off to an abbreviated school day.

Sitting at the table in the living room, Jessie is learning to use his iPad to communicate. He’s also slowly figuring out his letters, sign language and how to imitate people — another aspect of acquiring language.

Each session is a give-and-take of tasks and rewards in which Jessie must request what he wants from a growing supply of erasable writing books, music, squishy toys and computer programs.

Jessie taps a series of pictures and symbols on his iPad to make a computerized voice say, “I want Andrea to draw.”

Just as his mom had done with chalk on the back deck, Andrea Gales draws a picture for Jessie on a sheet of old dot-matrix printer paper before turning the tables and requesting him to do something for her.

Back and forth they go with Gales recording data about Jessie’s successes and shortcomings. That information is analyzed to determine different ways to help him, said Tess Gelderloos, who supervises Jessie’s program for APPLE Consulting, a Bellevue-based firm that specializes in working with people with autism.

Jessie isn’t the only one learning from these sessions. Cheryl is soaking up what she sees, absorbing the techniques and how to better use the technology to help her son.

“He’s a lucky guy,” Gales said. “She is so dedicated and patient.”

Jessie took an instant liking to Gales. His progress shows in the data, but also in daily vignettes.

The other morning, Jessie was dressed and ready for her arrival when his mom heard him connect two sentences on the computer for the first time.

“I want to draw. It is time for Andrea,” he announced.

Cheryl was thrilled.

“Other people don’t get how big our tiny little victories are,” she said.

Getting his point across

Life with Jessie is a series of setbacks and celebrations.

A year ago, he received his first iPad from Ben’s Fund. The nonprofit named for the autistic son of Seattle Seahawks general manager John Schneider helps families with autistic children.

Jessie liked to put the iPad up to his ear. Somewhere while driving 50 mph over the U.S. 2 Trestle last summer, it went flying out Jessie’s passenger window. A family search party could not find it in the tall grass more than 30 feet below.

Cheryl was devastated; Jessie, confused.

Sometimes, she confides, there are those horrible days. She might cry because she’s worn out and plod along because there is no choice. Jessie has no concept that she is sad or angry or frustrated.

And maybe that’s a good thing.

People outside the home describe an increasingly content child.

“I think he’s just a happy kid who loves life and loves his mom,” said Katie Dawson, an occupational therapist with Providence Children’s Center in Everett who has worked with Jessie since September 2013.

Dawson remembers a time when Jessie would lie on the floor and cry, not wanting to go anywhere or do anything asked of him.

Since then, he has improved in his ability to communicate his wants and needs. When songs were sung during circle time last spring, Jessie would write words from the lyrics on a small whiteboard.

“Jessie is just so satisfied with himself,” Dawson said. “You can tell when he gets what he is asking for, he just feels good.”

Jessie is becoming increasingly resourceful in getting his point across.

The other day his parents took him to Children’s Hospital in Seattle for a procedure to measure the electrical activity in his brain. They dread those trips, but, with the exception of Jessie missing the barf bag and vomiting on his mom’s shirt, this one was about as good as it gets.

At home afterward, Jessie’s iPad had run out of juice. He couldn’t use it to ask his dad for another fiber gummy.

So Jessie pointed to the plastic jar and gestured as if unscrewing the lid.

Sam couldn’t say no.

“You turkey,” his father said with a grin. “You said, ‘Open.’”

Jessie plopped into a beanbag chair, gummy in hand, quite satisfied.

Grateful for gains

A good day for Jessie might include a dip in the YMCA pool, a trip to IHOP or swaying back and forth on the swing that hangs from his bedroom ceiling.

Cheryl and Sam aren’t the only ones at home looking out for Jessie. Pandora the cat, one of four family pets, sleeps with him at night, often sees him off on the school bus and watches over him in the backyard.

At night, Cheryl likes to read to Jessie when he takes a bath.

Some evenings, Jessie is more eager than others to hop in the tub. He let her know that not long ago when she told him it was bath time.

“Try again,” the iPad voice told her.

Cheryl could only laugh, but Jessie did get his bath.

The iPad has a password that locks in to his language program. By sheer observation, Jessie cracked the code to reach some games. His parents admired his ingenuity and changed the password.

Cheryl knows the odds are long for Jessie talking on his own.

“What parent of a non-verbal child doesn’t want to hear ‘Mama’ or ‘I love you?’” she said.

They’ll keep hoping and trying, but Cheryl is grateful for what her child has gained.

Jessie is talking to them in his own way.

The other day, she bought a new container of chalk.

Spring has arrived.

The deck is bare.

Eric Stevick: 425-339-3446, stevick@heraldnet.com.

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