Estranged in her own world

Andrew Montoya says he has worn bare spots in the grass form swinging so often with his daughter. CNJ staff photos: Andy DeLisle

By Marlena Hartz: CNJ staff writer

Her knees drawn to her chest, Darian Montoya, 11, crouches in the bathtub and bangs her head against the faucet, over and over and over.

A protective helmet filled with foam protects her skull. But the shield isn’t always enough.

For Darian — an autistic child with saucer eyes and a mess of dark hair — violent outbursts are the norm, according to her parents, Dawn and Andy Montoya.

Darian routinely lashes out at her family, her two sisters, strangers; more often, she harms herself. Once, she hit her head so hard against a wall, her ear drum burst, her parents said.

“Our day is based on what mood she is in,” said her mother, 32. “It’s like walking on eggshells.”

“It completely,” she pauses, and her husband finishes, “consumes you.”

Darian, like 50 percent of all those diagnosed with autism, does not speak. Instead, she moans. Her wails, which are constant, vary in pitch, from low growls to high-pitched screams.

“She can’t tell you anything hurts,” said her mother, seated on a couch in her Clovis home. “So, you go down a huge list.”

“Did you move her dresser? Is it the scent of a new candle?” interjects her father, 38, who quit his job to care for Darian full-time.

Sometimes, it is as simple as a new candle; many times, there is no telling what triggered her outburst, he said.

Life for the Montoyas is cluttered with questions. Answers are elusive.

“Nobody has answers,” said Dawn Montoya, a gray-eyed special education teacher at Sandia Elementary School in Clovis, who was inspired to pursue the career by her daughter.

The Montoyas do not know why their daughter is autistic, although they believe, as many researchers do, it is a result of genetics or the environment, or both.

According to the Centers for Disease Control and Prevention, one in 166 children in America are born with an autism spectrum disorder, a group of developmental disabilities defined by significant impairments to social interaction and communication. The abilities of those with autism swing from gifted to severely challenged. Darian lies at the latter end of that spectrum.

“She is rock bottom,” Andy Montoya said.

“People have this misperception that people with autism have savant skills,” Dawn Montoya said.

Darian’s autism is truly disabling. She adores lights and swing sets, but she has no special skills, the couple explained.

Nationally, autism spectrum disorders have morphed at an alarming rate.

Just five years ago, roughly one in 1,000 children were born with an autism disorder, according to Jan Butz, a certified behavior analyst who works with autistic children in Clovis Municipal Schools.

Though signs link autism to genetics, its cause is still a mystery, Butz said. “That’s why there is autism research going on all over the world,” she said.

But hanging questions about why their daughter is the way she is do not consume her parents, Dawn Montoya said.

“There are certain parents that are grasping for (those) answers. I do not,” she said. “It won’t change anything. We struggle every day, and it won’t change that.”

Answers the Montoyas do yearn for center around Darian’s behavior, which they say has worsened in recent years. They want medication and treatments that work.

So far, they have found none. The swirl of psychiatric medications Darian had been on previously deepened her aggression, so much so that the Montoyas decided to halt her doses and seek treatment for her at a neuro-rehabilitation center in Texas.

There, treatment required Darian be isolated from her family, the Montoyas said. Being away from their daughter broke their hearts, her mother said.

“Does she know we are coming back? Does she think we are mad at her? Does she think that she did something wrong?” she said she asked herself as she left her second-born daughter at the treatment center.

She hoped a book of photos and messages she made for her daughter, “Goodnight, Darian,” would remind her of her family. “Dream of wonderful things,” one of its last pages reads. “Our love will fly to you on angel’s wings.” She pleaded with staff to read Darian the book before bedtime, but there was no way to ensure that her wishes were kept, she said.

After months of treatment, the Montoyas said Darian’s behavior worsened. She became increasing withdrawn and lost 25 pounds, according to her parents.

“She would stare right through you,” her mother said.

Being apart from their daughter, the parents have found, is not the answer. The couple decided to bring Darian home.

“It goes against every maternal instinct to say your home is not the best place for your child. … How can you trust someone is hugging her at night?” asked Dawn Montoya, whose goal is to find a way to keep Darian at home.

“No one would tell us wait six months if our daughter had cancer,” she said.
“We can’t find the help we need,” she said.

The couple are researching a program in Baltimore, Md., they hope can help Darian.
While their search for help drags on, the Montoyas live day by day, hour by hour, moment by moment. And cherish moments they find peace — like the second Darian laid her forehead against her mother’s and gazed into her eyes, following a vicious tantrum.

Or this moment, when Darian shuffles over to her father, her shirt taut against her pot belly. The father and daughter embrace. As he holds her close, he hums and her growl softens to match his hypnotizing tone.

For a minute, they sing in concert.