August 22, 2014

Autism: Unlocking Mireya Salazar's world

DENVER (AP) – Her name is Mireya. She is 3 years and 3 months old. She has fine black hair, a thing for “Handy Manny” cartoons and one of the most prominent last names in Colorado. Many nights, Mireya Salazar will not fall asleep unless her feet are touching her mother and her head is touching her grandmother.

It's part of an elaborate bedtime ritual in which she must place her pillow with the pink checkerboard and butterfly pattern just so, in the middle of the bed.

She has other routines, other rules. Every door in the house must be closed. If they are not, she will slam them shut. She won't eat a broken Cheerio or pasta that is not white. She can seem more interested in a pink balloon than in her father, more fascinated with a blank space in the distance than in “Papa Ken” – her grandfather, Interior Secretary and former U.S. Sen. Ken Salazar.

What few baby words she once had are lost. She hums when upset, as if she is sounding an alarm.

Mireya was diagnosed with autism, a confounding neurological disorder that affects an estimated one in 110 U.S. children. The national Centers for Disease Control and Prevention calls it a public health emergency. Her therapists say she is too young to be placed precisely on the spectrum of autism disorders, a range of conditions distinguished by repetitive behaviors and difficulty communicating and connecting with others.

Many children with autism seem trapped in their own little world – although that shell is cracking, slowly, with early intervention.

Before the warning signs, before Mireya was diagnosed, Ken and Hope Salazar became her foster parents.

Their daughter Andrea and Mireya's father, Nelson Rodriguez, were in no position to take care of Mireya, Hope says. The arrangement would allow Andrea to focus on college and work – and also make Mireya eligible for Ken Salazar's health insurance.

Then a doctor's words – “I'm sorry, but Mireya has autism” – launched the Salazars on a journey that will sound depressingly familiar to other families living with the disorder. They've had to come to terms with the diagnosis, quickly choose from an array of treatments, and haggle with health insurance and public school officials.

“For the parents of a child with autism,” Ken Salazar says, “it's very easy to get lost.”

On one level, Mireya has benefited from being a Salazar.

Not all families can get a breakfast meeting with the school board president or an apology from the superintendent of Denver Public Schools. Not all families can find a way to send their child to a treatment center that costs $27,600 a year.

But on another level, having a grandfather who has the president's ear has made little difference. DPS rejected the family's request to pay for Mireya's attendance at Firefly Autism, the expensive private treatment center; Ken Salazar's health insurance so far won't cover her therapy; and Mireya is on a long waiting list for a Medicaid waiver that would help pay the bills.

The Salazars say that by telling their story, they hope to raise awareness about autism's many faces. Their openness also offers a glimpse into deeply personal challenges facing a family that cherishes its privacy.

So many questions surround Mireya. Over lunch last month at a Mexican restaurant in Wheat Ridge, with his granddaughter seated one table over, Ken Salazar mentions these:

With the right treatment, will she reach her potential? Will she ever talk? Take care of herself?

Or will she get worse?

All the people in her life would need to get used to not knowing.

Hope Salazar is Mireya's grandmother, primary caregiver and protector. At age 56, it was not a responsibility she anticipated. But Hope says, “She has been the biggest joy in my life.”

Ken Salazar reaches his hand to Mireya's. She doesn't take it. So he pats her head instead.

This is typical, this distance, at the start of a visit. It takes her 24 or 36 hours to warm up to him.

The reality is that Salazar's Cabinet position keeps him otherwise occupied. On a March Sunday, he has just returned from watching a sandhill crane migration in Nebraska, speaking about education at an Indian school in Oklahoma and discussing oil-spill containment with oil and gas executives in Washington, D.C.

“I am the provider and a counselor – and support,” says Ken Salazar, who visits Denver every two to three weeks but otherwise tries to talk to Mireya nightly.

While Andrea is attending class at Metropolitan State College of Denver or working part time as a desk clerk at a downtown hotel, Hope is driving Mireya to and from school, taking her to visit her father's family twice a week, using each meal to reinforce lessons of therapy.

Mireya (pronounced “mee-RAY-ah”) Elena Salazar was born Jan. 10, 2008, at North Suburban Medical Center in Thornton, a surprise to everyone in her life. Her mother, Andrea, chose the name from a baby-name website that described Mireya as meaning “miracle.”

Neither Andrea nor Nelson Rodriguez was ready for a serious relationship, let alone a child.

“Our relationship as partners never really worked out,” says Nelson, 23, a graduate student at the University of Northern Colorado in Greeley. “But I'm happy to say we've worked together for the sake of our daughter.”

One of the hardest decisions, Andrea says, was allowing her parents to become Mireya's foster parents. But if Andrea was ever going to be in a position to support Mireya, the thinking went, she needed a college degree.

Both families emphasize that despite early differences, everyone's focus is on Mireya's well- being.

The relationship was tested when Hope, Andrea and Mireya moved from Denver to Washington, D.C., in June 2009 so the Salazar family could be intact again. (Ken Salazar had been sworn in as interior secretary that January.)

Until she was about 18 months old, Mireya developed like a typical child. She sat up, crawled, walked and babbled at all the expected times.

Then she started regressing.

The words slipped away. She started to hum.

Preoccupied with the move, her own health problems and raising Mireya, Hope says she didn't pay much attention to it. It became white noise. But one night in November 2009, unable to sleep, Hope picked up a parenting magazine. An article on the warning signs for autism described this new Mireya.

She flapped her arms. She lined up blocks in a row. She took a number puzzle apart and put it back together over and over again.

At first, Mireya's doctors in Washington found fluid in her ears and suspected a hearing impairment.

After consulting with other doctors, the Salazars rejected that hypothesis and took her to Children's National Medical Center in Washington for a battery of tests that ultimately resulted in her autism diagnosis.

The specialists seated around the conference table that day in February 2010 laid out their findings: Mireya was overattached to Hope because her world was overwhelming. She was sweet and not aggressive (good) but uninterested in other people (not good). Her routines and rules gave her comfort.

She also was ahead of the game because the diagnosis came relatively early, at 2 years and 1 month old.

According to the CDC, the median age for diagnosis of autism is between 4 1/2 and 5 1/2 years.

More than six decades after autism was first identified, no one knows exactly what causes it or how best to treat it.

Early on, psychiatrists blamed cold and distant parenting – so-called refrigerator mothers. While that has long since been discredited, the debate over the potential triggers remains divisive.

The consensus view among researchers is that the condition is created by a combination of genetic susceptibilities and environmental factors. Studies show those factors can include premature birth, infection during pregnancy, parents who are older, and proximity to places with high levels of pesticides and toxins, says Geraldine Dawson, chief science officer with the advocacy group Autism Speaks and a former University of Washington researcher. A vocal faction in the autism community points to mercury in thimerosal – a preservative in some vaccines – and to the measles-mumps-rubella vaccine, which used to contain thimerosal. Dawson and others say no study has shown a definitive link.

The Salazars say that guessing game is one they have avoided.

“Trying to figure out, `What happened here? Is it a genetic issue? Why us?' All those things, I think you go down a pathway that isn't fruitful,” says Ken Salazar. “A pathway that is fruitful is to say, `We have a child with autism, and we have to deal with that reality.' “

But how, exactly? “The Autism Sourcebook,” which sits on the Salazars' bedside table, includes an appendix with 68 treatments and interventions ranging from acupuncture and vitamins to more traditional therapies.

And the evidence on what works is far from conclusive.

Earlier this month, the journal Pediatrics published a paper that said intensive behavioral therapy – the usual starting point for young children with autism – helps some but not all children talk more, improve behavior and boost their scores on intelligence tests.

The Salazars grew interested in a promising treatment called the Early Start Denver Model, developed in the 1980s by Sally Rogers, a psychologist who was then at the University of Colorado Health Sciences Center.

Traditionally, much of behavioral therapy has involved sitting children down at a table, working on lessons and rewarding them with things like M&Ms.

The Early Start Denver Model takes a different approach, building interactive lessons into play and the normal flow of the day in an effort to hone social, language, cognition and coping skills such as learning to wait and ask for things.

There's an emphasis on building relationships between adult and child and following the child's lead.

There is positive reinforcement, but not of the sugary variety. For instance, children who point to cranberry juice over orange juice at snack time get the logical reward: their drink of choice.

The Salazars found their treatment options in Washington lacking. After meeting with Denver- based therapist Diane Osaki, a practitioner of the Early Start Denver Model, the Salazars decided to move the Salazar women back to Denver to start treatment there.

In May 2010, Mireya started therapy with Osaki.

While Mireya made strides with treatment, her family started running into roadblocks elsewhere.

Before she turned 3, Mireya's therapy was fully covered by Denver Options, a nonprofit that uses federal, state and local money to offer early intervention services for developmentally delayed or disabled infants and toddlers.

Once a child with special needs turns 3, federal law mandates a free and “appropriate” education – a term open to interpretation.

The Salazars planned to enroll Mireya in a Denver Public Schools preschool program in January. But they came away deeply frustrated with both the process and DPS's initial individualized education program, or IEP.

The Salazars disagreed with the type of one-on-one therapy she would receive, believing it was too rigid and not as promising as the Early Start Denver Model.

DPS proposed putting Mireya in a class with four autistic boys ages 3 to 5 and giving her time with the general student population. But the Salazars didn't think Mireya was ready to ride the bus or eat breakfast in the cafeteria – both with assistance from teacher's aides – as DPS proposed.

They thought they didn't have enough time or information to make a good decision. DPS, for instance, wouldn't identify the four schools it was considering for Mireya, and when it did pick a school, her prospective teacher was unavailable to talk until later.

The Salazars decided to enroll Mireya at Firefly Autism, where the therapy mirrors what already was working for her.

Near the end of January, DPS came up with a second plan – which the Salazars viewed as a more collaborative effort that included better defined goals.

But by then, Mireya had been attending Firefly for three weeks and the Salazars thought uprooting her might set her back.

DPS rejected the Salazars' request for tuition reimbursement to attend Firefly, saying in a written notice that the southeast Denver center “does not meet her identified educational needs.” The team that drafted Mireya's education program said she needed daily opportunities to interact with non-autistic peers.

DPS is prohibited from discussing confidential student records, including the details of IEPs, says DPS spokesman Michael Vaughn.

But in general, Vaughn says, the district follows a federal law requiring school districts to educate special-needs students in “the least restrictive environment” – meaning interaction with the broader student population as much as possible.

The district does not provide tuition reimbursement for services it can provide itself, and only in rare circumstances would that be considered, he says.

Vaughn says the district is committed to working with families on plans that meet each student's needs.

Lorna Cochrane, a senior teacher at Firefly Autism, holds a paintbrush in front of Mireya.

The teacher is searching, like always, for those elusive brown eyes, for that moment of eye contact – a chance to crack the door open a little wider.

Cochrane also wants Mireya to point, to communicate a choice. And she does, at the paintbrush.

A little boy in the room shrieks. Mireya forgets about finger painting and leaps into Cochrane's lap.

“That she is coming to us for comfort instead of getting upset – that's actually really cool,” she says.

This kind of attention comes at a cost – from $13,600 a year for an after-school program to $66,900 for an intensive treatment program for older kids.

The cost is so high because of a more than 1-to-1 student-teacher ratio, speech and occupational therapy, and worker's compensation insurance. The insurance bills are high because aggressive older children can pull hair, kick and bite out of frustration.

Sarah David, Firefly's executive director and chief executive, calls early intervention a bargain compared with the long-term societal costs of autism gone untreated.

About 30 children receive treatment at the Firefly center. The majority of those ages 6 to 18 are being paid for by school districts unable to accommodate them.

The parents of the early-childhood students – Mireya's classmates – are paying out of pocket except for a few whose health-insurance plans provide coverage.

But Firefly's biggest growth area involves sending its board-certified behavioral analysts outside the center to homes and other settings. The reason: a state law that took effect last July requiring some private health-insurance policies to cover autism treatment.

The mandate, however, applies to only about one-quarter of Coloradans with autism spectrum disorder.

The Salazars appear to be among the unlucky.

Their insurer, the Blue Cross Blue Shield Federal Employee Program, contends it does not have to comply with a state mandate, according to the Salazars.

A Blue Cross Blue Shield spokesman said the plan covers medical services for autism in some cases, though the Salazars say their claims have been denied. The family and insurer are still discussing the matter.

Some parents have filed lawsuits seeking tuition reimbursement from school districts or coverage from insurers – moves the Salazars have not ruled out.

“You have to be relentless,” says Betty Lehman, executive director of the Autism Society of Colorado. “The school districts and insurance companies, they just bank on it . . . ‘Who would have time to fight us? Nobody.’ They know how to make you give up.”

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Information from: The Denver Post, http://www.denverpost.com




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