Monday, May 5, 2008

Parent are Autism's Hidden Victims

Sharky McGarry, who has autism, is comforted by his mother Lillie McGarry after he became upset. Photographed in their Capitol Hill apartment in Seattle on Monday, April 21, 2008. (Dan DeLong / P-I)

Parents are autism's hidden victims

Baffling disorder hurts more than just those who have it

Last updated May 4, 2008 11:56 p.m. PT


Sharky Munat was 2 years old when the police came.

For 45 minutes the toddler's screams pierced the thin walls of his mother's two-bedroom apartment, until a neighbor finally called the cops.

His mother was used to screaming from her unusual child, who cried for hours if she simply laughed while watching television. But Lillie Addams felt sick when a police officer stopped them to check her son for bruises as they walked to the park.

The officer quickly realized there was no attack -- he was just one of "those kinds of kids" -- but his mother wouldn't know the kind was autistic for two more years.

"Check it out, buddy. If you keep it up, they are going to take you away," the one-time ballet dancer told her son once the officer let them go. Then she sat on a park bench and cried for an hour.

Children have autism, but parents are often invisible casualties. Their child's disorder ricochets through their lives, breaking up marriages, draining bank accounts and robbing them of sleep. University of Washington researchers found these parents, among all with disabled children, suffer the highest levels of depression and anxiety symptoms, and parenting stress.

Since Sharky was diagnosed, his mother has dealt with depression, chest-seizing anxiety attacks, insomnia and incessant guilt that she wasn't doing enough.

"It's this overwhelming sense of powerlessness," Addams said. "I feel blamed by society, by insurance companies. As if it was somehow our fault."

Seattle may be a leading center for autism research and treatment, but its therapists and the medical community can't handle the growing number of families dealing with the disorder. Today, as many as one in 150 children are diagnosed with autism, up from three to four out of 10,000 a decade ago.

More than a year after Sharky's diagnosis, the Addams family felt alone and stressed. Without a map for treatment, they, like other Seattle parents of autistic children, were stuck in a maze of therapies for a disorder with no cure.

There are few insurance plans that cover touted behavioral treatments and not enough therapists or slots at specialized schools. Parents can wait 18 months for services -- after doctors urge them to begin treatment quickly -- and pay tens of thousands of dollars a year out of their own pockets for therapy.

Over the past year and a half, Sharky's three parents -- Lillie, her ex-husband, Ted Munat, and her partner, Stormy Addams -- have visited a dozen doctors, therapists and classrooms, yet they still can't fill big gaps in their son's treatment. "Everywhere we have gone they are pushing you in different directions," Stormy Addams, 43, said. "Or they are pushing against you."

On a cool afternoon in April 2007 while many 4-year-olds play at nearby Miller Park, Sharky comes home from school and stays inside his Capitol Hill apartment, running across the wood floors like any kid his age, and talking about Spider-Man and Big Wheels.

But he runs across the same area again and again, his ponytail and hands flapping around him, uttering words often impossible to understand. By his third birthday, this engaging child had choked a baby and wanted to kill the family cat.

His behavior meant there were no raucous birthday parties, play dates or big dinners out for this family because Sharky could get overstimulated, lash out and throw tantrums that lasted for hours, or simply invite unwanted glares and advice from others parents.

"Our world has become very small," said Lillie Addams, a registered nurse at Group Health Inc.'s cardiac unit.

The Seattle P-I talked to families, therapists and researchers around Seattle dealing with autism who echoed her alienation, anxiety and lack of support.

The daily grind

Like an invasive weed, Sharky's autism permeated most daily routines for his first four years.

At dinnertime in June, Stormy Addams snatches Sharky's broiled salmon from their tiny oven, puts it in the freezer and then onto his Hello Kitty placemat, hoping to avoid a scene.

"Make it colder. Make it cold. Make it cold," Sharky begs again and again because if it's warm, he likely won't eat, he will shriek with the same terror as when his bath is too warm.

Then a bite of salmon falls onto Sharky's Spider-Man T-shirt and he begins swiping at it compulsively. When another morsel drops to the floor, he finally screams, and Lillie Addams ushers him to the first of four timeouts in his bedroom.

After two hours of this, dinner finally ends, and it's off to the bathroom, where one parent holds him down so he won't thrash while the other brushes his teeth. Even after the 4-year-old falls asleep in Stormy and Lillie's queen-size bed that night, he thrashes, eventually bloodying Lillie Addams' nose.

"Everything is all drama," Stormy Addams says.

Fast-forward 10 months, and Sharky has taken impressive strides. His sweet social nature now far outweighs more typical outbursts of 30 minutes or less.

But his speech and comprehension remain noticeably delayed, and his mother's worry is just as intense, though now focused on finding and paying for therapy and the right school.

That means Lillie Addams often sleeps in bursts of two to four hours. She tried Ambian, Lunesta and Trazodone, but those sleeping pills worked only for a few months.

"What I am not doing?" Lillie Addams, 39, asked.

Last fall the worry got so bad, she thought she was having a heart attack when her chest began tightening. It turned out to be anxiety attacks.
Chart of autism rates

Since autism remains such a mystery, parents battle this anxiety for years and constantly manage their expectations. When Sharky turned 4, Lillie Addams thought he would never go to college. Now she is not sure.

"Now I just hope he can lead an independent life, and have a girlfriend, or someone to love."

Her maternal hopes fluctuate because her son's autism is impossible to pigeonhole. With an infectious smile, he plays peacefully with his 5-year-old neighbor in the apartment courtyard one day and tells his father he loves him 20 times the next.

"Lots of friends of mine, their first comment is: 'What a happy child he seems to be,' " Munat said.

But Sharky always struggled to speak and understand. In the fall of 2006, a group of therapists, psychologists and nurses told them why, diagnosing him with autism, but not much else.

"It was kind of like this is what you got. See ya bye. We'll send you some paperwork," Lillie Addams said.

Since then, Addams has struggled to understand a disorder that's so hard to define that children are diagnosed on a spectrum. She still doesn't know where her son falls on that scale.

Meanwhile, treatment costs easily overwhelmed this family, which earns a combined $70,000 a year. They would love to get Sharky intensive behavioral therapy, for example, but they can't afford it.

"It's like having a carrot dangled in front of you," Addams said. "I make $30,000 a year, and often the cost of ABA (behavioral therapy) is $30,000."

Health insurance is little help. Few company plans cover behavioral therapies. After Sharky's two working parents cover co-payments for speech and occupational therapy there is little left for such promising therapies.

With little extra money, the three parents patched together Sharky's treatment plan over the last year, and worried his window to progress was closing because of what he missed. Sharky was diagnosed at age 4, later than many children with autism

The expense is one more layer of worry on an already complicated family. Lillie Addams and Munat divorced in 2002, and now split custody.

Yet this three-parent arrangement works, and Stormy Addams' role as stay-at-home mom and ad hoc therapist is clearest, etched in a tattoo of her cradling Sharky that runs down Lillie Addams' entire thigh.

Plans for the future

Autism is everywhere these days -- in People magazine, on Oprah, the presidential campaign trail and YouTube -- but none of this attention, or fresh state and federal money, has reached this family.

Instead, Lillie and Stormy Addams are so desperate that they may move to Colorado, California or Canada, anywhere that promises better support when Sharky's state benefits run out at age 7.

Amid their worry, Sharky makes progress. Over the last year, he learned to use the toilet, ride his Big Wheel, sleep in his own bed and brush his teeth.

To reduce their stress, the family now does yoga together every morning, and his mothers just resumed their only other stress reliever: going to the gym.

His meals and baths, though, are still served cold, and his mother still worries.

That's because Sharky will finish kindergarten this June at the UW's Experimental Education Unit. His parents wanted him to spend another year at the school because he lacks basic skills, such as writing his name, but he has to move on. They haven't been told where.

But Sharky has improved outside special schools and therapy sessions. A year ago, he slipped on his first pair of black ballet slippers.

Now every Thursday inside a North Seattle studio, Sharky glissades alongside his teacher and assumes a classic port de bras, his intense focus intermittently broken by a toothy grin.

"The more time I spend, the more hope I see," Lillie Addams said.

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