Dads share triumphs, woes of their special-needs kids

At 18 months, Erik Perales shut out his father.

Then Rudy Perales shut out his son.

For months the 39-year-old state worker avoided Erik, as if leaving the room could somehow slam the door on his grief, calm his rage, soothe his guilt, quiet the chatter from well-meaning but clueless friends and relatives. As if it could erase the autism that turned a once-vibrant toddler into a quiet, aloof and oddly disconnected little boy.

The result was that nearly a year after Erik's diagnosis, Perales had become in many ways as isolated as his son. So in summer 1999, a longtime friend persuaded him to go to a conference for fathers of children with Down syndrome, cerebral palsy and other developmental disabilities.

When one of the speakers began talking about his autistic child, Perales snapped to attention. The man was describing Perales' experience to the letter: the frustration, the helplessness, the dashed hopes.

Then Perales began to cry.

"For once I didn't feel alone. It was like, finally, somebody understands what I'm going through."

How your generosity has helped Last year, donors gave more than $550,000 to The Seattle Times Fund For The Needy. Kindering Center, one of 12 agencies that received support from the fund, used its portion to provide therapies, special education, nutrition and family counseling for 606 disabled infants and toddlers and their families.

About 2,200 others have found similar comfort, making the Washington State Fathers Network, which organized the annual conference, a thriving and novel organization. It's a support system designed exclusively for men, a place where they can meet to share confidences that they'd otherwise keep bottled up.

The statewide network is a program of the Kindering Center, the Bellevue nonprofit that is among a dozen groups receiving support this year from The Seattle Times Fund For The Needy. Since its beginnings in 1986, the Fathers Network has also expanded beyond Washington to 108 programs in 36 states.

Erik was still in the womb when Perales bought him a baseball, a mitt and a tiny Washington Redskins uniform.

"I just couldn't wait for him to be born," says Perales, who works for the Department of Licensing and lives in Olympia with his wife, Julie, and their two children. "I was going to be able to do all the things that my father never did with me."

Kindering Center A nonprofit organization in Bellevue that helps families with children who are disabled or medically fragile. Kindering Center helped 1,500 children last year. Services include: Physical and occupational therapy to help children sit, crawl, walk or reach. Speech and language therapy. Special-education classes and individual instruction. Family counseling and support groups for parents, including the Fathers Network. Foster-care placement for disabled, behaviorally challenged or medically fragile children.

Perales envisioned his son as a teenager. He would be an athlete, maybe a wrestler. He would have a car. He would go to the prom.

"And I was going to say, 'That's my boy.' "

Erik was born a healthy 8 pounds, 8 ounces on Aug. 16, 1994. He was a typical baby and a devilish toddler who raced around the house, made car noises, and accidentally pulled a table on top of himself while trying to climb it. He spent his first birthday with his leg in a cast.

At 18 months, Julie Perales noticed something disturbing.

Erik had stopped making eye contact. He no longer interacted with his parents. He seemed uninterested in his toys. It was as if he'd simply checked out.

Six months later, after a battery of tests, the doctors at the University of Washington delivered the diagnosis: Erik had autism, a complex brain disorder that affects communication and social interaction. He was suddenly one of an estimated 100,000 people in Washington with a developmental disability and part of fast-growing subset. The number of children diagnosed with autism shot up from 51 in 1993 to 2,824 in 2004, a 5,228 percent increase in 11 years, due in part to an increased awareness in the medical community and a broadening definition of the disorder.

"My wife started to cry," Perales says, "and I was like, write me a prescription and I'll go get it fixed."

The fix-it response is typical for men, and among a multitude of reasons that the Fathers Network exists at all. Despite the shared experience of raising a disabled child, husbands and wives can have vastly different ways of coping, says James May, a mental-health counselor who ran the state network for 18 years before retiring in November.

Women are more likely to share their fears with others, while men largely keep such emotions inside. Women may involve themselves even more with their disabled child; men may bury themselves deeper in work.

And while women may feel sad about their child's circumstance and their own dashed expectations, men are more likely to feel angry.

"There aren't many avenues for men to share grief," May says. "And a lot of men don't quite recognize what grief is. They stuff it away or they put it into work. I think men work as an antidote to some of the feelings they have. And the one feeling you would see most would be anger."

Anger and guilt

Jeff Masnari, a Bellevue father of a 7-year-old son who is developmentally disabled, acknowledges as much. He spent the first three years of Nathan's life wrestling with conflicting emotions.

At first there was a gripping fear: Nathan was born 10 weeks premature on Dec. 16, 1997. He weighed 2 pounds, 9 ounces and was slightly larger than the football Masnari bought him. Because his lungs weren't fully formed, a simple cold could kill him.

Then there was the confusion. At 5 months, Nathan couldn't lift his head. At 10 months, he couldn't sit up. By 13 months, he still wasn't crawling. After tests and scans that revealed Nathan had an abnormal brain, doctors offered a vague diagnosis: "global developmental delay." The complications from his premature birth had hidden this condition, which was unrelated.

Finally, there were the anger and guilt. Masnari resented that he'd have to give up his career in the wine industry to stay home and care for Nathan because his wife, Elizabeth, 46, an executive with Washington Mutual, earned the larger income. And he felt guilty for his anger.

"I loved my child more than I thought I'd be capable of loving," says Masnari, 44. "But I was afraid I'd be relegated to a child-care role."

Masnari joined the Fathers Network reluctantly, expecting that it might be uncomfortably sappy. Instead he met guys like himself going through similar challenges.

They talked about the glazed look people get when the subject turns to their child's disability, the embarrassment of a child's public outburst, the overstimulating nightmare that is Chuck E. Cheese.

They confided about the marital strain and the reported 80 percent divorce rate for parents of special-needs children. They discussed the extraordinary expense of raising a developmentally disabled child, which the Centers for Disease Control and Prevention has pegged at about $1 million over a lifetime.

They told jokes and celebrated the simple victories of a baby rolling over or an 8-year-old becoming potty trained.

And they talked about the utter helplessness of having a child with a problem they can't fix.

"Somehow being amongst a group of guys with similar experiences," Masnari says, "made it a little easier for me to bear."

Seven years after Nathan's birth, Masnari is living the life that he once feared but now, in many ways, cherishes. He works out of his home as a marketing rep for Terra Blanca winery, a job he does part time while Nathan attends special-education classes.

Masnari's main job, however, is taking care of his son, a good-natured and affectionate child obsessed with blowing bubbles, leaving the Masnaris' floors perpetually sticky.

Like Rudy Perales, Masnari decided before Nathan was born that he wasn't going to be a father who spent only a few hours a day with his son. He doesn't blame his father's workaholic habits; that was the way men of earlier generations showed their love.

But Masnari never wanted his son to stare out the window waiting for Dad to come home. And, in one of life's ironies, Nathan doesn't have to.

"One of the highlights of my day is picking him up from day care," Masnari says. "He gets this big old grin on his face and he's flapping his arms. My emotional response is stronger than anything I've ever experienced."

Likewise, Perales credits the men's support group for helping him to shed the anger, frustration and loneliness that strained his early relationship with Erik, now 10. Rather than grieving what he lost, Perales now values what he's gained.

"Erik has really made me understand that I can't fix it. And that's OK. This is the way he's supposed to be."

Shirleen Holt: 206-464-8316 or sholt@seattletimes.com