Does a Kid Need a Dad : Network Gives Fathers Chance to Share Their Own Special Needs

Put a bunch of guys in a room on a balmy weekend when USC is beating up on a hapless Cal team and chances are good that talk will turn to sports.

But touchdowns were not on the agenda Saturday when a dozen men gathered in a Costa Mesa hotel suite. Instead, conversation turned on the hard realities of colostomies, Down’s syndrome, spinal meningitis and pediatric AIDS patients.

The men took turns telling how the birth of a special-needs child is reshaping their relationships with spouses, offspring and friends. Some spoke of anger, others of doubt, many of sadness. Nearly all quietly conveyed the never-ending anguish that’s part of being a parent to a child with special needs.

But the storytelling served a purpose.

“These guys weren’t banging drums or eating quiche,” said James May, national project director of the Seattle-based National Fathers’ Network. “They were telling honest stories of how a child has affected them as a husband, a father and an individual. And there’s a power in that telling.”

Representatives from seven support groups around the state were in town to consider creating a statewide umbrella organization. And the absence of women during the two-day meeting wasn’t accidental.

“The power of a father’s group is that men have a chance in a safe setting to talk about these powerful emotions,” said May, who helped run the weekend meeting sponsored by the Coalition of Parents, Educators, Deaf, Blind,a private, El Toro-based organization.

“Women always wonder what we talk about at these meetings,” acknowledged one father. “They think we talk about sports and work. Or they think we’re talking about them.”

But there were no tales told out of school. These fathers focused on the uphill battle to form an organization that can help fathers navigate the maelstrom of emotions unleashed by the birth of a special-needs child.

They agreed to create a loose-knit umbrella organization that will help new groups get off the ground. The fledgling coalition also intends to lobby in Sacramento.

The diverse group included black, white, Latino and Asian American men--and a representative from a newly formed Los Angeles support group called Programa Padres Positivos that will serve fathers whose children are HIV positive.

“This isn’t a sexist program,” said Bil Aulenbach, a Dana Point resident and the father of a 29-year-old special-needs daughter. “What we’re saying is that if we can get more fathers actively involved in parenting (through men-only meetings), it reduces the chance of other families being put at risk (of domestic violence).”

Ultimately, Aulenbach said, fathers must come to grips with the typical American male’s de facto decision to turn care-giving chores over to Mom. Even absent a special-needs child, Aulenbach said, American men typically cede the majority of child-rearing duties to their spouses.

But when the child has special needs, the absence of male involvement can be amplified, Aulenbach said. Agencies and programs typically are dominated by women. And, because American fathers typically aren’t as involved as their wives, the system sometimes seems to forget that dads exist.

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Irvine resident Hogan Hillingonce took his 5-year-old special-needs son to a doctor for treatment of a fever. He remembers the prescription: “Tell the boy’s mother to give him two aspirin and plenty of fluids--as if I couldn’t have done it myself.”

Bob Danzlof Poway told of a neonatal intensive care nurse who wondered aloud why he was interested in learning how to attach a 19-inch colostomy bag to his 18-inch baby. “Men,” the nurse observed, “usually just don’t get involved.”

Another dad told of school administrators who spoke of him in the third person during a meeting--even though he was sitting in the same room. “Why don’t you ask him,” the dad said. “He’s sitting right here.”

Ill-equipped to handle the new challenges--and often left out of the loop by professionals--”the next thing we know,” Aulenbach said, “we’re saying ‘I’ll avoid this whole issue and let (the wife) be the child protector.’ ”

“This isn’t an indictment of women,” May said. “It is a statement of belief that men don’t play a significant role in most American families.”

May, who said there are about 70 such men’s support groups nationwide, maintains that men want to take an active role in parenting--but that most must first harness the powerful emotions sparked by the birth of a special-needs child.

“You’re dealing with the death of the dream of the perfect child,” May said. “There’s this tremendous range of emotions, including rage, sadness, loneliness and fear.”

“I remember the tremendous letdown,” Danzl said of the days after doctors diagnosed a rare colon disorder in his son. “I wanted to talk about the feelings I had . . . but I didn’t know where to turn. We were constantly riding on this roller coaster . . . (but) I didn’t know who to talk to.”

How much healthier it would be if delivery-room doctors and nurses were steering anguished fathers to dads who’ve already come to grips with the powerful emotions and doubts, said Santa Ana resident Jeff Braun, whose child has Down’s syndrome.

Just recently, doctors and nurses at some Orange County hospitals began steering new fathers of special needs children to The Fathers Network of Orange County. The group’s next meeting will be at 8:30 a.m. on Nov. 5 at the Providence Speech and Hearing Center in Orange. Call 714-651-9839 for information.

“They call and ask for five minutes on the phone,” Braun said. “An hour or more later, you finally hang up. Some of them take a while to get to a meeting, but once they start coming, most attend religiously.”

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That kind of support didn’t exist when Aulenbach’s daughter, Heidi, was born.

Aulenbach had feared the worst after his wife, Anne, contracted rubella during the pregnancy. When Heidi was born, she “was overcooked, undernourished. . .she had red dots all over her, and she had a fully developed cataract in her right eye,” said Aulenbach, then a 33-year-old Episcopal priest at a small parish on Maui.

Honoring their pledge to “do our best for this child,” the Aulenbachs planned a move to Santa Ana, where Heidi could enroll at a school known for its programs for the hearing-impaired. But a bishop answered his request for a mainland transfer by wishing him well in the secular world.

“I remember thinking ‘What the hell have I done?’ ” Aulenbach said about his dismissal. But the family remained committed to finding help for Heidi and packed up and left. “Here I was walking the streets of Los Angeles unemployed; I’d just bought a new house, and I had three kids.”

So many new fathers gaze at their sons and dream of raising the next Joe Montana, Aulenbach said, that “when your baby is born with a half of a brain, Down’s syndrome or is deaf and blind, it can adversely affect your dreams.”

But dreams can be revived once fathers master innovative ways to gain gratification from kids who’ll never learn to challenge a left-handed pitcher or strap on a pair of in-line skates.

“I just feel real honored now to have this kid,” Danzl said. “I was really afraid of dealing with this before, but dads can learn so much from these kids.”

Aulenbach says father’s support groups play a key role in helping dads reconfigure their expectations.

“Dads need to hear from (those of) us who’ve moved through it all, who’ve come out the better for it.” Aulenbach said. “We need to tell them that it’s OK, that you can do neat things with these kids, things that will change your life and make you a better person.”

Aulenbach often talks about his daughter, who is profoundly deaf and blind. “Heidi’s still got issues to deal with; it isn’t perfect,” Aulenbach said. “But she’s now living in Colorado, and she’s engaged. So many of these parents need to hear that there’s going to be something 30 years later.”