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Special Dads : The Fathers' Network of O.C. Links Men Who Have Extra Job in Raising Disabled Kids


IRVINE — Having grown up without a father, Hogan Hilling was determined when his first son was born in 1987 to be involved in his day-to-day care and activities.

Juggling his work schedule so he could be at home as much as possible, Hilling helped with feeding and diapering his son, Grant. And when the boy went to preschool, it was Hilling who often dropped him off and picked him up. Hilling even helped his wife, Tina--a speech-language specialist for the Irvine Unified School District--with the cooking, laundry and other household chores.

"I wanted to be more than a provider," says Hilling, 38, who owned a wallpapering business at the time and is now a real estate agent. "I decided parenting is a team effort."

Without knowing it, Hilling says, his daily involvement in taking care of Grant prepared him for the challenges he and his wife would face after the 1989 birth of their second son, Wesley.

At 20 months, Wesley was discovered to have Angelman's Syndrome. His overall development affected by chromosomal damage, Wesley was unable to roll over, lift his head, grasp objects or imitate behavior. Now 3 1/2, he can crawl, he understands the word "no" and is following instructions better, but he still wears diapers and is unable to walk, talk or feed himself.

Hilling--who does everything from feeding and dressing Wesley to taking him to weekly speech therapy sessions--believes that it's even more important for fathers of children with special needs to be involved in their child's daily care.

That's the primary message Hilling brings to the Fathers' Network of Orange County, a support and educational group for fathers of children with cerebral palsy, Down's syndrome and other disabilities.

"Parenting in general should be a partnership, and it's even more needed when you have a child with special needs because they require much more time, patience and understanding than a typical child," he said. "It's too much of a burden on one person."

Tina Hilling--who gave birth to their third son, Matthew, last month--agrees.

"I just don't see our family running the way it does without that kind of help," she said, praising her husband's "devotion and effort he's willing to put in" with their children. "It just wouldn't work unless we both did about 50%, or actually 100%."

Founded in Seattle in 1986, the National Fathers' Network has helped to establish 48 programs in 33 states. The network is funded by the federal Department of Health and Human Services' Maternal and Child Health Bureau and, according to national project director James May, it is "the only federally funded program on a national level that's ever existed for fathers."

That's not to say various agencies "don't aim some things at fathers," said May, "but there really is almost nothing out there for men. That's why a program like this is generally exciting for men."

Hilling--who co-founded the Fathers' Network of Orange County last fall with Jeff Braun of Tustin after attending a workshop conducted by May--says the Fathers' Network has no intention of replacing other parent-support groups.

"What we're trying to do is address the specific needs of fathers," said Hilling, noting that among the organizations he has talked to, about 90% of the people who attend support-group meetings are women.

In general, Hilling said, "fathers don't have any services or resources that are provided to them. All the questions and materials professionals present to these families are usually directed to the mother, so the father is totally left out, with the assumption that he doesn't have the time, that fathers don't participate in the care-taking responsibilities or are inept at it."

The idea behind the organization, Hilling said, "is to filter fathers through the network--to educate, support and reassure fathers of their vital role in the life of their family so they can go back and support the family and groups they were involved in before."

And once fathers become involved with their children, he said, "then hopefully other family members will then get involved. Because if the father's in denial (over having a child with a disability), other family members don't accept the child either.

"But if the father stands up and says, 'This is my child, accept him for who he is,' then others tend to be supportive."


The Fathers' Network of Orange County meets one Saturday morning a month for about three hours in a donated conference room at the Providence Speech and Language Center in Orange.

The group has 130 names on its mailing list and averages about 15 fathers at each meeting where, as Hilling notes, "we have two rules: We're not judgmental, and what is said in the room stays in the room."

At a recent gathering, guest speaker Mark Humphries of Irvine--the father of a son with Down's syndrome--discussed mainstreaming his son into the public school system and Hilling conducted a session on parenting skills.

The dads also informally discussed the value of the Fathers' Network.

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