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

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.”

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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.

Richard Nichols of Laguna Niguel, whose daughter, Cristen, has cerebral palsy, said he appreciates the fathers-only atmosphere of the support group.

“This has been good for me because you can talk to other dads, and you don’t have to watch what you say because your wife isn’t sitting there,” he said.

Said Ron Jones of Anaheim, whose daughter is unable to talk and has motor-skill problems, as does his son: “I think it’s going to be incumbent upon us to get people involved in this thing. Each time I come to one of these meetings I learn something new. And you take that back (home)--whether it’s how to discipline your children or learning a different approach to getting the services you are entitled to by law but don’t know how to get in the door.

“I feel,” Jones added, “that I’m a better parent because of the Fathers’ Network.”

National project director May says the benefits of father participation in the care of a child with a disability are even broader than that.

The findings in a four-year University of Washington study of the effects of participation in the Fathers’ Network around the country show that both parents benefit from the father’s involvement. Families reported reduced stress and fatigue, decreased depression and increased satisfaction with the social support available to them.

“Automatically,” May said, “the family system changed so that it turned out it wasn’t just a program for Dad; it was a program that powerfully impacted the whole family. “

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Hilling, who is writing a book on his experience as a father of a child with special needs and one on parenting skills for fathers, said that, “Most dads get self-esteem at work as the provider and don’t know how to come home and get gratification with their kids and to develop patience to deal with them.”

And, he conceded, it requires a lot of patience.

“I tell you I’ve learned a lot about myself, and I found out that parenting is just really based on trial and error and understanding your mistakes and improving on them on a daily basis.”

Hilling’s son, Wesley, who spent his first seven months in and out of hospitals due to a liver ailment, caused his parents many sleepless nights.

Until he was 1 1/2, Wesley slept only an hour or two at a time. The Hillings took turns sitting up with him and would even take him for drives in the middle of the night for two or three hours to calm him down.

In the beginning, Hilling said, he spent a lot of time doing physical and occupational therapy with Wesley. The boy also was enrolled at the Irvine Children’s Educational Center, an early intervention program that requires parent participation. And because his work hours are more flexible than his wife’s, Hilling was the one who attended the twice-a-week morning sessions.

Hilling also made a habit of getting Wesley involved in activities around the house.

“What I basically did was what I call ‘normalizing,’ ” he said. “I went through the same routines I did with my son, Grant.”

He’d take Wesley outside with him when he mowed the lawn and let his son squirt the water hose, for example. And he’d read to Wesley, “even though he wasn’t responding to it like when Grant was 2 or 3 years old.”

Although the Hillings were told Wesley would never be able to follow a story, he did learn how to turn the pages for his father. “To someone else, it may seem like a small task,” Hilling said, “but to Wesley, it’s a major accomplishment.”

Wesley now crawls over to the bookcase and pulls out a particular book. Hilling said, “he finds different ways of communicating.”

Even crawling was a major accomplishment for Wesley, who at 18 months was still unable to crawl on all fours and would, as Hilling recalled, “only combat-crawl.

“We were trying to encourage him to ‘come to daddy,’ but he wouldn’t come. He’d just turn in circles, but he wouldn’t go forward. It was really frustrating. Then I decided to turn it around: If he can’t imitate what I’m doing I’ll imitate what he does. That was a big turning point, a bond of communication developed there.”

As a line in a poem Hilling wrote for the Fathers’ Network newsletter says:

“Instead of walking with you, I will crawl with you.”

“I actually combat-crawled for several weeks with him on the floor and he eventually began following me wherever I went. And that led him to responding to other commands that eventually he’d understand, such as, ‘Let’s go, Wesley,’ or ‘Come to Daddy,’ or ‘Do you want to swim? Take a bath?’ ”

When Wesley was about 18 months old, Hilling started keeping a diary “to focus on all the positive things he was doing because many parents focus on the bad things, even with typical kids.”

Hilling said the diary helped him to be more focused on working with his son and, “As I wrote in the diary each day, I became more creative in setting goals for Wesley.”

Hilling said that some parents of children with disabilities have a difficult time taking their child outside the home and having them interact with other children. “They have to get through the denial stage where they don’t want people to see the kids,” he said.

But just as they had done with Grant, the Hillings made a point of taking Wesley to the beach, grocery store and Gymboree class, which offers play activities in a group setting to stimulate development. “I try to expose him to as many social events as possible.”

That, he said, is where another line in his poem comes from:

“Instead of isolating you, I’ll create adventures for you.”

Hilling believes his care-giving experience with his oldest son, Grant, is the reason he was able to accept Wesley’s handicap.

As parents of children with disabilities, he said, “we all go through the process of anger, guilt and denial. The parents from Day One get rejected--by professionals, family and friends--and their dreams and expectations of having a perfect child are shattered.”

But even with Grant, he said, “I threw my own expectations of what I wanted him to be out the window and let him grow by himself; I was just going to guide him, provide him with the best education or whatever.

“One thing I found out is each person has their own challenges and they deal with it differently. What I decided with Wesley is if I couldn’t accept him unconditionally then it wouldn’t be fair to ask others to accept him unconditionally.”

And when children with special needs have both parents serving as advocates for them, Hilling said, it can have “a tremendous effect,” particularly in education: The Hillings recently succeeded in having Wesley mainstreamed into an Irvine preschool that had never before accepted a child with disabilities.

In many ways, Hilling acknowledged, Wesley has made him a better father.

“He’s made me a better father and a better person,” Hilling said. “As I’ve tried to make him the best he can be, he’s also made me the best that I can be.”

For more information about the Fathers’ Network of Orange County, call (714) 852-1081.