When a family has a child with special needs, all problems are relative; solutions come with creative vision. No matter what learning or physical issues some children might have, they experience the same ups and downs that all kids face. Most important, fathers learn to redefine their roles as dads and husbands.
Scott Yearwood knows firsthand the blessings of being the father of a 12-year-old son with Down Syndrome. “I know I’m blessed. My journey has been awesome,” he said. “You have to decide: This is the path you’ve been given, so be thankful.”
Rick Klentzman, the father of a 20-year-old son with cerebral palsy, sees fatherhood in new ways since his son’s birth. He advises other fathers, “The ‘mom’ instinct is stronger than the mating instinct. Try to be in on that action. If you want your relationship to progress, you have to help with parenting and nurturing. You don’t have to be perfect. You just have to get in there and try.”
Yearwood and Klentzman were part of a recent panel discussion sponsored by the Children’s Special Needs Network (CSNN), serving families with children diagnosed with physical or psychological needs. The non-profit organization connects families with medical, educational, and social service resources close to where they live, when available.
The topic was fatherhood, its blessings and challenges. Also on the panel for about 50 parents were the following:
-Rick O’Banon, father of a 11-year-old son with autism
-David Marek, father of a 14-year-old son with autism
-Sean Eulenfeld, father of a 12-year-old daughter with Duchenne Muscular Dystrophy
Journey to acceptance
The fathers talked frankly about their journeys through the stages of grief - denial, anger, bargaining, even depression - as they came to accept their children’s diagnoses. Along the way they experienced what many in grief go through: numbing, painful feelings of loss until they figure out how to redefine their lives, careers and families into what would be normal for them.
For O’Banon, physicians finally arrived at a conclusive diagnosis when his son was 8. Meanwhile, O’Banon assumed he was to blame for his son’s situation. “I kept saying, ‘What did I do wrong?’ I’d go through all the emotions.”
The panelists also discussed their feelings of helplessness.
Klentzman summed up their initial mind-set: “Most dads are going to do what I did. Moms get in close to their children, and dads want to ‘fix it’ somehow. When you have a special-needs child, you don’t know what to do or how to fix it.”
The fathers all in their own ways learned that “fixing it” means accepting their children as they are and reveling in the daily victories - no matter how small.
Softball and lipstick
All fathers said their children have normal wishes and dreams, just like their peers.
Now that his son is in middle school, O’Banon finds guiding him through the pitfalls and pleasures that all parents of teenagers face - especially relationships with the opposite sex. “It’s a struggle. He knows there’s something different about him.”
Marek had to learn to adjust to different hopes. “It took a lot of getting used to. I had dreams of a real father-son relationship, going fishing and hunting. Those shattered dreams were hard to deal with. But we still have a good father-son relationship, but not in the same way. We have T-ball and basketball, just as typical students do. We can still enjoy it all.”
Softball and T-ball have been the father’s avenue into learning to adjust. Yearwood’s son inherited his father’s love of baseball, so Yearwood organized the Special Needs Softball League. No matter who scores, the grandstands explode with cheers and hurrahs. Players in wheelchairs or on crutches may get assistance, but the only requirement is love of the game and willingness to play.
Eulenfeld chuckled when he related the story of his 12-year-old daughter who dabbled in her mother’s cosmetics with amusing results, just like all pre-teen girls. “She wanted to be just like her mother and do things her mom does,” he said. He also learned that “doctors don’t know everything” and to trust his instincts as a father when his daughter was diagnosed with a rare form of muscular dystrophy.
“Doctors told me she was going to die before she was one, but I had to believe that she’s in God’s hands. I learned to put more faith in God than in doctors. They only give you an educated guess. She changed my whole outlook on life. Now that she’s in my life, the sky is a different color of blue; the grass is a different color of green. I don’t worry about what my child can’t do. I rejoice in what she can do.”
Strains on marriage
One by one, the fathers admitted that having children with special needs strained their marriages and relationships. They agreed with Marek, who said, “I wrapped myself in work to keep from dealing with things at home. It nearly cost me my marriage God used that to open my eyes and reveal to me what was important.”
“There were periods of time when my wife and I were disconnected,” Klentzman admitted. “We had to reconcile ourselves that things weren’t going to go by the book.”
Several fathers had gone through divorces. All admitted to financial struggles, one talked about filing bankruptcy. All fathers made conscious decisions to curtail or change careers because of their children and their health and educational challenges.
Many middle-income wage earners discover an uneasy truth: That financial aid is available for low-income families, but many middle-class families are not eligible for aid for their children.
“For the 15 percent of us who do hang in there, it’s very humbling,” said Marek. “You have to take lower income jobs so that you can get services for your child.” Other fathers admitted to turning down job transfers to stay close to medical facilities or keep their health insurance.
Hopes for the future
Each father thinks about his child’s future. For O’Banon, he believes his son can eventually become self-supporting and a good citizen, even with autism. “He follows the rules to the end. He’ll be the greatest employee anyone has ever had.”
All five fathers agree - relatively few fathers have children with special needs. That’s why they stick together. Yearwood considers himself in an elite assembly of fathers. “When you think of the general population, we’re a special group. There aren’t that many of us.”
An estimated 2 percent of the world’s population has Down’s. That means, about one out of every 800 to 1,000 babies are born with this genetic disorder that can cause numerous physical and learning problems, including mental retardation.
Still, Yearwood feels blessed. “I’m privileged to have a special-needs child. He is the epitome of me. Without him I would not be the man I am today. I’m a better man today because of my son.”
pbenoit@temple-telegram.com
