Family Voices Celebrates the Unsung Heroes of Father’s Day: Dads of Kids with Special Health Care Needs and Disabilities
(Photos show WC Hoecke with his 17-year old son Karl who has Down Syndrome and Dennis Kuo with 12-year old daughter Rebecca who has juvenile arthritis, wife Catherine, and 7-year old daughter Amanda.)
As Father's Day approaches, National Family Voices would like to honor and celebrate the roughly 15% of all fathers in the United States who have children with special health care needs and disabilities.
Being a father is hard enough. A research study by Public Agenda, a nonprofit research and education group based in New York, found that parents and the general public both believe that parenting today is much more difficult than it was in the past because of increased economic pressures and greater demands in the workplace, as well as higher risk of drug and alcohol abuse amongst kids, more presence of crime and gangs, and the growing influence of sex and violence in the media. Many fathers feel increasing pressure and stress to be "good providers" as economic and social conditions become more challenging. As parenting in general gets more complicated, the presence of a supportive father in the household becomes even more important. Research presented on the website www.fatherhood.org shows that "children who live absent their...fathers are, on average, at least two to three times more likely to be poor, to use drugs, to experience educational, health, emotional and behavioral problems, to be victims of child abuse, and to engage in criminal behavior than their peers who live with both married, biological (or adoptive) parents."
For Dads of children with special health care needs (CSHCN) and disabilities, the emotional, financial, and marital challenges of being a father can dramatically increase. WC Hoecke, father of Karl, a 17-year old boy with Down Syndrome, explains that emotional stresses can begin very early for a father of a CSHCN:
"I have talked with hundreds of dads (of CSHCN). One thing we all have in common is the sense of the loss of the dream we had of what our child may do and be. The reality is that few, if any of us, met the expectations of our own fathers. However, our parents had twenty to thirty years to discover that their dreams would be redirected. I had to digest this reality in the time it took someone at the hospital to say Down Syndrome."
WC is Director of Family Information and Education at National Family Voices State Affiliate Organization in South Carolina, "Family Connection of South Carolina." As with all affiliates of National Family Voices, the challenges faced by the families served result from a wide range of medical, developmental, emotional, and learning disabilities amongst their children. No matter what the child's diagnosis, WC talks about the importance of the father being actively engaged with the child's care from the beginning and tells a story to illustrate this point.
"Karl was about eight months old and the physical therapist was at our home to work with him for the first time. My wife Catherine, who is brilliant and one of the most capable people I know, was down on the carpet with Karl and the PT. The PT said ‘WC, if you'll come down here and work with Karl, he'll do things for you he'll never do for his Mom or me and over time you can have a tremendous impact on his life. If you help with his physical therapy, I bet he'll sit up within six months.' I got down on the floor with them and by the end of that session Karl sat up for the first time. Now he rides a bike, something very few kids with Down Syndrome ever do. Even if a Mom is totally capable, having the Dad involved brings a critical dimension to the child's care and growth."
Dennis Kuo agrees. He is a pediatrician who has worked with and advocated for CSHCN for years, and his 12-year old daughter Rebecca has juvenile arthritis. He says:
"Fathers typically engage the care process differently, but it's important for them to be just as involved in their own way. It's inherently scary financially and emotionally to raise a CSHCN and that is very stressful. What I see as a pediatrician is that when both parents are actively involved in the child's care, the family functions better, and that leads to less stress for each of the parents, as well as better care for the child. When one parent is feeling down, the other parent can be supportive, attend to the child, and pull the situation back up."
It has been reported that mental health treatment for stress is two to three times higher for parents of children with special health care needs. WC Hoecke notes in an upcoming white paper (soon to be available from the Center for Fathers and Families, www.fathersandfamilies.com), that when fathers of CSHCN were asked in a focus group what caused them the most stress about their special needs child, 100 percent of them said they did not view the child as the source of their stress. In fact each embraced their special needs child as one of the best things that ever happened to them. The men said that their greatest source of stress was their wish to be able to meet the needs and expectations of their wives and significant others with respect to their CSHCN. This is one reason why, WC says, it helps if a father can find another father of a CSHCN to talk with about their challenges and situation. He adds that skills-based classes which help couples communicate effectively are also very useful for parents of CSHCN. Hoecke notes that most fathers are open to classes like these as long as they know:
"They will only be working with their wives or partners. They will not be sitting in a circle singing kumbaya. The facilitator will not take their wife or partner's side. And they will not feel blamed or disrespected."
WC recommends the courses taught by Prep © www.prepinc.com and Couples Communication © www.couplecommunication.com . For couples who cannot get to a class, he recommends the book Married with Special-Needs Children by Laura Marshak and Fran Prezant.
Dennis Kuo adds:
"Fathers don't tend to talk as much as mothers do to providers, or about how they feel. They have to do the journey their own way. It helps if they can go into action somehow, whether that's taking specific steps to support positive outcomes for their children, or getting involved with advocacy work to help other dads, kids, and families. Advocacy work can help fathers make sense out of their experiences by turning what they are going through into information that can make things better or easier for other people."
National Family Voices Executive Director Sophie Arao-Nguyen says:
"On this Father's Day, we want to honor WC, Dennis, and each and every one of the countless Dads in the Family Voices Network and everywhere who do so much for children with special health care needs and disabilities. We appreciate you, and we could not do this work without you. Thank you."
Additional resources can be found at: www.fathersnetwork.org, a Seattle-based network for fathers of CSHCN.
For information, please contact Melanie Rubin, Director of Communications, email@example.com, 505-872-4777.