Perspectives

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Ohio University Communication Studies Professor to Support Fathers of Special Needs Children

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Professor Stephanie Tikkanen sees needs of caregiver men not being met

Four-year-old Jayden has an incredibly rare genetic mutation known as Sturge-Weber Syndrome. The most obvious symptom is a port-wine stain on his face. The most severe symptoms though are blindness and being confined to a wheelchair. But in addition to being a beautiful, loving boy, he does have a couple things going for him: loving, caring parents and an aunt who’s a researcher/professor at Ohio University.

Dr. Stephanie Tikkanen was completely taken with Jayden and wanted to help so she offered her research services to the Sturge-Weber Foundation. As an expert in interpersonal communication she soon saw how Jayden’s difficulties affected his parents, particular his father. Further investigating revealed that fathers of most Sturge-Weber children were not getting the support that mothers were. There were a number of Facebook site devoted to Sturge-Weber awareness or dealing with Sturge-Weber questions but she found these tools were predominately used by women.

Jayden
Jayden

“But the dads just don’t have a presence in these groups and I think a lot of that is because they’re so public,” she said, “and it’s a forum where a lot of people are going to see you showing emotion and in our culture — men don’t do that, men don’t show emotion.”

The online approach, as effective as it is for mothers, is an obstacle for men who desperately need the support.

“So I’ve got to figure out a way that we can make something that’s so easy to access as online support available and user-friendly and useful to men particularly,” she said.

Part of that effort involved pairing two Sturge-Weber fathers located within an hour of each other. The intent is to allow them to meet personally and share their experiences. That personal approach is a well-proven method of support but Tikkanen’s work is more challenging because of the global nature of Sturge-Weber Syndrome.

“Because this is such a rare condition the men that I’ve been talking to are scattered all around the world,” she said. “I’ve talked to people in New Zealand and Australia and Italy and the Netherlands as well as all over America – it’s hard to schedule interviews.”

“They can’t necessarily get together and go watch a sports game but we can find a way for them to connect and talk in a way that is comfortable for them and will get them the support that they need,” she said.

Part of the problem in providing support to fathers, Tikannen said is the way in which they see their roles in the family.

“There is a pretty consistent emphasis on men being strong and tough and the word that keeps coming up when I ask the men to tell me what they see their role as a father is ‘I’m there to protect and to support my family,’” she said. “So then of course I turn around and ask: ‘Well who protects and supports you?’ and they never have an answer.”

Tikkanen said as her efforts become more effective in supporting fathers of Sturge-Weber children, she hopes to expand her work.

“This is a labor of love for me to be my love letter to Jaden to be able to help him but I think dads of any special needs children whether they be infants or grown adults need support as well,” she said. “I think what I’m going to see is that there’s going to be similarities between Sturge-Weber fathers and fathers of children with Autism, fathers with children with epilepsy more broadly.

Tikkanen said she is interested in speaking with anyone interested in Sturge-Weber Syndrome or those needing support. Her email is tikkanen@ohio.edu. The website for the Sturge-Weber Foundation is http://www.sturge-weber.org/