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Dads Dealing with a Special Needs Diagnosis in their Kids

It's tough for any parent – but for fathers, it can be even tougher to accept, cope and feel hope. Some local dads share their stories and offer insights.

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Prenatal screening tests came back normal during his wife Katie's pregnancy. So when hours after the birth of his son Will, Bob Marzolf of Auburn Hills learned his baby had Down syndrome, he was caught by surprise.

"I remember leaving the hospital, going home and taking a shower," he recalls. "I looked out the window across the yard and just broke down. After I had a good cry, I told myself 'Buck up, Dude. God picked you to take care of him.'"

Big impact

Marzolf and his wife are one of the approximately 5,500 couples in the United States who annually become the parents of a child with Down syndrome – a point that Greg Schell, director of the Washington State Fathers Network, frequently makes to the dads he encounters who are coming to terms with their own child's special needs diagnosis.

"The No. 1 issue men in these circumstances report, over and over, is isolation," says Schell, who is himself the father of a 33-year-old daughter with Down syndrome. "They feel like they're the only person in the world going through this, which is so irrational. Thousands of people are born with disabilities every year, and they all have a dad."

The issue, notes Schell, is that men are socialized in a very different way than women, which often leaves them less prepared to handle a child's disability.

"Men learn from an early age that they must be tough when the chips are down," Schell says. "They're encouraged to 'suck it up' and to fix any problem that comes their way. But when they learn they have a child with special needs, they face a dilemma when they realize that even the smartest minds in the world can't change this new reality."

Support group link

How fathers come to accept and even embrace their child's special needs diagnosis often varies dramatically from how their spouses do. In his 30-plus years working with families of special needs kids, Schell has observed that mothers of special needs kids are much more prone to congregate, often talking for hours, comparing notes and supporting one another.

"Guys don't do that," Schell says. "At least not initially." In fact, when Schell's own daughter was born, there were no support groups for dads to be found.

Shannon Leveille, M.A., is a licensed professional counselor who works with families whose children have been diagnosed with an Autism Spectrum Disorder (ASD). She works at Judson Center in Royal Oak, an agency that provides support services to autistic children and their families, and is working to re-establish a support group for fathers.

"A dad's group had existed at one time but sort of fizzled out," she recalls. "We offer a lot of support to women, whether it is through moms night out, support groups or other programs. Dads, on the other hand, are left in the wings."

Schell says support groups are hugely beneficial for fathers. He leads several support groups for dads of special needs children in the Seattle area.

"I routinely witness fathers walking out after one session feeling like a new man," Schell says. "All that they were holding inside comes out. They realize they aren't the only ones feeling what they feel. They feel like a human being again."

Reaching out

In addition to her work at the Judson Center, Leveille counsels families of special needs children in a private outpatient mental health clinic in Novi. In recent years, she has seen the population of fathers seeking her counsel grow significantly.

"It's finally accepted for men to be more active in a family role in general," she notes. "Men experience the same emotions that women do when learning of a child's special needs diagnosis. They just don't show it."

For his part, Marzolf found that connecting with his childhood friend, whose own daughter had Down syndrome, was a huge source of support to him in the early days after Will's diagnosis.

"We went and visited my friend's family," Marzolf recalls. "He told us it would be one of the hardest things to go through but also extremely rewarding. We saw his then 6-year-old daughter full of life and personality, and it changed our perception of how living with a child with Down syndrome would be."

Now Marzolf and his wife do the same for other couples experiencing similar circumstances.

"We've welcomed a few couples into our home who were expecting a child with Down syndrome," Marzolf says. "They see Will and what a cool little guy he is. He's full of life and love. We let them know they can get through this."

Marzolf notes that, if anything, he and his wife were brought closer together by the experience of Will's diagnosis, and he never felt the need to seek professional help. "We were on the same page quickly," he says. "We figured this is what we had to do, so let's do it."

Therapy in blogging

Joel Kurth of St. Clair Shores had never heard of Cornelia de Lange Syndrome (CdLS), a genetic disorder that causes a range of physical, cognitive and medical challenges, until it was mentioned as a possibility the day after his son Will's birth in October 2004. The diagnosis was not confirmed until almost two months later, when Will was still in the hospital battling one health crisis after another.

"The diagnosis was really secondary at that point to his immediate needs," Kurth says. "He was on a ventilator experiencing constant difficulty breathing. We knew if he survived, he would face significant challenges and would likely be cognitively impaired. It was devastating."

To help cope, Joel chronicled Will's journey via a blog he and his wife, Maureen, created to keep family and friends updated.

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