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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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"We're both journalists, so writing was something we naturally gravitated to," says Kurth, who is city hall editor at The Detroit News. "It was a way to vent, ruminate and sort through a jumble of emotions."
Will lived for 89 days, and Kurth blogged his son's journey through Will's last day. But Kurth found himself blogging again when, hours after his daughter Hope was born three years later, it was confirmed that she too had CdLS.
"Mo took one look at our daughter and knew she had CdLS," Kurth recalls. "But I didn't see it right away. I was in denial. When her diagnosis was later confirmed, I thought it certainly wasn't ideal, but we knew we could do this."
Aptly titled "Journey of Hope," the family's second blog contains many more entries than Hope's older brother's blog. Hope is thriving at home with her parents and little brother Oscar.
In addition to blogging about Hope's progress, Kurth and his wife have found comfort in twice organizing the "Walk for Will and Hope" to raise money for the CdLS Foundation.
"I'm glad we could do this for Will," Kurth says. "We're spreading the word about CdLS and showing that his life has meaning beyond our family."
Four feelings
While coping mechanisms are as varied as the people who experience them, Schell notes that most men will experience four feelings when coming to terms with their child's diagnosis though not necessarily in the same order or on the same timeline.
According to Schell, the first feeling is a stress that can be so severe as to lead to depression.
"Men often question whether they have the skills to handle a special needs child," Schell explains. "They don't know how they'll adjust."
The second feeling is that of isolation, and the third is anger, he says.
"The anger is often focused at systems," Schell explains. "For example, men may channel their anger at schools, doctors, insurance companies or legislators. Issues that are typical for most families get amped up and distorted for families with a special needs child."
And the fourth? Guilt. "Men will say things to themselves like the doctor screwed up, and I wasn't there to protect my child," Schell explains. "Or they'll blame themselves for something like trying drugs in college."
The pressure
Compounding these feelings may be a sense of extreme pressure to provide for one's family, Leveille says. She regularly observes that when a child is diagnosed with an ASD, one parent usually opts to stay home with the child – and usually that parent is the mother. As a result, fathers tend to become career-focused as they move into the position of the family's sole breadwinner.
"Men in general feel pressured to be the provider," Leveille says. "That factor doubles and sometimes triples when there's a child with a disability. Mom doesn't work, and dad sees the added expense of treatments for the child adding up."
Leveille has also noticed that men sometimes tend to deny a diagnosis or its severity. "In my experience, women tend to see the autism spectrum more easily. For men, if their child is not on the extreme end of the spectrum, it may be harder for them to accept. Men see in absolutes when autism is anything but."
Leveille notes that she doesn't counsel men differently than she does women – despite the differences in how they may come to terms with the diagnosis.
"I counsel couples where they're at," she explains. "I try to present an environment where men feel supported, so they feel comfortable talking."
Life goes on
At 7 years old, Will Marzolf is thriving at Deerfield Elementary in the Avondale School District, where he is primarily in the special needs but spends at least an hour a day in the general education program. To his dad, Will's the apple of his father's eye.
"He's the greatest," Marzolf says. "It's a great story. I wouldn't want it any other way. We're so blessed to have him. And he is blessed to have us."
Kurth is similar in his sentiments toward 3-year-old Hope.
"CdLS is a scary diagnosis, but it has been a real joy to see her develop," he says. "The circumstances are different with special needs kids, but the underlying love is the same."
Similarly, when Schell thinks back to when he first learned of his daughter's Down syndrome diagnosis, he recalls having a very difficult time adjusting.
"So many things go through your head," he says. "And it was several years before I was back on my game and could focus on other aspects of my life.
"But thankfully not too long after my daughter was born, she started showing me that life can be fun – that there's a different way. I remember thinking that I always wanted to live a different life, and that perhaps this was going to be how."
