When Joe Paleczny was in Air Force basic training, the program ended with a rigorous confidence course where there was no choice but to keep moving forward, no matter how tough it was. When he looks at his life as a parent to Owen, 5, who has cerebral palsy, Joe applies the same attitude.
Tips from the trenches
Don’t get discouraged because you’re two steps behind. Tomorrow
you might be three steps ahead. Baby steps. Even today it’s still
baby steps. And I mean that literally.
Realize that you or your wife or your partner didn’t do anything
wrong. This is not your fault.
People want to help but often don’t know how, so it’s up to you to
tell them exactly what you need. We’ll tell them, please come to
the house and put laundry away or take Aidan for a night, instead
of waiting for them to figure it out.
Understand that the person who is going to support you and your
child the most at this point will be your partner, foremost, and
all you can do is love and support your child through this process.
Celebrate your challenges and tackle them head on.
- The Naperville support group for dads or male caregivers of
children with special needs meets the first Tuesday of the month at
Tommy Nevin’s pub, 3032 EnglishRows, in Naperville. For more
information, email firstname.lastname@example.org.
- Chicagoland D.A.D.S. (Dads Appreciating Down Syndrome) meets
monthly and is open to all dads who have a child with special
needs. For more information visit www.chicagoland-dads.org.
“How do you move forward? You have no other choice,” says Joe, of Plainfield. “And at the end you’re going to look back and say, ‘I didn’t know I could do that.’ You don’t know what you can do until you do it.
“And Owen helps. He’s very easygoing and a joy to be around,” Joe says. “He provides his own bit of comedy relief.”
Owen, a twin, was born at about 24 weeks. His sister didn’t survive. As Joe and his wife Christy sat vigil by Owen’s bedside, “it became clearer and clearer that we were in for a special needs kid,” Joe remembers. “And we were still very green to it.”
For Christy, parenting a child with special needs ultimately led to support groups where she could talk with other parents. But Joe, who finds great support in his marriage, had no interest in looking elsewhere.
“I personally don’t need a support group,” Joe says. “The emotional part, this guy just doesn’t do it.”
How Joe and Christy handled their need for support is fairly typical, says Paul Pasulka, a licensed clinical psychologist in Chicago who works with many special needs families.
“Historically, it may be because men were more frequently out of the home working or whatever, there was a community of mothers and children,” Pasulka says. “Men, stereotypically, want to portray themselves as more stoic and independent in handling their problems. Less so now, but I still think it’s true.”
That doesn’t mean dads aren’t involved. Joe handles all the medical appointments for Owen, while Christy handles the therapy appointments.
But, while they may be able to split up how to handle the logistics of raising a child with special needs, men and women often handle the emotional aspects differently.
“It’s a tricky issue, because lots of times men prefer to keep their feelings to themselves,” Pasulka says.
Mikky Wright, of Chicago, would agree. He and his wife, Laura, are parents to Rafael, 4, who was diagnosed with sensory processing disorder as a toddler and attends a therapeutic school. While moms in the waiting room at the center often talk and compare notes, the dads usually just say hi and leave it at that, Mikky says.
“From a male and a father side, we don’t have peers that can offer emotional support,” Mikky says. “It’s a very common misconception that women are in the forefront and they’re the ones doing all the work, but the husbands and fathers are too.”
When Rafael first was diagnosed, Mikky says he and Laura took different approaches on how to handle what came next.
“As a mother, my wife is about empathy and compassion and what can I do to comfort and make sure I’m there to get them better,” Mikky says. “As a father, we want action.”
But, underneath his call for action, Mikky says he struggled with denial. “I was like, let’s go, let’s put him into LEEP Forward, start therapy. But from the emotional and spiritual side, I was living in a state of denial that my son had these challenges.”
Mikky would go to the playground with Rafael, who would rapidly careen out of control. He found himself consumed with anger and grief for the challenges his son faced. As other parents criticized his son’s behavior, Mikky felt a deep sense of shame.
“It was really, really hard for me,” he acknowledges. “I felt like a failure.”
He decided to attend counseling, both as a family and alone, to get the support he needs.
“We go out as a lone wolf and we have to find it for ourselves,” Mikky says. “We either refuse to or can’t find other men to share it with.”
Matt Latourette, of Naperville, also struggled with his need for support after his son Aidan, now 8, was born. Matt and his wife, Jen, found out shortly after Aidan’s birth that not only did their newborn need heart surgery, but he also suffered from a chromosomal abnormality so rare it doesn’t even have a name. He’s nonverbal and currently operates at about a 2- or 3-year-old level, Matt says.
Matt and Jen both have been equally involved in his care since birth. “I probably took more of the lead than maybe some other families. We read a lot of books and it’s always about the mother. There’s the assumption that it’s the wife and mother, and probably a lot of times it is,” Matt says. “But I became very involved and the focus was on Aidan.”
Initially, they turned to each other for support. But when they moved to Naperville, they found a large special needs community, including a special needs PTA at their school district. About a year ago, Matt decided to start a support group for dads of children with special needs.
“From the first meeting … everyone was just very open and I was surprised by that,” Matt says. “I felt more open with the guys.”
About 10 or 15 dads attend each meeting. Sometimes they talk about their kids, other times they talk about everything but their special needs child.
“Some days, a lot of other guys will say, ‘I’ve accepted it.’ I don’t know if I’ve ever accepted it completely, you have days that are good and bad. You deal with it, almost like a death in the family,” Matt says. “You see this little boy who looks like you and you know he’ll never do certain things.
“… We’ve gotten to the point where we just want him to have the best life that he can have.”
And, as they help guide their child along his or her journey, many dads have found themselves profoundly changed.
“I thought I was sensitive. I was not. I thought I was deep. I was not. I thought I was thoughtful, but I wasn’t,” Mikky says.
“I’ve been humbled by my son’s challenges, as a father and a husband and a man.”