In a back room at Naperville’s Tommy Nevin’s Pub, a group of dads recently gathered around the table with their cold beers and dinner, a few inquiring with the “lottery czar” about their latest group attempt at winning the lottery.
It’s not a golf vacation or even skybox seats they wish for. But rather, the money to build a group home for their special needs children.
“Yeah, our dream. That’s about as light as the conversation gets,” said one dad. “Well, that and laughing about the state of our state.”
Illinois budget woes and cutbacks in program funding are just two of many issues these men deal with and worry about. On this night, the people in the bar were watching baseball, but the Special Needs Dads were listening to a speaker from DayOne PACT, a DuPage nonprofit coordination agency for people with disabilities.
Group founder Matt Latourette, of Aurora, says the meetings give them the chance to hear from guest speakers, vent their frustrations, ask questions, find answers, plan futures, avoid isolation, and hang with guys who really do understand what life is like in their house.
“Who will care for our children when we’re gone? That’s probably our biggest concern,” said Latourette, 42, who has a daughter and two sons, both of whom have special needs. Aidan, 12, who is non-verbal, has a chromosomal abnormality, and Nolan, 9, has a seizure disorder.
“But it isn’t always that heavy,” Latourette said. “Sometimes we don’t have a speaker. We just enjoy getting together. We can learn a lot from each other. Coming here is like getting a free hall pass. It’s very easy to get isolated. You don’t choose it, but you find yourself always saying, ‘Well, we can’t go because…'”
Latourette launched the group four years ago with the help of Indian Prairie School District 204’s Special Needs PTA. Anywhere from six to 20 men may attend Special Needs Dads meetings, but they average 15 a month and at least 80 are on their email list, he said.
Tim McFadden, of Naperville, is one of the younger fathers in the group. His 2-year-old son, Dan, was diagnosed with ATR-X Syndrome, an exceptionally rare genetic disorder causing global developmental disabilities and numerous medical issues, he said.
“Part of the value of the group to me is drawing on a wealth of knowledge and experience that the other dads have,” McFadden said. “I’m getting lots of practical advice and insight, but also seeing models of strong and compassionate fathers.
“And when our state’s social services sector is so underfunded and stretched, and people have such a ridiculous time accessing basic services, or having horrible schooling issues, it provides some measure of relief to hear other guys laugh and cuss about the insanity we go through.”
“Friends and family really cannot truly understand what it is that each of us deals with every day. There is a stress that never goes away,” said Frank Matusik, a Naperville residetn whose son, Sam, needs a parent with him at all times. “This (meeting) is an outlet that I will never have anywhere else.
“People say that me and my wife need to get out more. It’s hard to get out. … Even when away physically, I am still calling, texting and thinking about what’s happening at home.”
Many of the men say a two-parent team approach is crucial to their child, their marriage and the family. But they worry about giving enough time to their other children and their spouse.
While many have stay-at-home wives who tend to their child’s daily needs, the men feel it important to help out after work and to give their wives a break from daily caregiving.
Balancing it all is frustrating and exhausting, Latourette said.
The moms are often able to attend more programs, more support sessions, meet other mothers in similar situations, Matusik said. That’s one reason why his one night out is so important to him.
Jim Powell, the brother and co-guardian of his 55-year-old sister with Down syndrome, says he is an “adjunct member” because he doesn’t have a disabled child, but hopes his different perspective helps some of the dads negotiate “the minefield of planning the life journey for their children.”
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His parents made wise choices for his sister back when others still hid their special needs children away, he said.
“So in essence when I support dads or others with a challenged family member, I feel like I am paying back all of the people who supported and helped my parents and sister over her lifetime.”
Latourette is among the first to admit that life can be overwhelming. “Having a special needs child affects every aspect of your life. Your work, your family, your marriage, your finances…
“You’re working 10 to 12 hours a day, you come home and you have paperwork, and a family, and all these issues to keep up on.
“But then you remember that everybody has something in their life to deal with,” he said.
“And most of us can laugh at our life in a healthy way. We are dads who want to do everything for our family. And still we don’t ever feel like we’re doing enough. We sometimes call ourselves ‘Dads on the Edge.'”
Just recently the Latourettes and Matusiks found an unexpected bonus to their group involvement. Both have sons who never had never been able to have a friend over to their house, Latourette said. So the families got together for a picnic.
Latourette said at one point during the afternoon the parents were in the kitchen visiting and discovered that their special needs sons had moved to the next room, and were just sitting together, content to have a friend their age in the house, even if they could not communicate the way others do.
“To everybody else, on paper, everywhere, our kids are special needs kids. But when we’re with them at home, they’re just kids, our kids,” he said.
Joan Cary is a freelance reporter for the Naperville Sun.