Fathers find fellowship with D.A.D.S.

"When Avery was younger, I remember coming back from a Special Olympics track and field meet. Avery did great! She got a medal in her event and was so excited," recalls Steve Connors, Avery's father. "I was so proud of her. She threw the tennis ball 8 feet."

Connors explains that it was a huge accomplishment for Avery, now 18 years old, who has Down syndrome. He also explains that there are times when it can be difficult to share that type of excitement and the sense of pride he feels for Avery's achievements with fathers of typical kids. All dads are proud of their kids. But when talking with dads whose kids are playing club sports, he wonders whether or not they can really relate to Avery's struggle to achieve an 8-foot throw.

Six years ago, Connors, along with several others dads, started a support group of sorts where dads of children with Down syndrome can gather to listen, share and even brag a little (or a lot) to other dads who "get it." This group is modeled after the national D.A.D.S. (Dads Appreciating Down Syndrome) organization.

The Chicagoland D.A.D.S. group is intentionally set up in a relaxed environment where dads can come to find fellowship among one another. The group meets the last Sunday of every month at Emmetts Ale House in Downers Grove. As it says on the National Association for Down Syndrome (NADS) website, dads can come together to "share what you know and learn what you don't" … maybe even enjoy a beer at the same time.

For Aaron Huston, this is his time to unplug for a few hours. Like Connors, he too gets to brag about both his sons, 8-year-old Cody with Down syndrome and typically developing 5-year-old Ryan. What he really finds helpful though is sharing the challenges that come with raising a son with Down syndrome and learning from dads who are on the other side of those challenges.

"Sometimes it's hard to hear what to expect. But, for better or worse, I want to know," Huston said. "It has helped me ease into some things, made it a little less challenging."

While there is mentoring that takes place, Connors is careful to explain that he doesn't go so far as to give advice. "I am cautious about mentoring. Advice should come from professionals. I can only share what I went through with Avery. Every child is different and things, like therapies and special education, change over the years." He goes on to say, "I try to listen more than anything else. There are a lot of I-know-what-you-are-feeling huddles that go on when we get together."

Peter Vargulich, whose son, Tommy, also 18 years old with Down syndrome, finds himself in a bit of a different place than some of the dads in the group. As a member of this group, Vargulich has been tapped by NADS to reach out to the parents of a young girl who was going through heart surgery. About half of the infants born with Down syndrome have some sort of heart defect. For many, surgery is often necessary at a very young age. Vargulich was asked to connect with the family during a difficult time. "I was able to meet with them. They were struggling. I was honest about the good and not-so-good parts that come with heart surgery," recounts Vargulich. "I tried to be constructive and hopefully help by reducing some of their apprehension."

Connors is quick to point out that the conversations are completely free flowing. Rather than formal agendas or guest speakers they prefer to let the topics develop more organically. So at any given time they might be discussing what's happening in schools, the importance of a dad's active role in an IEP, the latest legislation affecting families with a child with special needs, who has a good dentist, or even the latest techniques used for potty training.

Sometimes their meetings are simply a beer, lively conversation and whatever game happens to be on the television. Beyond the D.A.D.S. group meetings, they get together for a family picnic in the summer, a holiday party with spouses and often provide the manpower for charity events supporting NADS and other similar organizations.

Huston, who coordinates the Chicagoland D.A.D.S. website, encourages more dads to check out the group. He says there are some dads who don't make the meetings but still like the virtual fellowship offered through the website. There is no cost to join and it is open to everyone in the Chicago area. He says they have dads from all over Chicagoland attending. But if that isn't convenient for you, he can put you in touch with another chapter.

The Chicagoland D.A.D.S. group doesn't have agendas and there is no pressure placed on dads attending. Rather it is all about a safe, enjoyable place where dads can listen, share, brag, learn, grow and find fellowship. Maybe even share a beer or two.

"I wish this group existed 10-15 years ago," shares Vargulich. "It could have made things much easier." It's the fellowship of the other dads that keeps him involved. "I appreciate the understanding of these guys. Sometimes reading and research is no substitute for genuinely connecting with other dads who know what you are going through."

To learn more about the National Association for Down Syndrome, visit www.nads.org. To connect with the Chicagoland D.A.D.S. chapter, visit www.chicagoland-dads.org.

• Sherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at sherrym@wdsra.com. More information about WDSRA can be found at wdsra.com.