Dads Appreciating Down Syndrome (D.A.D.S.): Don’t call us a support group!
Charlie’s dad went to his first D.A.D.S. meeting hours after I had undergone an amniocentesis to determine if Charlie had Down syndrome. That’s right. We didn’t even have a diagnosis. We're weird like that.
Before he departed, he asked if I wanted to go, since it was held at a restaurant. “Um, I think they call it 'dads' for a reason,” I replied, thinking mostly about how they’d likely be drinking beer, how much I missed beer during pregnancy and, well. That was that. That night helped change our lives — and our mindsets — or the better.
Congratulations! It's a D.A.D.S.!
Joe Meares conceived the idea of Dads Appreciating Down Syndrome (D.A.D.S.) after his wife gave birth to their fourth daughter, Peyton, who has Down syndrome. In May 2002, eight fathers met in an Indianapolis restaurant, and D.A.D.S. began.
Today, D.A.D.S. national supports more than 50 smaller D.A.D.S. groups that form through their local Down syndrome organizations, with the common mission "to assist and support, through fellowship and action, the fathers and families of individuals with Down syndrome."
"We hesitate to call [ourselves] a 'support group,' even though we do, in many ways, support each other," the national organization’s website says.
"You won’t find us in a church basement drinking warm coffee and whining about having children with Down syndrome. Instead, you’ll find us… coaching our kids' sports teams, participating in our children's IEPs, volunteering at local Down syndrome fund-raising events and even sponsoring fund-raising events of our own."
At the core: Monthly meetings
Meares’ enthusiasm for the organization is palpable 11 years later. "My favorite thing is facilitating the kick-off of a new D.A.D.S. group. It’s May 2002 all over again, but with a real plan," he says. "Sometimes there are some pretty raw emotions that have never manifested — but they now have a safe place.
"More often, there is a lot of genuine pride and joy as fathers talk about the value their child adds to their life and their family. Conversations they just never have at work or with other friends."
The three foundational pillars of D.A.D.S. are:
Remember — whining isn’t the goal. "Action is the third leg [of the tenets of D.A.D.S.],” Meares emphasizes. "Action is involvement — individually and corporately — as D.A.D.S. in the local Down syndrome community, in fund-raising, in legislative advocacy [and] in advancing Down syndrome research."
Yay, nagging wives!
Attendance usually is, well, on the forced side.
"My wife made me go," Pete Heaslet admits. But once there, he realized the D.A.D.S. group was so much more than testosterone meets Dear Abby. "There is a ton of information and discussions," he explains. "Since a lot of times the moms… are the ones taking our children to a lot of the doctors appointments, it is good to hear more information about events/procedures and things in the news that otherwise I wouldn't know about."
His organization, affiliated with the Down Syndrome Association of Greater Charlotte, N.C., is evolving but faces an image problem, which Heaslet says may contribute to low attendance. "It is obvious that a lot of people think it is a drum circle event where all the guys sit around… pouting about their lot in life. But that is so not the case."
Paul Lucas has children ranging in age from 1 year to 21 years, and his youngest has Down syndrome. He recently attended his first D.A.D.S. meeting and describes the impact a testosterone-bearing invitation made.
"The important thing for me was receiving the follow up email from a male," Lucas says. "I really don't think I would have attended the first meeting [otherwise]. I felt much more comfortable knowing I had spoken to a person from the group and he was going to be there as well, even though we had never met."
Meares understands attendees often are nudged by their wives, and he says that knowledge should drive how a D.A.D.S. group welcomes new fathers. "The assumption shouldn’t be made that [the new father] is all on board with the [Down syndrome] journey. There is sometimes a default [by veteran D.A.D.S. members] to present information, when asking questions and listening is a more effective tactic."
A network of experience
Brian Esarey has a toddler with Down syndrome. He says the network D.A.D.S. provides is a big advantage because participants immediately meet "someone that has been though what you are going through now."
In our case, Jeremy returned from that first meeting buoyed by the positive outlooks of the fathers he’d met. I remember his chuckle as he recounted one dad’s frank, good-natured portrayal of his family, describing his child with Down syndrome as a joy, while his other children caused more angst.
His positive experience set the tone for his outlook on Charlie, and I'll always be grateful.
For more information about starting a D.A.D.S. group in your area, email firstname.lastname@example.org.