“Diagnosis: D.A.D.S.”

Support group for fathers of children with special needs
By Wendy Bulawa Agudelo
May 28th, 2009

We all desire our children to be healthy and high functioning,” said psychologist Tom Golden. “Should that desire be tainted, the result is a feeling of loss-- similar to a death but on a different octave.”

July 2007 marked a celebratory milestone for new parents Jeffry and Jennifer Roback. Their excitement was quickly tempered however when they received the unexpected news that their first-born son Paul had Down syndrome. “The anguish and hurt in my wife's eyes made me realize that I had to be strong for her. I tried to act the part of a strong husband.” said Jeffry Roback.

For men, expression of emotion is not the norm—rather the exception. When tragedy strikes or unexpected news is learned, women are better equipped to connect with others, gain support, and work through their emotions. Men however, are left with few places to turn.

One year after his son’s birth however, light erupted for Roback at the National Down Syndrome Society’s Conference in Boston. An exhibitor at the event caught his eye and rather than stroll by, he engaged Ray Glowner and Joe Meares of D.A.D.S. (Dads Appreciating Down Syndrome). “Talking with another father who had similar experiences provided an incredible sense of security and camaraderie. From that moment on, I knew I had to get a chapter organized in Massachusetts.”

When women are under stress, they move towards interaction, yet men move towards action,” said Golden, an expert on healing and author of Swallowed by a Snake: The Gift of the Masculine Side of Healing. He applauds the evolution of men-only groups as ‘safe’ locations where men can stand shoulder to shoulder and step together towards a common goal. “Men naturally move towards action to heal themselves. It is their coping strategy.”

Armed with passion in his heart and a call to action, Roback founded D.A.D.S. of Massachusetts which in less than one year, now boasts more than 140 members who travel to monthly get-togethers and events from all over the Bay State, southern New Hampshire and Rhode Island.

D.A.D.S. isn’t as much a support group as an ‘action group,’ focused on deep involvement with the community at large. Its Massachusetts chapter has organized poker tournaments, flapjack breakfasts, holiday parties and guest speakers to raise funds, awareness and a base of knowledge for themselves and community members. The fathers-only non-profit donates a portion of funds raised to the Massachusetts Down Syndrome Congress (MDSC), and the remainder is secured for use at future events and activities. “Our group is unique in that guys can get together, let loose, let down our guard, and be ourselves, said D.A.D.S. of Massachusetts member KC Paul. “We don’t have to showcase the strict, socially-accepted behavior of what a man is supposed to be—strong and non-emotional. All of us have the same bond and similar experiences to share and we can do so without fear. When around other guys, it becomes easier to open up and our group defines male camaraderie.”

At a time when many fathers naturally feel a sense or loss or despair, KC Paul admits to being just the opposite-- a father with a profoundly positive outlook. “When I learned about my son’s diagnosis, I didn’t feel as if I’d lost a future baseball or football player. Instead, I spent more time on the things that Noah would bring to the lives of myself, my wife, and our two other children—compassion and acceptance. There are a lot of fathers in the world, but the guys in our group get together for the sole purpose of our kids. It’s cool that a group of guys can come together, listen to one another and become better husbands,  greater contributors within our communities, and ultimately, better fathers.”
In fact, the experience of having a child with Down syndrome has made such an impact on KC and his wife Shannon that they are now considering domestic adoption of a baby girl with Down syndrome. Jeffry Roback believes his son Paul is like all other children--who will reach developmental milestones similar to his peers—just in his own time. “I know my son will walk, talk and attend high school. It may just take a little more time. It’s my hope that society will see our children as they would any other child and celebrate them for who they are—not for what they aren’t.”  A shared opinion from members of D.A.D.S. is that every parent has challenges to overcome while raising a child—and each parent’s challenges are different. In the end, all parents desire their children to live full, productive and happy lives with the same opportunities made available to them.

Given a strong and growing membership, D.A.D.S. has even extended invitations to other fathers of children with special needs. “If there are fathers out there seeking others that share a similar bond, we would readily welcome them,” said Roback. “Regardless of whether or not their children have Down syndrome, the reality is that all fathers of children with special needs can feel alienated at some point. We’re here to help one another and you don’t even have to attend a meeting to gain an immediate sense of support.”

The next meeting of D.A.D.S. is June 24th at John Harvard’s Brew House in Framingham (1 Worcester Road). More information can be found on the organization’s website (www.dadsmass.org) or by contacting Jeffry Roback at paulsdadda@yahoo.com.

Wendy Bulawa Agudelo, who resides on the north shore, is a freelance writer and special needs liaison for P&K and  mother to three young children.