Ten guys meet at a sports bar. They drink beer, eat wings and talk Down syndrome. DADS, short for Dads Appreciating Down Syndrome, is a support group for dads who don’t like support groups.
“We are wired differently,” said Anthony Cirone, a founding chapter member from south Charlotte and father of 18-year-old Julia, who has Down syndrome.
The guys agreed that a traditional support group wouldn’t work for them. They needed to find fellowship in a casual way.
“It’s about camaraderie – it gives us an outlet to talk about our kids and come to the realization that Down syndrome isn’t going to be a tragedy anymore, just a part of fatherhood,” Cirone said.
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Jeremy Wallace, father of 5-year-old Charles from Charlotte, shared through tears how the group changed his life. He came to his first meeting while his wife was still pregnant, soon after finding out their child would be born with Down syndrome. He said he was searching for answers and found the group online.
Meeting other dads and seeing them enjoy life and hearing stories about their children and how far they’ve come – it made me realize that it’s going to be OK.
Craig Wanek, DADS member
“I broke down at the first meeting, when they asked me to share my story,” he said. “They embraced me and congratulated me on having a baby.”
He said they accepted him and helped him get back to the joy of parenthood.
“It took me from a place of being scared to being excited about having a baby again,” he said.
Stallings resident Craig Wanek had a similar experience. He found out about the group after participating in Down Syndrome Association of Greater Charlotte’s (DSAGC) Buddy Walk fundraiser and awareness event, after his now 8-year-old son Michael was a little over 12 months old.
DSAGC is a nonprofit that supports families of children and adults with Down syndrome in 12 counties including Mecklenburg, Union, Cabarrus, Catawba and York counties. DSAGC is an umbrella organization that presides over many smaller support groups such as DADS.
“I don’t know what I would have done without DADS,” said Wanek. “Meeting other dads and seeing them enjoy life and hearing stories about their children and how far they’ve come – it made me realize that it’s going to be OK.”
Parents of children with Down syndrome ranging from newborns to young adults share stories of challenges and triumphs during monthly meetings. Some monthly meetings are just about fellowship, others include experts who provide information on medical, educational and psycho-social topics. Members also raise money and provide muscle for DSAGC events.
October’s guest speaker, Doreen Byrd, Exceptional Children’s Assistance Center (ECAC) parent educator, gave a presentation on how to approach Individual Education Programs (IEPs). IEPs are a significant part of the Individuals with Disabilities Education Act (IDEA Act) that ensures social, emotional, medical and behavioral needs are met as well as educational goals for students with disabilities.
“Information is power,” said Byrd. “Parents are required team members and should be a vital part of the collective decision-making when it comes to their child’s IEP.”
At the meeting, she discussed parental rights, the laws surrounding the IDEA Act and how ECAC provides counsel to parents on how to negotiate their child’s needs through IEPs. The dads spoke up about personal challenges, shared frustrations and learning experiences.
Former DSAGC president and DADS chapter member Bryan Maddex is the group’s unofficial IEP adviser. He advocates on behalf of families in the Charlotte area every year during IEP meetings. He said the most important things to remember are to “speak openly about what your child needs” and that “you can always push back if you’re not satisfied.”
The group has also heard from experts on therapy, wills and special needs trust funds.
Cirone said they are always looking for ways to provide more support for group members, but mostly, it’s about friendship.
“Along the way, I have shared some laughs and made some of my best friends,” he said. “It’s unbelievable how fast time flies with great fellowship.”
Cirone has been a part of the DADS group since the first chapter of this national group was founded by Joe Meares in Indianapolis. Cirone helped start the Charlotte chapter a year after moving here in 2006.
“I have shared Julia’s victories and challenges once a month now for 15 years,” he said. “I have gotten advice and support when I needed it and helped pay it forward by doing the same.”
Crystal O’Gorman is a freelance writer: firstname.lastname@example.org.
For information about DADS (Dads Appreciating Down Syndrome), go to www.dadsnational.org/.