Mike Byron was not prepared for the news he received in the delivery room just moments after his second child was born. The three ultrasounds his wife Laura had during her pregnancy revealed nothing unusual, however his daughter, Whitney, was born with Down syndrome. And if that news wasn’t overwhelming enough, she also had a serious heart condition that would require surgery.
Patrick Schooley had a similar experience. Just days after his son Colin was born, a geneticist approached him and very bluntly stated that Colin had physical markers for Rubinstein-Taybi syndrome, a rare genetic disorder – a condition Schooley knew nothing about.
Both Mike’s and Patrick’s lives were changed forever as they were ushered into the ranks of being parents to children with special needs. Mike, a real estate developer, and now the father to three daughters (Anne, 10; Whitney, 8; and Ashley, 2) remembers feeling scared and angry. He says, “When you get hit with that news, you go through the grieving process.” He grieved the loss of his expectations for the delivery and infancy of Whitney and remembers thinking, “Life is always different than what you expected.” Patrick, a Dean of Students and Head Coach at Fishers High School, remembers feeling similar emotions. He says, “I was scared to death. It was very hard as a father to hear about the challenges my son would likely face.” For Colin those challenges would include speech delays, physical limitations and learning and cognitive delays.
Besides having children with special needs, Mike and Patrick have something else in common: they decided to get involved. “Dads just want to fix things,” Mike says, but he found that while there were plenty of support groups for mothers, dads were often told “you can cook the hot dogs” at events. That wasn’t enough for Mike. He wanted to be informed and active in his daughter’s life. Dr. Richard Schreiner, who at the time was the Physician-in-Chief and Chairperson for the Department of Pediatrics at Riley Hospital, suggested that Mike connect with a group called Dads Appreciating Down Syndrome (D.A.D.S.). Schreiner himself was also a parent to a child with Down syndrome. Now years later, Mike is the Executive Director of D.A.D.S., a group that meets the second Tuesday of each month. Mike plans for a speaker at every event to talk about topics ranging from occupational and speech therapy to negotiating an IEP at school – and attendees also enjoy a free meal together. Mike is proud that the group has members from all socioeconomic groups and cultural backgrounds. His main message: “You are not alone in this.”
Patrick found his connection through sports. As a former athlete and coach, this was a natural outlet for him to find camaraderie with other fathers of kids with special needs. Patrick freely admits that his wife Latrica became the point person for everything relating to Colin’s diagnoses, including finding specialists and managing appointments, but when Colin became involved with Special Olympics, Patrick knew he found his role to play. Colin played basketball, softball and bowled just to name a few activities, and Patrick discovered these opportunities provided a good time to talk with other dads. This love of sport continued for Colin outside of Special Olympics, and he is now a proud athlete on the Unified Track and Field team at Fishers High School, a team coached by Patrick. This varsity sport allows students with identified developmental disabilities to partner with general education students on an athletic team. The expectations are high for all athletes, and everyone on the team is challenged to embrace patience, understanding and leadership.
What do Mike and Patrick want new dads of children with special needs to know? “There is so much love in the world for these kids,” says Mike. And although he encourages parents to be informed on their child’s condition, he cautions against paying too much attention to any medical advice or information that is more than five years old because things change so fast. Mike describes himself as a dad who went from being against Down syndrome to accepting Down syndrome, to finally appreciating Down syndrome. “My life has been better for my daughter Whitney,” he says. Patrick echoes the same sentiment, saying “Your child will do amazing things. Educate yourself. Get all the supports you can possibly get, and don’t take ‘no’ for an answer.” Regarding his own experience as a father to a child with special needs he says, “I wouldn’t trade it for the world.”