If only your father can see things your way. Then he’d understand.
That lament fades as you become an adult and realize the correlation between a father’s empathy and how he knew what was best for you. But the challenges of fatherhood are compounded with daughters or with special-needs children.
For Mike Bruno, it’s literally impossible to see things his daughter’s way. His 8-year-old daughter Cassie has autism and is blind.
Bruno attempted to walk a mile in her shoes, which meant taking a few steps with his eyes closed while running on a trail one day.
“I wanted to explore which sports Cassie can participate in,” Bruno said. “I shut my eyes to see how many steps I could run, then I did five, and then 10, and then 15.”
Months later, Bruno was running 26.2 miles, blindfolded.
Through donations on his website, 26-2blindfolded.com, Bruno raised more than $27,000 for the Vision Research ROPARD Foundation in advance of running last year’s Dick’s Sporting Goods Pittsburgh Marathon.
Bruno was tethered by an 18-inch nylon cord to Jim Irvin, his sighted guide, as they finished the marathon in three hours, 48 minutes.
Bruno, who is the head volleyball coach at Point Park University, was an all-conference distance runner in college, but he’d gone 20 years without completing a marathon. He’ll run the Pittsburgh Marathon blindfolded again on May 4, 2014, but this time he’s raising money and awareness for Autism Speaks.
At one moment during last year’s marathon, Bruno experienced another challenge his daughter encounters, something he didn’t anticipate that is common for autistic children. Bruno went through sensory overload when he had to turn toward loud cheers and music playing from a curbside speaker in the Shadyside neighborhood of Pittsburgh.
“I equate it to being in a haunted house in the dark,” Bruno said. “Your first instinct is you want to go away from the noise.”
Through his experiences, Bruno can also empathize with parents. You don’t have to run a marathon blindfolded or perform other amazing feats to be a better parent of a special-needs child, but here are six lessons from Bruno’s story, which began with his simple experiment in empathy on that trail nearly two years ago.
Create normalcy. A common tip for marathon runners is not to try anything different on race day. Keep your routine the same. Don’t wear shoes you haven’t worn before. Wear comfortable clothing. Keep your diet and pace the same. That goes for Bruno and Irvin. They had to first establish normalcy as running partners. They couldn’t have completed the marathon without first spending time training together. A few practice runs in the weeks leading up to the marathon made their accomplishment possible.
In special-needs parenting, you accomplish this by doing the simplest of things: spending time with your child. When Cassie was born, another parent, whose special-needs child is now an adult, told Bruno, “Mike, you have a friend for life.” That friendship stabilizes and creates normalcy.
Exercise. A good way to spend time together is exercising. According to Bruno, exercise is the best antidepressant. Bruno connects with his daughter by riding a buddy bike or pushing her in a jogging stroller. This connection Bruno has with Cassie is much different than with his other daughter, 10-year-old Carly, because there are no distractions like television and cell phones.
“Our interaction is touch, it’s sound, it’s using our senses to enjoy time together,” Bruno said. “We’re slapping five or singing and enjoying a song or taking a bike ride.”
While you can’t run a marathon without exercising, you do have the option to unplug by removing your earphones and GPS watches and simply enjoying your run, whether your running partner is your father or Mother Nature.
Be a voice for the voiceless. Thanks to the Pittsburgh media telling his story and the unusual method of completing the course, Bruno was one of the most recognizable participants in the Pittsburgh Marathon last year. But hearing the cheers and crossing the finish line with arms raised was not as gratifying as being invited to talk at a few area elementary schools.
“To educate our youth in a classroom setting about special needs children, that was the pinnacle of it for me,” Bruno said. “Having these kids understand compassion is unique. That opportunity to do that was the best part of the experience.”
Bruno’s message stressed inclusion, acceptance and how everyone is unique. He’d ask students to close their eyes as he talked to them.
“Just because you can’t see everybody doesn’t mean you don’t exist,” Bruno would tell the students. “Say ‘Hello.’ Talk.”
Bruno also finds teaching moments outside the classroom when they present themselves. When the Brunos were at an ice cream stand, a little boy asked his father why Cassie was carrying around a stick. Bruno asked the boy’s father if he could talk to his son and show him. He then explained Cassie’s condition and walked the boy with his eyes closed around the perimeter of the ice cream stand to simulate her condition.
“That father was so appreciative that we took the time to educate his son,” Bruno said. “A lot of times they simply do not know what to say.”
Being the voice of the voiceless means speaking up to educate on behalf of special needs children who can’t provide explanations or for parents who are reluctant to speak up.
“There are a lot of times where you’re out to dinner and people are staring at you and someone asks a question,” Bruno added. “I’m not embarrassed to say what her challenges are and what she does and how we go about life. That’s just our normalcy.”
Appreciate the milestones. “The harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly; it is dearness only that gives everything its value. I love the man that can smile in trouble, that can gather strength from distress and grow.”
These are the words of Thomas Paine, and, at the least the first line, are words that Bruno and many people in the running community know well. But when Bruno cites the quote, his context is parenting a special-needs child.
“The more you struggle,” Bruno said, “our milestones are that much more appreciated.”
According to Irvin, Bruno’s sighted guide, Bruno would ask often about mile markers reached and upcoming hills. This happened so much that Irvin resorted to reading spectator’s funny signs like FREE BEER: 13.1 MILES AHEAD so that they could “smile in trouble” as Paine would say.
All runners, like parents, need to recognize milestones and progress, but without comparing yourself or your child to others. There’s always going to be someone better or worse off than you.
Network. There are others out there willing to help. This is a reminder from Bruno both for raising money for your marathon charity and for parenting a special-needs child.
“You’re not alone; there are other parents,” Bruno said. “I’ve found that networking with other special-needs parents is such a brotherhood and sisterhood of mothers and fathers who can relate and talk to you.”
Bruno also found an incredible response to his marathon charity.
“My advice to people is that if you truly have a passion for something, go for it,” Bruno said. “There’s kindness out there and people just need that reason to give.”
Live for today. When Cassie was born 15 weeks premature, she weighed one-pound, 14 ounces. She was diagnosed with retinopathy of prematurity. She spent 114 days in the neonatal intensive care unit.
Bruno admits that he “unraveled.” He anticipated Cassie getting picked on in her kindergarten class. But Bruno’s wife, Jennifer, told him “Hey, let’s live for today and not five years from now.”
“I’ll never forget,” Bruno said. “I remember reaching my hand into the incubator when she was a newborn and four of her fingers couldn’t cover my pinky. I remember thinking to myself, she’s going to be special; she’s going to do something great. I had that moment early on in her life.”
From then on, the Brunos have taken it day-by-day. Through Cassie’s 10 surgical procedures, including the removal of her lens and a treatment in which Jennifer’s blood plasma was injected into Cassie’s retina to “flatten it out.” As technology advances there may be opportunities to improve her vision with the use of microchips. But that’s further down the road.
Bruno hopes to someday be a sighted guide for Cassie during races. Some would argue he’s already a sighted guide for her and others in a marathon called life. That’s the one with the more glorious triumph.