A father’s love
6/12/12 Lincolnwood Paul Otter talks with his son Paulie on the stairs of their Lincolnwood home. | Dan Luedert~Sun-Times Media
What is the most inconsiderate gift to give dad on Father’s Day?
NAME: Paul Otter
FAMILY: Otter and his wife, Nancy, are the proud and loving parents of two special needs sons, Pauly and John, and a daughter, Melissa.
Updated: August 13, 2012 1:47AM
Back in the 1980s Paul Otter of Lincolnwood was raising two young sons and had a daughter on the way with his wife, Nancy, while he worked as a trader at the Chicago Board of Trade. But despite being a loving father himself, Otter was never able to join in the excitement when his coworkers talked about things most dads do, like taking their boys to Little League or soccer tryouts or saving for college.
Nearly 28 years ago, the Otters’ first son, Pauly, was born with a genetic syndrome called Fragile X, a disease that produces symptoms such as learning problems, autism, anxiety and in some cases varying degrees of mental disabilities. Less than two years later the Ottos’ second son, John, also was born with Fragile X.
The genetic disease is caused by one gene that shuts down and fails to produce a vital protein, and it affects only one in 4,000 males worldwide (one in 6,000 to 8,000 for females). Those odds, however, did not come out in the Otto family’s favor.
Although they did not choose the hand that was dealt to them, the Otters’ future as a family had taken shape, and by the late 1980s they were the proud and loving parents of two special needs boys and a young daughter named Melissa.
Today Pauly, 28, is able to think and function at the level of a 5-year-old. John’s case of Fragile X is less severe, and he is able to read a little bit and carry on a conversation. The 26-year-old also has cerebral palsy.
The Otters, who will celebrate Father’s Day on Sunday, quickly found that being a parent of a special needs child takes unending patience and unconditional love. Although they knew it wasn’t always going to be easy, they would do it together, and they planned to stick with it through the ups and downs.
And that’s what they did. Although the couple didn’t beat the odds when it came to Fragile X, they defied other statistics that say more than 50 percent of marriages with parents of special needs children end in divorce.
“We’ve cried and laughed together over the years, but we’ve laughed more,” Otter said. “We’ve discovered it’s been a blessing to have two sons with special needs because it has brought us together to help give our sons the best life we possibly can.”
Otter said his strong marriage is owed to the couple’s commitment to keeping open lines of communication. He said the biggest part of that is being willing to share emotions with each other and not let them bottle up.
The proud father has developed a special bond with his sons as well. He remembers taking the pain he felt when the other dads at the Board of Trade would talk about taking their sons to sports tryouts, and turning those feelings into something positive by helping his sons discover their own individual interests.
“I always see the glass as half full,” Otter said. “I’ve been given lemons but I’m not going to bum out about that. So I made lemonade.”
While growing up, Pauly started to show interest in cooking shows. So Paul and Nancy joined their son every evening to watch “The Frugal Gourmet” and “Emeril.” Soon the family had morphed from the meat-and-potatoes type to whipping up a new gourmet family dinner each evening together.
Both Pauly and John shared a mutual love for music, so the Otters took their sons to see James Taylor or to Ravinia in the summertime. On Sunday evenings in the fall and winter the family would curl up together after dinner by the fireplace and listen to Joni Mitchell together.
They also went on walks together through the forest preserve, which helped John improve his cerebral palsy. They would pack sandwiches and make a day out of their nature walk, with the family’s beloved golden retriever trailing not far behind.
It was these seemingly average but extraordinary moments that kept the Otter family bonded together for so long through the good times and the bad.
“We said, OK, so we don’t have baseball players, but they like to cook and they like music,” Otter said. “Their interests became our interests and we had a lot of family time together.”
Today Pauly and John live at Misericordia, a nearby home in Chicago that houses more than 600 children and adults with developmental and physical disabilities.
The Otter sons have settled into their everyday lives living as adults at Misericordia, where they work, make meals together, and enjoy social time with their peers while under the supervision of around-the-clock staff. Outside of Misericordia, Pauly is in the men’s club at Queen of All Saints in Lincolnwood, and John enjoys attending sporting events.
“I call them once a day and sometimes the staff will tell me, ‘Oh John’s not here — he went to the Bulls game,’ or that they’re at a girl’s house down the street for a barbecue,” Otter said. “There’s a lot of social time on the weekends.”
Otter looks forward to the one weekend each month when Pauly and John come home for a family dinner, and stays in touch with daily phone calls. The couple’s home — which happens to be the same brick Colonial-style home Paul’s grandfather built before World War II — is also only a short six blocks away from where their sons stay.
As Pauly and John approach their 30s and the Otters continue to play active role in their sons’ lives, Paul remains optimistic but also admits to concerns about their long-term future.
“We want to make sure they’re taken care of after our lives have ended, and that can be scary to think about,” Otter said. “You try to do what you can to anticipate the ‘what ifs’ and make sure you’re planning out the future so they’ll be provided for.”