A Taylor-made house: Detroit Lakes native inspired by son to push for special-needs citizens' independance
FARGO - Sometimes blessings flow in surprising ways, wrapped in special packages - unexpected gifts.
One of these "Taylor-made" blessings could change the face of housing for special-needs populations in Fargo and perhaps all of North Dakota.
The vision of one Fargo woman was inspired by her special needs son, but it started with a trait passed down from her family.
Jane Hummel Nelson inherited the "compassion gene" from her father, Lynn Hummel, a lawyer and writer, and her mom, Bev, a teacher. Growing up in Detroit Lakes, Jane describes her parents and younger siblings, Guy and Sally, as hospitable and welcoming to all kinds of people.
"I remember my dad's clients with special needs coming by the house when I was a young girl," Jane said. "I found it all fascinating. In seventh grade, I wrote a career paper saying I wanted to be a social worker."
Following graduation, Jane headed to the University of North Dakota, declaring a social work major. Her experiences during college there changed her life. Jane completed two internships working with people who have special needs and spent two summers teaching swimming at Camp Grassick, near Dawson, N.D., a camp for children and adults with physical and mental challenges.
"During my time in college, I developed a heart for people with disabilities," Jane said.
Through a UND connection, Jane found an internship in Denver with the Army Medical Center. She met her husband, Steve, an Army neonatologist, who also trained as a bioethicist. Their first child, Ryan, was born in Denver in 1986.
The couple then moved to Ft. Hood in Waco, Texas, where Jane decided to take special education classes. To be closer to family, Steve eventually left the Army and joined a practice in Minneapolis.
April 1989. Minneapolis birthing room. The Nelsons' second son, Taylor, entered the world. He was a small, sickly baby with a weak cry.
"Something's not right," said dad, the physician. Other doctors reassured him that everything would be fine.
"Steve worries and I'm the eternal optimist," said Jane. "But then, Taylor started missing all his milestones that an infant should hit. Steve's research convinced him that Taylor had a rare syndrome."
The Nelsons headed to the University of Minnesota where a specialist diagnosed Taylor with Cornelia de Lange Syndrome, genetic and so rare that only one in 10,000-30,000 will be born with it.
"The initial prognosis was not good," remembers Jane.
Doctors told the Nelsons that Taylor's average IQ might be 38 and he faced a life expectancy of 7 to 13 years, Jane said.
"Taylor had many of the syndrome's physical characteristics, and I had my very own special needs baby," she said
The Nelsons moved to Fargo when Taylor turned 1, where Steve worked at the Fargo Clinic. Defying the original prognosis, the sickly baby Taylor grew into a physically healthy child.
Jane knew an early diagnosis was the best, and yet, this diagnosis was a mixed blessing. Taylor attended preschool at age 3 and entered Longfellow Elementary School in north Fargo.
Jane began working professionally with an early intervention program for special needs children, ages birth to 3, providing in-home visits and support for families.
When Taylor was 2½, the Nelsons' third child, Tessa, was born, followed by Christian in 1999.
"Taylor began his hellion stage," Jane said. "He wouldn't sleep, had autistic tendencies and didn't speak until he was 8."
But Jane didn't think Taylor needed medication.
"I was an idealist and thought we could handle all this," she said. "After all, his dad was a doctor, and I was trained to help kids with special needs. I think we were embarrassed to think that we couldn't handle it.
"It was exhausting. We finally accepted help, and I'm sure his teachers and siblings were especially happy. This blessing taught me what other parents go through."
Taylor attended Agassiz Junior High School for four years and then Fargo South until he turned 21.
"He and Tessa walked through graduation together at South," Jane said. "She was the graduation speaker and wants to be a social worker. Taylor has helped all our kids be comfortable around people with differences."
"I can't imagine being without Taylor," said sister, Tessa. "He has helped make our family more compassionate and overall much happier. Taylor makes me want to be a better person."
Taylor was also a blessing to Steve in his practice, where all of the Nelson children have served as volunteers for people with special needs, Jane said.
Expanding Taylor's world
When Taylor was about 16, Jane began looking into housing for a young adult with disabilities. She had concerns about what would become of Taylor after graduation. She consulted professionals, researched and talked to current and former co-workers and found few options.
"These young adults need a full life with freedom," Jane said. "It's not like 30 years ago when their worlds were narrowed and shuttered. They need to expand and open up their worlds, with both privacy and socialization."
Jane and Dave Morstad, a former co-worker from Camp Grassick, researched the needs and brought their findings to the Dakota Medical Foundation. After three years of talks, interviews, research and business plans, new possibilities emerged.
Within the framework of "congregate living," supported by Dakota Medical Foundation and partnering with the Anne Carlsen Center, a Fargo pilot project will be born in 2013.
"Our dream is that this will be the next generation of congregate living for adults with special needs, living within the heart of the community," Jane said.
The idea is based on a continuum of care options similar to the range offered to senior citizens, Jane said.
"This needs to be family driven. If parents don't get behind it, it will stay the same. With families and the community working together, there will be more options and a broader range of activities for the residents," Jane said.
Fargo's first model of congregate living for adults with disabilities will be christened TML, Taylor Made Living.
"I think this plan is fantastic," said Tessa. "Just because Taylor and others have disabilities, doesn't mean they can't have meaningful lives. I'm so proud of my mom and excited for him."
Merrie Sue Holtan is a regular contributor to The Forum's SheSays section. She lives near Perham.