When 13 Equals 6
Spring 2010 Issue | By Emily Frandsen
When Joey Watson was born, his mom, Pat Farmer, saw a sweet, chubby-faced little boy. Only the small hole in his scalp and the extra finger on each of his hands gave the outward impression that there might be a problem.
She was lost when, just a few days after he was born, doctors told her that her son Joey was born with Trisomy 13, a chromosomal disorder that causes babies to have a limited life span.
“My first reaction was, ‘how do you spell that?’” she said. “We really didn’t know what that meant.”
Most told her it meant there was little hope for her son. Some even told her that it would be best to just walk away.
She and her husband were overwhelmed, sad and confused, but they couldn’t just walk away. And the decision they made for their son changed not only their family life, but sent Farmer on a career path she had never dreamed of — one dedicated to education and support of children with disabilities and their families.
After weeks of seeing her son in a hospital crib, Farmer decided, against the advice of many, to take him home. Once he was home, she was scared and concerned.
“I realized I didn’t know how to take care of him,” she said. “I didn’t know how to teach him.”
She called a professor at Idaho State University, Dr. Carol Stenson, who gave the ISU College of Education alumna some advice — take a few classes in special education.
“It sent me down a path I didn’t know I’d go down,” she said.
Farmer learned how to teach her son and others with disabilities. As he grew, she relished the normal moments in her son’s life — when he learned to walk holding onto the furniture, or when he learned to say “mama.”
“He was learning and he was growing, and for me, it was significant. I think he was sending a message,” she said.
Farmer participated in the first gathering of families whose children were identified as having Trisomy, The Support Organization of Families with Trisomy 18, 13, and Related Disorders (SOFT). The international group was founded by Kris Holloday, a mom in Utah whose child was diagnosed with Trisomy 18. She gathered five families, including Farmer, around her kitchen table. Farmer was the group’s first president.
That gathering grew into a worldwide association of families and professionals. Today, the organization boasts hundreds of members from seven countries, from the United States to New Zealand. Farmer still supports the Joey Watson Memorial Fund, a scholarship that allows families to attend the organization’s annual conference.
“(SOFT) has provided phenomenal help for families,” Farmer said.
When she first tried to research her son’s disorder, Farmer found a small paragraph in a book, “Trisomy is not conducive to life.”
Joey defied the odds. He lived to be 6 years old before passing away peacefully in his sleep. He would have been 32 years old today, and Farmer thinks he would be proud of the service his mother has given to children with disabilities.
Today, thanks to Farmer and her co-authors, there are guidebooks for families. Farmer, Dr. Carol Stenson, Holloday, Dr. John Carey and others wrote “Trisomy 18, A Guidebook for Families,” and “Trisomy 13, A Guidebook for Families.”
She became an adjunct faculty member at ISU, where she supported Dr. Stenson in creating an award-winning program called, “Saturday School.” Parents with children with disabilities could bring their kids to ISU to be taught by college students while their parents got a chance to rest, run errands or go to a movie.
Farmer eventually took a position at the State Department of Education, where she worked to ensure that students with disabilities received the services they needed. Today, she is the director of student support services at Blackfoot School District No. 55, and in 2009 was awarded the College of Education’s Professional Achievement Award.
“I feel like I’ve come around full circle,” Farmer said. “I really feel for these parents,” she said. “I didn’t expect to be here.”
On the wall in her office is a colorful finger painting done by Joey. For Farmer, it’s a symbol of teachers who took time with her son, making sure Farmer had artwork he made. These are the small things that parents who have children with disabilities often miss, but always treasure, she said. It’s a reminder to her that parents need teachers and other caregivers to help provide children with those ‘normal’ moments.
“I lost Joey, but I’m still working on his behalf,” she said.
What is Trisomy 13?
Trisomy 13, also called Patau Syndrome, is a condition caused by a chromosomal defect. As with all trisomy disorders, a person with Trisomy 13 has a third chromosome when there would otherwise be two. Trisomy 21, Down Syndrome, is the most common Trisomy disorder.
More than 80 percent of children with Trisomy 13 do not live past the first month. There are often signs of congenital heart disease. Characteristics of children with Trisomy 13 include developmental delays, close-set eyes, decreased muscle tone and extra fingers or toes.