Jared Okun is like many 23-year-old college students. He said he enjoys playing and watching sports, loves to cook and make music on his laptop, and is crazy about his girlfriend. 

There is, however, one small difference. 

Okun has Down syndrome, and is a first-year student at Otsego Academy. The post-secondary school, which was created in 2014, is housed in a building at Pathfinder Village in Edmeston, New York which is a planned residential community for people with Down syndrome. 

One in every 691 babies in the United States is born with Down syndrome, making it the most common chromosomal condition, according to the National Down Syndrome Society (NDSS). The genetic cause of 95 percent of Down syndrome occurrences is a tripling of the 21^st chromosome. 

Although having Down syndrome can be a challenge, it isn’t slowing Okun down any, he said. 

“I love challenges,” Okun said. “We shouldn’t be treated differently. I’ve been called the R-word and that hurts me. I feel fortunate to be here, though. Being with people I can communicate well with and the great teachers — it’s a wonderful opportunity for me. Now, I could not be any happier.” 

A new beginning

Life wasn’t always so pleasant for Okun, a native of the Syracuse area.

“It was rocky before I came here,” he said. “I was always in special education classes. I wanted to go to regular ed. classes but no one gave me the opportunity to do that. I had friends in the regular classes and I wanted to be like them.” 

Still, Okun was a member of the wrestling team at his high school and played basketball, as well. After he graduated, he began to research Pathfinder Village’s individualized two-year Otsego Academy, he said, which is an educational and vocational skill-building program for people who have completed high school and want to attend a college-like program. The school will hold its first graduation ceremony in May. 

At the academy, Okun is expanding his academic knowledge and learning how to live independently, he said. His favorite subject is math, but his passion is cooking, he said.

“My mom makes a mean meatloaf,” Okun said. “I’m trying to match hers. My mom is my rock.”

Along with cooking meals, Okun is learning to budget, do his laundry and write a resume, he said. Recently, he attended a 300-level class at Colgate University about disability and differences in the classroom.

In addition to his academics, Okun has completed several internships, he said. Last semester, he worked at Pathfinder Village’s kitchen, helping prepare food and assisting in the on-campus bakery.

“That was hard for me to do because my mouth waters every time I go in that place,” Okun said with a laugh.

Okun has also helped out as a gym aide for physical education classes at Pathfinder Village, which he “really enjoyed,” he said. 

“If I didn’t come here, I wouldn’t be anywhere”

While the program at Pathfinder village is relatively new, it isn’t unique. Nearly 250 such programs exist nationally, and many are new. 

Derek James attends classes, works two jobs and is active in a campus ministry at Kennesaw State University, in Georgia.

The busy 22-year-old is a third-year student in the university’s Academy for Inclusive Learning and Social Growth, a similar post-secondary program for individuals with intellectual and developmental disabilities.

James, who lives on campus, has already completed a two-year certificate and is working on the more advanced version, referred to as the academy’s “grad school.”

He’s focusing on sports management so that he can coach.

“If I didn’t come here, I wouldn’t be anywhere,” he said.

The growth of such programs in Georgia is at least partly because the last few state budgets included money to support them. That aid is vital, said Daniel Crimmins, who heads the Center for Leadership in Disability at Georgia State University.

“They want a career. They don’t want to go to day care for the rest of their lives,” explained D’Arcy Robb, co-coordinator of the advocacy group Employment First Georgia. “Rather than seeing them as people who need to be taken care of, we’re looking for their talents and their interests.”

Advocates say higher-education programs, like Kennesaw State’s, are integral pieces of that approach. The program, which offers non-degree certificates, serves people with disabilities including Down syndrome, cerebral palsy and autism.

“There is a lot of love here”

“It is exciting to see how people living with Trisomy 21 are empowered and stepping into the spotlight in new ways, said Paul C. Landers, president and chief executive officer of Pathfinder Village. “But we also recognize that a great number of the 7 million people living with Down syndrome, especially in developing nations, still face significant barriers and burdens as they work to achieve lives of meaning.” 

After Okun graduates in 2017, he hopes to become a reporter to “write juicy stories,” and would love to have his music, which he records on his laptop, released. He also wants to be an advocate or “guardian” for children with Down syndrome and their parents, he said.

For now, Okun is setting his sights on becoming a residential assistant at Otsego Academy next year. That would entail helping plan and organize game nights and movie showings, he said. 

“It’s meant to be that I’m here,” Okun said. “They’re my second family when I’m away from home. There is a lot of love here. And I love that feeling.”

Reynolds is a staff writer for The (Oneonta) Daily Star. Nolin is a CNHI state reporter.