A hardaspect for a parent having a child with a disability at first is feeling alone and wondering what to do.
Jenny Hansen of Chesterton encountered that devastating situation 19 years ago when her son, Luke, was diagnosed three months after birth with a rare condition.
Luke Hansen has three extra X chromosomes, making him one of only 150 known cases in the world. He has learning disabilities.
“As parents of a special needs child, it’s hard. You have to fight for funding, you have to fight for resources,” Hansen said.
Hansen learned that others were passionately engaged in the same battle on behalf of their children. About a dozen parents, along with the Duneland School Corporation’s Exceptional Learning staff in 2018 organized the first disability resource fair in a small gym at Westchester Intermediate School.
That annual event has now become the Porter County Disability Resource Fair. The sixth version of the fair was held at Chesterton High School Thursday evening with about 150 people in attendance.
Ezra Burke, who is the Exceptional Learning Coordinator for the secondary level for Duneland School Corporation, remembers when he was approached by the parents who wanted to do something to make people aware of resources and enhance community connections.
“I certainly have become much more aware of all the needs that families have that I didn’t realize they have,” Burke said.
That first event had about 25 vendors. The fair has grown every year, except for the 2020 COVID-19 shutdown.
It became more than a Duneland event as it now encompasses Porter County and moved to the larger venue of the Chesterton High School cafeteria. In Porter County, there are 5,000 children in the seven school districts who have been identified with a learning disability, said Sandy Bodnar of the Porter County Education Services.
There were 51 vendors this year as the event’s scope has grown to also embrace adults with disabilities. The vendors came from as far away as Chicago, Indianapolis and a college from Wisconsin that specializes in helping those with disabilities.
In addition to agencies like Jacob’s Ladder, which provides speech and occupational services, there were attorneys and a representative from the Social Security office there to address questions.
“The big focus is really to try to provide a gamut of opportunities for families to shop around,” Burke said.
Hansen said she has noticed that more agencies and groups now approach them about coming to the fair. She said that another positive aspect is how the volunteer force comes together for the free event.
This year, Luke Hansen, who is still in the Duneland school system, sat at the front table where he greeted attendees.
One of the new vendors this year was Kyle’s Legacy, an organization founded by the family of Kyle Polhemus, a Valparaiso resident who on March 14, 2020, died at age 19 from Duchenne Muscular Dystrophy.
“We were living a normal life and then bam,” said Ben Polhemus, Kyle’s father. His son was diagnosed at age 2½ with the disease.
After Kyle’s death, Kyle’s Legacy was formed to support others with disabilities and their families as they navigate new realities. Ben Polhemus said that they draw on their experiences — the connections and love from the community — to help others.
Scott and Tonya Irwin of Valparaiso attended the fair for the first time Thursday.
Tonya Irwin, 49, uses a motorized chair to get around. She is a disabled veteran who has problems with her knees and legs, along with anxiety issues.
Scott Irwin, 52, walks with a cane because he has back issues.
They were glad they made the trip as both found it useful to meet with a representative from the Social Security office. Tonya Irwin said she also was able to connect with someone from Disabled Veterans Services.
Jim Woods is a freelance reporter for the Post-Tribune.
