Forum will be 7 p.m., Jan 20

By BEN KLEINE

Staff writer

Heather Vinduska wished she had a group like Parents as Advocates for Individuals with Disabilities 11 years ago when she was a young parent who had just moved to Marion from Lincoln, Neb.

Her oldest son, Vincent, was 4 years old when he was diagnosed with Fragile X syndrome.

The characteristics of Fragile X include developmental disability. At 15, Vincent is at the same cognitive level as a 4- or 5-year-old. He repeats uttered phrases and sentences with little understanding of instructions or demands. He also has attention deficit hyperactivity disorder.

Fragile X is genetic. Vinduska’s mother has 11 grandchildren, seven have Fragile X. Of Vinduska’s sister’s five children, three have Fragile X.

No matter how carefully Vinduska cared for Vincent during her pregnancy or how carefully she observed his early development, she could not have prevented the diagnosis.

“There’s an isolated, dark feeling,” Vinduska said.

“It is so true that there is an overwhelming feeling of loss, loss for that normal child you thought you had,” Vinduska wrote for X Stories, a book edited by Charles W. Luckmann and Paul S. Piper. “I didn’t know if I was crying for my own loss or for Vincent because of the obstacles I now knew he would have to face in his life.”

That is when the work began. Vinduska took it upon herself to provide the best possible conditions for Vincent, even if it meant home-schooling Vincent for several years.

It was the extra level of care that resulted in Vinduska meeting Jane Wiens of Hillsboro. Vinduska and Wiens were both unhappy with the education their children were receiving when they met more than three years ago.

Wiens’ son Sheldon, 17, suffers from Asperger’s syndrome — a form of Autism.

Sheldon is actually very intelligent. Wiens said he is a talented musician.

“He doesn’t understand what his gift really is,” she said.

She also said that he dabbles in cartography.

“He draws maps. He knows every creek, every highway,” Wiens said. “He’s like a GPS in the backseat.”

Sheldon’s biggest problems are social and emotional attachment. He struggles to communicate his feelings and desires.

Sensing that they shared a passion for helping their sons receive the best life has to offer, Wiens and Vinduska created Parents as Advocates for Individuals with Disabilities.

Although the group has been in existence for three years, it took time to build a membership of parents — they have only met three times. However, one of the reasons Vinduska and Wiens created the group was to provide a source, an ear for parents who may have just found out that their child has a mental disability.

“Connecting with other people, it’s such a relief, talking to someone who has similar trials.” Vinduska said. “As we visit, we realize that we’re similar parents. Chances are there’s another parent sharing this problem.”

Connecting to other parents is one aim of PAID, the other goal for Vinduska and Wiens addresses an upcoming trial for their sons.

Currently, Sheldon and Vincent are enrolled in the Marion County Special Education Cooperative. When students reach 21 years old, they are no longer eligible for the daily care the co-op provides. In Sheldon’s case, care beyond the co-op may be unnecessary, except to provide job opportunities. Vincent, however, must graduate to a facility for mentally disabled adults.

The options for Vinduska are to send Vincent to facilities in McPherson or Newton.

“He can’t tell me what happened at school,” Vinduska said. “Putting him on a bus and shipping him out of town scares me. If he wanders off down the street (in Marion) people would know him.”

Now, Vinduska and Wiens are attempting to start the process to bring an adult facility to Marion County. They have started conversations with Marion County leaders: Hillsboro Mayor Delores Dallke, Marion County Economic Development Director Teresa Huffman, and Hillsboro Economic Development Director Clint Seibel.

“I think it’s a great idea,” Dallke said. “Part of our population needs to be served.”

They also talked to Harvey-Marion County Community Developmental Disability Organization Director Elizabeth Schmidt.

The CDDO is charged with directing children with disabilities to the proper care facilities.

“Part of my interest was moved by a parent from PAID who really questioned whether there’s a future for their child in Marion County,” Schmidt said. “Well what do you want that future to look like? We can enrich community life for everyone.”

After visiting with Huffman, Vinduska and Wiens traveled to facilities in Harvey, McPherson, Butler, and Reno counties as a tryout for a prospective facility to move into Marion County.

“I think one of the basic things we looked at was the interaction between staff and the adults,” Wiens said. “Some places you walk in and it’s like a funeral, other places it was like a party.”

Although Vinduska and Wiens are taking all the steps they can to make an adult-care facility a reality in Marion County, they cannot move forward until they gauge the interest in the community. PAID is having a community forum to discuss the proposal of an adult facility 7 p.m. Jan. 20 in the west room of the Hillsboro city building.

“We really need to hear what’s important to families,” said Schmidt, who is also speaking at the event.

“For me, it’s driven for selfish reasons,” Vinduska said. “But, I wouldn’t do it if it was just for me.”

Time is of the essence for Wiens and Vinduska — Sheldon is eligible for care through the Marion County co-op for four more years; Vincent has six years left.