VALPARAISO | Marcie Reisinger started her special education at Vale Day School in 1967. At that time, 5-year-old Marcie attended classes with teacher Lorrie Woycik at Vale Day School in Valparaiso. When special education became law and SELF School was built, she attended classes there. The youngest of three children, Marcie had a difficult birth, and was delayed with most of her developmental milestones. Having two other children, Marcie’s parents Pat and Bob knew he was not progressing at the same rate as their other children.
As early as six weeks old, Marcie’s parents noticed that she had tremors in her arms and legs on occasion, and at one year old, Marcie had her first major seizure. Eventually she was diagnosed with Lennox-Gastaut Syndrome (LGS), a very rare and severe form of childhood-onset epilepsy which affects about 4% of all children with epilepsy. LGS usually lasts into adulthood, and is characterized by frequent seizures of multiple types, a resistance to medication, disturbances in behavior, and moderate to severe intellectual disabilities.
There are several potential causes of LGS, which include brain malformations, lack of oxygen during birth, severe head injury, central nervous system infection, and heredity. In 30-35 percent of cases, no cause can be found. LGS is a progressive disease with no cure, and the severity of the disease varies from person to person.
At the age of 19, Marcie’s seizures became so severe, and her need for assistance became so great, her parents made the difficult decision to place Marcie in a nursing home.
“It was a terribly difficult transition for all of us,” shares Pat.
Eventually the nursing home staff developed a routine for Marcie, and she lived in a nursing home for the next 30 years of her life. One of her parents visited Marcie every day for the next 30 years. The staff and residents came to love Marcie as their own, and Marcie and her parents developed many friendships during those years.
While she lived in the nursing home, Marcie continued to attend Opportunity Enterprises. While she worked in OutSource Solutions for awhile, eventually Marcie began attending the Daily Living Skills program, a curriculum-based program for adults with severe disabilities. Through that program, Marcie has been able to work on basic daily living skills, as well as socialization and communication skills.
While her days were enriched, Marcie’s living situation was less than ideal. Even with the loving care she received at the nursing home, the institutional setting had its limitations, and Pat and Bob continued to hope that someday Marcie could live in a more home-like setting which would also provide the care she needed.
Their dreams were realized when a wheelchair accessible apartment became available through OE’s Supported Living Program, and Marcie was finally able to move in with her two roommates in March of 2012. Since moving out of the nursing home, Marcie has thrived, and is regaining skills she lost years ago.
“They did the best they could, but the staff at the nursing home couldn’t provide individualized care for Marcie. They didn’t give her choices about what she did with her time because they couldn’t,” shares Bob. “Now that she’s in her apartment, she is becoming more independent, and doing things I haven’t seen her do in a long time.”
“(Daily Living Skills Manager) Lisa Barrios says she is seeing a lot of progress since Marcie has moved into her apartment,” shares Pat, “I’ll never forget the first day we went to visit Marcie in her new place. She was sitting at the table feeding herself dinner, which she hadn’t done in years. Now Lisa has gotten her special plates, mats, and silverware, and Marcie has started feeding herself lunch while she’s at Daily Living Skills, too.”
“Marcie has made such amazing progress in such a short time,” shares Barrios. “The progress she’s made since her move into her apartment is inspirational.”
Marcie’s parents have always visited Marcie frequently, and now that she’s regaining so many skills, her dad loves to get her moving as much as he can when he’s with her.
“Marcie loves any kind of physical activity. She can do stand ups and sit ups with assistance. She loves to play catch with me, and is starting to wheel herself around in her wheelchair,” shares Bob. “She’s also starting to talk more. I think she just gave up talking at the nursing home because no one really listened to her. Now that people are listening again, she’s started saying more.”
Lisa Barrios and her Daily Living Skills staff are looking forward to continuing to help Marcie regain skills she once had, and learn new ones, and they are hoping to get some special equipment for Marcie to use once they move into their new location at OE Lakeside later this summer.
“Lisa told me recently she wants to buy an adaptive bike that Marcie can ride,” said Pat. “I said ‘You’re going to do WHAT?’ But if Lisa thinks Marcie can do it, I bet she will.”
Throughout Marcie’s life, the Reisingers have been in contact with lots of different organizations, and have always been impressed with OE and its ability to attract and retain good staff.
“OE is one of the better organizations I’ve been around,” shares Bob. “It’s amazing how OE is able to do the things it does despite funding limitations. I see great dedication and loyalty from the staff who care for the clients – they are special people.”
Now that Marcie is enjoying her days at OE and living in an apartment, her parents are content, knowing she’s happy, her seizures are well monitored, and help is always available for her when needed. She is gaining new skills and regaining old ones in this supportive environment.
“We just take it day by day,” says Pat. “You never know what tomorrow will bring, but today things are good.”
For more information about the Daily Living Skills Program at OE, contact program manager Lisa Barrios at (219) 464-9621, ext. 288. For information on the agency’s Supported Living Program, contact Director Stacie Brown, (219) 464-9621, ext. 209.
Since 1967, OE has been a non-profit organization which works to maximize self-sufficiency and enrich the quality of life for individuals with disabilities. For more information, visit www.oppent.org.