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home : features : senior living December 14, 2018


11/30/2018
Senior parents discuss continuous caring for special-needs children
Janice Brandon and her son, Chris, take a photo during a trip to Orlando’s Disney World. The Brandons admit that having a special-needs adult son keeps travel stateside – but the blessings Chris has brought the family are invaluable.  Photo courtesy of the Brandon family
Janice Brandon and her son, Chris, take a photo during a trip to Orlando’s Disney World. The Brandons admit that having a special-needs adult son keeps travel stateside – but the blessings Chris has brought the family are invaluable.  Photo courtesy of the Brandon family
Joyce Chmielenski and her daughter, Donna, enjoy a dinner at a 2014 Holy Innocents Society gathering. “She keeps us grounded,” Chmielenski says of her daughter. “The way she looks at life is so clear.”  Mary Stadnyk photo

Joyce Chmielenski and her daughter, Donna, enjoy a dinner at a 2014 Holy Innocents Society gathering. “She keeps us grounded,” Chmielenski says of her daughter. “The way she looks at life is so clear.”  Mary Stadnyk photo

Did You Know?

* Thirty-four percent of caregivers are 65 and older; 14 percent of care recipients are ages 18-49, according to the National Alliance for Caregiving and AARP (2015)

* According to the Centers for Disease Control, one in six children has one or more developmental disabilities or developmental delays. Developmental disabilities are defined as “a group of conditions due to impairment in physical, learning, language or behavior areas,” which begin during development and may affect daily functioning throughout a person’s lifetime. Autism is one disability whose numbers are increasing exponentially.

* Based on national statistics and how they apply to the Catholic Church, about 20 percent of those attending have some kind of disability, according to the National Catholic Partnership on Disability, Washington, D.C.



By Lois Rogers, Correspondent

Barbara Malanak is fond of pointing out that everyone walks a different path in life.

Early on, Malanak, who will turn 70 in February, and her husband, Ed, 66, settled on a path that would lead to a house full of children.

“I adopted my children. I chose my life,” Malanak said, reflecting on the family she and her husband clearly cherish. Since they wed 42 years ago, the Malanaks’ path has led them to adopt 11 children – now between the ages of 38 and 10 – with disabilities including medical issues, autism and learning challenges.

These days, six reside with their parents and either work or attend school. Sharing life with them involves a lot of work, Malanak said. But the couple wouldn’t have it any other way.

Members of Sacred Heart Parish, Mount Holly, the Malanaks describe their path as connected to faith. “Some days are harder than others,” Barbara Malanak said. “I will be like 50 times saying, ‘God give me strength!’”

Like other senior parents who continue to care for their adult children with disabilities, Malanak says every day takes planning.

“Ed wants to be their friend. I’m the disciplinarian. Everyone has a job,” she said. “Ed makes the lunch sandwiches in the morning before school and feeds the pets. We have kids leaving in shifts from 6:15 to 9 a.m. Everyone has chores. The hardest part is when you are trying to juggle doctor’s appointments into the mix.”

With everyone in the house either working or in school, Malanak is able to have a job in a Gloucester Township public school, where the special-needs program makes her feel at home.

The best part of life, she said, is when her children accomplish something such as tying their shoes or learning a new subject in school.

“Seeing them jump the hurdles is what matters,” she said.

Abiding Love

The well-being of their special-needs children are top priority for Joyce and Joseph Chmielenski, 74 and 78 respectively, and John and Janice Brandon, too.

The Chmielenskis are members of Jesus the Good Shepherd Parish, Beverly, and Joyce Chmielenski has been the leader of the Holy Innocents Society’s Center for Learning in Burlington County for many years. The Brandons – John, 67, and Janice, 65 – are members of St. Mary Parish, Middletown, where John Brandon helped found a support group for parents of children with disabilities.

The Chmielenskis care for their daughter Donna, 46. Over time, all three have coped with Donna’s multiple physical and intellectual challenges. Not long ago, her parents opted to downsize from a bigger house to a smaller one in a senior development. There, Donna takes pleasure in helping with chores including doing the wash.

“She’s pretty self-sufficient. She wants to do things and do them on her own,” Joyce Chmielenski said.

The trio makes good use of support programs that offer Donna outings and sociability with her peers and respite for her parents.

“That’s what I need. I know it’s what a lot of seniors need,” Chmielenski said. “When the kids are young, it is easy to take them around wherever they want to go, but as we age, these programs give them a chance to go out and be with their peers” while parents get some time to themselves.

Donna, who enjoys outings to Holy Innocents and Mass, sets a good example, her mother said.

“She keeps us grounded. The way she looks at life is so clear. There’s no prejudice or hate. She takes each day as it comes.”

‘Gift from God’

The same is true for Christopher Brandon, 32, who also has multiple physical and intellectual disabilities, said John Brandon, who is retired from a career in the oil industry.

The Brandons have long since put aside thoughts of travel to distant corners of the globe and concentrate on visits to places closer to home – Disney World, Niagara Falls, the vacation area around Pigeon Forge, Tenn. – that appeal to Chris.

Chris was adopted as a premature baby when he was just two days old, and Brandon recalls how he was cautioned that the special-needs child would bring the couple “nothing but heartache and pain. But he has been the best thing in our family.”

“My father urged us to adopt him, calling him a ‘Gift from God,’” said Brandon, who shared that three of his own siblings live with cerebral palsy. “Having Christopher wasn’t anything out of the ordinary for us. We have hit bumps in the road, but he has a smile no matter how bad things are. When Chris smiles, you don’t feel so bad.”

“He made our faith stronger and my wife and daughter, Amy, wonder if it wasn’t for Chris, would we be who we are now?” he continued.

Brandon noted that at 29, Amy has two masters degrees and teaches special-needs children in Carteret. Brandon continues to run the Knights of Columbus support group for special-needs children based in St. Mary Parish.

“We do an awful lot of things because of Chris,” he said.

 

 

 

 

 






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