Heartspring Outcomes

With traditional family lines blurred, parents are committed to children with disabilities

P.J. and her husband Mack live in a small town in western Kansas. As most grandparents do, they doted on their grandchildren. But in February 2004, after a series of incidents, they legally adopted three of their grandchildren, realigning their familial roles and becoming mom and dad.

Becoming a parent all over again after raising your children is a large task in itself, but when all three of your “new” children have disabilities, the difficulty of that task is multiplied. Jefferson is eight and the oldest sibling. Reed, six, has the most profound disabilities including cerebral palsy, vision impairment, chronic lung disease and moderate to severe mental retardation. Sweet Mackenzie is four and was only seven months old when she came to live with her “parents”.

Due to the severity of Reed’s disabilities (Jefferson and Mackenzie were diagnosed with mild special needs), P.J. sought early intervention for him. Because of limited access to doctors and specialists, and frustrated by varying evaluations, P.J. looked to developmental pediatrician Dr. Valarie Kerschen who suggested she make an appointment with psychologist Dr. Wayne Piersel at Heartspring Pediatric Services.

Beginning in October 2006, P.J. was driving over six hours to meet with Dr. Wayne twice a month. Recently those trips have decreased to every six weeks. Her main goal is to educate herself while being an advocate for her children. “With different disabilities for each child, it can be overwhelming and I certainly do not have all the answers,” said P.J. Being able to sit down with Dr. Wayne and discuss best practices has given her peace of mind. “I have affirmation that I’m doing the right thing,” she said.

In July 2007, the funding P.J. relied on to receive services at Heartspring was no longer viable. She was devastated. It was at that time Dr. Wayne suggested that services for P.J. and her family continue at no cost. With tears in her eyes P.J. said, “My cup runneth over.” She added, “There is no one that could convince me that the people at Heartspring are here for the money.”

Impressed by P.J.’s commitment, Dr. Wayne didn’t think twice about going above and beyond for her family. “When I read about all of Reed’s impairments, it made me take a deep breath – this is a parent really asking for help with her kids. She grabs your heart,” he said.

A program has been put in place for P.J. to work with each of her children. Now the focus is on maintaining those programs. “She’s a great parent expert,” said Dr. Wayne. “She’s not looking for sympathy or a magic cure. She’s just looking for things to help her kids.”

P.J. has been instrumental in organizing a parent workshop in western Kansas for parents of children with disabilities. Dr. Wayne and speech-language pathologist Lindsay Randle from Heartspring will travel to present on a variety of topics. “Before I had resources like Heartspring, I felt like I was reinventing the wheel…I thought that wasn’t fair,” said P.J.

When asked if P.J. could turn back time, would she make the same decisions? “Absolutely,” she said. “In a heartbeat.”

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