September 17, 2015

“The Need is Great, The Reward is Greater” by Diane M. McCullom

Recently published in Foster Focus Magazine Volume 5, Issue 3.

Sherona, Ronnie, and MichaelWhile work takes up a huge part of our lives, you wouldn’t expect to meet your future family there—unless you’re the Pavlicek family of Star Harbor, Texas.

A pediatric nurse for Epic in Tyler, Deborah Pavlicek, first met her future family five years ago when she was taking care of two brothers with special needs who lived in a foster home. Their infectious smiles, coupled with their ability to love unconditionally won her over, and when the foster family was ready to retire from their foster duties, Deborah quickly said “I’ll take these kids!”

Deborah and her husband, David, arranged for a weekend respite with the children—a chance for them to take on the role of foster parents. Once again, the boys worked their magic, this time charming David.

That visit set into motion the six-month fostering process for the Pavliceks. Sadly, one of the brothers passed away during that time. But his brother, a happy 10-year-old boy with quadriplegia, found his new home.  “I felt like one of my own had come home,” Deborah said.

Flash forward to today and the Pavliceks now have four foster children with special needs ranging from a seizure disorder to autism; one healthy foster child; and an adopted child, Michael, who requires feedings through a G-button, among other special needs. While Michael has already found his permanent home with the Pavliceks, the couple is hard at work trying to secure adoption for the other five foster children.

“After our first child came to live with us, our placement agency called and described a child in desperate need, and we just said ‘yes,’” Deborah said. “And we kept saying ‘yes’ every time they called. It’s hard to turn a child away when you hear their stories.”

As you might imagine, caring for the children is a full-time job, and even though David is retired, the family relies on Epic for a long list of services. For starters: G-button feedings, wound care, catheterizations, chest percussive therapy, and seizure monitoring and intervention. That boils down to three nurses in their home five days each week and one nurse required daily.

“Logistically, there are times we probably should have said ‘no’ to taking on more kids,” Deborah said. “But since we’ve had so much help from Epic, taking care of them hasn’t been a problem.”  Maybe that’s because the nurses at Epic seem to attach to the children and their stories, caring for them as they would their own children.

Take Sherona Ray, who has been a nurse at Epic for six years and has been caring for the Pavlicek family’s children with special needs for about a year now. “Progress is wonderful to see,” Sherona said. “It’s almost like teaching a baby to walk and talk. You get to see the work that you put into these kids and it’s so exciting to see the results. Once I determine how to best communicate with each kid, it’s like I have a special bond with them and they trust me and know that I understand them.”

Like the bond she has with the Pavliceks’ adopted son, five-year-old Michael, whose background we can share since he’s no longer in the foster system.

Michael was born to a drug-addicted mother and diagnosed with fetal alcohol syndrome, severe lung disease, aspiration pneumonia, dumping syndrome, and chronic vomiting. The first time the Pavliceks met him, he was seven-month old weighing only eight pounds.

“The best Valentine’s Day gift I ever received was when Michael came to live with us on February 14, 2011,”Deborah said. And though he didn’t have the typical milestones of kids his age, he was always smiling and happy, a trait that Deborah says isn’t normal for babies born to drug-addicted mothers. Occupational and speech therapy began immediately and the results were astonishing. “They said he wouldn’t sit up, but he did,” Deborah said. “They said he wouldn’t crawl, but he did. Our orthopedist said he might not walk, and now he’s running everywhere.”

And while he’s made significant progress, Michael still needs plenty of help. Due to chronic vomiting, Michael underwent a Nissen fundoplication surgery which closed his stomach to prevent the vomiting. As a result, he is now fed formula through a G-tube every 45 to 60 minutes. Also, cerebral palsy in his hands and legs still affects his writing and walking skills.  But that doesn’t stop this determined youngster. Nearly two years ago, the Pavliceks took Michael to public school for a learning aptitude test. On the way to the testing room, Michael asked everyone their name, and two hours later, he told everyone goodbye—by name. As for the test results? At three-and-a-half years old, he was reading on a second grade level.

“In some ways, he’s two years old,” Deborah said. “But in other ways, he’s 12 years old. Michael has an amazing memory and can tell you about all kinds of things, like steam engines and how they work. We just want to get him to a place where all the parts of his personality are the same age.”

That means helping Michael better remember lessons, like how to ask for an adult before going outside or how he’s not allowed to fill the fish tank with his toys. Currently, he operates without thought to consequences, which means whatever comes to his mind, he does it.  “Even at the worst times, when the fish tank is full of toys, I feel so honored and blessed because he’s so special,” Deborah said. “He’s an amazing person and is going to be an amazing adult.”

These days, Michael only requires a nurse during the school year due to his feeding requirements, but much care has been given to ensure he functions as normally as possible, with the nurse out of sight but within hearing distance.  “Attending school is very important to all foster kids, including those with special needs,” Sherona said. “Waking up at the same time, getting ready for school, and being around other kids all help to create a sense of routine and normalcy that the children need.”

But if you ask Deborah what a normal day looks like for her family, she’ll probably laugh.  “I’m not sure there is such a thing as a normal day around here,” she said with a smile. Every month, the Pavliceks travel a few thousand miles for doctor’s appointments for their children. And it’s not just one doctor for each child; some of the children require multiple doctors for various disorders.

Still, the Pavliceks manage to find ways to kick back as a family. If it’s a good day and no one is sick, Deborah says they may go for a walk, play on the wheelchair swing or sit on their deck overlooking the lake while one of the children plays in the water and squirts everyone with a hose. Medications are usually done by 8 a.m. when the nurses arrive, and those same nurses stay until about 6 p.m.

“I don’t know what we’d do without our nurses,” Deborah said. “Those 10 hours that they’re here during the day make it so that we can get through the other 14 hours of the day.”

By this point, you might wonder how Deborah manages to work. (Did I mention Deborah and David also have two adult children and four grandkids?) Luckily, Epic has set up her schedule to work opposite another nurse who also has foster children, so she works Tuesdays and Thursdays in her patients’ homes while her counterpart covers the other days.

It may sound like a hectic life, and while Deborah wouldn’t argue that, she also points out that there is plenty of help out there as well. For example, foster parents of kids with special needs can pursue an enhanced subsidy—extra income to help cover living expenses, much like a social security check that other foster parents receive.  “There are a lot of things available to help us be better parents for these children, and you might not know it’s there,” Deborah said. “Through the Medically Dependent Children Program (MDCP), you can get things like bathroom enhancements and wheelchair van modifications. Just like any kid, they’re going to grow and need different items for their care, so you should take advantage of these benefits.”

Also worth noting: Navigate Life Texas is an excellent resource for families with kids that have special needs, with information ranging from insurance and financial help to how to best approach a child’s transition into adulthood. “Nothing we’ve done since our first child has been according to plan,” Deborah said, laughing. “But these kids—they’re all our kids, and they’re all amazing people.”

And the parents? They’re pretty amazing too.