Resourceful mother helps children with disabilities

Pam Sloat paces around her Mount Pleasant living room, cell phone to her ear.

"We need to know what the definition of medically complex is," she says, stopping at a rocking chair to fold laundry.

Across the room, 6-year-old Pattison Julia, "PJ," sits in her wheelchair, occasionally emitting a sound somewhere between a laugh and cry. Sloat also tends to her as she passes by, swiping the youngster's hair out of her face.

Sloat, 38, is talking to a government spokesman, trying to make sure that budget cuts do not take benefits away from PJ and others like her. Before hanging up, she mentions contacting state legislators to make sure they understand the situation, too.

She is affable but persistent.

That has always been her way, but even more so since the birth of her middle daughter.

"I keep going on down the line till I get what I need," she says. "My biggest pet peeve is someone saying, 'I don't know,' and leaving it at that. It's OK to say, 'I don't know, but I'll find out," but not just, 'I don't know.' "

That persistence paid off in June when the Charleston County School Board approved Pattison's Academy for Comprehensive Education, a charter school to serve 30 profoundly disabled students between kindergarten and the eighth grade.

That was the final hurdle to make the school a reality for the 2010 school year.

With the school becoming a reality, Sloat now is concerned that state and federal budget cuts will affect PJ's quality of life at home. It could mean the family no longer can afford a feeding pump, diapers or in-home nursing care.

"We could be looking at losing our house" to afford the necessities to care for PJ, she says.

PJ's nurse not only has made "a significant difference in what PJ has been able to accomplish," but also allows Sloat to work outside the home, especially necessary since her husband, Mark, lost his government contract job earlier this year.

"We are scraping by," Sloat says. "It's tight, to say the least. We make sure we have what we need for PJ. We've always been worried about that. A lot of people don't realize the costs involved. Even PJ's toys are more expensive. We're going to need a van with lifts. We just renovated a bathroom so we have a roll-in shower."

The unfinished bathroom renovation was started with $30,000 in winnings from a 10th anniversary trip to Las Vegas two years ago, which also let them afford a special beach wheelchair. Money ran out before the renovation was complete.

As much as Sloat concentrates on PJ's needs, she also is very cognizant of the fact that she has two other daughters: Amelia, now 8, and Mariana, 2.

"Pattison's Academy is not just for PJ," she says. "It's not just for children with disabilities, but for the other children in the family, too, so they can go to ballet or gymnastics and not have to spend their afternoons running from doctor's office to doctor's office."

The Sloats don't want to leave PJ out of family activities because it's more convenient to do so, but they also don't want to hold back their other daughters because they have a special-needs sister.

"We can't take the others to the beach or the pool and not PJ," she says. "But PJ does take up a lot of time, so I have to be careful."

A perfect plan

After meeting when both worked at local nonprofit software company Blackbaud, the Sloats married in 1997 and settled into a house in Mount Pleasant to start their family.

They planned to have two children close together, and Sloat would stay home until they were school age.

First came Amelia on July 8, 2001, and 19 months later, PJ.

But in the months that followed PJ's birth, the Sloats felt that something was not right. When she failed to meet developmental milestones, they took her from specialist to specialist.

Eventually, they discovered that sometime during the pregnancy, Sloat had contracted cytomegalovirus or CMV, a virus found in body fluids and most commonly spread through person-to-person contact.

Many people with CMV have no symptoms, but others may develop a fever, sore throat, fatigue or swollen glands, according to the Centers for Disease Control and Prevention. A third of women who are infected during pregnancy pass the virus to their babies, making it the most common virus transmitted to unborn babies.

According to the CDC, each year in the United States, about 1 in 750 children are born with or develop disabilities as a result of CMV. That can include hearing loss, vision loss, mental disability or problems with the liver, spleen or lungs.

PJ is among them. She has a brain abnormality, hearing and vision loss and spastic quadriplegia, meaning she can't move her limbs with purpose. Doctors say she is on the developmental level of about a 3-month-old. Sloat thinks tests that gauge her development don't give an accurate measurement, but her guess would be that PJ is at a 6-month level.

"It's a fine line that we walk with that," she says. "We don't want to limit her experience. We hope for the best but prepare for the worst."

Pattison's Academy

As Sloat researched the options for her daughter, she could not find a school that offered the therapy and education she felt PJ needed.

Instead, she set out to open one.

"Mark and I are not rich, but we are resourceful," she says.

She started in 2006 with a summer camp that offered therapy, education and fun to help her understand the logistics of the population the school would serve. It was so successful that potential campers had to be turned away.

In June, the Charleston County School Board approved Pattison's Academy to open as a charter school. It will grow each year until it enrolls about 70 students. Sloat hopes to reach out to autistic families in the future.

In the meantime, the school needs a home.

"This means business," Sloat says of the district's backing. "It's now on our shoulders. We're not waiting for the school board any more. Now it's up to us. We are starting with nothing."

Seeing the school open does not mean Sloat's work is done.

"It's one step down," she says. "This is by no means the end of the road. My next big push will be working on long-term care. Most of my families aren't afraid of their kids dying. They are afraid of dying before their kids because then who will take care of them?"

It's not the life she envisioned, but it's the life she was dealt.

"Mark and I are nothing if not flexible," she says.

Brenda Rindge can be reached at 937-5713.