Program director nurtures severely handicapped children
Eva HunterThe upstairs rooms in the Providence Child Center are full of light, and cribs are gaily decorated with mobiles, colored throws and plush stuffed animals.
Ethelyn Pankratz, executive director, pauses by the crib of a six-month-old baby and smoothes the hair on the little girl's forehead. 'How are you today, sweetheart?' she asks.
The baby was born with encephalitis - a condition wherein the brain has formed outside the skull - in this case, a condition so severe that it could not be corrected surgically. In need of 24-hour skilled nursing care, the infant was placed in Providence Child Center's program for severely medically handicapped children. Her life expectancy was only a few months; she already has lived twice that long.
There are 54 children, from three months to 10 years old, in Providence's severely medically handicapped program. Thirteen are here because of severe birth trauma. Six children are here because of accidents, such as nearly drowning or fire, that left them not functioning. Twenty-six children are handicapped by genetic disorders.
And Pankratz knows every child.
Her whole life has been, she says, a preparation for what she is doing now. The mother of four children, now ages 21 to 30, Pankratz grew up in Tennessee and did undergraduate work in English at Maryville College there. But a position at an experimental preschool at the University of Pittsburgh Medical School directed her career for the next 20 years.
Fred Rogers, a Presbyterian minister famous for the children's television show, Mr. Rogers' Neighborhood, established the preschool with the requirement that it represent the racial and economic diversity of children in the neighborhood it drew from.
In the Pittsburgh neighborhood surrounding the university in those days, that meant black, Oriental and white children from working-class and university families.
'I can't imagine having better tutoring in how to understand children than from Fred Rogers,' Pankratz says.
'The message - whether it was to staff or to the children - was 'I like you as you are' . . . . That's what I've tried to do with children ever since.'
When, in the early 1970s, her husband joined the faculty of the Oregon Health Sciences University, Pankratz and her family came to Portland.
She worked in a preschool program integrating normal children with children with disabilities. She went to work with the Multnomah County Association of Retarded Citizens, beginning in a staff position and finishing as its executive director.
Pankratz became executive director of Providence Child Center in 1989. She appreciated the program's unusual mix of severely handicapped, developmentally delayed and 'normal' children.
It is a natural extension of the helping mission begun by Mother Joseph in the 1800s; Providence Child Center is one of the entities of the Sisters of Providence Corp.
The preschool offers both education for developmentally delayed preschoolers and a Montessori preschool for 'normal' children.
The extraordinary thing, Pankratz says, is that every day the developmentally delayed preschoolers spend part of their time with the Montessori preschoolers. And both groups have grown in sensitivity, she says.
But most of the severely handicapped children on the second floor will not live to adolescence.
Pankratz says that Providence's program is the only facility of its kind providing services to such severely medically handicapped infants and young children.
Providence Child Center is licensed to care for children only up to age 10. After 10, they go into adult foster homes. There is no facility in the state, she says, that specializes in care for these handicapped adolescents.
But the biggest challenge, Pankratz says, is not in finding appropriate placements for these children, but in keeping the children in their own homes.
But there are problems. The care these children require is overwhelming for most families. They may have seizure disorders that require constant supervision. They may need to be turned in their beds every two hours. For the family trying to cope on its own, it is an endless, tiring, thankless job.
Pankratz says that the trend is to develop institutional backup systems for the family that provide appropriate respite - time out for the primary caretakers. And Providence Child Center would like to be at the forefront of those developing and offering the support systems that would allow even severely handicapped children to remain at home with their families.
Pankratz says that this is the focus of a process of strategic planning that the facility is about to begin.
Meanwhile, there are daily reminders of why she is here. She sees a frail little girl, who has lived months beyond medical predictions, look up and give Pankratz her first smile.
She hears a mother talk about how wonderful it was to take her severely handicapped little boy home over Christmas and the joys of waking up and knowing he was there with her.
At these times, Pankratz knows why this struggle is worth continuing day by day.