Sometimes, children's disabilities are too much for parents

NEW YORK - Tamika Walker was 2 when she was paralyzed from the neck down in a car accident. She never knew her father. She can't remember the last time she saw her mother.

For the past 24 years, her home has been a New York City hospital bed where she has been nursed around the clock. Sometimes she writes about her loneliness and feelings of abandonment by tapping on a computer keyboard with a stick in her mouth.

"I am so angry because my mother made a promise to me and my grandmother that she would come visit me every weekend," Walker, 26, wrote in an essay. "She never kept her promise."

What generally happens to parents of severely disabled children, experts say, is that they are emotionally and physically pushed to their limits, and burdened by the terrible truth that their child is not going to get better.

Money, education and even tireless devotion to the illness do not protect against the incredible strains of caring for chronically ill or disabled children, as illustrated last month when a Pennsylvania couple were charged with abandoning their only child the day after Christmas.

Richard and Dawn Kelso of Exton, Pa., left the 10-year-old boy at a Delaware hospital with his toys, medical supplies and a note saying they could no longer care for him. Steven Kelso, who has cerebral palsy, a group of chronic conditions affecting body movement and muscle coordination, breathes through a tube and uses a wheelchair.

The Kelsos are banned from having contact with Steven, who is in the custody of Delaware's division of family services. He remains at the Alfred I. du Pont Hospital for Children in Rockland, Del., where his parents dropped him off.

What has baffled caregivers around the country are the unusual circumstances surrounding the case: Richard Kelso was the chief executive of a successful $500 million-a-year chemical company in suburban Philadelphia and the family appeared to have the means to care for the boy. His wife served on a state advisory council for people with disabilities. For 10 years, she had coped with her son's problems.

While the case has deeply troubled advocates for the disabled across the country, it has also stirred some sympathy and raised questions about what caused the apparent meltdown.

"What people fail to realize is that when you have a child with a disability, it doesn't matter whether you have 24-hour help or not," said Dr. Alexander Obolsky, a forensic psychiatrist who teaches in Northwestern University's Medical and Law Schools. "It's a full-time job and the pleasures or joys of childhood are just not there."

Still, that time comes after walking down a long, wearying road. Obolsky said parents of disabled children go through stages similar to that of a terminal illness: denial, anger, sadness and bargaining before get to acceptance.

Nearly everyone expects a healthy child and dreams about the baby's future even before the child is born. "To learn that the child has a disability amounts to the death of the fantasy," Obolsky said. "The reality is very brutal. The child is not like everyone else. It's really a death. And nothing is worse than the death of a child for a parent."

Disabled children are abandoned at a much higher rate than healthy ones and about two-thirds of those who are abandoned are boys, according to California psychologist Aaron Kipnis, a formerly abandoned child and homeless adolescent.

"It's this thing about boys being athletic, heroic and strong. The disappointment seems to be graver around boys than girls," said Kipnis, author of "Angry Young Men: How Parents, Teachers and Educators Can Help `Bad Boys' Become Good Men."

" Part of the problem is that even the middle class really doesn't have adequate resources to deal with disabled children," Kipnis said.

While extensive support systems are available, they are fragmented and can be fraught with bureaucracy. Facilities vary from county to county in each state and health insurance may cover some equipment and procedures, but not others. As the child grows, the disability often becomes more pronounced and his or her needs change dramatically.

Ellen Baren of Chicago used every facility and resource she could find and spent six harrowing years caring for her son Leon Skowronski, who was born four months premature. Leon had a host of problems, including cerebral palsy and deafness, and he could not walk or sit up.

At one point Baren found herself asking strangers on the street to help get his wheelchair out of the car. He died in 1996 at age 6.

"Thank God we were poor enough that we qualified for Medicaid. If not, we could have easily slipped through the cracks," Baren said. "It's a Catch-22. If you're in a certain salary range, you don't qualify for free care, yet you can't afford the services you need."

Baren added that she was fortunate to live in Chicago where she could utilize the numerous support systems. "I'd hear stories about people in rural areas who couldn't get a speech therapist," she said. "There is a lot that is not being done."

Those who realize the severe demands were more likely to understand why the Kelsos may have abandoned their son.

Baren said her life was "incredible challenging and stressful," when her son was alive.

"I can absolutely understand those parents (the Kelsos) wanting to do it," Baren added.

"I miss him," she added, getting choked up. "But it's a tremendous stress taken out of my life."

But another parent of a disabled child, Brenda Bohl of Brookville, Ind., said hearing stories about children being abandoned makes her cringe. Bohl's son, Matthew, now 13, was a healthy 3-year-old when he contracted Rocky Mountain spotted fever. Now he functions at the level of a 3-month-old and has multiple physical and mental handicaps, including blindness. Doctors have not given the family hope that his condition will improve.

"Of course it can be very stressful and hard to deal with, but we have an older son and they were best friends at the time," Bohl said. "`How do you tell a kid his little brother isn't worth bringing home anymore?"