Disabled Kids Push Parents' Limits
[The incredible strains of caring for chronically ill children often
are hidden from society and even other family members and can lead parents
to give up their kids. By Julie Deardorff, Michele K. Mellor, Chicago
Tribune. January 10, 2000 paper.]
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."
Sometimes Walker thinks she was abandoned by her mother, who gave
custody to Walker's grandparents, because she was too much trouble. Other
times, her writing shows, she feels like she must have done something wrong.
What generally happens to parents of a severely disabled child,
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
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 was
charged with abandoning their only child the day after Christmas.
In what has been described as a desperate cry for help but others say
was shocking negligence, 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 has cerebral
palsy, a group of chronic conditions affecting body movement and muscle
coordination. He breathes through a tube and uses a wheelchair.
The Kelsos subsequently were 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 across 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 also has stirred 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. It's very common (to
consider abandoning) in the early stages. But there comes a time you accept
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."
No reliable figures are kept on the number of abandoned children and
the definition is not limited to the tragic bundles left on church steps or
in trash bins. Many are newborns who are simply left at the hospital by
young, single mothers.
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
"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 their needs change dramatically.
An important resource for parents is the Rehabilitation Institute of
Chicago, which offers a wide range of services from aquatic therapy to a
legal clinic. The institute has inpatient and outpatient programs,
evaluation and testing services, supplemental programs such as driver
rehabilitation and peer and professional support services.
"Part of the treatment is to make sure both the patients and the
family are comfortable with the new challenges and to get them ready to go
home," said Kathleen Christopher, marketing director of the institute.
Ellen Baren used every facility and resource she could find, from the
Rehabilitation Institute to Respite Care, 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
couldn't 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."
The United Cerebral Palsy Association serves children and adults with
all types of disabilities, not just cerebral palsy. Its services include
information, training, early intervention programs, therapy, independent
living and work training and family support such as a "Respitality Program."
Tom and Laura Archambeau of Lake in the Hills, who have two autistic
children, daughter Lexi, 4, and son Josh, 2, recently took advantage of the
Northwest Illinois Respitality Program and decompressed for two days at the
Rosebud Bed and Breakfast in Galena. The program serves 10 Illinois counties
"It's really easy to forget you're a couple when you're in a situation
like ours," said Laura Archambeau. "It (respite) was somebody telling you
it's OK to take a break. We're coping, so they (friends and family) think
everything's OK. They don't realize how intense it can get."
Those who do realize the severe demands are more likely to understand
why the Kelsos may have abandoned their son.
Baren said her life was "incredibly challenging and stressful," when
her son was alive. "I can absolutely understand those parents (the Kelsos)
wanting to do it," Baren added. "Whether I could have (abandoned my son), I
don't know, but believe me, it crossed my mind.
"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 that hearing stories about children being abandoned make 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
"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?"
Why I Do Not Hate The Kelsoes, Salon Magazine
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