"Abandoned Boy Case Stuns Advocates."
This Associated Press headline, crisp and gripping to the average
reader, is a joke to any honest parent of a disabled child. Try "Parents
at Brink of Collapse Don't Abandon Boy" for a real shockerooni. As the
parent of two disabled children myself, I often visualize headlines like
"Mom Drives Self and Two Boys Off Bridge" -- and the only shocking part
is that it hasn't come true.
News accounts of Richard and Dawn Kelso leaving their 10-year-old son,
Steven, at a Delaware hospital the day after Christmas with his toys,
medical supplies and a note saying they could no longer care for the
boy, dwell on the fact that the Kelso family lived in a $200,000 house
and drove BMWs. Clearly, these selfish, privileged bastards ... Well,
No, NOT enough said. I understand exactly how a desperate parent could
do what Dawn and Richard Kelso did. The part that makes them heroic, in
my book, is that they took Steven somewhere where people are trained to
give him the care he needs, instead of loading him into one of those
spiffy BMWs and heading for a bridge abutment.
And the sanctimonious "professionals" who are anxious to point out that
respite services are available. How defensive do they sound? Yikes, we'd
better let folks know we had services available! But of course we have
budget problems, and shortages of trained labor, and income guidelines
that clients have to meet. But we might have done something to help
them, we might have if they'd known where to look, begged a lot, and not
had the resources to pay for (nonexistent) private care.
"It's very disturbing to think a parent would get to the stress level
that would cause them to abandon a child," said Diane Carey, executive
director of the Chester County chapter of Association for Retarded
Citizens (ARC), an advocacy group for the retarded. Bullshit. It's very
disturbing to think that someone who runs an agency like ARC would say
something that naive about the families they are supposed to be helping.
"There are a ton of services out there for parents to access to get
help for that kind of thing," said Kevin Casey, executive director of
Pennsylvania Protection and Advocacy. "It is sometimes difficult and
very bureaucratic to get that help, but if you keep pushing for it, you
can get it." Gee, maybe the Kelsos should have taken time off from
bathing, feeding and changing Steven's diapers and clearing his
ventilator to "push" to get services for "that kind of thing."
Am I making my point here?
Let me just think back to a few of the days I had when my younger son
was 10 years old -- and nonverbal, not toilet trained, nearly five and a
half feet tall and completely mobile. I'd try to stay awake when he was
awake, but there were moments when I'd collapse from exhaustion and wake
up to find that he'd smeared feces all over the stairway from his
bedroom to the kitchen, and then helped himself to a pound of cheddar
cheese and some (raw) hamburger I'd been thawing in the fridge. Then he
left the refrigerator door open while he went to sit on the living room
carpet to smear shit and cheese onto the television screen while he
pointed to Bert and Ernie. Was there an agency on call to help me clean
up that mess?
I finally found an agency to watch him after school so that I could get
a job -- and they called me at work at least once a day to complain that
he'd scratched a volunteer or taken off his clothes on a field trip and
wouldn't put them back on.
Dawn Kelso has a husband to help her with Steven -- I had that with my
two sons just until they were diagnosed with Fragile X, a
genetic disorder that causes retardation and autistic behavior. Then I
was on my own. Did my family help? I suppose the stress was too much for
them too -- but no one wrote headlines in the paper like "Grandparents
Visit 'Normal' Grandchildren With Disproportionate Frequency."
One thing I had that the Kelsos didn't was helpful neighbors. I remember
one morning when Andy found a loosely sealed can of paint and painted
the floor and woodwork in the kitchen while I extravagantly sat on the
toilet a moment too long. My neighbors answered my tearful calls at 8
a.m. on a Saturday to help clean up the mess. They helped me search for
him innumerable times when he "escaped" -- usually when I was unloading
groceries from the car or going to the bathroom (again!) and he'd
disappear out the front gate.
"What caused the meltdown?" asked Stephen Sheridan, executive director
of the United Cerebral Palsy Association of Philadelphia. "Why couldn't
they cope anymore?"
Caring for a disabled child is a "lifelong responsibility," said
Sheridan. "It doesn't go away. It's early in the morning until late at
night every day of the week, every week of the year. If you do that
morning and night every day of your life, it could be awfully
draining," he said.
It could? Shocking.
Two years ago, when a Kentucky man who'd recently been widowed shot
himself and his 40-year-old disabled son when the son was put on a
years-long waiting list for residential placement, that didn't shock me
Twenty years ago, children with severe disabilities were
institutionalized. That's no longer the case. The deinstitutionalization
effort has put the responsibility for caring for disabled children on
their parents. And getting help is damn near impossible. There is no
government help, private agencies are short-staffed nightmares and
school is a battleground.
The Kelsos were charged with misdemeanor counts of child abandonment and
conspiracy. If I were them, I'd stay in jail, go on a hunger strike and
kick and scream until people start to notice. The world hasn't become a
better place for the most severely, profoundly handicapped kids, or for
their parents either. We can get in your face and make some noise, or we
can keep making acts of quiet desperation like the Kelsos did. I hope
you're so fucking shocked that you start to pay attention.