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I can't hate the Kelsos
At least they took their disabled child to the hospital instead of the nearest bridge.

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By Anne Mitchell

Jan. 4, 2000 | "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, enough said.

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 either.

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.
salon.com | Jan. 4, 2000

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