By Dr. Robert Naseef, Psychologist
Families Need Help and Dignity, Not Punishment
Many people find it hard to fathom what could drive a couple like Dawn and Richard Kelso of Chester County to leave their fragile child, Steven, at a hospital the day after Christmas in 1999. I, for one, do not. The image of the boy in a wheelchair who needed a respirator to breathe jolted me as I read about it while visiting relatives in Florida. This is written for parents of children with special needs support. By all accounts, the Kelsos had loved their child dearly. They’d had round the clock nursing care in their home for years.
I wish I could be baffled. If only my son was healthy, I’d be on that side of the fence. If only he didn’t have autism. If only he could speak and read and write. And if only my boy, now twenty, didn’t have such a significant intellectual disability. Then I could be morally offended. Then I might think it a crime, with the parents deserving their mug shots in the newspaper. Instead, it seems to border on the absurd and the uncivilized to charge this couple with crimes.
Children with special healthcare needs can be wonderfully endearing and lovable. They readily evoke our compassion. At the same time, they can drain their parents to unfathomable lengths and be very difficult to live with day to day. Parents often have to beg and fight to get the services their child requires. Besides my own experience, my sources include the many families raising a child with a disability who seek my counsel as a professional psychologist.
A Grief Like No Other
Sometimes a sick baby will keep you up all night. You worry, and you check to see that your infant is still breathing. What if your child never got better? What if all the love and the best medical care in the world couldn’t change that, but your child lived? Who would you become? What if you had a child like Steven, who reportedly had up to 30 seizures in a single day?
I can tell you it’s a grief like no other. It will take you places you never wanted to go. It feels like your baby died, but the crib isn’t empty. Your dream of a healthy child would certainly shatter, the same way it does for so many parents who go through this kind of healing of broken dreams. But there’s no funeral.
You’d become absorbed caring for the sick child you love, at times more than life itself. You might advocate for children other than your own, like Dawn Kelso did. You’d love your child passionately and pray for a cure. In your dark and private moments, you might wish to be freed from the burden. You might put on a cheery face to hide your guilt and shame.
With love and support, you’d most likely survive and become a better person. Our life force is strong and resilient. Your longing for the healthy child you imagined may last a lifetime. I’ve never stopped wanting to hear the sound of my son’s voice. Yet I love him no less because of that, and perhaps more, in ways I could never have imagined.
The Price Nobody Sees
But none of this comes without a price. Your spirit undergoes a trial by fire. One father I counseled told me he hadn’t gone to synagogue for the first time in his life during the High Holy Days. When I asked why, he told me he had nothing left to atone for, since his child was chronically ill. A Christian mother told me she was no longer afraid of going to hell. She’d waited her whole life to have her only child at 43. Now, she told me, she was living her own private hell. Her daughter, who had autism, didn’t relate to her in the “normal” ways she’d expected.
What Families Need Instead of Punishment
Of course children need strong laws to protect them from abuse and neglect, and those laws must be vigilantly enforced. I don’t believe overwhelmed parents should be able to simply leave their child at a hospital. But I do believe we should take into account the mental health needs of each unique family raising a child with special needs. The Surgeon General’s 1999 report on mental health pointed us in exactly this direction, and more than two decades later, the shortage of respite care and family mental health support that families like the Kelsos ran into hasn’t gone away. Groups like the ARCH National Respite Network exist specifically to help families access relief care before they reach a breaking point, and the National Parent Helpline is available for any parent who needs someone to talk to before things feel unmanageable.
The Kelsos gave us a message about needing more and better support, including psychological services. Maybe our systems of care should be charged with neglecting families’ emotional needs, not the other way around.
Certainly the issues are many and complex. Without walking a mile in their shoes, we may never understand how hard the Kelsos’ lives had really been. Let’s hope we never find out firsthand, and let’s appreciate more deeply the healthy children we’ve been given. If you’re navigating your own version of this grief, you’re not the only father wrestling with it.
Finally, I have a message for the decision makers in this case. If as a society we truly value the life of Steven Kelso, let’s treat his parents with dignity. I think that would please Steven.
As it appeared in the Philadelphia Sunday Inquirer, January 9, 2000.
