Family Issues Archives

Let's Not Abandon the Parents
By Robert Naseef, Ph.D.

Many people find it hard to fathom what could drive a couple like Dawn and Richard Kelso of Chester County to abandon their fragile child, Steven, at a hospital on the day after Christmas 1999. I for one do not. The image of the boy in a wheelchair, who needs a respirator to breath, jolted me as I read it while visiting relatives in Florida. By all accounts, the Kelsos had loved their child dearly. They have had round-the-clock nursing care in their home for years.

I wish I could be baffled. If only my son was healthy, I would 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, wasn't severely retarded. Then I could be morally offended. Then I might think it a crime with the parents deserving their mug shots in the newspaper. Quite the contrary, it seems to border on the absurd and the uncivilized to charge this couple with crimes.

 

Let's Review Some Facts

Although this is a national story, the facts were unevenly reported, even within the Pennsylvania-New Jersey-Delaware area. It is a case that has provoked intense criticism as well as compassion. Steven has had 130 major surgeries in his 120 months of life according to a family member. When his parents gave up on December 26, they took him to A.I. du Pont Hospital for Children, which had been his medical home in Delaware, where the hospital staff knew and liked Steven, who was reported to be always pleasant and cooperative.

By December 26, there had been no help for at least three days. His parents had been told recently that they would have only 50 hours of nursing care for the entire month of January. This is the result of a nationwide shortage of pediatric home-care nurses. Even though the Kelsos were widely reported to be a well-to-do family, services were not available at any price, even if you had the means to pay. Consider also that despite the massive publicity, no one has come forward to volunteer to be a foster parent. This in the Philadelphia metropolitan area, which is home to over 8,000,000.

When criminal charges were filed against Richard and Dawn Kelso, they turned themselves in. A condition of their bail was that they not attempt to visit their son in the hospital. On Friday, January 14, the Delaware judge in the case ruled that the parents could visit their child, but only under the supervision of a Pennsylvania child welfare worker. The Kelsos still face criminal charges of conspiracy and abandonment and will stand trial in March.

 

Let's Reflect on the Situation

Children with special healthcare needs can be wonderfully endearing and loveable. As our parent and professional readers know, they readily evoke our compassion. Simultaneously they can drain their parents to unfathomable lengths and be very difficult to live with from day to day.

Parents often have to beg and scream to get services their child requires. Besides my own experiences, my sources include many families who are raising a child with a disability and who seek my counsel as a professional psychologist.

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 didn'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 that it is a grief like no other. It will take you places you never wanted to go. It feels like your baby died, but the crib is not empty. Your dream of a healthy child would certainly shatter. But there would be no funeral.

You would 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. (She served on the Pennsylvania Governor's Council on Developmental Disabilities.) You would 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 would most likely survive and become a better person. Our life force is strong and resilient. Your longing for the healthy child may last your lifetime. I have 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 have never imagined.

But none of this comes without a price. Your spirit will undergo a trial by fire. One father I counseled told me he had not gone to synagogue for the first time in his life for the High Holy Days. When I asked him why, he told me that he had nothing left to atone for since his child was chronically ill. A Christian mother told me that she was no longer afraid of going to hell. She had 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 has autism, didn't relate to her in the "normal" ways she had expected.

 

To Sum Up

Of course children need strong laws to protect them from abuse and neglect. And those laws must be vigilantly enforced. I do not advocate that overwhelmed parents should dump their child at a hospital. I do believe that we should take into account the mental health needs of each unique family unit that a child with special needs is a part of.

The recent report of the Surgeon General points us in this direction by clearly establishing the connection between physical and mental health. The kind of intense stress that many parents of children with special healthcare needs face daily can stretch you to the breaking point. If a parent in this situation had attempted suicide, that would not have been a national news story.

The Kelsos are giving us a message about needing more and better support including psychological services. Perhaps our systems of care should be charged with neglecting their emotional needs.

Certainly the issues are many and complex. Without walking a mile in their moccasins, we may never understand how hard the Kelsos' lives have really been. Let's hope and pray we never find out first hand. Let's appreciate more deeply the healthy children we have been given.

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 us treat his parents with dignity.

 

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