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 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.
     Children with special healthcare needs can be wonderfully endearing and lovable.  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.  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 had autism didn’t relate to her in the “normal” ways she had expected.
     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.
     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.  I think this would please Steven.
(As it appeared in the Philadelphia Sunday Inquirer of January 9, 2000)