Guilt and Voodoo by Pattie Krohn

May 1, 2014 in Day to Day Life, Everyday with Special Needs

           Hi, everyone.  It’s been awhile since I’ve shared anything.  I know you will enjoy reading this essay.  It is written by my friend and novelest Pattie Krohn.   Each of her books are excellent.  My favorite is “I Love Your David Foster Wallace”.  Try them all.  You can download them on your kindle for $5.  Several of them are also available at the San Diego Public Library.  Check them out.

      She started this essay in 2000. It’s a recollection of her experiences in the 1990s when her special needs son was a child.  It brought tears to my eyes.

Guilt and Voodoo

      From the beginning Mike was different. He seemed fragile. I wouldn’t even let the nurses take him to the nursery.  I wanted to hold him constantly.  He didn’t look at me but always some point over my head. He had trouble nursing because he lacked muscle tone. One day at the park while my daughter was swinging and I was holding Mike, an old Persian woman sat down next to me.  She said, this baby needs to eat. She grabbed one of my breasts and flipped it up and down like a wallet. My breasts were empty because Mike wasn’t nursing well.

       He was so light at his first vaccination appointment that he could not get his shots.  When we laid him on the crinkly paper on the examination table he arched his back in fear, a probable indication of a neurological problem. The pediatrician was alarmed and asked me politely if I might like to give the baby a bottle of formula.  Mikey drank it as if he were starving.  Why hadn’t I noticed how thin he was?

     He put on weight, but by one year it was clear that Mike had a problem.  The pediatrician sat me down to tell me what he knew. He assured me that Mikey would have just a fine life; it was my life that would become difficult.  I cried.  He gently told me that I could love a disabled child as well as a normal child.  That wouldn’t be a problem. I wanted to know what I had done wrong.  How did I let this happen?  The pediatrician’s response to this day still gives me solace.  He asked me if I were responsible for my bright and happy daughter.  “No,” I answered, “of course not.”  He said, “Then why are you responsible for this?”

     That response was too rational. I believed like most mothers do that this was my fault.  I went over and over the details.  Was it the time I opened the centrifuge in the lab and was met with a puddle of radioactive iodine?  Was it the bad Chinese food I had in Tucson?  The torn up slab in the apartment?  Cosmic rays?  What?

     No one knows what causes autism.  There seem to be as many types as there are children.  Since the incidence appears to be rising (could it just be a difference in diagnosis now that autism is a “spectrum disorder”), there are many speculations: a bad gene cluster, vaccinations that contain mercury, environmental toxins.  At that point, after I had considered everything that could have possibly gone wrong, it seemed like bad luck.  But back then sitting there in the doctor’s office, it was certainly my fault. Mothers of children with disabilities have this massive pernicious guilt, or at least some explanation like God gave her an angel to take care of.  And even though mothers donate only half the genes, this is entirely on us.  It doesn’t matter that that is irrational.  We shared our blood with the baby.

     We want to fix it and there are plenty of people who want to help us.  I think I either met them all or at least heard about them from other mothers.  We went to physical therapy, speech therapy, and occupational therapy. Mike didn’t mind these things; it was fun.  We played a lot with therapists and the county picked up the tab.  But then it got more serious.  The physical therapist recommended leg braces (his one knee pointed inward for a while) and the social worker wanted blood tests, urine tests, and a muscle biopsy.  They suggested a brain MRI.  A MRI in little babies requires a total sedation and muscle biopsies really hurt.  I was not about to do anything of the sort —tests, biopsies, or braces until I got other opinions.  The pediatric orthopedic surgeon said that leg braces were something left over from polio days.  They did nothing.  He felt confidant Mike would do fine without them.  He did.  The leg corrected itself.  The pediatrician calmly supported my decisions.  He agreed those tests weren’t relevant.  But then I was faced with “cranial manipulation therapy” and “patterning” and “brushing” and the special diet touted to alter his behavior and the very expensive homeopathic drops that were said to fix anything and everything.  Since I was to blame for this problem, I asked my pediatrician how far I should go to try to fix it.  He quietly said that there is a difference between therapies that are simply ineffective and those that are plain charlatanism.  He said it without looking at me, but it was all he had to say.

     I know mothers who have tried it all, who frantically look for the one special trick that is going to change everything.  I know mothers who spend their time driving from clinic to clinic, loading up their credit cards, and scouring the Internet for the one article out of fifty on the topic that will support some screwball idea.  We are desperate.  When the social worker found me balking at various “therapies” she actually yelled at me, “He’s cute now, but WHAT ARE YOU GOING TO DO WHEN HE IS SIXTEEN?”

    It’s hard to say no when there is no proof that any intervention does anything at all. I think that children in a loving home will reach their genetic potential no matter how much money you spend on therapies, occult or otherwise, and then reach a plateau where not much will change.  I believe that I can’t change Mikey’s neurology any more than I can change my eye color.  He is wired differently.  He has different genes.  And even though after 25 years I still feel that somehow this was my fault, I can honestly say that now I wouldn’t change a thing.

Again that was written by parent and novelest Pattie Krhron.