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J's Story

My son does not attend school in the Apollo-Ridge area, but I am posting his story on this site in the hope that it may encourage any wavering parents to FIGHT for their children if their schools are not doing what is right by them.  Many people are afraid to buck the school districts because they think that the schools are too powerful to beat -- and, believe me, that is EXACTLY what the schools are banking on:  FEAR.   Many people are afraid to question the judgments made by school personnel, because they think that the schools are staffed with people more highly educated, ergo more equipped to make assessments critical to the welfare of their children -- THINK AGAIN!!!   The schools count on fear and intellectual elitism and intimidation to keep their client parents in line.  I am here to relate my son's story, and to help crack the myths that the "schools know better than parents how to deal with their children," and that they (the schools) can't be beaten and held accountable for dealing irresponsibly (and in many cases harmfully) with our kids.


A Brief History

J  is a bright, articulate youngster (a mother's observation), nearing his tenth birthday.  He has his occasional scraps and scrapes, as most (I think) boys his age.   He loves, teases, and rough-houses with his dog;  enjoys biking and roller-blading;  holds a blue belt in Taekwondo; excels in piano (and in giving me a hard time over practice); loves to read (we are becoming experts on the Titannic and other sunken, maritime vessels);  and sings with a local boychoir.  There have been times in the past almost-ten years, though, when I despaired for his future, and was frantic over what the schools might do to him.

The day J was born, though, worrying about the quality of his public schooling was not exactly our top priority.  He entered this world with a birth defect (an imperforated anus -- no rectal opening), which could have been linked to so many other defects it   made our heads spin.  J's first day was spent in the intensive care unit of Children's Hospital in Buffalo, New York, where he underwent a flurry of testing to detect any related defects.  One other presented itself:  that was an opening (fistula) between his large intestine and his urethra, which forced fecal material out through his urinary track.  After the test results were in, the gastro-intestinal surgeon gave J a colostomy. 

The colostomy was to be temporary, so there were two openings made in J's lower left abdomen.  One was to provide a channel through which the working intestine sent fecal stool; the other was to provide a drainage site for the lower intestine to keep it workable.  We were told that the surgeon would rejoin these ends ten months later, after an anal opening had been formed and healed.  However, within a few days after the colostomy, we found a serious problem.  When the baby's bowels started to move, it became obvious that the ends of the intestine had been put in the wrong positions, and the stool was coming out into the operation incision and was infecting J's abdominal wall.   This was another life-threatening situation.  It was AT THIS POINT that we learned that we HAD TO FIGHT for our son.  The medical staff of residents knew that there was an infection, but all they were doing about it was pumping the baby with antibiotics.  They were treating the result, but not the cause.  We argued with them for hours that the problem was with the stomas, and they kept insisting that we were just imagining things (a classic example of intellectual elitism).  Finally, though, when we forced them to stay until J had a bowel movement, and they could not avoid the obvious truth, they called the surgeon.  I don't know what would have happened if we hadn't forced their hands, but I have my own opinion.

J had to undergo another operation to correct the mistake; and this time we almost lost him.  Weakened by all the testing, the first operation, and FIVE HOURS of prodding by inept interns trying to find a vein for an IV, J almost did not make it through the second operation.



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Last modified: August 31, 1999 02:18:31 AM

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