A Five-Year-Old’s Discrimination Story

August 7, 2008

I had really hoped that we’d all get through the first week of school without any major incidents.  We weren’t so lucky. 

My beautiful granddaughter, age five, is a bright child who reads Harry Potter, plays the violin, knows number places that include the ones, tens, and hundreds, and can tell you about the Mars Rover in detail.  She was born with a physical disability known as a cloacal anomaly, a problem that occurs in 1 in every 20,000 or more live births.  Of all the variations of this, hers is one of the worst.  It is considered one of the most difficult pediatric surgical challenges to correct.  Her surgical history is too much to explain here in a short post.  But, as a result of these procedures, she does not yet have urinary or bowel continence.  As a temporary measure, her parents use large Pull-Ups to deal with this situation.  As you can imagine, they worried about how well she would be accepted in public schools. 

On the one hand, they didn’t have to worry.  Her teacher, principal, school nurse, and the staff are wonderful.  They love her already and she is thrilled to be there.  I can’t say enough about how supportive her teacher has been so far. 

On the other hand, the after-school program, a separately run program that is on-site at her school didn’t do so well.  I picked her up after her first day.  I am amazed that her clothes weren’t soaked since that was one of the wettest Pull-Ups I have ever held.  They didn’t change her.  They admitted that they didn’t check.  They admitted that they were told how to do it by her teacher when she brought her to after-school.  I changed her in front of them to reassure them that, while her anatomy may not look normal, there is hardly any difference in the process of changing her.  They assured me that there would be no problem and responded in detail as to how they would and could handle this need.  They seemed positive and enthusiastic. 

Day two.  Her mother received a call while on her way to pick her up.  She was told that her child could no longer attend after-school since she had a medical problem.  They were okay with Pull-Ups, just not with the “medical problem.”  When she arrived, she discovered that her child was waddling from the pain of being kept in a feces-laden diaper for the two hours she had been there.   She had told her caretakers that she needed to be changed.  When her mother arrived, the two caretakers were sitting at a table talking with only her daughter and one other child present.  She was immediately informed that her child would need to be changed….

She was livid.  My granddaughter had dried feces on her bottom and a severely swollen and bleeding rectum from being unchanged.  It will take a few days for her to return to normal.  We can expect her to cry with every bowel movement until it does. 

So far, we only get lame excuses.  They weren’t comfortable!  THEY had my personal number and the assurance that if there was any problem I would come.  THEY chose to let her sit in feces instead.  Their superiors aren’t any more helpful. 

So, what do you think.  Is this neglect or abuse?  We could turn the other cheek, but, in my granddaughter’s case, both “cheeks” are already involved.

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6 Responses to “A Five-Year-Old’s Discrimination Story”


  1. […] Jonathan Nirenberg wrote an interesting post today onHere’s a quick excerptShe was born with a physical disability known as a cloacal anomaly, a problem that occurs in 1 in every 20000 or more live births. Of all the variations of this, hers is one of the worst. It is considered one of the most difficult … […]

  2. Lynn C. Says:

    Ohhh, Debbie, my heart goes out to your granddaughter, and all of you! I hate she was neglected, shunned over something she can’t help, and sad that the people in charge had no compassion, if that were their daughter, granddaughter, sister. What will you do? I will be praying for all of you, love, lynn

  3. Dusty Says:

    Schools adapt for other special needs with IEPs, etc. This is an easy thing to adapt to. They are not having to modify a curriculum, just pay extra close attention to a medical issue. I am so very sorry this is an issue. It’s neglect. And, neglect IS abuse. Like Lynn, I will be praying for that beautiful little girl!

    Harry Potter? Really? We’re still working on Frog and Toad.

  4. Lynn Fulop Says:

    Dearest Debbie, Your daily blogs have been so very meaningful to me. Many days I wanted to respond, but I couldn’t see my way clear to find the time to do so. Today I have the time to respond to this one. I am home after teaching four days in the public school system. I could not tolerate another day of dysfunciton and disrespect. My heart cries out to your precious one. As you already know, it is almost unbearable for an adult to tolerate the intensity of disrespect; how in the world does a young child? I would be crushed if I were Mackenzie’s mom. There are no words to describe my feelings if I were her grandmother. You know I will pray, and you know how much I love you and your family. Lynn

  5. dlkaufman Says:

    Thanks for the encouragement all. Lynn F. I am sorry if that was such an overwhelming experience. I’ve been there and can imagine. In Kenzie’s experience, she believes that they must not have heard her. She can’t conceive that anyone would have done it deliberately.

  6. Linda Says:

    What a horrible experience. I will pray that her precious spirit and heart will be protected and that God will change the hearts of those who were thoughtless.


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