How To Be Your Child's Best Advocate: An Introduction

Merely Me Health Guide
  • The following CNN story is currently making the rounds among both news forums and on-line support groups for parents who have children with special needs.    Johnathan King, a 13-year old student diagnosed as having both depression and ADHD, hung himself with a cord he was given to hold up his pants while confined within a seclusion room in a Georgia public school.  The "time out" room  where this young boy took his life, looks more like a prison cell with one tiny window to the world.  And even this window was obscured by a paper covering.  If you are a parent of a child who has special needs I am sure your heart will break when you read the details of this story.   I dare say that if you are a human being on this planet, you will feel outrage that such a tragedy is possible within an institution which is supposed to protect children first and foremost.

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    So the question becomes, why are we hearing of such stories at all?


    The answer lies in the fact that there are not enough laws to protect our most vulnerable population.  The laws vary from state to state about how seclusion is to be used if at all.  As pointed out in this CNN article, there are few laws regarding the use of seclusion for special needs children within public schools and less than half of states even have guidelines as to their use.  Clearly, the system needs to be fixed and soon to prevent more tragedies such as this one.  How many more stories do we need to hear about children being punished by being locked away in concrete rooms, janitor's closets, or other confined spaces?


    I remember seeing my first seclusion room.  I was a volunteer and special education student.  One of our teachers gave us a guided tour of the nearby mental hospital where children who had multiple disabilities populated a whole floor.  She led us to the seclusion room, which was pretty much what I expected to see.  It was basically a small room with padding on all sides, with a steel door which locked from the outside.  It made me fearful to see it, thinking that small children would be placed within its confines.  I asked my teacher at that time, "How long do the children stay in there?"  Her answer was a curt, "Until they stop crying and screaming."  This was in the mid eighties when they were still utilizing behavioral techniques such as ammonia spray to deter people who had autism or other developmental disabilities from "stimming" (engaging in repetitive motoric movements such as hand flapping or rocking).  I cannot even begin to describe what I had witnessed to be great acts of barbarism employed to provide either what was to be considered therapy or education to children with special needs back then.  I am greatly saddened that it seems we have not advanced very much in these recent decades.


    As well as having had a career in special education I am also the parent of a child who has special needs.  My youngest son was diagnosed with autism shortly before his fourth birthday.  When we first started out to find an appropriate education for my son, my husband and I visited many classrooms.  I still remember one particular preschool classroom where I saw a young child sitting behind a door in the bathroom.  When I questioned the teacher she told me that she was using the bathroom as a time out area because she didn't have any other space.  When I finally collected myself to form a coherent response I sought for clarification:  "So what you are telling me is that you are using the bathroom as a place for punishment for children who are still not potty trained?"  She nodded her head seemingly oblivious to both any ethical concerns as well as the potential problems she was creating (why would any child wish to use the bathroom when it was being used as a place for punishment?).  And this was from a teacher who was supposedly formally trained in special education.


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    And so I pose the question again as to why these types of stories continue from year to year and what can we do about it?


    I wish to pursue this matter in a series of posts dedicated to giving you information as to how you can be your child's advocate when dealing with the public educational system.  I will address such issues as to how to talk to teachers and principals as well as how to know what your child's rights are and how to enforce these rights. 


    Outrage over a system in need of repair is just the beginning. For any true change to take place, outrage alone will not do it.  Action is necessary as well.  It may seem that in some situations parents are powerless.  Yet this is far from the truth.  Parents have a tremendous amount of power to enact change.  I hope that my series will give you both the courage and the information you need to do so. 


    Remember that you are always your child's best advocate.




Published On: January 13, 2009