Where Are the Parents?

By Sue Stuyvesant

 

Hey everyone, 
 
For those of you who don't know me (I'm only an occasional poster) I am mom
to Michelle, 9 years old, microecephallic, athetoid/spastic CP, Cortical
Visual Impairment, Seizure disorder -- and CUTE! Ok, now for the reason I'm
posting.
 
To make a long story short, earlier this week a question was asked by some
nit wit official as to why there weren't more parents (of special needs kids)
involved in the local PTA and other issues that have come up that directly
involve our kids. His question, which was passed on to me was "Where are the
Parents?" I went home that night, started thinking - and boy was I pissed -
and banged this "little" essay out the next day on my lunch break. My
friends thought I should share it all with you, and I apologize for the
length, but I wanted you to have it all. By the way, I took copies of this
to the school board meeting that night, gave it to a couple of influential
people and it WILL get around.............


Where are the parents?
 
They are on the phone to doctors and hospitals and fighting with insurance
companies, wading through the red tape in order that their child's medical
needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to
make sense of a system that seems designed to confuse and intimidate all but
the very savvy.
 
Where are the parents?
 
They are at home, diapering their 15 year old son, or trying to lift their
100 lb. daughter onto the toilet.
They are spending an hour at each meal to feed a child who cannot chew, or
laboriously and carefully feeding their child through a g-tube.
They are administering medications, changing catheters and switching oxygen
tanks.
 
Where are the parents?
 
They are sitting, bleary eyed and exhausted, in hospital emergency rooms,
waiting for tests results to come back and wondering: is this the time when
my child doesn't pull through?
The are sitting patiently, in hospital rooms as their child recovers from yet
another surgery to lengthen hamstrings or straighten backs or repair a faulty
internal organ.
They are waiting in long lines in county clinics because no insurance company
will touch their child.
 
Where are the parents?
 
They are sleeping in shifts because their child won't sleep more than 2 or 3
hours a night, and must constantly be watched, lest he do himself, or another
member of the family, harm.
They are sitting at home with their child because family and friends are
either too intimidated or too unwilling to help with child care and the state
agencies that are designed to help are suffering cut backs of there own.
 
Where are the parents?
 
They are trying to spend time with their non-disabled children, as they try
to make up for the extra time and effort that is critical to keeping their
disabled child alive.
They are struggling to keep a marriage together, because adversity does not
always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra
expenses.
And sometimes they are a single parent struggling to do it all by themselves.
 
Where are the parents?
 
They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have
some sort of normal life for their children and their families.
 
They are busy, trying to survive.
 
Sue Stuyvesant
10/15/96


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