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
pi**ed - 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?
They 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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