By Sue Stuyvesant
A question was
asked by a school 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?" This was my response.
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.
Where are the
parents?
They are busy,
trying to survive.
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