Where are the parents? Story posted from WS list

The "story" in black text is copied and posted from our Williams Syndrome list and I would like to comment before we go on. Recently I have been very busy being involved with our local WS Conference (August 29th), back to school for our girls (August 24th) and attending a few local disability sessions out here in Katy. Of course as any married person knows if one parent is busy then the other parent steps up. John by no means complains about being with the girls, he enjoys them, unfortunatley his job is a booger and those of you close to us know I am using a nice term for it. One night after I returned home I was rehashing some of the open forum discussions, one being my comment that at one point "the meeting turned into a ISD bashing session" and that it was sad to think of the "fight" ahead of us. He made the comment of "I don't think all of this (going to these meetins/conference) is worth it". I really didn't know how to react to that statement. At first I guess I was hurt, that he didn't feel I was able to put into action any of the information that I had been given. We talked a little more and got away from the subject. Sleep came eventually and life moved on, that was on Tusday today is Friday. I am not angry and nothing against John maybe he has just brought to light that as much as I try to get things right in regards to schooling/ARD/IEPs for Lila (possibly Ava too) that I will always be wondering if it is the right thing because the school district is only looking out for themselves. As much as this is hard to hear, it is true. As I think back to a different meeting. The organizer of the meeting stated at the end of this casual get together that she hoped that the persons/organizations present would band together and become a voice to a certain ISD, to push to right the wrongs she saw and (many others) have experienced. The persons/organizations present at that meeting already do a lot for the disabled but through their parents/caregivers etc, so this statement caused a stir. I am going around in circles here. Basically, there is too much to do, not enough hours in the day and not enough fighters out there to fix our schools and do the right thing for all children. We know Lila is blessed to have great health and John and I are comfortable finanically. Yes, I work outside the home, my family needs my attention and unconditional love, but am I able to be the face needed at the school board meetings or where ever I can? Yes, I think I am. Do I think this is "worth it" as John asked, yes, especially when so many other parents are in the situation below. Am I gonna turn into a flaming liberal thinking I am gonna right all the wrongs and be a savior of all, uh no (but when I can walk on water ask me:) Ok so reality sucks plain and simple. Sure there are A LOT of parents that don't give a crap, they can deal with it where ever God puts them at their lives END. I myself do NOT want to look in the mirror and see a person that said NOTHING.



Where Are the Parents?
> By Sue Stuyvesant, Parent
>
> 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, microcephalic,
> 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 nitwit 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. 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 their 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! ~ THE END ~