Tuesday, September 6, 2011

Where are the Parents?

School started today, for everyone in our area at least. This routine, though chaotic to most, is my comfort.... summers and their disorganization completely stress me out! Filling out paper after paper, about joining the PTA and volunteer opportunities reminded me of this article that I originally read in a MUMS (a national parent to parent network) newsletter. It's literally an exhausting task trying to explain why you can't do more, or be more involved... though I would LOVE to be and am as much as I am able. Sue's essay absolutely says it all the best:

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.

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue, sadly, passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.

1 comment:

  1. This one floored me. We've had the exact opposite problem. I've never experienced the stress of other PTO parents wondering why I don't do more because the PTO has virtually ignored us.

    My son has Asperger's. He may be a little different but there is no reason he can't participate in fundraising. For whatever reason, those fliers, the ones about selling cookies and wrapping paper, never make it to his classroom. The only way I find out is when some other kid's mom asks me if I want to support the school. That would be the same school my kid attends. The same school where the money raised by the PTO is designated to benefit the whole school but somehow never makes it down to the little corner when they have stuffed my son and his classmates.

    I don't think I would enjoy being in Sue's position either. I'm sure I'd be just as ticked off should someone imply that I don't care about my child's school or the efforts of the PTO. We parents are extraordinarily busy raising our special needs kids. The doctor's appointments; the assorted therapies; the energy to fight for the smallest thing that will help our child. No, being guilted for that doesn't sound much fun at all.

    But I would appreciate it if our PTO would just recognize my child is a part of the school. I would love it if my child were given the opportunity to support the PTO even if I don't have the spare time. I would be thrilled if the PTO would realize that my kid and his classmates are actually a part of the school - not some alien mutants inhabiting a corner of the campus because legally, the school is required to accommodate them. Seriously. I'll buy the cookies and the wrapping paper for the PTO fundraisers. But not until my kid gets to be part of it.

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