This essay is an honest portrail of life of a parent with a special needs child - read this and try not to cry.
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 passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.
Wednesday, July 14, 2010
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This is posted for a reader.
ReplyDelete"Hi there,
I often read your posts and I attempted to post this article from Salon magazine from a few years ago, but it was too long. This story reflects the behaviorally challenged children who have become the new admits to ICFMR's. This mother's feelings have reflected my own.
Here is the link to the article: http://www.salon.com/mwt/feature/2000/01/05/kelsos/index.html
I would prefer to remain anonymous at this time.
Thanks.
Thanks to the reader from Saskia
"I CAN'T HATE THE KELSOS" brought back memories. At age 5, I might have lost my mother and sister when, desperate at a similar breaking point, my mother was stopped from acting on the alternative offered by Ann Mitchell in the "Salon Magazine" article. She went on, instead, to contribute greatly to changing perceptions and creating resources.
ReplyDeleteThose were the days before there was any government help at all for parents struggling to provide for their families with severely and multiply handicapped children and even fewer resources existed. But, if the efforts of those bent on destroying developmental centers were to be successful, that would change.
The author says in the article: The deinstitutionalization effort has put the responsibility for caring for disabled children on their parents. And getting help is damn near impossible. There is no government help, private agencies are short-staffed nightmares and school is a battleground."
I always wonder about the "deinstitutional effort:" why there is such zeolotry aimed at closing institutions.
Instead of working to destroy critical resources that do exist, dd agencies and organizations should be devoting precious resources to creating more and improving "community" standards and oversight to relieve the desperation of families still unserved. Instead of "throwing the baby out with the bathwater," problems found in institutions can be fixed. This is what has made RHCs in Washington State such excellent facilities.