Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, August 22, 2009

Where are the parents?

My friend Kristen posted this today. I thought I'd share it here as well!

Hey everyone, I am mom to Michelle, 9 years old, microecephallic, athetoid/spastic CP, Cortical Visual Impairment, Seizure disorder—and very CUTE! Ok, now for the reason I’m writing. 

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?" The first time this question was asked I went home and started thinking—and boy was I ANGRY—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, and gave it to a couple of influential people and it WILL get around............ Sue Stuyvesant 

Where are the parents? 
By Sue Stuyvesant 10/15/96 

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. They are busy, trying to survive.


Alyssa said...

wow..that was written a long time ago..i think it's great it can get around again now with the awesomeness of the internet, blogs and Facebook!

My name is Sarah said...

This is Joyce. AMEN!!! How very sad though really, that much of it has not changed since 1996.

lovey said...

I was a respite worker for twenty years, and it was the most rewarding jobs I ever had. People don't understand how much work and stress a disabled child in the family is. I would be exhausted if I did a week long respite, so the parents could go on vacation alone. These parents should get praise by all.

I think it's gotten worse in recent years, rather than better. There is such a backlash about entitlements and human services. People don't realize who they are hurting with all this "tea bag" nonsense. It's the sick, disabled, and elderly they are hurting the most. The states make budget cuts all the time to services needed, like respite care. I left respite care, because so many of my kids were losing so many hours or their services eliminated. I couldn't survive. But it was a great life, and I miss it.

Best wishes!

tink said...

I Love this and will use it next year for the parents of the children in the self-contained classroom in which I work!