What Have We Been Doing?

Hello everyone! I wanted to announce that yesterday afternoon, at his nonnie's house, Stephen fed himself cereal with a spoon [without spilling most of the milk!] We have been working on self-feeding with a spoon for a very long time. He was so proud of himself. I am happpy that I was able to get pictures of this for our scrapbook!

The story below is something that a fellow-mom of a special needs child sent to me. Ironically, the title is a phrase that I use quite often. One thing that really gets under my skin, is to see a small child playing near or in the road. Especially without adult supervision. I see this every day in my neighborhood and always ask myself, "Where Are The Parents?" Last summer, my husband went to a neighbor's house out of concern to let them know that their little girl [3 years old] had been sitting in the curve and he thought they'd want to know so they would keep a closer eye on her. The father didn't even put his beer down to cuss at my husband and tell him to mind his own business. I just can't understand that!  It should be illegal for people like them to procreate.  

Anyway, the above story has nothing to do with this story. I just felt like adding a personal rant today.  

For the past 3 years, I have not been involved in Stephen's school like I used to be. Mostly, just because the PTA at Stephen's school doesn't apply to us. I went to a few meetings, and I felt like an outsider, looking in. Nothing that was said had a thing to do with special education. So, I dropped out, after I made a few comments which received no replies. No one contacted me after I stopped going. It's like I was never even involved in the first place. Other things have taken precedence over selling coupon books and candy, or having carnivals to raise money for the school, especially when none of the funds go into the special education department in his school. I suggested a cookbook sell, and no one was interested so I left it at that. No hurt feelings, no real harm done. I have way too much to contend with, where Stephen is concerned anyway. After you read the story below, you'll have an idea what our life as Stephen's parents is like.  I know a lot of you have grown to love Stephen. From the bottom of my heart, thank you!  It's been great to feel the love. Remember; there is a Stephen in every town across America! Behind each of them, you'll find a worn out and very exhausted mother, like myself. A lot of them are single mothers. You can help make a difference. You can contact your local ARC [association for retarded citizens], The Easter seals foundation,  The UCP [united cerebral palsy]  just to name a few. Also, contacting your county's special education department is a good place to start.   ~~~~~~~~~~~~~~~~~~~~  

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? 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.