wanted to share this Sue was a amazing women and was asked once 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 her was, "Where are the parents?" She went home that night, started thinking and banged this "little" essay out the next day on her lunch break. We not only share a special closeness to other parents and family members dealing with Autism in a larger sense we share a special closeness to all parents who have special children.
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. her daughter Michelle turned 18 in 2005.
Bravo! Very well said. It is very hard to stay on top of the day to day "stuff" with my autistic 7yr old. Next year he and his 10yr old brother will be attending the same school for the first time since they both started school 4yrs ago. They kept moving the "special ed" program my son was in to different schools! Now it will be at our home school and I'm hoping I will be able to be more involved for both of them since I'm not trying to split my attention across town! But, PTA meetings? Maybe some day...
Thank you very much for saying that. Your post made me cry. I am a young mother with an autistic 3 year old child and I feel completly alone. I never looked at my child as being different,but I have 3 other children and it is definatly harder to deal with. My husband is in denial about the illness and therefore has never been to a therapy session,ARD meeting,or group meeting. I have done everything on my own and it becomes unbearable at times. Anyway, thanks again.
Even if I had the time or energy to belong to a pta group I would not feel comfortable. It seems their desires and mine are so wide apart and I feel I have nothing at all in common with them.
In fact it hurts my heart to hear them complain over such trivial matters. I cant help sometimes but to feel resentfull of other parents who are caught up in a world that is foriegn to me.
I suppose that sounds bitter and I guess I am still bitter. Its just that many of these parents who want to make a better school for their NT kids dont seem to give a hoot about the special children and in fact some would rather see them segregated into another school then intermingle with their children.
