On outliving a child. A different perspective

(the source for the somewhat modified scenario below is an NPR program on Autism)

She sat with her head in her hands and said "What would the world think of a mother that wants to out live her child?"

In an earlier posting I wrote that no parent should ever have to bury their child (7/30/09). I was wrong. There is a heartbreaking situation that happens to parents of "special" children, read that as children with developmental or other profound handicaps. Wait a minute now. Don't go off thinking I am talking about infanticide or euthanasia. I am most definitely not. Please read on and see the problem.
The mother quoted above has a teenage autistic child that is unable to care for herself in many ways. She is unable to form new speech, so can't say "I hurt" or "I am hungry" or "I am lost" or anything else. She needs someone to take care of those aspects of her life. Mom is the caregiver. In situations like this, parents carry a profound worry that they will die leaving the child to the capriciousness of the state for care or worse. In other words the question: "Who will take care of and love my child as I do?"
Now with normal (what ever that means) children as they mature they become self-sufficient (more or less). With many special children (who become special adults, but parents usually think of them as children) the degree of self-sufficiency never reaches the level needed for autonomous living. Therefore the worry.
Will this child be thrust out into the world without a chance of survival? Will they be exploited in the most awful of ways? Will they be warehoused until they perish alone afraid sick? Will they die in pain and suffering?
These worries lead parents to the place where they want to be there always for their child, and the only way for this to happen is for the child to die first. As you can imagine the guilt produced in the parent by even thinking this is overwhelming and torturous. But think it they do.
No matter what the sacrifice is, many parents of special needs kids spend 24/7 being sure their child is getting along OK.
Here is the problem. Unless the parent out lives the child, sooner or later the child will be alone and subject to the above mentioned miseries. Ergo the thought and the guilt.
There is no way out for many of these parents either because they won't let go or because there is no safety net where they live. All states have programs for disabled citizens and state sponsored care of one kind or another. The trouble is that the waiting list for services far exceeds the capacity of the states to provide care. So tens of thousands of potential clients are effectively frozen out of any care but family.
Good reasons to hope for a long life for the parent and a shorter one for the child. Try not to judge these parents. Their self recriminations are enough for anyone.