"I hope my child dies before me."

Yesterday was autism awareness day, and this morning on CNN there were lots of stories about parents and their children who have autism. For the parents of adult children of severely autistic children, as with any parent of an adult child with developmental disabilities, there are concerns about what lies ahead.

I know the title of this post might be shocking to some, but every parent I have ever met who has an adult child with developmental disabilities expresses this sentiment. The title comes from a quote reported on CNN this morning, and it resonates with me.

I heard a parent say once, "I am praying that I live at least one second longer than my child." I often feel that way. The terrible tragedy is that these developmentally disabled adults are so vulnerable to abuse. Alan is so easily manipulated sometimes, he might be coaxed into doing something he shouldn't do. He has no concept of money, so he could be convinced to give his banking information to someone.

I wonder what would happen to Alan if his parents left him? Without an advocate who knows and understands him, who can see subtle changes that might indicate a problem, he could be abused or exploited and would most likely never report the abuser. He so loves to come home, and wants to be with us as much as possible. How alone would he feel if Mom and Dad were no longer here? He has always been so close to his family, loves to go to family reunions, loves to see his cousins and aunts and uncles. Would that contact be maintained if we were gone? The residential placement we have Alan in now is a good one. Caring and compassionate people watch over him daily.

Even so, I still hope to outlive my child.


Post a Comment

Popular posts from this blog

A Happy Birthday Letter

Almost 2020 - Your chance to weigh in!

Palliative Care