Thursday, June 28, 2012

Tears for the Future

Writing about today's subject is very difficult for me. Just thinking about this subject can get me tearing up, but it's something I need to figure out. I would like your ideas and comments.

Often parents of children without disabilities make arrangements with friends or family to care for their children in the event of the parent's untimely death. Call it being a Godparent or a guardian, it's usually not difficult to find someone. But imagine the child has disabilities, severe disabilities, and as the parent you have no family members able to step in. And, it's probably not too difficult to also imagine that there are few if any friends willing to step in and provide the intensive care your child with disabilities will need in the event of your death. What do you do?

And on top of that, imagine how difficult it will be for the child, a child who can't understand that their parent, their whole world, just one day disappeared. What would you do?

I've been to meetings about special needs trusts. Money is one thing, but finding someone willing and able to care for your child with disabilities is another thing. And then imagine that your child is growing up, is over the age of 18 or 21. What then? Your child still needs care every bit as much as they did when they were 5 years old, but they are still unable to direct that care themselves.

There are absolutely no easy answers, but at this point, I would take any answer. Yes, I have an adult son, a son who is just beginning to embark on his life. As much as I know he loves his sister, could I ask him to assume her care for the rest of his life? I know I don't want to, but I haven't found another answer yet.

Advice? Ideas? Tissues....???

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