It might be one of the most dreaded topics of all. What will happen to my child when I die? It hurts me to even type that sentence. I prefer to live in denial about such things. I think we all do to some extent. The sad truth is that it is a topic we cannot afford to avoid. It is a topic that permeates my consciousness each time I am reminded of my daughter's future. Will she be independent? Will she live on her own? Will she be married? These are all things parents of children with autism cannot take for granted. We can hope and wish for bright and independent futures for our children, but we must be prepared should this not be the case. We must do the unpleasant task of preparing for a future when we are gone and our children still need support.
Some of you may have stopped reading by now. This topic may very well have struck a nerve you are not ready to expose. I get it. I know in the very early days of my daughter Kate's autism diagnosis I would avoid these topics like Walmart on a Saturday, but lately I have come to realize that I am doing myself and my family no favors by evading a responsibility so vital to the future of both of my children. While it is true that our eldest, Miss Grace, does not have autism, Kate's future may impact her more than anyone. She is, after all, Kate's best friend and champion and the one person who will be with Kate for her whole life. I cannot bear the thought of Grace ever having to feel her special relationship with Kate has become a burden. I cannot fathom a world where they are not soul mates. It is my responsibility to prepare them for the world. I must ask the tough questions and be fully prepared for the answers.
Have you asked yourself this question? Do you need help to answer it? I know I do. I have to make sure there is enough money available for Kate to live comfortably if she cannot provide for herself. I am very conscious that I do not want this responsibility to fall onto the shoulders of her older sister, Grace. I want to be confident that Kate will be happy and well provided for whether or not she needs a little extra support.
This is the worst discussion you and your spouse might ever have. You'll probably not make it through without a sudden attack of seasonal allergies or, if you're like me, a downright ugly cry. It's OK to let that out. It will help clear your head for the task at hand. Our emotions will drive us to do the right thing and make the correct choices. I'll need to secure a most trustworthy person to take care of my girl. I'm sure you feel the same way about your child.
You fight for your child's right to excellent therapies and treatments. You advocate all day long, as it is. Who will do that when you are gone? Who will finance the support that makes such a difference in your child's life? I can think of a long line of people that would stand up for Kate, but I will need to make things official sooner rather than later. Those people adore Kate but they may need thorough education about autism before they are fully prepared to fight for her the way I do.
So, I am tapping into my protective instinct to get this done. I am pushing my anxiety aside and I know I will thank myself when this is settled. I know I can only truly put this fear behind me when I have wiped it out with some careful planning with an independent insurance agent. My circumstances are not the same as most, and maybe yours are different, too. We need expert advice, and we need our questions answered, no matter how heart-wrenching those answers may be.