A friend of mine, with a child with disabilities once told me that her biggest wish is that her child will die before she does. This took me by surprise to say the least, but then she explained to me the following. She does not have a support network. She is solely responsible for her childs well being. If she should pass away before him she has no-one to take care of him. Isn't this terrible! I know of a lot of special needs families in the same circumstance. If something should happen to mom or dad, what will happen to their disabled child?
In many instances the disability is so severe that the extended family members just doesn't feel equipped to take care of the disabled individual.
Unfortunately, as our disabled kids grow older, they become less "acceptable" for the general population. Things they could get away with in their earlier years are not acceptable as they grow up. But what people don't realize is that in most cases the disabled person did not "grow up" intellectually. They are still a child in many ways. My son is 14 years old now, but he throws a tantrum like a 3 year old with the body of a 16 year old. This is a big problem.
And in my sons case (and many other autistic kids cases), it is not a tantrum in the usual sense of the word. He is having a meltdown. This can be because of a crowd of people (he does not like a lot of people around him) or it can be a loud noise. In many autistic kids only a small trigger is needed for a full blown meltdown.
What is the solution? Where will our kids go if something should happen to us? In our case we are very fortunate, we have an awesome support structure and I know both my kids will be well taken care of. But many of my extended family (because our disabled community is family) does not have the necessary support. Many friends of mine have sleepless nights, worrying about the future of their disabled child.
We need to raise awareness! We need to talk about our fears for the future. And we need the rest of society to acknowledge our fears and to extend their hands and help us think of solutions.
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