Skip to main content

Where will our kids go??



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.

Comments

Post a Comment

Popular posts from this blog

Hobbies - sanity saving stuff!

 I haven't written anything in a while. Mostly because I've been keeping myself busy, quite productively I must say. I started a whatsapp group more than a year ago, where I sell items I find at thrift stores. I hit an emotional bump in the beginning of the year and stopped the group for a few months. After some self reflection, I started the group again, and it's been keeping me occupied. And thus away from sinking into depression again. Depression as a result of PTSD from special needs parenting. But I have posted about this before, and this post is about positivity and hope. So I won't be going into depressing subjects today. My whatsapp group's name is Interestingfinds. And that's exactly what I sell on the group. Treasures I find in thriftstores and similar stores. I also have a bidorbuy account where I sell similar items. But the whatsapp group has been really therapeutic. I get to interact with other people (electronically) and I have made quite a few fr...
3 comments
Read more

Rock bottom...

This post is very difficult for me to write. But it is part of my healing so here goes. I was feeling so tired and so alone. I could not see light, I only saw darkness. I thought if this is it, if this is all there is I can just as well be dead. But if I'm dead what then? Where will I go? Will there be nothing? That can't be, there has to be something after death, but then there also has to be a God. And if there is a God then it is not as hopeless as I thought. And I could grasp and cling to that thought. I could see myself going on. That was the lowest point ever in my 37 years on earth. What brought me to this point is a very long story. It started a little more than 14 years ago with the birth of my first born son. I have always been a control freak, I like to plan and to feel in control of a situation. For the past 14 years I have tried to be in control and on top of all my sons medical issues. I researched every new diagnosis so carefully that my husband started to r...
7 comments
Read more

Embarrassing or infuriating?? Both.

This special needs journey has been entertaining. It has been scary. It has been educational. It has been down right depressing at times. It has been humerous. All of these emotions have been present for a while, and we experience most of them daily. It has also been embarrassing. But we got used to the dirty nappies at inoppertune times. We even got used to impolite stares and whispers. All of these moments have been embarrassing in a way, but we got over it and learned how to cope with them. We have recently begun to deal with issues that were not present before. It is embarrassing, but it also reminds me of how uninformed people can be. We attended my niece's birthday party and one of the moms told my sister that she was worried because my son would be attending. She was worried he would try something with one of the girls. Now, for those who don't know Jacques, that is just plain hilarious. It is funny because Jacques doesn't understand sexuality. And it is hilarious be...
3 comments
Read more