Are my children worthy to take up space?

So continuing with the theme of the last post, I found a new blog of a young adult graduate student with asperger's who recently discussed the issue of genetic prenatal testing and austism. She spoke quite elegantly about how it made her feel to be in a position to have to fight for her right to merely exist. She is pursuing a career in advocacy, and I feel lucky to know that someone like her not only exists, but will be fighting for my children.

I again apologize for my lack of technology skills, but here is a link you can cut and paste if you are interested in reading a very eloquent essay on the subject. My feelings, I fear will be expressed far less so, but my comment is underneath. My apologies to Amy for not asking her permission to track back. I know I will figure out how to do it eventually.

http://minikitkatgirl.blogspot.com/search/label/prenatal%20testing

What a horrifying thought that my two children with AS should not exist. I have to fight hard enough to get appopriate education for them without having also to justify whether they have enough value in this world to be allowed to breathe.

And I am one of the lucky ones. My children will most likely go to college, own property, have families of their own. And while it true that the world would be unlikely tobe able to sustain supporting individuals who weren't eventually self sufficient if their number grew to significant proportions of the population, I believe that is merely a wake up call for us to discover causes and clean up our toxic environments rather than a rush to euthanization of "imperfect" fetuses.

Using that kind of logic, should we consider an age at which all the elderly be euthanized because they are no longer able to care for themselves and may become a burden on their children eventually?

As with Down Syndrome, you can't even know a child's potential until after they are born and well into adulthood, whether they are on the spectrum or neurotypical or have some other kind of disability. Disability also occurs well after birth. I think of smart people that I went to school with who descended into drug addiction never to return as "productive" member of society - yet. Should we ask them to step into giant trash cans?

I am prochoice also, but I can't see that the solution to slowing down the rapidly growing numbers of people of disabilities is encouragement of mass abortions. Research shows that high percentages of women who have abortions are heavily traumatized by the experience for life, and wish they hadn't done it.

We have currently a large population of children on the spectrum in the U.S. who will soon be transitioning into adulthood, and we have failed at developing corresponding transitional adult programs and services that will help them lead productive, meaningful lives. That is OUR failure, not theirs. We also need to be a lot better at providing "appropriate" education so that those who could be self sufficient can be. There is a lot more to helping someone reach independence than just filling their heads with academics.

I guess part of this discussion is why people have children, and what are parents reasonably entitled to. If we advocate reproductive freedom, are we hypocritical to argue against abortions based on genetic testing? Would I have a breaking point personally? Like I know I wouldn't abort a fetus based on DS, but might I consider it for a child who is bound to have a short painful life based on some hideous disease? And since I already know that genetic testing is still horribly flawed, could I bear the knowledge that I might risk making a terribly painful choice in error?

I am already walking a tight rope here, because I decided some time ago NOT to have anymore birth children based on the chance that they might also have some form of autism. I am stretched pretty thin as far as parenting resources as it is, between making the decision to stay at home rather than work since my children need me so much, and my own energy/productivity. I also need to take into account my OWN disability level since the stress of pregnancy on my body and the stress of raising these kids with special needs have taken a heavy toll on my own health. So who am I to tell someone not to abort a fetus based on whether or not genetic testing shows disability?

I guess it's just so hard to hear other people talk about how little value or potential children like my kids have. I dragged my son to his first IEP meeting ever, because staff at his school had already made so many offensive comments to me WITHOUT EVER MEETING HIM in regards to his future. I wanted them to be absolutely unable to deny him his humanity, and I guess I will continue the fight to prevent the rest of society from doing so as well.