Wednesday, April 04, 2012

It was a very long day

And you know it is going to be, when the OT comes out and cheerfully informs the parents that today's session was about "dealing with disappointment!" And then, just as cheerfully, tells you that they had an egg hunt, but when the kids opened the eggs, they were full of stuff like paper clips and crumpled paper, and the kids then had to practice saying something nice about the object.

Yeah, I know why this is done in a social skills group, and the point, and all that. I can pull apart the layers of it like an onion, and go on for several blog posts about how great this exercise is supposed to be in teaching this lesson and that lesson. Blah, blah, blah. But for us, what it meant was I was heading straight into Hell.

See, Joey managed to hold it together for the therapists and his friends, but once we got in that car, it all broke loose. Yes, I know its because he trusts us and was tired and think about how difficult the OT was and blah blah blah. That isn't going to take the bruise off my arm or the tooth prints- his own- off his, thanks. And Person at McDonald's Who Forgot To Leave Off The Ketchup, Mustard, Onions and Pickles From Our Sandwich? Yeah, a big thanks for nothing to you, too. Oh, and that regular coke you gave me? You could have killed me. But that's for another blog post.

We didn't quiet down until i gave him the pom-poms to shake at Andy's soccer game. But don't worry. We fired right back up when we hit the car, even after being so very happy to see some neighbors Joey adores and running around with them for a few minutes.

Yeah. Long day, packed into the four hours we have after the school bus drops him at my door.

Then I read about Daniel Corby. The idea that it would "unjust to let him continue living" makes me want to run screaming into the night. Unjust to allow another person to continue to live? Why?

Oh, right. Because this four-year-old was autistic. {*insert ugly word of choice here*}

I selected the particular article to link to about it because when I linked, there were no comments yet. And I didn't want there to be comments, because when you go to ones with comments, you run screaming into the night to jump off a cliff. I don't care what resources you do or don't have, what culture you are part of, or what society thinks of you. There is no justification for taking another innocent human life. To take a life that is trusting you to protect it? What, you think disability is worse than death?

It is shocking how many people do. And not only do they think it is worse than death, they think and firmly believe that people with disabilities are less than human, and deserve death. That people with disabilities have no rights, no feelings, no skills, no purpose, no value. They are less than objects, less than dirt. Some people are more subtle about it than others, but the feeling rises to the surface in ugliness that is so insidious and horrible that it is hard to know what to say or how to fight against it. Our culture, our language has difficulty communicating counter-concepts in a way that makes it clear how wrong and ugly and evil such ideas are, and yet how ingrained they have become. What would I have thought before I had Joey in my life? Sometimes I find it a terrifying thought.

Another exhausting vein of comment is people who complain that people with "high functioning" loved ones have no clue what it is like to have "low functioning" loved ones. I have news for them. The problems are different. Am I lucky to have a child who can speak? Yes. Even when he is screaming at me, "I hate you! You hate me! Just kill me now!" and beating on my arm so hard I worry that come day he might break it? Yeah- different problems. But dismissing my point of view in discussing the murder of a child just because he is autistic, simply because my child is "higher functioning" that yours? That is low. Very. Low.

I've been fortunate in being able to spend more time this year in Joey's classroom, and volunteering for several of the special ed kindergartens this year. I've seen a good range of "functioning." I am still convinced that several students would be able to "function" better if they were given more understanding and people "listened" to them better, instead of imposing their own ideas and wants upon the kids. I have seen a range of problems, issues, challenges- and strengths, gifts, and hard work- but each of these kids, each of these families, is unique, meeting their challenges and lives with varying degrees of grace and success. Special needs means special efforts, no matter what the challenges or the strengths. Judging another family because their child is "more disabled" or "less disabled" is just another way of dismissing someone else's hard work and challenges. It is assuming you know more about that other person's life and experience than you do.

And none of those challenges justifies murdering a child. Period.


farmwifetwo said...

I have trouble with keeping people alive by extraordinary means solely because you can't let them die. But then again, I watched them do that to my Grandparents. Did you know that once you stop eating and drinking it takes about 2 weeks to die. Or that you can't have more morphine when your veins start collapsing - the pain is incredible - because you might die a couple of hours faster and become addicted to it? I thought that was the most disgusting thing I'd ever seen. We treat our pets with more respect.

So, I have my limits on what is acceptable and what requires a DNR order. As, noted in an article not that long ago - which I should have kept and forgot to tag - is that DNR is not Do not treat.

What I find frightening is the number of people that kill their children. Is that part of the world we live in today and for some reason we've become so distanced from reality with all the internet and tv etc or has it always been that way? There's a cardiologist in Montreal that pretty much got away with murdering his kids. There is another Mother in the courts right now from out West that drowned hers so her husband wouldn't get custody.... None of these children had "issues".

Maybe if we made it easier for people to put their children into care. Right now it's taboo.... and social services will not work with families. It's not in their mandate and people want nothing to do with them. How far can people be pushed, before they snap?

It's a very big problem.... and one gov't's prefer to ignore.

Joeymom said...

Actually, yes, my grandmother died after food was withheld. We are aware. But she is also was not a child in the care of her parents.

We are also aware that DNR was not a do not treat. Hence, my grandfather was on a ventilator and kidney dialysis for three months- with no insurance, because the only place he could be on both of those things wanted to be a "rehabilitation hospital" instead of a "nursing home"- before he died. Yay.

I don't see how either of those situations relates to my post. Neither of my grandparents were unaware of immanent death, or the position they were in. Children are innocent of these things, and expecting to be protected, and expecting to live. Even disabled ones.

Using your children and their deaths in a custody battle is unacceptable. "Social services won't help" is no excuse for murder.