I want to warn people that I think this blog entry will be a little raw. It's one of those entries I write more for myself than anyone else, just to vent my feelings.
I am feeling angry today, furious really. Not angry at any person, or institution, or event. I'm angry at autism. I think it's fair to say I hate autism.
In response to the arguments I am making in my own head to that statement---saying I hate autism doesn't mean in any way I hate people with autism, hate Janey. I love Janey more than I can imagine loving anyone on earth. And it doesn't mean I don't realize that not everyone with autism has a form of it that would stir up hate. I wish there were different names for different kinds of autism. There is autism that makes people a little quirky and interesting, autism that is something a person can and often does feel proud to have. But if they are able to feel that feeling, they don't have Janey's form of autism at all.
I hate autism for what it has done to my daughter. It took a sweet little girl, a girl that in most ways was developing normally, a girl that more than one person said to me "Well, at least we know she doesn't have AUTISM!" as if the very thought of that outgoing, happy child having autism was something we could almost laugh about, and within a few months, stripped her of her happiness, her ability to communicate anything but the most basic thoughts, her ability to learn...autism came like a thief and somehow, before my eyes, robbed Janey of so very much.
I hate autism for tormenting my beautiful girl. I hate it for making her bite herself until she has a permanent scar on her arm, for making her scratch herself so badly she sometimes bleeds, for making her scream a scream of what only can be described as agony, over and over and over, for making her cry sometimes for days for no reason she can tell us, for making her perform useless rituals increasingly frequently, for keeping her from sleeping, for doing things to her that if it were a person doing them, would be rightly called torture.
I hate autism for making learning so hard for Janey, for making it that any testing she has ever had shows her to be severely retarded, although I know, when I allow myself to think about it, that there is an amazing mind locked away somewhere in her brain. I hate it for keeping her from reading, from doing math, from being able pursue her interests in any depth. I hate it for taking someone with many gifts and talents and making them unable to use those gifts and talents.
I hate autism for taking away so many of childhood's joys from Janey. I hate it for taking away any real enjoyment of Christmas, or birthdays, or Halloween. I hate it for taking away slumber parties and playdates and ballet lessons and first dates.
I hate autism for the what it will do in the future. I hate it for keeping Janey from ever getting a high school diploma, a college degree, a husband, a family, a first apartment on her own, a life apart from her parents.
I hate autism for making our home life so often a living hell. Janey doesn't make it that way---autism does. Autism keeps us from vacations, dinners out, visiting friends as a family. Autism will take away any years Tony and I might have had of a leisurely retirement. Autism will make me terrified of getting old, of not being on this earth to protect and care for my precious, precious girl.
Maybe I am not supposed to say I hate autism. Maybe I am not supposed to be angry at it. But substitute any other name for autism in this post, and imagine NOT hating it, NOT being angry at it.
I love Janey. I hate autism because I love my daughter. Janey's wonderful traits, and she has many, are not part of the autism. They are what the autism has somehow spared.
Tomorrow we have our big, big IEP meeting. I will write about that, and I will try to be less emotional than I am today. But for now, I am allowing myself, until Janey gets home and I put aside any emotion to give her the best night I can, to give in to hatred. Just for today.