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.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
9 comments:
There is no shame in this post. Your feelings are real and valid and you're not alone in them. I hope venting helped and that you have a positive IEP tomorrow. :)
Your post made me weep. For many of the same reasons, I hate the genetic disorder that my daughter has. And I carry a white-hot rage toward it with me always.
I too carry that "white-hot rage." Your blog never fails to comfort me, knowing I'm not alone. I hate autism too. With a violent passion that has no words.
I think it's normal to hate autism in my opinion. Age has autism and seizures and a lot of days I find myself furious at the seizures more then autism then there's days I just hate both equally. She participates in special Olympics, individuals with autism, Down syndrome, etc. she is the lowest functioning on her team. She must have 1:1 support All the time. Must be watched All the time. She literally walked past her entire team, myself and the special Olympics officials one time and just wandered away chasing a butterfly into the highway. Took us 45 minutes to find her and she was just about on the street. Whenever all the other kids are laughing, making jokes, having fun with each other to pass time when something else is going on, she will either wander, bite or attack herself, or just destroy everything around her for instance throwing all the water bottles on the ground or knocking over the trash can. Or worse try to bite the other kids. It sucks.
She plays basketball, softball, hockey and we want to set up a soccer team. She sticks with the same group of kids and coaches. I want her apart of a team and she loves sports but I could never sit in the bleaches with the rest of the families during games. Could never just drop her off at practice and go relax on the sidelines. Could never just drop her off for a weekend away during the tournaments with the rest of the team Even though she's constantly watched and surrounded by many individuals who are experienced working with special needs. I could never. It's as simple as that. No I gotta be with her in the dugout. Standing near the field when she's out on base. Standing by the court when she's out going after the ball. Always constantly near her. If all of a sudden she just doesn't feel like playing and decides to hit the other plays or bite them or herself or worse just randomly take off, I have to be able to get to her in a second.
Her team is use to her. Use to the screaming. Screeching. Biting. Hitting, pulling. Punching. Running. Wandering. Etc. Use to it all. Sadly. They accept her. But she will never have that type of freedom and independence as any of her other special Olympic teammates do. Ever. Autism sucks and some days it's worse then others. All I can say is that as they get older it can get easier. Hopefully gets easier for you and Janey.
I hate autism too.
Thank you, all of you, for understanding, and for knowing just what I mean. It means the world to me. It's so good to know there are others out there with kids like Janey, kids we adore but kids that autism has affected so very, very much.
It's likely my daughter can live at least as old as my dad. If that is the case, she'll live to see the year 2103. That's impressive but will she understand enough to enjoy whatever the world has to offer by then? I don't believe some future cure will dramatically change her condition but I hope low-functioning autism will be so rare it as say smallpox is now that people will have to get a medical dictionary to figure out what the word autism means. That's how much I hate what autism did to my kid.
Your post made me cry because it's nice to know you understand.
I hate autism too. Hugs-
I've stumbled over your blog. Sometimes - and currently very much - I hate my autism too. It is not so much severe Asperger's (I even have an university degree), but it is affecting me. Therefore I understand what you posted, it is fully acepted by myself!
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