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Thursday, April 19, 2012


My daughter has Autism. This word is now a part of my general vocabulary. I fucking hate this word. But somehow this word has associated itself with me forever and rather than rejecting what I must accept, I am now trying to embrace the concept that I may have information that could prove useful to others. Do I want to become a spokesperson for people with Autism? No. Do I want to travel the world as some kind of Autism Ambassador? No. Do I think that EVERYONE with Autism in their life has the same problems as me? Probably Not. By conveying to you my daily, weekly, monthly and yearly struggles with Sam, I am trying not ONLY to enlighten you, but also lighten my load of the mental burden that is EXISTING WITH AUTISM.

I'm going to use a scientific approach of communication. Not that I am a scientist, but I'd like you to appreciate that although my descriptions may seem clinical it is sometimes helpful to "switch off" the MOTHERING mode and "switch on" the SCIENTIST mode. When the MOTHERING MODE is on my mind becomes clouded with emotive issues, such as what ever fucking possessed my mind 20 years ago when I thought I could bring people into this world and try to MAKE THEM HAPPY. Whatever ROMANTIC notions of happiness I once had about family life have been shattered. Whatever ROMANTIC notions I had about raising happy children, watching them grow and learn and having an opportunity to thrive and flourish in a country with a beautiful climate and plenty of optimism, have been shattered. I am not the person I was before Autism. Everything I say and do has now been tarnished and tainted with the knowledge of her existence in my life, and the fact that I'll be eventually forced to make the heart-renching decision to either live with her forever and go completely insane myself, or put her in a group home of some sort and leave her there amongst strangers, which will probably also make me go completely insane through guilt. Either way, I will go insane. Perhaps I'm already there? You've seen the movie, ONE FLEW OVER THE CUCKOO'S NEST? Yeah well, it's worse than that ~ far far worse. Her vulnerability at being unable to comprehend or make sense of her environment is the reason why I am aghast and disgusted at movies about psychiatric hospitals and the torture of patients ~ mental and physical. Once you walk over the threshold of one of those places, it seems to me as though you're life is as good as over ~ institutionalized with a bunch of other insane people so that if you weren't insane before, you most certainly will be before too long. The thought of your own child in one of those places is really enough to bring any Mother to her knees, but the knowledge in the back of your mind that the factors culminating in her incarceration have already started to happen. The "wheels of inevitability" are in motion and the carriage has begun its slow descent into the depths of hell. And I brought this sweet child into the world with absolutely no perception of the real UGLINESS that exists in the world and absolutely no resources to draw upon to fight against them :(. The guilt is sometimes palpable as a lump will form in my throat as I'm typing my feelings. To think that something that started out as such a wonderful idea ~ to bring someone into the world that I could love and that could love me in return (and those around her) ~ instead her mind is a prison of frustration and anger and a life of hell for those entrusted to her care.

Actually when you look back upon my life, you will find it amazing that I ever came to decide to have children. It was dysfunctional, no doubt about that. Was I still capable of giving and receiving love? I had thought so, I really had. Now it would seem that my patience, attention & love has been completely drained out of my body and Samantha is the sponge who has absorbed it all away from my reach. Sometimes I feel like lashing out and hurting people. This was never like me before. I don't consider myself a vengeful person and indeed I've always considered it a nasty trait and best avoided at all costs. The pain of Autism can be acute for the sufferer(s) because of the sheer distaste for the job. I mean, who wants to shuffle someone around from pillar to post, clean their incontinent messes and stop someone from bashing their own head in? Not me, FUCK not me. But here I am doing it ~ for my OWN FLESH & BLOOD. What a LIFE OF HELL!!!!

So you can now understand why observation has to be contained in the scientific crevices of your mind and any conveyance of that observation should be documented in such a way that can be read and understood by interested parties. I guess they don't wanna read through a bunch of pages of me saying FUCK FUCK FUCK FUCK FUCK!!!
So the next post associated with Autism will be hopefully more focused on her and the strategies that I use to keep her under my control with having to control her too much. After all, its HER LIFE. She should be free to explore it, even though it gives her pain. No one said when you arrived that it was gonna be a smooth ride. No one said when you arrived that your passport to paradise awaits, all you have to do is stick your head through this tiny slit in your Mother's vagina and you've made it ~ HOME & HOSED!

And no one said you couldn't have a bit of a laugh sometimes at her expense. I used to think it was cruel, but now I just try and get what joy I can from this experence knowing that I'm doing the best I can. I'm only human. I'M NOT SURE WHAT BEING HUMAN IS MEANT TO BE ALL ABOUT, BUT THAT'S WHAT THE FUCK I AM!


PS. If you have any DIRECT questions you wish to ask me I'd answer as honestly and productively as I could. Meantime I'll continue to gather insights and post them here for your information and ... ENJOYMENT????

1 comment:

  1. carolyn,

    I have a step daughter with asperger's so I and my own daughter has it as well, I know what you are going through and if you ever want to talk here is my email addy if you ever want to talk i'm here to listen. You are a beautiful person with a beautiful soul and i consider you a friend and would love to learn more about you as a person