Take Me Out To The Ball Game!

Saturday, October 3, 2009


A very well known advocate for kids/people with autism recently wrote an article about Asperger's and she said there's nothing "mild" about Asperger's (also called "high functioning autism"). THANK YOU!! If I were still in the same state as she, I would kiss her on the lips.

No there's nothing "mild" about Asperger's. It's not "Autism-light". Not only for family members who are witness to so many tantrums, rigid rituals and monologues that have interuppted conversations, meals, quiet times or telephone conversations, focused a topic no one was talking about or is interested in in the moment. No, the most important thing is that it's NOT a "light" condition for the child living INSIDE the "bubble" (the code my husband and I have given it so we can remind each other at key moments that our daughter is fully engulfed in the 'bubble" and to filter ALL her words/actions accordingly). My daughter KNOWS she's different and is constantly trying to reassure herself that her thoughts and characteristics are the total result of having AS. She's trying to reassure herself that she's NOT a freak. I've lost track of how many times I've told her she's PERFECT just the way she is because this is who God has created her to be; that she has an amazing mission here on earth and that she is loved in a powerful and mighty way. But maybe on those occasions (far too many for me to comfortably admit) when I am impatient with her, when I QUICKLY go from zero-exasperated (sp?), when I have my own Mommy Tantrum, I'm really showing her that there IS something wrong with her.

It's exhausting making the world okay for her because there are MANY days when NOTHING in her world is okay.

One of the key components of autism is lack of trust with anything/anyone outside of the person's "self" and I try SO HARD everyday to show her love and acceptance, but do I wipe it all away when I've having one MY moments of being completely overwhelmed? Aren't I just validating her already known suppositions of her world that nothing can be trusted and it's better just to stay with her rigid patterns and completely instrumental way in which she deals with her fellow human beings?

Sometimes it's all too much. A highly verbal daughter with Asperger's does not equal a highly functioining daughter with a "little bit" of autism. For my daughter it means that her beauty and brains expertly bely the rigid thought patterns and inability to have a dynamic emotion sharing relationship.

And now I've just painted a really grim picture and I feel guilty. As if now I should go on to describe how much fun she is, how great it is to partner with her in her home education, what a joy it is to watch her blossom as a musician and how it makes me so proud that the little neighbor children (all younger than she, but that's by God's design, not because we have neighbor kids who are her age that won't play with her) adore her. But I'm very tired today because there's nothing "mild" about Asperger's. I think I'll take myself for a bike ride on the beach.

My daughter has autism. My daughter has autism. My daughter has autism. My daughter is BRILLIANT, beautiful beyond words, has a heart of pure GOLD and she has AUTISM with a capital "A".

There are no doubt legions of acquaintances and family members who would argue with me on that point simply BECAUSE she is brilliant, beautiful and has a heart of gold. But none the less she fits an overwhelmingy majority of the key characteristics to a tee. This is VERY hard for me to "admit" in writing, as if I'm betraying my daughter at the very core of who she is. But it's not a character flaw is it? No, no, no, no, no. I tell myself this a thousand times a day (as if to reassure myself) in hopes that reminding myself will serve ME in someway to be a better mom FOR her.

What I fight against almost every minute of the day is the nagging thought that she's "fine" and that I've somehow put all this upon her, over time by NOT being there for her in her darkest hours of her infancy and her toddlerhood. And I don't mean physically. I mean that bewcause of my own spiritual and emotional brokeness I wasn't htere for her CORE. That because I was so lost in my own garbage that I wasn't able to pull her out of the slow moving whirlpool of not being able to reference, not knowing where she was at in time and space, and the inability to "read"people and situations. There's a HUGE part of me that knows that this line of thinking is no doubt helping me stay stuck and that the mud will only grow thicker and murkier and yet in the middle of another meltdown, in the middle of another episode of her word-smithing every word that comes from my mouth, in the middle of her interpretting everything SO literally and the utter exhaustion that comes from it all, I DO wonder.

So what if she's NEVER been able to establish or maintain eye contact (which I now know to be just "window dressing" on the house of dynamic emotion sharing relationships), so what if she was born in complete sensory crisis, was there something in the fabric of her formative early months that I could have "done". All those paralyzing questions prevent me from living in the here and now. And the here and now is where she needs me.