Tuesday, October 09, 2007

reflections on autism I

So yesterday I spent some time going to some of my online autism groups and found a few sites of adults with autism who do blogs. Some of them made me feel so hopeful for Bub's progress, some of them made me sad in reading about their struggles in trying to fit in a world that is confusing and different for them. One guy talked about how using pot helped him fit in with neurotypical people, that made me REALLY sad.

This kind of tied in with an experience I had about a week ago. I was at walmart getting some stuff and I saw a group of young-ish disabled men with a, for lack of better word, helper, helping them decide what kind of groceries they wanted to buy for themselves that week. I just looked at them and started crying...in the middle of the dairy section of walmart (what a total freak I am).
It's weird what I was experiencing. I was so happy that they were able to go out and do things for themselves, and that someone cared enough to help them do it and help them feel a sense of independence and ability, but sad with the thought of, is that what bub will be when he grows up? And I noticed how people went out of their way to avoid being near this group, looked at them and made remarks to the other people with them, and that made me cry too. Bub is so cute right now because he is so young, and has blond hair with big brown eyes, and a smile that can melt your heart, but as he grows, some of that baby cuteness will lessen, and the behaviors that other people put off to being young won't be as acceptable as he gets older...how is that change in acceptance going to affect him?
After I got a handle on myself (let's just say I hid out in the toilet paper/paper towel section for a good while pretending to be reading the advertisements on the back of a huge 12-pack of scott's TP in front of my face, all the while thinking "I am such a freak"), I went and found that group of young men and their helper. I smiled HUGELY at each of them and told the helper that I really appreciated what she did and God bless her for the work she does!
(of course I started crying again as soon as I got out of sight of them, and hid out by the windex)

So anyhow, as I am reading some of these blogs written by adults with autism, I found one that was reflecting on whether or not she would take the "cure" to autism if it was ever discovered.
She felt that she wouldn't, because how autism manifests in her life is a part of who she is, and she wouldn't want to take away something that is what she is. This got me thinking as well.

I am often asked/pointed out that sometimes I over-analyze what Mr. Man is doing, and that sometimes what he does is normal for any kid his age. And I agree with this, to a point. I -am- hawk-like in my focus on any change in behavior or abnormality in his physical state (like changes in his "out-put"), but do I know what is just "bub" and what is just manifestations of what is going on in his brain? And then I think, where does autism start and Bub begin? Is there a separation at all?
Really, I don't think there is a dividing line, or if there is, it's very fuzzy and fluid, changing constantly. For example, he sees a teacher/aide he likes in the parking lot as we walk up to school, and they wave to bub. I tell him who it is and ask him to wave back. Somedays he just stares at them blankly as we walk up to school, then other days he smiles as soon as he sees them, and still other days he walks blankly for a bit, THEN gets what I asked him after a min. or so and starts waving in his little way (lifts up his hand and turns it clock-wise a bit). So what's going on there? How can I say "on the days he has instant recognition of the teacher and request, THAT is bub...on the days he doesn't or has delayed reactions, THAT is autism". I think that kind of mentality is crap. It's ALL bub. This is who God created him to be. Is this the total potential of who he is created to be? I don't know, but I will when we get to heaven and we are in our perfected resurrected bodies. I am thankful that I have that hope when things are hard, and he tries my patience, like pulling off his dirty diaper and smearing poop on the carpet, or intentionally spills his juice on the floor to watch the liquid flow.
Anyhow, hope I wasn't too melancholy today- prolly hormones, or something. *wink* It's amazing to me that I'm not back on zoloft yet..heheheh. (maybe I shouldn't laugh too hard at that one) *grin* you know, self-fulfilling prophecies....*erk

NUBS to all!


  1. ok. just making sure i didn't miss anything...what happened with the g/f day of excess???
    love you!!! haven't forgotten lil man's birthday, ok?!?! miss you all, crazy around here. i'm working on it!!!

  2. Decided NOT to do day of excess...Poor little man's got enough goin' on in his gut w/o me screwing MORE of it up....
    I'm not going to retest him on gluten until he gets over all these "1st time in school" colds. (NEXT SUMMER?!?!?!? ---IF---- he doesn't have school DURING the summer....we'll find that out in the spring ARD meeting after his progress has been duly recorded and reviewed.... *sigh*
    All the this fuss just to help him get the support he needs so he can learn to talk.



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