Sunday, May 28, 2006

nobody's crying....



I hope that everyone I shared this video clip with will read OUR rest of the story...
I was surprised by how much that video clip bothered me. I was simultenously glad for the insight into the daily challenges that the girls and I faced for the first three - four years of their lives and repulsed by the hopelessness and "pity me" gist of it too.
I can't speak for anyone else and I certainly do not blame the girls for this, but when they were little and tag-teaming me with the endless tantruming all day and most of the night, and I was exhausted, and the a lot of people in my life were blaming me for what was going on or blowing off my tenative concerns with, "Oh, all kids do that," I would have been really thankful to know that I was not a huge f-up and that my kids were not defective and unreachable. That there was an explanation for all the screaming and self-injury and there were things I could do to make our lives more manageable. And that, in fact, all kids did not do what the girls were doing.
On the other hand, from where we are now, the hopeless, helpless, victim angle of this clip really bothers me. Until I read a post about the clip at a blog that is, for lack of a better expression, "Pro-Autism," and many of the subsequent comments, I had been unable to put my finger on just exactly what bothered me so very much. The video paints an entirely incomplete picture of autism, or life on the spectrum in our little corner of dysfunction junction anyway. Whenever the joyful, the unique, and even the mundane experiences of life on the spectrum are left out, it does a huge disservice to my children (I am trying to be careful not to generalize anyone else's experiences) and to society. It cheapens the contributions of people who are on the spectrum and it asks so little of the communities that they live in.
I made a similar comment at the aforementioned blog and afterwards I knew I had to post it, if paraphrased, here.
We've come too far and worked too hard for anything less.
__________________

Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces.
I cried out to the LORD in my suffering, and he heard me.
He set me free from all my fears.
Psalm 34:5-6

1 Comments:

Blogger Trisha said...

I wish my Windows media player had been working correctly so I could have viewed the video.

You totally inspire me to be a better mother, Susan!

BTW, do you have any suggestions as to how to explain Autism to a 5 yr old? Ryan was very curious, especially since Stacy's son has Autism, and I wasn't sure how to explain it to him in a way he can understand.

11:18:00 AM  

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