Tuesday, May 27, 2008

Apostasy, Autism, and why we bother to go on in the face of it all.

I'm tired of beating my head against this wall. I want something to change for Vasant and for all of us. It doesn't seem we've learned near enough. In my perfect world we'd be Way Better Parents than we are now, and Vasant would get unlimited time and attention, enthusiasm, patience, encouragement. Unconditional love.

He would thrive.

Instead,he has to endure unfair accusations, cynicism, grumpiness, whining, distractibility and defeatism from the very people who want nothing more than to be able to love him right, just the way he is. But there aren't any other parents here than us, so we have to keep acting like we believe things will get better again, and eventually they will.

Or not.

I think I have faced ugly reality enough - the bloody, self-loathing insomniac face of it - to
know that perhaps there's no Cure here. Autism is the permanent, uninvited guest in this house.
For a while I struggled with the question of neurodiversity - how much I was/am selfishly trying to "convert" someone who didn't want to be. Really though, the question was never so high-minded and ethical; it was just a carefully sheathed quest for the Power to Heal someone else. In my theology there's supposed to be someone else who does that job, but never mind. I wanted to make Vasant all better. I'm the mom, dammit, what else would I want? But now I've faced the limits of my own power (zero).

So what's left now?

What does it look like to accept neurodiversity; just what are we trying to accept here?
There's horrible, wretched, made-for-TV autism, and then there's the day-to-day, not so bad, almost cute autism, and I've seen them both in Vasant. I've seen the "tampered with" (judiciously therapied and remediating) Vasant. He is still CLEARLY on the spectrum; no one's gonna say we were guilty of selfishly taking away his autism. But that Vasant is also happy, funny, strange, angelic, amazing, connected, and alive. The Vasant we're seeing right now is mostly angry, scared, wildly dysregulated, violent, chronically struggling and overwhelmed.

He's suffering.

It sucks and I don't want it to be this way. I don't want us to be like this. Here's the take home lesson:

Autism + hopeful LOVING remediation = weird, delightful, heart-wrenching, occasionally pass for "normal" but never taken for granted (I wouldn't have it any other way - talk about Unconventional . . .)

Autism + anger/fearful control = exhaustion, misery, despair, lost and abandoned kids, weary confused parents pasting on the "life-*#%&-sucks-but-we're-too-proud-to-say-it" face.

Maybe I just needed to get back to appreciating what we have.

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