Sunday, May 4, 2014

April Is The Cruellest Month

I didn't write any autism posts in the month of April.  At least on this blog.  In my head?  Many.  Working titles include "You're a Grand Old Flag" for my son's great enthusiasm of our nation's symbol, very much tongue-in-cheek;  "State of the Union: Our Second Year With Autism" and "Autism Junction, What's Your Function?" on functioning labels, such as high or low functioning autism and my ambivalent feelings about them.

I may go back and write those posts because belieeeeve me, I've got lots of words to work through.

What I want to share about our particular experience down this road is summed up beautifully by Jim Walter of  Just A Lil Blog in his post Love for NT Parents  (parents of neurotypical children):

"I'll probably realize I'm wrong at some point, but I feel like I've reached a really good place with Lily.  I feel like I accept her completely.  But before I got where I am with Lily today I wondered how to accept autism.  Before I wondered how to accept autism I wondered how best to spread awareness.  Before I wondered how to spread awareness I wondered what had caused it.  Before I wondered what caused it I wondered whether I shouldn't have vaccinated.  Before I wondered about vaccines I wondered about cures.  Before I wondered about cures I didn't have an autistic child.  Each new thing I 'learned' either built upon the last, or completely razed it to the ground and rebuilt it from scratch.  I was totally adrift and I needed to understand.  Needed to because my daughter was autistic.  No other reason."

This the paradigm through which I am working.  This year has been spent wading through the incessant causation theories (though a new one will slap me upside the face from time to time) and taking another view of autism by listening to autistic voices.

The very word autistic really tripped me up.  It felt like an insult.  A lesser-than, thinly veiled synonym for the "R" word.  I would hear it and assume the speaker had narrowed my child's existence to his scores on the DSM IV: Difficulty with social interaction. With communication.  Repetitive behaviors and obsessions.

But I read something that shed some light on what was really bothering me.  The word autistic simply reflected back my own fears about my child: that he would been seen as something other. And on some selfish level, that would reflect poorly on me.

I wish I could find the exact quote that started this shift for me, but an autistic adult, as the writer self-identified, used the example of a child's superhero toy.  The toy comes WITH special additional features! Removable cape!  Anti-gravity belt!  The writer pointed out that the person-first terminology  "individual with autism" makes it sound as if the autism is separate from the individual, something to be picked up and put down again as needed.  And if you've read my earlier thoughts, you know I agreed with that wholeheartedly.

But the thing is autism isn't an accessory.  It cannot be taken off.  It's a way of seeing the world.  A way of being.  A very human way of being and thinking.  A different way, granted.  A challenging way of being to understand as an outsider.  But not other.  Not less than.

And I began to be okay with it.

I can use the term to describe my son.  In brief interactions in public with new people, it can be helpful.  To the waitress who is trying to win J over with charm and questions, who turns out to be a parapro in an autism classroom when I share his autism superpower.  Life can be cool like that sometimes.

I always use "on the spectrum" or ASD or "with autism" with discussing the topic with other parents like us, but I've made my peace with autistic.  Baby steps.

I've suffered some autism burnout, perfectly explained in Bec Oakley's stellar resource, Snagglebox.  Most nights I've come to bed with a new theory or treatment to fret over as Alex listens, sometimes chuckling that "Babe, you worry too much." Still other times holding me, like he did on my birthday after our date night.  The dinner that I have to excuse myself to the bathroom to pull it together. Back at home on the couch as I just sob from trying to play god while simultaneously worshipping at the altar of AUTISM, a mysterious entity that consumes my thoughts and emotions.

Autism is a terrible god.  Anything other than God is a terrible god.  I very clearly got the message that the place of highest affection in my life was solving autism for J.

So this year, after the big April autism awareness and acceptance push has ended and other worthy causes take its place, I still work toward the goal of  fully accepting my kid, just as he is.

Spoiler alert: He's a great kid and we've done big things together.  In more ways than one, we've made it to May.

"APRIL is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain."

T.S. Eliot, The Waste Land


David and Kate said...

Well spoken, Melissa. I think of you guys often and I will be praying for you. God loves you guys so much!

Jaybird said...

Thanks, Kate! You're a class act.

Jolene Philo said...

Melissa, you put into words the struggle so many parents of kids with autism and other special needs wrestle with daily. Thanks for being so transparent and for posting your link at's link share today. Jolene

Jaybird said...

Thank you, Jolene! I'm touched you read this and really impressed as well. Thank you for opening up your site! Melissa