Evolution

My journey with Brandon has been, like his autism itself, atypical.  Brandon was 17 months old when my mother suggested that I ask the pediatrician a few questions.  He wasn't yet speaking, and he didn't imitate.  He hadn't regressed; he was simply starting to miss the typical milestones.  I was very pregnant with Cady at the time, and didn't know enough to wonder about that on my own just yet.

I was not one of those cute, glowing pregnant people.  I think I mostly resembled a very grumpy walrus.  With sciatica and boobs that belong on a 6" tall Playboy Playmate, not a 4'11" waddling human with Fred Flinstone sized swollen feet.  Suggesting anything to me was an act of supreme courage.  Anyway....

I am, by nature, an information seeker.  Upon being given a diagnosis, I immediately needed to arm myself with as much information as I could find on the internet.  No doubt I overdid it.  But one of the very first things I ever found was Jim Sinclair's beautiful, insightful, and moving "Don't Mourn For Us."   If you've never read it, I encourage you to do so:  http://www.autreat.com/dont_mourn.html

I will forever be grateful that I did.  At the time though, I had no idea I was reading what is essentially the beginning of the self advocacy movement, with a rallying cry of "nothing about us without us."  I also had no idea that it's anathema to many parents, especially ones that fervently hope for a cure. 

It is, to some extent, ironic then that I became involved in what was originally NAAR (National Alliance for Autism Research) and later Autism Speaks.  At the same time I was becoming involved in Autism Speaks up to my eyeballs by co-chairing the NYC walk event, my son entered the LearningSpring School (LSS).  LSS really gets that parental search for clarity in a world that we inherently don't understand.  They respond by providing information, often in the form of guest speakers.  In my third year of co-chairing, one of those speakers was Michael John Carley, Executive Director of GRASP (The Global and Regional Asperger Syndrome Partnership).  Michael was not an unknown quantity to me, but in my universe he was best known as the guy that had opened up a dialogue with Autism Speaks regarding the word "cure."  What he had to say about that, the history of autism and labeling, and why Autism Speaks is so often vilified by the self advocacy community was eye opening.  To his tremendous credit, he laid it out there without an ounce of judgement in his voice.  How he felt was quite clear, but it was not judgemental in tone.  And was the beginning of an evolution for me.

Once your eyes are opened, you can never un-see, only be willingly ignorant.  I cannot afford the ignorance.  Brandon is already 9, and I know that my dearest desire is for him to inherit a world where autism is a difference, not a disability.  I want that thriving self-advocacy community to still be there, helping him to have a place in this world.  I still see value in Autism Speaks, and I suppose I always will - I am, after all, an NT parent, and I see the world with NT parent eyes.  However, I also see that we have caused so much pain, done so much damage, to the self-advocacy community.  How do we bridge that gap?  I don't know.  My thoughts, my actions, are still evolving. 

Evolution

Speak.

Please speak.

Too loud!

No more imitating animals, OK?

Great story, but it's not real.

No, it's not real.

My reality, or yours?

Is mine really better?

My world is not perfect, and there must be

A joining.

There must.

Only in the in-between can I leave you

To just be.

To be who you are

All of you

Standing on your own.

I cannot yet fathom from here to there.

We guide each other.