Friday, July 11, 2014

Encountering My Twin...

"Super Gabe" and I at the mall in Northridge, CA

I'm excited, I live in a somewhat isolating environment...I don't see a lot of people right now.  But my friend Sara who has ACC like me, and her son Gabe who is on the autism spectrum are both coming to spend a week's time with me.

It's not just that I've been isolated, I'm excited, because as Sara puts it, she's my twin, but with a vagina....and that's pretty accurate! LOL  Plus her son doesn't have a dad in his life, and he really has fun and attention when he's with me.

We took him to the ocean for the first (that he could remember) time this first he was scared, then Sara said that he wouldn't stop talking about it afterwards.

Where I live, there is a local water-slide, and I'm hoping that he loves that too, I know I will!

Sara and Gabe!
When I say "twin" I mean more of a fraternal than and identical one.  Sara is her own person, and she is different from me in many important ways.  While she has ACC, and has a similar affect as I do in many ways, she's played it out differently.  

She has three great kids, and I couldn't for the life of me imagine raising kids.  Perhaps I could now, but I'd been without proper guidance for so long I'd not built up the skills and tolerances that she had.  When I think about the awesome responsibility of raising children, it just dumbfounds me.

I won't speak for Sara, although I'm sure she'd agree, there is something really special that two ACC folks can share that no one else can possibly understand (accept for another ACC folk.)  It is at once life affirming and and self affirming for us to be around each other.

When she and I would hang at the mall together with Gabe, we would just tear the place up, become chatterboxes and enjoy each other's company immensely, not something I do easily with others.

I feel that it is of utmost importance for ACC adults to have some kind of connection to their peers.  the NODCC .  There is the National Organization for Disorders of the Corpus Callosum to which most of us belong.  They have a meeting every two years for parents of ACCers as well as ACC adults.  I've not yet been able to attend, be it for time or money, but I'm hoping I can go to the one in two years (I'll have missed this one.)

I find it frustrating that the ASD "side of me" has been so researched, and well funded, but ACC is still considered an "orphan illness," really rare, but this isn't the case in truth.  Science says that between 10-14 thousand births, one is born with a disorder of the Corpus Callosum.  That really is not very rare.

This is horrible, actually, that ACC is not scanned for and more identified.  As I've mentioned in other posts, even the most well adjusted ACCer has cognitive and behavioral traits in common.  There are many walking around diagnosed, some with severe problems in life, as I had before I was diagnosed properly.  Not only do these walk around in life with self judgement and guilt, unnecessarily, but early intervention is always key to a better outcome in life.

When I was a kid, Neurologists were trained that if they detected ACC, they many not even inform the parents of it, if the child appears "normal."  The difficulty with that is that it isn't until age 11 or 12 that much of the ACC affective traits become obvious, and all that time will have been wasted.  Neurologists are not all that much better today, but there isn't an outright dismissal either.  To be fair, it is only in the recent two decades that any research regarding those born with ACC might help make a difference in lives.

I'm working on plans to spread public awareness of ACC including tv/entertainment coverage.  It is what is really needed.  So much more research and development and intervention needs to occur that is still waiting in the wings.

15 hours and counting, SO excited to see you guys! <3

Justa Guy

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