Friday, February 08, 2013

w-a-t-e-r…


When I was a wee bitch, I used to pray and ask God to make my older brother “normal”.  For the longest time I was convinced that the reason God had yet to answer my prayer and “cure” my brother’s autism had to do with my inability to be a perfectly behaved sin-less little girl. 

I woke up one day…just a random day…knowing with absolute conviction that my prayer wasn’t being rejected. 

I just knew that my brother was as he should be…a different kind of normal.

I got it…

…and we were cool.

A different kind of normal has meant different kinds of communication.

I couldn’t just pick up the phone and have a conversation with my brother.  I’d call and talk…he’d respond with a whispered word or two when prompted…but we never chatted.

I eventually stopped trying because the attempts were more about me than him…more about my preference than his…more about my trying to have my brother bend than meeting him where he was.

Fast-forward to the now.

Earlier this week I had my first telephone-esque conversation with my brother…via Skype.

I logged in from a conference room at work.

Bill was assisted from his day program and used his iPad.

It was a reverse of the scene from The Miracle Worker where Helen Keller signed w-a-t-e-r, because I was the one connecting the dots for the first time.

As his face filled the screen, I was the one learning.

He smiled and waved hello.

And then we communicated.

About his day so far.

About how he liked his apple snack, but didn’t want to go out on the community visit later that day…but he sure would LOVE some pizza, just in case I had the power to make that happen.

Then he touched his fingertips to the screen, as if he were touching my cheek…softly humming a little tune… just like he does when we are face-to-face, but this time with a look in his eye that said “you get it now, sis…we’re cool.”

I get it.

We’re cool.

w-a-t-e-r

16 comments:

pooj said...

This made me cry.

Cara J. said...

Touching post - I always struggle about wanting to change people and always come back to the realization that acceptance and letting go is usually the answer. It will happen if it is meant to be.

Lori S. said...

This brought tears to my eyes.

DesertRose said...

I'm glad to see I'm not the only one teary-eyed by this moving post.

Ryan Hauck said...

Alright, who forgot to dust in here last week, cause it's getting all up in my eyes.

Beyond The Political Spectrum said...

As someone who learned he has Asperger's Syndrome within the last 4 years, I more than most people can appreciate a quote from Woody Allen: "Everybody is somebody else's weirdo."

Beyond-The-Political-Spectrum

Jenny said...

Beautiful. My eyes are suddenly leaky as well.

Mary Baum said...

Yup. Crying now too.

the only daughter said...

Lovely

macnow said...

The area I teach in has an above average rate of autism.

I will just say there are a lot of chemical plants (lot more than the normal Midwest city). And it is poor etc. etc.

Anyways, we have gotten Ipads for the teachers, which I will use with the kids in these special needs classes. Many of the kids will act uniquely different, depending which spectrum they inhabit.

The autistic children seem to respond much more then normal; specifically when they can get tactile feedback (move something on screen get instant response, colors, sounds etc.).

Even the severe ones... but then again, how much is me believing that more is going on then what is really happening (I don't know, but getting any forward movement is monumental, so I like to lean to the positive column).

The most interesting thing though, is the children that have a hard time making eye contact (if at all... some are severe), will communicate with you in video chat mode. Now for some people they may not consider it communication... but a blink a focused stair a smile utterance of something close to words never spoken, well color me intrigued.

I did see this thing (not to much long after) on TV talking how Ipads etc. have opened a door to kids who could not communicate easily with direct eye to eye or voice to voice communication.

Now it's no "Awakening" moment per-se; but it does need to be studied, and it definitely is one more tool.

I personally see it as something on the breakdown (in the realm of neurological) having to do with: less forced social stress, instant gratification via tactile feedback, limited and focused interaction on their choice (they can be quick to shut it down when the figure out how).

With a 2D flat surface; some of the flight or fight parts of the brain are not activated as readily, as someone standing next to you.

The frustrations in just normal communication are transferred into a different medium that stimulates different parts of the brain but still feed the main communication pathways (this is backed by some SPEC, fMRI and other brain analysis).

So all these things have been seen, and have also been acknowledged more and more, and hopefully further studies with meaningful incite will happen.


I THINK the most important take away though is this...

...it gives these individuals a little more control in their life as a functioning "social entity" (one thing that is hard to obtain sometimes) AND on their terms.

It is "we" who have to adapt.

So yes NEO you must bend to the Matrix now and then.

Laura said...

Oh, sweet Brother Bill. You put a teary smile on my face, every time.

Anonymous said...

This is a profoundly beautiful piece of writing. Thank you.

mommiedammit.com said...

Thanks Pam. I woke up this morning feeling a bit empty. Been all morning long trying to think of something to make the day worth my while. Laundry up to my @ss, the sink's full again, need to vaccuum... so what. Don't care... then I read this.
Hole filled. Thanks, Che.

flyingcuttlefish said...

""This is a profoundly beautiful piece of writing. Thank you. "" -- I agree =sob=


reposting ...

JDub said...

Soo beautiful!

flyingcuttlefish said...

Slightly related ... I was very moved by this post and sent it around ...

"A young designer creates an ingenious set of cooking tools (with accompanying app) that enables her autistic brother to cook for himself."

http://www.metropolismag.com/June-2013/Family-Recipe/