The Matrix

I thought that I would faithfully write about the journey in raising my son. The more I wrote, the more solid I became in my convictions to organize this brain that wasn't mine, to train into it some alien pliable form that was not going to stay on track anyway, and otherwise teach what seemed unteachable. Daily writing brought too much verbal thinking into my own visually-oriented mind to allow me to grasp the world in which my son immersed himself. And so...I embraced my own scattered nature, my own visual and spatial world, and became a part of his world. We were much happier -not that the road was smooth- when I invited my son into our world, slowly enticing him into space, a tentative shared space, between his universe and ours. I hope to share insights from the past, present, and future as I continue to ease the transition of this young man into an adult world. The only proven method I use is ages old -- I honor who he is and help him find people and places who do the same... square pegs fit nicely into soft putty that molds around them...and the push into plasticity is gentle.

Tuesday, March 27, 2012

First Things First

I am totally convinced that it's never too early to begin transitioning socially challenged kids into the ways of the adult world. So often I hear parents of adults on the autism spectrum wish that transitioning had more meaning and more guts than tackling the issue of continuing services. Another poignant point is that we enculturate through varying degrees of mainstreaming in schools, totally forgetting that as soon as some of these individuals learn to be kids in our society, we change the rules, and quite abruptly. Some parents are frustrated when they realize that much time was spent on teaching social skills that do not pertain to the adult world, while academics were placed on the back burner. Often these young adult gained little traction in either department. Sadly, when my teenager and I attended a recent two day workshop** on transitioning people with conditions that affect social skills, he was the only person there under age eighteen.

It was, without a doubt, the best money and best time spent in this entire process of transitioning into the adult world. And it wasn't JUST the workshop itself, but for him it was the adult setting...the chance to mingle with adults as a full participant. Braised sirloin tips were a nice touch, too. We WILL do this again, and again...or perhaps HE will.

** Michelle Garcia-Winner and Dr. Pamela Crooke -- Social Thinking
http://www.socialthinking.com

Monday, March 26, 2012

Hope

July 21, 2011

Kids pick up on the darndest things-- never know what mine is going to 'get' of what I do, and what just slides by. Today he was in the basement going through two large trunks of household items that we've collected for him to take with him when, someday, he leaves MY house and adopts his own mess, leaky roof, overgrown grass...you get the picture, right? Lately, he's paid a great deal of attention to what's in there and what needs (in his opinion) to be added to it. Today he decided that he wanted my carbon steel butcher knife instead of the molybdenum one I put in his trunk. He cares? Apparently.

"I really like the feel of the one that's in the kitchen."

Go figure. And so I told him to put a note on the inside of the lid of the trunk that he can, when he moves, trade one butcher knife for the other. I care? Uh, noooooo.

And then I asked him why the trunks were holding his interest these days.

He told me of hearing parents and kids talk about not being ready to be on their own and that he knew he had so much more to overcome than they did for that to happen. "And yet," he said, " "I'm the only one with a HOPE chest."

"Two hope chests, yes. Validation?"

Just a little sideways smile and a nod.

I tacitly took more credit than I deserved regarding this revelation of his. The hope chests were not planned as validation for him, not at all. The traditional collecting of stuff with which to stuff a kid's initial home as an adult was always aimed at young women and I thought that young men should also have that wellspring of necessary items. And I threw in some very nice ones, too...why not... That he saw it as a vote of confidence in him was serendiptous. I'll take the credit, because I know that even when doubtful facts hang thick as cones on a hemlock, Hope matters.

March 27, 2012

Today Nate asked if what he buys for his hope chest has to coordinate with what I've purchased.

Wrahahahaaaa! Ahem.

"Of course it does!" I teased with a dead serious look on my face. (Hey, he's got to learn nuance and intent SOMETIME, especially if he's going to use the contents of those chests!)

He stared at me a moment, then his face clouded over, "I can't believe you said that!"

I took off my glasses, batted my eyelashes at him and smiled sweetly.

"Oh," he sighed, "very funny." Then excitedly he dug into his backpack and brought out a paper bag from the gourmet cookware shop in town, "Mom, this is sooooo cooool..."

Hope. Favor returned. Thank you, son.

Saturday, March 24, 2012

Graduation

June 5, 2010

For many years we homeschooled and even unschooled. For months at a time it was as though he was totally unteachable, unreachable except for moments that were as transient as the weather. Sometimes he'd surprise me and want to do something utterly worldly, like go to camp, go to "real" school, join a theater group and so I'd take deep breaths and switch gears, not ever sure how smoothly any of those gears might turn nor knowing just how to grease them.

He was fourteen when he decided that he wanted to go to school but in a way that was like praying for rain only on the green beans but never on Sunday and please, be careful how much water falls on the corn -- wanting the world on his terms.

Parenthetical Interlude --Yes, lots happened between that paragraph and the next, but all of that will happen here in dribs and drabs and probably not in chronological order.

He wanted to be a part of the world --on his terms--and we moved clumsily from unschooling into school. During and after two years of crises, sleepless nights, joys, explorations, and head banging (literally- you should see my refrigerator door) we discovered and analysed the trade-offs. It's hard to explain to anyone that he lost ground academically because here he was, almost sixteen and ready to graduate, but he learned nothing new academically and fell behind in the fluency he'd managed to grasp in fits and starts at home.

He cried, as we talked, that he'd not been allowed to take AP classes because of his writing problems. That kept him away from his intellectual peers. Paradoxically, he'd been to school for two years and had little to no writing instruction.

We laughed, however, that with graduation a week away he was finally learning to stand in line and march!

At home the books once again migrated from the shelves and pages flicked by to the music of Queen. (THAT gets old!!) The television busied itself with video lecture series constantly replayed until son 'gets' all of the words.

"Back to the business of life," said he as he slammed pliers and wire and a few choice pieces of onyx on the table next to his books.

"Yes. This was more like it," I thought, "perhaps."

"We have to have important stuff to fight about, Mom. This week it's gonna be white holes and black holes and whether or not Hawking is better at narrating his own sputterings than anyone else."

As we return to the familiar freedoms we embrace, we move forward. We don't know where we're going....college?? Let's see....I have less than three months to figure that one out.

I thought that I'd feel triumphant. But I felt tired, and I felt cheated....

Oh, let's just not finish THAT list. Not yet.

Wednesday, March 21, 2012

The Lexicon #2 - Behavior

There is always a reason why someone behaves the way he does. Culturally we label behaviors within ranges of appropriate or inappropriate. Have we left one important category out? What about To Be Expected behavior?

Autistic children are 'punished' for inappropriate behaviors even when those behaviors are predictable and preventable by altering communication styles or environments. If and when that is not done, whose behavior is inapproriate? Certainly not the child's.

Should a child be punished for behavior directly related to adult mismanagement of his disability? It doesn't work, anyway...and yet...this is what we do as a culture, hour after hour, day after day, for weeks and years to autistic children who do not respond 'favorably' to our meager attempts to make them fit into environments they are not neurologically able to negotiate.

That's very autistic of us, is it not?

Monday, March 19, 2012

What's the Buzz?

In one of my favorite candy commercials Bunny wanders about and lays chocolate, cream-filled eggs. During the laying musements, Bunny makes rather hennish clucking, cooing sounds. My personal amusement lies in asking other viewers if they've noticed what's not quite right. Most have not noticed that the Bunny is a Chick...or, rather, that he or she sounds like one. Of course, this doesn't mean that I won't follow a chocolate-egg-laying bunny (clucking or not) to the ends of the earth...like a lemming I will, I will.

Contrary to popular belief, though bunnies do not have voice boxes, they do, indeedy, express themselves with a variety of sounds. Each of those sounds has discernbable meaning, and even humans can respond to their buzzes and growls if they don't mind the quizzical bunny look, or what passes for bunny laughter, in response. Bunny whines, coos, and symphonies akin to Inuit throat singing are not difficult to parse, even for mere humans. It doesn't take long to catch on to their specific warren languages, either.

One of the few noticeable behaviors in my son's spectrum life is perseverant vocalizations. Boy noises are boy noises, but the repetition, especially anxiety-driven multi-sylllable words and phrases, just drives me nutz...and after years of this...I'm more than nutz, but it is getting better because....

Enter the Bunny.

The Joy of Bunny.

The Sound of Bunny.

One of the adorable and endearing Sounds of Bunny is a LuvBuzz. Bzzzzzzzzzzzz. Bzzzzz. It's not really a purr of self-contentment, but usually directed at a person..or another bunny. And the persistent Buzzz, the perseverant BZZZZZZZZZ, reminds me of those cute, fuzzball Star Trek Tribbles...and I smile.

And he smiled. My kid, not Bunny. Do bunnies smile? Whatever. And he noticed that someone in his life, important to his life, smiled at every buzz from Bunny. And suddenly, overnight...

pandemonium
pandemonium
pandemonium
padnemonium

became a soft bzzzzzzzzzbzzzzzzzzzzzz....

and urgently spoken

let's get outtahere
let's get outtahere
let's get outtahere

calmed to bzzzzzzzzzzzbzzzzzzzzbzzzzzzz

beefjerkybeefjerkybeefzzzzzzzzzzzzzzzzzzzzzzzzzzz
spatulaspatulaspatulaaaaaaaaaaaaaaaazzzzzzzzzzzzzzzzzzzzzzzzzzz...

and I can listen to bzzzzzzzzzbzzzzzzz for a very long time, and other people think he's humming along with whatevertheheck whatevertheheck whatevertheheck his IPod is delivering...bzzzzzzzzzzzz.

My Year of the Bunny.

Now I'm hunting for those eggzzzzzzz...

Thursday, March 8, 2012

Can't talk, but I can count...

On the refrigerator a word stood out. TOY. Yes, a red plastic Tee, a yellow O and a green Y. From beneath a shock of red hair, bright blue-green eyes gleamed, and there was a spring of thornylocust tree bush with sticky blossom above one ear. In his hand, a flimsy toy catalog, shoved directly into my face. He pointed.




THAT one? I asked.




Bobbing head..




Lotta money, kiddo-thirty dollars plus.




Sad eyes.




Awwww. Got money, honey? I teased.




Scamper.




From all corners of the house came scruffling and clunking and sneakershoes pounding the floor. Then he reappeared. In hand and dumping RIGHT NOW on the floor several stashes-all coin.

Twenty six dollars worth. Go figure.



December 1996

The Lexicon #1

We share more through what we write than ever before, son and I. Love Google
Docs...what a blessing for us...and I love the snippets of poetry and prose in
the files he shares with me.

I am also happy that he doesn't feel that he needs to share it all. Whew...not sure I want to know, you know.When I checked mail this morning, I discovered three new journal entries that he 'shared' with me.

How 'austistic' of him - no kidding.

For himself, he writes, "The sharing a file is not the same as sharing myself. I feel no sense, no element, of invasion, nor of responsibility."

As I said...

And so, at times like these, despite the huge strides and successes, I realize how very much he belongs to his own world. I am okay with that, and today, tickled to death. For as much as he is
in his own little world, he strokes mine with a different kind of awareness, like a partition of a hard drive.... He is gone on a camping/rafting trip, but cannot let mom be forgotten, or is it that he wishes to not be forgotten... May 2009