Writing for a Thousand

When I see a fresh piece of origami paper I can see how it folds into a crane. After folding the bird I realise I had forgotten to bring out the instruction book. I am a Visual-Spatial Learner (VSL), I think in pictures. When I hear, see, or remember the word “banana”, a picture of a banana pops like a surprised light bulb into my head. This banana is every single banana I have seen or eaten, from a freshly peeled plantain to a spotted, rotten banana. While I enjoy these images, the other effects of a VSL brain still pursue me like the tail on a dog. I find that I can’t write neatly and I have troubles with taking notes, finding myself doodling on the side of my notebook, if I can find myself, when I can find my notebook. As someone who thinks in pictures I can see a thousand things in every image but cannot conjure a single word to describe one of them. 

If, as we say, a picture is worth a thousand words, then why am I not allowed to ditch the written assignment and sketch this essay for a comparable grade? According to Professor Gerald Grow, a retired journalism professor who helps visual spatial writers adapt, VSLs have difficulty with expository writing because their thoughts do not “translate” into prose. Expository prose, regularly demanded of high school and college students, is assembled through combinations of story, focus, sequence, drama and analysis. Grow posits that VSLs become effectively disabled by that process. Unfortunately, this is true for me, and I still misspell simple words and trip over my sentences; my syntax suffers, and so do my readers. The organisation in the mind of a picture thinker is different from the sequencing demanded by academia, who says, “Get Organized!’.Get Organized? If called to organize, I find difficulty in arranging my baggage in a recognizable order in both real life and real time writing. My backpack looks like Frodo's worst nightmare, but thanks to my spatial awareness, everything in my backpack is mentally mapped out for the journey on pictures in my mind. Like my backpack, my thoughts are all jumbled and spewed untidily across the page.(great for poetry, not so much for sentences) Outlines do not aid me; graphic organizers that look like spiders MIGHT rearrange the chaos in my brain, but only on a good day. After many detours and attempts at sanity, I give up on that nicety, go with the chaos, and I always manage a paper during the last legs of the journey, but the journey itself has been rife with strife.

I am a visual thinker - there are some metaphorical pros, but there are far more debilitating cons. Strong visual memory with moronically weak memory for words  cripples my attempts to communicate verbally or on paper, despite (paradoxically) verbal strengths that most academics would envy. Four paragraphs... twelve hours; yes this is a disability. Two more hours and I might get This One Small Paragraph right. Every artist dreams of walking among the mountain folds and valley folds of origami-like creations. Its like walking on water! The stormy sea of writing, however, is ever and forever a sinking experience.

NCM

Wild Child -- Freedom to be...

In the book (and movie) The Secret Garden, Dickon is the essence of the Moor. His eyes look like "pieces of moorland sky," and he smells like "heather and grass and leaves..." and sits beneath trees with his
wooden pipe, charming woodland creatures. Wild Child.

Wild Child lives here between nine thousand acres of inland delta, an estuary, the river and the sea. Folks much prefer his wanderings with bamboo flute than with trumpet. Understandable. Smiles follow as he heads for water with fishing pole in one hand, breakfast in his other. Neighbors hand him cookies for his morning snack. One proffers a jar for catching minnows for her pet turtle's lunch. After winked mutterings of turtle soup, he and his math book and leather-bound sketch book, disappear. I'll never see fish, but oh, the salamanders...

Wild Child designed and planted my garden. His arrows lopped off the tops of new blossoms and his bunnies ate the greens. Two nights a week he worked at the rock gym. His skis and snowboard lived in the kitchen. Eventually he rode a new red bike to college and returned with.....salamanders. Go figure. 

Freedom to be. Perhaps that's the secret.

Shhh. Don't tell. They'll think I'm totally crazy. But, perhaps I'm not. My ASD, ADHD, anxiety ridden, EFD son pretty much played his way to college by his mid-teens. He played with fishing poles and skis and kayaks and metal detectors and homegrown herbs in a frying pan...and with metaphorical thinkings, and lyrical tinkerings and a cultivated tongue dedicated to argumentation. Tired, I am.

I stopped reading the books about how the world thought he should be. After all, even he began reading them and laughing along with me. I ignored all the voices telling me that he should or should not do this or that by age whatever or even how this professional or that predicted he'd be. I turned a deaf ear to threats that I'd be forced to put him in school and the other deaf ear to those who pretended that I damaged him beyond belief or worse...they pretended that we didn't really exist or that I asked for this.

(Oh, yeah...every woman just dreams of living life like this? I don't think so!! Really --- worms? fishing poles?  metal detectors? )

I learned a lot about perception. I learned that I like mine. I learned to appreciate and cultivate intuition....mine and his.  He'll need it to catch the next creature or two.

Freedom to be.

Nathaniel on *Communication*

...when my ability to remember words is in the lowest 1%-ile and my ability to remember their definitions is in the top 1%-ile. Imagine the frustration of being able to write a poem in twenty minutes or only one sentence in twenty minutes, but mainstream education only cares about the sentence. (You'd think they'd take a break once in awhile!) How can I carry on most conversations when the movie you just mentioned has just replayed, in its entirely, in my head but I can't recall your last three words, or last three numbers you just told me, or the name of the movie, for that matter. How do I know that you are speaking to me when there is not rhythm or rhyme or music to cue me that the sounds I'm hearing are voice instead of cars, or planes, or a cat's purr -- all sound the same. All is loud. All is silent. I understand all. I understand nothing.

~NCM 2012~

Tweaking

I tried to hold back a giggle. My son's neurologist had just told me that I was trying too hard to "tweak" my son's strengths. If you ask most parents of nearly adult ASD kids, though, most of the successes arrive packaged in ornate "tweak." (Yes, tweak is a noun, here. Just saying.)

These kids have problems. Acknowledged. They are often not on time, or are on time at the expense of not being prepared (or dressed), or on time without the items they need to have with them. They are unable to read how others feel about this on this particular day and in this particular place and are unprepared to deal with the reactions of others, so the anxiety factor can be extreme. With the increase in anxiety, cognitive ability can sink into places where it cannot be found in time to recover face. There are days when they will ace a test, and days when they can answer about two questions on that same test. In a world that thrives on reliability, all of these problems are daunting for our teens and our culture has not decided to place value on skills without the conformity to current structures.

This doesn't mean that autistic teens can't learn and grow, and it doesn't mean that there are no pathways open for higher functioning young adults. BUT, it takes a lot of TWEAKING!!! The system needs a bit of tweaking. The teen's skills need tweaking to push then into a bit higher level to compensate for the problems, and the problem areas need tweaking to minimize negative effects. Parents need to tweak other adults, dropping bits of information that others may not understand about autism, Theory of Mind, motivation, demand avoidance, distractibility... AND strengths. And parents need to be creative, inventive, constantly tossing the works into the air and, well, tweaking the mass of options as it lands. That's a lot of tweaking and tweaking takes time and energy and uses up personal emotional and adaptive juices of the parents themselves. Life is, well, a Big Tweak.

One of the toughest aspects of the Big Tweak for me was what others expected of me, what others didn't know about how juggling affects a lifestyle (far from 'normal'), and how critical others were of the tweaking. I've had to tweak my hopes, my expectations, and the usual style of planning that parents of fairly typical kids use to launch their own children.

When someone criticizes me for tweaking, I look first at how much help they've been in the process of raising my son. Most of the time there has been little help or support from those who think they know better. I think about that, then, with a little anxiety pushing me, I giggle, and muse over  the next tweak.

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

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.

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.

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?

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...

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

Why now?

Over time, sometimes something happens to mothers (parents) whose child doesn't respond to her voice, her affection, with true interest of his own. Even into teenagerdom, parenting an ADHD or ASD child can still require extra hours a week, and often extra hours in a day. For me, it was mostly because I had to make sure that my son was facing me and looking at my face, in order for him to pay attention to what I said, or even hear what I said in competing noise. Of all the extra awarenesses on my daily plate of accommodations in the care of my child, that was the most difficult. It created extra steps, phsyically, in intent and attentionally, in regard to simple communications that most households take for granted. For me it was exhausting and left a huge hole in my desires to connect with my child.

For many reasons, partly because of a lack of critical thought about how much impact ability to detect nuances in human communication can affect kids with even the highest verbal IQ's, my son didn't have a Speech and Language Pathologist working with him until he was seventeen years old. Once that happened, though, it was only a few weeks before during one of my slip ups in not gaining visual contact with my son before asking a question, it hit me that he responded, and responded with proper semantics to my query. I was glad that he wasn't watching my face because I couldn't keep the instant rush of tears from streaming down my face.

I'm not one to hide emotion from my son. There's no reason, to, really...or hasn't been a reason to because he usually can't identify those nuances on people's faces, not until a peak of intensity of anger, joy, or pain has been reached. I didn't want to hide the joy from him but I wanted to hide the anger that hit me like a speeding train, anger over having asked for help for more than a dozen years and being turned away. I lost a life -- a career, any kind of normal social life, self-esteem over my own worth, and nights and nights of lost sleep -- because my kiddo couldn't learn on his own to discriminate sounds.

We talk about this, he and I. It's a little strange because he's a psychology major and has already taken 300 and 400 level classes in abnormal psychology for which he wrote about the mother/child issues regarding unresponsive children. He's angry, too, because now he 'feels' what it was that he wrote. There's a gnashing of teeth at knowing that he didn't get to have and do what was considered normal in the social realm because he simply didn't understand on a necessary level that people were talking. And yet, he's been more joyful over living in the last four weeks, too...as if a bit of a miracle came into his existence. And now we attempt to move on...

And so...I write.

Bits and Pieces

I'm sure there will be lots of bits and pieces.

I both love and hate the puzzle piece emblem associated with autism. I live with the 1000 piece puzzle and worry each edge daily, and its often daunting. Some days I'm reminded that some puzzles have two finished pictures, one on each side. I try to ignore the enormity of that, but I shouldn't because my son is twice exceptional, sometimes called 2E, gifted with a physical or emotional or intellectual disability.

While this emblem looks like one of those pieces from large puzzles, pieces with deep cut innies and jutting outies and corners and curves, the feeling what I get from the 'world of autism education' is a vision of a chunky toddler puzzle -- too predictable in nature, too easily shoved or dropped into a pre-set hole in a piece of wood. That bothers me because I don't see any child that way...autistic or not, gifted or not.

Into 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 verbality into my own 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.