Awareness Ball and Chain

A couple of days ago he fingered the newspaper as he sipped coffee at the local convenience store. “Autism Awareness?” he muttered at the articles du jour. “I’d like more awareness, but maybe some lack of Autism Awareness.”

It’s no secret that he’d like to be totally invisible in this alien world, this world that others navigate with varying degrees of ease and difficulty, but has little real meaning for him. What makes sense to the people around him makes little sense to him. What they take for granted-- simple things such as following someone’s pointed finger to a destination of their interest, or that the word cat describes a furry animal with whiskers in fonts Times New Roman, Arial, and/or in printed block letters unless... it is used as an abbreviation of a kind of boat, a catamaran.  And there are some days that for him sound is so loud that words are, for lack of a better term, invisible, as invisible as he'd like to be.

To complicate matters, what makes sense to him, most other people can’t begin to understand or imagine. It’s much more difficult for him to find someone who sees unforgettable details in  a painting or can figure out how HE solved a math problem, or who can hear a beetle moving across a rock, than for most people to find someone who gets meaning out of a three letter word.  To many of us, his world is as alien as our world is to him. Imagine his knowing that his world is considered to be the wrong world, even when he’s right. 

Of that, he is quite aware. 

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.