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.

Wednesday, April 4, 2012


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.

1 comment:

  1. Update: One of the neurologists that poked at me for tweaking later found that his own son had similar disparities - a huge gap between his innate weaknesses and his innate strengths. And with that family, too, the school and physicians had predicted that there was not much anyone could do, and that the child was not cognitively very able. I asked the neurologist what he was going to do with this revelation that his son was, in many ways, a genius hiding behind a disabling bunch of traits. He laughed and said, "I'm learning to tweak...a LOT."