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.