by BrianRobinson
Aug 17, 2011 | 1818 views |  0 comments | 28 28 recommendations | email to a friend | print | permalink

Xan started school again.  He's already in 4th grade, and if his past years are an indication, he'll meet his goals before the end of the year and start to work on next year's.  For those of you who don't have kids in special education, they tend to work to what's called Alabama Alternate Assessments, which are standards perhaps a little lower than the usual ones.  Since Xan's so intelligent, we have him taught to the usual standards and beyond, as much as possible.  There are some things that may be beyond him under the usual standards - such as writing out answers - but in special ed he is allowed some leeway, like pointing to the correct answers instead.

It's a balancing act, pushing him to achieve everything he can while bearing in mind that some things he just can't do.  We keep him in special ed so he can take advantage of that leeway, and also so he can be allowed to get up and walk around if he's getting too frustrated or take a break, things that in a normal classroom don't happen.  We'd love to see him in a normal classroom, but that's not possible right now, so we balance the special education classroom with higher standards for him.

All parents are used to figuring out the perfect balance in many areas - independence vs. obedience, or trust vs. checking up on.  With Xander, we have some others as well, both unique to him and common with other autistic kids.

Past research into autistic brains have shown a part of their brain, called the mirror neurons, is deficient.  The mirror neurons activates when a person watches something unfamiliar to them, and it actually fires off in the same way as if the watcher was imitating the new action    Say a child is watching someone juggle.  The mirror neuron area would be firing off the coordination of the hands, the eyes watching the balls float, the timing of catch and throw - which means the child can at least imitate the action, if without success the first time.  He'll have the rough idea.

Autistic people tend to be lacking in this area, which means new tasks for them are literally learned from the ground up.  While babies and toddlers can watch their parents do household chores and know roughly what to do in imitation.  Monkey see, monkey do.  For autistic people, they don't get that layout.  They have to start from scratch.

This can make everyday tasks and chores be tougher and take longer, and as a parent we have to decide when he's tried enough and any more would be of no use.  Then we help him, or take over.  It gets done, but he loses out on learning.  But even then, it's not that easy.  Is he having trouble with the task itself, or is something else causing problems?  For example, let's say a child is having trouble washing himself in the shower.  Just won't do it.  Is the issue they haven't learned how to do it yet, or perhaps the sound of the water falling bothers them so much they have to cover their ears?  Or the muted light from the closed curtains seems so off they can't adjust?  Or the touch of the slippery soap feels odd to them?

Where do you draw the line there?  Clearly a child needs to learn how to get clean, but what if the very environment to get clean in is a minefield for them?  What do you do, meet them halfway and do some, or only make them take baths, or use liquid soap, or...endless possibilities and endless points of balance, ranging from forcing the child to do it regardless of individual difficulties to doing it for them, each one with benefits and costs.

To take another area, since Xan's more nonverbal than most, we used to take any words from him as a request.  So he would demand his favorite songs by saying the title.  We let that happen for a while, but now make him actually ask, can-I-please-have.  He's learning to use whole sentences as we push him farther.  Sometimes we tell him no when he demands instead of asks, hoping he'll learn to ask instead of stop talking altogether.

How about rewards?  This week Xan got his AAA ratings, which he aced.  So I let him have some sweet tea and some strawberry cheesecake Jello, which was more sugar than he usually gets.  So he stayed up a bit later.  Luckily, I had managed to get a good level, where he was justly rewarded but not so much he got hyper, which leads to late nights, which leads to cranky mornings, which could lead to a fit or even a meltdown.  Sometimes he can't be rewarded like he deserves, because that will cause problems that will be worse.

And as I addressed back in an early posting, there's a balance between won't and can't, and that's sometimes the hardest to find.  Since he's intelligent, we push him a lot, and sometimes it's hard to know if he's resisting because he's had enough, or because he can't do the task.  Those are the ones that haunt me the most.  I've long since accepted I'm not perfect, not that there was any doubt, and can accept the usual errors of parenthood.  But to get mad at and punish a child for someone they are not capable of doing is a special kind of hell for the parent and the child.  It's like kicking a puppy for not doing algebra homework.  Add to that Xander's smart enough to know that faking it can get him out of stuff he doesn't want to do, and now you're navigating THAT minefield at night.  Blindfolded.  During an earthquake.

You want your child to do everything they can do while not forcing them to do stuff they can't.  It's hard to get that scale right in the middle, where effort and lenience are perfectly in balance.  You can only hope you're not so far off you do damage instead, and for autistic kids and their parents that balance point is often a lot harder to get to.

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