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reneekytokorpi's comment in a previous thread made me think. In particular:
This is so helpful, and I'm very grateful that you're sharing. While I'm not familiar with Asperger's or Autism, my family struggles with my brother's Kleinfelter's and your insights are helping me explain things in new ways. They're not related disorders, but the coping skills and ways you approached things give us fresh things to try to clear up confusion. Thank you!


Coupled with my oldest son's eighteenth birthday, made me thoughtful.


Before I start -- or before I continue -- I want to make one thing absolutely clear, in case I haven't, or in case it's not: Parenting is a process unique to the individuals involved. Our parenting decisions, between the two children, differ because the two children are different. When I speak definitively, I can -- because I'm speaking about my experiences with my oldest son. I'm so enormously happy and grateful that people find some of these posts useful -- and the best part is when people pick elements of my experience that resonate with their own, even if on the surface their situations are very different.

Even between two ASD children, there are going to be personality differences. My oldest son is vastly more oppositional when upset than some of the ASD children I've met, who were compliant, peaceful, and able to bled into a normative classroom, with only some marked difficulties of development, and a distinct disinterest in any socialization whatsoever. Definitive about my son? Yes, I can be (sometimes). But I can't be definitive about your son. Or daughter. Or husband, wife, brother, sister, parents or self.

I've wanted to write about my experiences with my son for years, in part because I thought people with similar children would find it helpful -- not even because they'd agree with what I'd written, but because it might make them feel less isolated. I've been really surprised at the variety of responses these posts have received because many of you don't have children, and don't want them, and I never imagined that these posts would speak to you. (I did, in fact, assume that the number of readers of this LJ would drop because I wasn't writing about writing, publishing or business.)

But: I'm not an expert. I can answer questions, or try, but my answers come from very specific experience and the inherent ability to over-focus.

Before my oldest son was born, we'd read books about parenting and early childhood development. A lot of books, actually, the numbers increasing as the pregnancy drew to its natural close. We'd talked to other parents (or we'd been talked at). I'd discussed the possible effects of a newborn on my ability to write, to get work done. Not getting work done was not an option for our household. (I did assume that somehow it would be easy to find the time to write, because babies were supposed to sleep all the time. This caused my writing friends with children to laugh hysterically.)

As anyone who's had a child knows, speaking about the experience differs radically from the experience itself. Looking at an orange, understanding how it grows, how it's picked, and how it's shipped to your store is not in any way the act of eating one. Nor, in fact, is knowing precisely how it's digested and how the digested bits enter the bloodstream. You can amass a wealth of knowledge - but it's the knowledge of other people, who've had children who are not yours. (Not that this knowledge is useless; it's not. But it's never clear how the knowledge will be useful in your particular case until it suddenly becomes relevant).

Neither my husband nor I are terribly comfortable with an overtly authoritarian model of parenting -- while understanding, at the same time, that the authority in the household rests in our hands. We've always tended to approach any difficulties we had as logically as possible, which makes for interesting arguments. Having read and absorbed a number of different books, we survived three months of almost no sleep that wasn't broken hourly, all the while observing our child and looking for the usual developmental signs. We didn't assume that we knew who our son was, but assumed that we could figure it out as we went along. My mother frequently found our discussions annoying, because we didn't see things quite the way she did; she was, and is, a little more sentimental in her reactions.

We assumed that many of the differences between our son and textbook babies were due to personality and preference on his part; this was, in part wrong and in part right. Like any parents, we grew to understand when he was upset, and to figure out by trial and error what had upset him. It's why I could guess what had happened in MSI; I knew how he reacted when he thought something very unfair had occurred. In the context of our house, we had the flexibility to rearrange our routines; in the confines of a classroom, a teacher has to deal with at least twenty-five other small children. At age four there's a wide range of development; at six, the same is true.

So we understand that normative, conforming behaviour -- behaviour that every child in the class was expected to follow -- was a necessity for the classroom. It was not, of course, a necessity in the same way in the home. (I don't think it should be. Home is not school, and it's my assumption that most children, like most adults, know the difference after a short exposure).

What we learned with our son -- long before he himself could explain it -- was that as long as there were explicable, logical reasons for our decisions or household rules, he accepted them. So pretty much everything came with explanations. Don't play in the road/on the top of the slide/at the top of the stairs were all very easy.

Taking antibiotics was a three day war. He was young enough at the time that he didn't understand that he had a pretty bad infection, and the medication was not to his liking. We could not explain why he had to take them; only on day three did he understand that if he did, we would stop bothering him. You could see the light bulb go off, but the days that preceded it were torture.

Hats in Summer? He eventually learned that if he dropped them someplace really inconvenient (like, say, into the subway tracks), we couldn't get them back. Winter coats? Why, yes -- if he was cold. We got into the habit, from the time he was months old, of walking outside with him, sans coat, before we tried to put a baby snowsuit on him. This got us the dirtiest looks ever from all the other little old Greek ladies in the neighborhood, and a fair number of mothers who didn't know my son. IF it was cold, he let us put him in a coat. If it wasn't -- well. My mother thought this was a bit odd, but the five seconds on the porch made actually dressing him simple. So in situations like this we looked for nonverbal explanations -- and enduring the dirty looks.

But he knew what the rules were, at home. If the rules at school differed and we could explain the reasons for them, he accepted them. There were some rules, however, that were more complicated, and they therefore seemed very arbitrary to him. These he found difficult.

Food, I've mentioned elsewhere. My mother once tried to feed him lunch while she was babysitting, and he would not eat because he wanted chocolate. So, that lunch was a disaster. I came home, she explained what happened, and asked what she should have done. I said, "let him have a piece of chocolate." She didn't approve, because she assumed that it would spoil his appetite; I pointed out that he clearly didn't have enough of one since he'd skipped lunch entirely. But I also pointed out that he never ate much of anything, and if she gave him a piece of chocolate or two he wasn't likely to want more.

The next time this came up was the next time she was babysitting him, and this time, she let him have a piece of chocolate. To her surprise, he then ate lunch. He didn't, in fact, want nothing but chocolate. Sadly, he never wanted great amounts of any one food; she had assumed that he would just eat junk if he had that option.

However...in retrospect, I think what he wanted was some say in his own life. Or that he wanted his desires to be acknowledged. This is a pretty normal, human desire. He was always much happier to cooperate if there was some sense of compromise. This made sense to me. It did not make sense to some of the other parents. But my son didn't ask for much. And frankly, I want some say over my own life. I think it's a basic human desire. He did not insist on, say, playing in the road. He understood why this was a bad idea. He believed my explanation. Nor did he insist on any number of things I thought might be dangerous. He didn't insist that he had the right to grab someone else's toy, etc. This wasn't the type of control he attempted to exert.

But he did make a stand about things that weren't a danger to him; about things that weren't at the core of household rules. The chocolate would be one example of that. Changing playtime activities (he hated changes of state, even as a crawling infant) were another. If we gave him the fifteen minute warning (we're leaving in 15 minutes) and followed it up at the ten minute and five minute mark, he was quiet as a lamb. If we said "we're leaving now" with no warning, we wouldn't be able to leave for fifteen minutes anyway -- and then, only after a meltdown. It required a bit of forethought or planning on our part, but because it worked, that's what we did.

We were willing to make those compromises; some people advised -- strongly -- against it. And in the cases of their own children, they may well have been right. In the case of mine, it would have started a series of fights that would serve no purpose. "It is our personal preference that you stop this" wasn't enough of a reason to put our foot down. Even if we looked down the road and thought it was important to curb some of his interests (in computers, for example), we had to be careful.

But because we chose our fights and we compromised where the stakes weren't high enough, he accepted the more inflexible, easily explained rules (see: don't play in the road). He was comfortable in his own home, an environment in which he felt, if not in complete control, than not disregarded.

Having seen other children, I realize that this is not an approach that would work for everyone. When I say my son didn't ask for much, what I really mean is over the course of the first twelve years of his life, he asked for three things. A $469.00 tricycle (which at the time we so could not afford; I told him this apologetically, and he accepted it), Souls in the System (a computer game) and Doom II (my husband was not a fan of this, but Doom I had already arrived in our house via a demo disk, and he could not think of a clear and rational reason to say no to its sequel, although he spent three days trying to come up with one). That's it.

I've seen small children ask for literally a dozen things in the space of three hours. If he had been one of them, we would have then set up an incentive system, like a pre-allowance (we'd discussed this, expecting that he would ask for things as he got older). Having said this? I knew that he wanted Beyblades because he watched the other kids play with them prior to and after school. He didn't have to ask -- we bought them. It was one of the few early activities he shared with peers, and he stayed at school until the last child who also played with Beyblades left.

His interest in beyblades disappeared when the other kids stopped playing with them, though. Aspergers is hard because it doesn't mean the child has no interest in playing with other kids - he just doesn't have all the necessary tools.

None of the children his age were allowed to play on computers. Their parents were surprised that we allowed our son to do so. But we either had to stop using computers recreationally ourselves or allow him to do so. We couldn't do the thing that we were forbidding him, because we couldn't make it make sense. Driving a car? Yes. His feet couldn't reach the pedals and he couldn't see over the dashboard (and it was illegal, but at a certain age, he didn't understand what that meant). He understood all the ways in which this could be bad. Using a computer? No. The only way to make that stick in our house, as I said, was for all of us to stop. I am not mother enough to give up that time.

There are things I did give up. There were times I felt enormously guilty for the things I didn't.

But for my son, I think the single most effective thing we did was to allow him some say in the elements of his life that weren't defined by safety concerns, and by being consistent about things (like the computer time or games) across the house.

It's my belief, having watched him for so many years, that the reason he functioned in a house that was not set up with a very strict, daily routine (which is frequently recommended for ASD children) is because he could substitute a sense of control or say in his environment with perturbations in routine. Let me try that again. Because he had some choice, knowing, in advance, what would happen was less important. He substituted control for knowledge.

I think in the case where routine is essential to function, the same is true in the inverse: children who cannot make generalizations about social rules, or in fact, any rules in the worst case, will substitute knowledge of what will happen for the safety of control.

Let me make clear that certain elements - chocolate before lunch, rather than after - were not considered 'normal' behaviour. An argument--a cogent one--can be made that it's especially important for ASD children to acquire normal and normative behaviours. I believe they can - but I also believe that, developmentally, they're often behind the curve, and the cost of enforcing behaviours that make no sense to the child is paid in the child's insecurity and uncertainty. At some point, "people might/will think this is strange" made sense to my son - and it became incentive to alter his behaviour. But not, unfortunately, at four, five or six years of age.

Some ASD children, on the other hand, take well to more normative behaviour and corrections almost immediately in my direct experience. This was, as usual, a "does it work" decision, weighing the long-term costs and benefits for and to our son as we perceived them.

I'm sorry about the constant interruptions, here. I have a whole new set of page proofs (but they are small, compared to the beginning of the month's novel's worth), but I am halfway through the exit interview of grade one, and looking toward grade two.

Comments

mtlawson
Jun. 14th, 2011 01:32 am (UTC)
But we either had to stop using computers recreationally ourselves or allow him to do so.

That reminds me of what we gave up when our son was diagnosed with a peanut allergy. I wasn't sad to see peanut butter go --I was sick to death of peanut butter at the time as I'd had it for over a decade as a school lunch-- but I missed the other items. (And now I actually find myself missing peanut butter; I guess a decade of being away from the stuff will do that to you.) And now, if I'm out and I know that I won't be in contact with my son for several hours, I'm still reluctant to eat at a restaurant where I'll come into contact with peanuts, like Thai.

Early on, I recognized that if I remained consistent in this, he would understand and not try to push the boundaries so much.

Getting him to wear his Epipen everywhere is more of a struggle, however; more akin to last Sunday, when I took the three kids to go hike one of the trails at a local park. When we pulled up and I turned around, he didn't have his Epipen with him. "What do you think is going to happen anyway?" he demanded. "There isn't going to be some giant peanut coming out of the woods after me."

I'm sure that made sense to him, but it never occurred to his ten year old mind that other people we might meet on the trail might have GORP on them, or that they might have brought peanuts to feed a random squirrel or two.
msagara
Jun. 15th, 2011 02:24 am (UTC)
I'm sure that made sense to him, but it never occurred to his ten year old mind that other people we might meet on the trail might have GORP on them, or that they might have brought peanuts to feed a random squirrel or two.

I think it must get harder and harder as he gets older, because obviously nothing bad ever happens, and children often know that we're overly proficient at worry =/.
mtlawson
Jun. 15th, 2011 03:40 am (UTC)
Well, we've hit on him innumerable times that all it takes is once.

When he was going to go visit a neighbor's house the other day, I told him to get his Epipen. "How do you think you'll get to it if you have a reaction?" I asked him.

"I'd just run back," he replied.

"Not if you can't breathe. You can run now because you can. If you can't, an easy run is a nightmare. Just ask your sister with asthma."