Friday, March 3, 2017

The parenting spectrum

Parenting comes along a spectrum: from the strict parents with a lot of high expectations for their kids, to the looser ones who want to let their kids be themselves and figure things on in their own time.  It's safe to say my own impulses are firmly in the latter camp.  I have got on so far with very few rules -- I don't care if they jump on the couch, if they say please and thank you, or if they wear underpants.  I was hoping to unschool -- to learn each subject when the child was interested and drop it when they weren't, thus never having the schooltime battles other homeschooling parents have.

This has mostly worked pretty well.  The kids eventually grew into things.  Marko started wearing pants eventually.  Michael started saying please and thank you quite reliably in the past month simply because I told him it makes me happy when he does.  Miriam ... well, Miriam's still feral, whatever.

But I feel like this autism thing changes everything.  I read a book a few months back, The Loving Push, by Temple Grandin.  Grandin, autistic herself, explains that autistic kids automatically reject challenges and changes, and they need to be pushed out of their comfort zone.  She herself says she'd never have achieved all the things she has in life if she hadn't been forced to try new things.  And it terrified me because I really, really hate pushing kids into things.  Is that going to be my life from now on, forcing Marko to do things he is scared of?

Well, it turns out there is just as much of a spectrum in autism parenting as anywhere else: some are into huge amounts of work and therapy to get their children as close to "normal" as they can, and others mostly want to relax and let their children "be themselves."  The differences are boggling: my friend says ABA therapy is a must, an autistic person I talked to online says it is basically abuse and just about making children "look" normal while doing nothing for their inner issues.  Some people say school is basically required so that Marko can gain necessary social skills; others say it will just iron the individuality out of him while making him miserable.

I looked up "unschooling with autism" and all the results were full of "autism acceptance" -- that is, a lot of, "It doesn't matter if my child isn't toilet trained and lives in my basement the rest of his life playing Minecraft -- I accept him As He Is."  No one I could see ever made the claim that other unschoolers make, which is that children will in fact develop the skills they need on their own time, when they're sufficiently motivated to do so.  Everything I can see suggests that autistic kids will not.  And this upsets me so much -- it basically destroys any hope I had to be the kind of parent I meant to be.  I don't want either to push Marko into things he doesn't feel ready for, or to have him grow up never overcoming the challenges he has today.  But it seems I have to choose.

But, of course, it's not a toggle switch -- it's a spectrum.  Just as there are some parents of neurotypical kids who are so radically accepting they don't enforce bedtimes and let their kids run around completely stark naked, and others who are still unschooly but have a few hard limits like I do, there are a million possible points between "I must make my child appear exactly normal regardless of how many tears it causes" and "therapy is child abuse."  I've been learning how to balance pushing and backing off with Marko for some time.  I know, for instance, that if you push too hard he locks up and will refuse everything, while if you don't push at all he just sort of drifts away into his own world and starts ignoring everything you say.  It's really, really hard to strike the right kind of balance with him; I second-guess myself a lot.  But it's not like the idea is foreign to me.

Because, of course, some limits are not optional.  My kids don't usually want to go to bed, but they have to, both for their own good and for the good of the rest of the family.  I'm not being arbitrarily mean here, but it's a limit that I've always stuck to because it really matters.  In the same way, even if I set the limits for Marko at "only those things that affect other people or your health," that still means there are going to be battles sometimes.  More than with another kid, unfortunately, even if I draw all the lines in the exact same places.  Yesterday was full of battles because he wanted to make a huge mess in the living room and not clean it up, and to attack his brother for not playing by the rules he'd made up, and not to sit on the toilet even though he's been having accidents.  I suppose I could have let two of those slide, but I wouldn't for another child, and I don't think the standards should be different for him.  I mean, I don't want him to grow up into a douchebag husband who says, "I have a diagnosis that means I don't have to clean up after myself!"  And while I have tried backing off the toilet issues, they haven't gone away on their own, so I've decided he needs me to take over the choosing-when-to-go thing.  Pooping his pants isn't a huge deal to him, but it is to me, so there we are.

In short, I don't really believe my goal is to make him "normal."  He'll never be normal and I honestly don't really want him to be -- his quirks make him, him.  But at the same time I can't just "accept him as he is" when some of his limitations are hurting himself and others.  It's a matter of basic ethics that he has to be taught to treat others with respect.  He has been known to say, for instance, that he shouldn't have to put on clean clothes when the ones he has on reek of urine, because he doesn't mind the smell and he doesn't care what other people think of it.  It's true that some social rules are optional and it's actually great not to care too much what other people think, but other people's feelings matter too and going around with that degree of stank is just inconsiderate of everyone.

My mom said something very insightful to me yesterday.  She said that autistic kids are like aliens from another planet.  You're never going to make them into humans and you shouldn't try; but on the other hand, they need to learn the rules of how we do things on our planet so they can get along well here.  Data, from Star Trek, is a perfect example.  He wants so much to fit in among humans, and he never can perfectly because he doesn't feel or think the way they do.  At the same time, he can learn what idioms mean and the social niceties which make people feel liked and respected.  They might make no sense to him, but since he wants to make those around him happy, he makes an effort.  In return, people do respect his originality and talents -- they don't say "we like you because you are a very close approximation of a human" but "you're our friend and we like all your quirks."  I really want Marko to have a chance to get to know people who will love him just as he is -- but he can't get much of a chance if he's hiding behind people saying "I don't want to make any more friends!"  (Especially when I expect his real meaning is, "I don't want to make friends enough to overcome how scared I am to try.")

But refusing to settle down on one end of the "spectrum" or the other means that I have to weigh a million decisions every day.  Do I make him do this chore or not?  Do I make him say hello to the librarian or not?  Do I let him wear the same shirt two days in a row because he thinks it makes him look like Harry Potter or not?  How many times per meal should I remind him to use his fork?  I'm always aware of a little meter in my head measuring how much I've pushed him that day.  I never know the moment when it's going to go into the red and he's going to dig in his heels and throw a fit, but I have to ration my demands or it'll happen by 10 a.m. and I won't get much out of him till the end of the day.  I really don't know if my efforts to keep pushing to a minimum are helping him in the long run -- will he recognize I respect his wishes and try to please me when he can, or would more pushing get him past a mental block eventually?  Sometimes I've seen him go ahead and try a new thing he was scared of after I've backed off with something like, "You don't have to do it right now, but you will have to do it eventually.  Let's think of a way to try it that you like better."  And sometimes not.

Bigger decisions are coming up in our future.  It won't be just "should I insist he read Pete the Cat today, even though he's randomly decided he doesn't like cats?"  It'll be "what kind of therapy, and how much, should he get?"  And "should we enroll him in school or not?"  School is such a tough decision -- it comes with big advantages, like a familiar group of kids he could see every day, and access to an occupational therapist who might be able to help him with the tasks that are currently a struggle for him.  But it also comes with big challenges.  The initial resistance he has to the very idea of school is only the start.  After that will come the thousand and one times in a day he'll have to do something other than what he wants and is comfortable with -- to read a book he didn't choose, to be in a room with people he doesn't know, to leave an activity he's just gotten engrossed in.  School is pretty much the hard opposite of how I manage things, where I carefully provide tons of time for free play and let him choose what books to do and in what order.  Maybe he'd quit being so demanding, realizing that people aren't always going to cater to your whims and that's okay.  Or maybe he'd become angry, stubborn, resistant, coming home with a heavy load of misery which he unloads on the rest of us.

John says that it doesn't matter how unhappy school makes him, if it helps him be a functional adult.  But I have never been convinced that you can train a person to be a happy adult with a miserable childhood.  And even if you could ... the child-Marko is a person who matters too.

The school is really the very best it could be.  The teachers are experienced with ASD and very kind.  They're willing to put him in the very tiniest special-ed classroom and ease him into the mainstream classroom a little at a time, with his own dedicated aide.  And they've agreed to let him attend part-time only, given that he's never done school before.  So it's not like it's "drop him in at the deep end, or nothing."  But it still scares me.  I've spent so many years carefully protecting Marko from situations where I know he won't succeed, respecting his fears and his wishes, that it feels very wrong to do anything else.  But I worry that I have held him back from success in some ways.  For instance, my experience of Marko is that he doesn't talk to other adults, because when I'm around he mostly does not.  Yet when he's been left with another adult without me to answer him, he magically manages it.  The first time he ever got up the nerve to talk to his best friend's mother was when I wasn't there.  He told me he'd never ever talk to the speech therapist who assessed him, but once I left the room he did just fine.  So while other people praise my rapport with Marko and my respect for him, I wonder sometimes if I'm protecting him too much, allowing him to opt out of things that scare him which, if he once tried them, he'd actually enjoy and feel proud of.

When we were discussing the school option, John said, "All I know is that this kid cried for an hour when I insisted on reading Harry Potter at bedtime because he was sure he'd hate it, and now he's riding around on a broomstick playing Quidditch all day."  And it's true.  Just as Grandin's book suggests, he automatically says no to new things and will often love them once he's been pushed over the hump of trying them out.  It's just that it isn't possible to tell the difference between a no that means he'll really hate something and a no that's just the default reaction to something new.  I guess he himself doesn't know, and that's why he's scared.

Autism makes me doubt myself.  I feel like this is a Special Case and therefore my gut can't be trusted.  I should find an expert and trust their judgment instead of mine.  Yet how do I know which experts to trust if I can't trust my judgment in the first place?  And also, they might be the experts in autism, but I'm still the expert on my child.  I might not understand him, but no one else understands him any better.  That's kind of terrifying.  Are we really saying no one knows if putting him in school will be the best thing that's ever happened to him or a total nightmare?  It just feels like I'm totally in the dark.  Trusting my gut was easy in the past, because on the one hand there was so very much out there about kids raised in various ways, and I could clearly see that people who did what I do had kids who turned out fine; and on the other hand, normal healthy kids tend to grow up normal and healthy as long as you're a reasonably okay parent.  With autism we know so much less.  Heck, a generation ago a kid like Marko never would have been diagnosed, but considered just "odd and quirky" or maybe "rebellious" or "emotional."  So it's not like there's a lot of long-term data on different therapies and parenting techniques for a child like him.  But everything I can find suggests that how we react to him now is absolutely crucial and may have long-reaching effects, because his brain will never be as plastic as it is now (and already it's not as plastic as it used to be).

Huge stakes + tremendous uncertainty.  If that's not a recipe for parental neurosis, I don't know what is.


Cristina said...

Awww, Sheila! [HUG]

This post seems to build on something in your previous one, where you said you felt there was no one looking out for your kids except you. Well, there actually is someone else . . and no, I'm not going to say God (though of course I believe it!) . . . I'm referring to John!

It's true that you are with Marko a lot more than John is, but John also counts as an expert on your child. (That's a plural "your.") Neither of you may have enough studies or information to guide you, but no one else could possibly make a better decision than both of you putting your heads together for a little boy you both love.

If I read too much into your use of "I" in this and the previous post, I'm sorry. I just hope you don't feel like the weight of everything is on your shoulders alone.

Sheila said...

Oh, of course John is involved! But of course this makes it *more* complicated, not less ... first I have to figure out what I think, and he has to figure out what he thinks, and THEN we have to try to combine those two into a master plan. Which may be difficult, given that neither of us is any more expert than the other.

Now John is pretty sure school is the way to go. He leans very heavily on "trust the experts" and also "make things unpleasant now in the hopes of making things better in the future." I just can't quite get on board when no one actually seems to know if making things unpleasant now really *will* make things better in the future.

On the school issue, though, I'm beginning to feel more positive, because last time we were down there to pick up some papers, Marko actually wanted to stay *longer.* He seems to be getting an open mind about school, and if he gives it a chance, he might actually wind up liking it. Stranger things have happened!

Cristina said...

If a non-parent may fall somewhere on the parenting spectrum, I'm somewhere between you and John. Another friend and I were just reflecting that there are some things that will never be pleasant but have to be done in order to get to the things that are pleasant. (Context: She's homeschooling and trying to teach her most contumacious child to read; and I'm memorizing German vocabulary and prepping for a certification exam.) I certainly believe there's a line between "unpleasant but bearable" and "unbearable and no longer helpful," but of course it's tricky to know what that line is for someone else -- especially a child on the spectrum.

I'm glad that things are looking up from Marko's perspective. Let's hope this "strange thing" works out!

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