Sunday, April 23, 2017

Rewards and punishments

I've alluded before, in my autism posts, to my discomfort with the way a lot of autism advice and therapy is based on rewards and punishments.  Specifically, ABA therapy, which everyone tells me is the gold standard (except, of course, for the people who tell me it is abusive) is pretty much entirely based on rewards and punishments.

That level of focus is odd to me, because it takes the question of "how shall we motivate the child" and makes it the only question.  My experience, in parenting all of my kids, is that how to motivate them is only a small part of teaching them anything.  Even if the child really wants to know the thing, you still have to figure out the right way to teach them.  So I've been rather turned off by ABA because I already know how to motivate my kid, what I want to know is what teaching methods I should be using for best effect, and which things I should be teaching anyway.  I'm sure ABA does have some kind of method for those things as well, but I can't seem to find out about that.  Any research I attempt to do meets only answers like "we use sticker charts to motivate the child!"  Okay, great ... what do you do with that?

Now, I'm not purely opposed to rewards (or, occasionally, punishments).  On the one hand, I can see how for a non-verbal, non-communicative autistic child, an M&M is probably the clearest message you can send them saying "yes, we would like you to do more of what you just did."  And on the other, even a child who can communicate and understand sometimes does not want to do what you really need them to do.  Sometimes that's because they don't have a long-term perspective that allows them to realize the benefit of doing the thing you're asking (for instance, potty training -- all kids will benefit from being potty-trained once they've mastered it, but it's not all that fun at the time).  And sometimes it's because the thing you want them to do actually has no benefit for them at all, but only a benefit for you -- for instance, playing quietly when they'd like to play loudly, or helping out with household chores.  I would like Marko to help clean up his toys because he wants to, but I think that's kind of an unreasonable goal seeing as I don't want to clean them up either.  A reward is basically just paying him for his time spent doing something he doesn't want to do.  The other alternative is to threaten him with a punishment, but that too is an external motivation.

Sometimes we give kids a reward because they are somewhat motivated to do the thing, but not enough.  Marko is often half-excited, half-scared about something he could do, but his anxiety is very strong and often overrules his desire to do the thing.  I'd like him to be able to take a long-term view and realize that when you push past your fear, things turn out all right -- but he can't very well do that if he doesn't have a large enough bank of experiences where he pushed past fear and things turned out all right.  So sometimes we bribe him to do something, knowing that once he's pushed past the fear and done the thing -- say, his first time going to speech therapy -- he's not really going to care that much about the prize because he's happy that it ended up being fun after all.

Given the choice, I favor rewards over punishments.  After all, rewards are just adding more pleasantness to a child's life instead of more unhappiness, so it's a more positive sort of thing.  And children learn from what we do.  Which would you rather hear a child say?  "If you read me a story, I'll give you a toy!" or "If you won't read me a story, I'll take away your book"?  I feel like we've made this mistake a few times too often, because Marko has been known to scream, "If you put me in my room, I'll never be nice to you ever again!"  That said, to a child, a reward he hoped for that he isn't getting after all is not really any different from a punishment.  It's experienced, not as the status quo, but as the deprivation of something he thought was his.  This is especially true when it's something the child receives often, because they usually earn it, and then lose it one time because of bad behavior.  The child's distress at losing the reward can lead to a tantrum or a spiral of increasingly bad behavior.  So it's not like there is a clear-cut difference between what actually counts as a reward and what is a punishment.

Often, parents prefer a more emotional sort of reward: "If you do xyz, I'll be very happy with you!"  That works great for Michael.  But with Marko, it's hit-or-miss ... I'm not entirely sure he gets the concept of "you do something for me ... that makes me happy ... at other times, I do things for you."  It's a bit more complicated than you might think -- it's an implicit, rather than an explicit sort of bargain.  I used to understand this problem as "Marko just doesn't care about me," but he definitely does.  He sometimes specifically asks for things he can do to make me happy.  But for whatever reason, it just isn't as obvious to him.  And while "do it to make me happy" feels nicer than "do it for a treat," both involve pressuring a child into doing something he wouldn't otherwise want to do.  Either could be manipulative, but neither has to be, exactly -- except insofar as "manipulating" your kids is sort of necessary to keep them alive and teach them skills.  We do, occasionally, have to make kids do things, yet they don't appear to be scarred for life by this.  I tend to think it's best to use both emotional and physical rewards, because life contains a lot of each -- for instance, sometimes we work for a paycheck, other times we help a friend move because it will make them happy (and perhaps help us move down the road).  I wouldn't want my kids, when they're grown up, to quit a job that they needed to survive because they weren't emotionally fulfilled by it -- but neither would I want them to tell their spouses, "Well, if you want me to do the dishes, I'm going to expect to be paid!"

So, rewards and punishments have their place.  However, all that being said, there are some dangers with external motivation.  The first one is that you take the focus off the internal rewards the child was already getting when you add in an external reward.  I felt very strongly, back when I was teaching school, that you shouldn't reward a child for learning because learning is the reward.  When a kid has been trained excessively with rewards and punishments, they seem to lose the ability to do anything without them.  You start hearing, "What do I get if I read this book?  Will I be in trouble if I don't go to this playdate?  Why should I play outside?"  The child's focus is completely taken off the intrinsic joys of the things they're doing -- things that naturally are rewarding in themselves -- and onto some other thing, which you're encouraging them to value beyond everything else.  So rewards should be for things that are difficult or unrewarding, not for everything you ever want a child to do.  I often try to make the thing itself more rewarding -- like framing a school lesson out of one of Marko's hobbies, or making a game out of a chore.

I had an interesting experience with this just recently.  I downloaded a math app that the boys really enjoy.  Each of them was having fun trying the different games within the app and pushing the limits of their ability.  Then they discovered that the coins they won at the end of each level could be redeemed for more gadgets on their "rocket ship."  Suddenly the fun was sucked out of the game itself, and they started choosing only the easy levels, so that they could earn more coins faster and unlock more doodads.  It's a computer game -- it's inherently so rewarding that they were already getting to play the game as a reward for finishing other work!  But suddenly it was seen only as a means to an end, becauase the game taught them to see it that way.

The other thing is that sometimes external rewards and punishments can push a child way too far out of their comfort zone.  It's one thing to say, "Hey, if you pick up these toys, I'll let you play Minecraft for ten minutes."  The child can weigh the possibilities and decide if it's worth it.  But some things are so valued or feared that it isn't really a choice.  Marko, for instance, feels he needs to be read to every night to go to sleep.  We originally started it as a reward for finishing dinner, but he's so attached to it that really, not being read to is a punishment for not finishing dinner.  And it's a punishment too dreadful to bear, so that on the rare occasion that he really can't finish his dinner, for one reason or another, he goes completely bananas.  There will be an hour of frantic screaming as we attempt to put him to bed without the story, and then he sobs for "one more chance" and comes and eats the food.  He'll do this even if he is sick.  So because he is so strongly motivated, externally, we can't actually trust him to protect his own body.  Kids who fear punishment or who are extremely attached to rewards will do all kinds of things to avoid losing privileges: lie, hide evidence, threaten or hurt siblings who might tell, try to handle everything without calling on an adult for help.  Marko's occasional poop accidents, I believe, are not my fault, but the fact that he refuses to tell anyone when he's had one?  That's probably on me, and the times I've blown up at him or taken away a privilege when I found out he had had an accident.  For this reason, it's best to keep consequences small -- not things so deeply valued that the child will go crazy over them.  And I always prefer a reward that can be given out piecemeal -- not "you lose your entire Minecraft turn for one tantrum" but "for every day you go without a tantrum, you'll earn five minutes of Minecraft on Saturday."  That way the child doesn't completely give up on good behavior once he's misbehaved once.

Of course you get into really toxic territory when it becomes a "rewards auction" -- the parent offers more and bigger rewards in the hopes of attaining compliance, and when the kid catches on, he learns to hold out for better prizes by behaving badly till they offer the good stuff.  If you're going to use rewards, that means you are going to have to give the child the experience of not getting the reward if they didn't earn it.  Which, yes, means sometimes accepting noncompliance.  If noncompliance isn't really an option, then you shouldn't offer a reward.  Our general habit in such situations is, "You get a reward if you are good at the store, but you don't have a choice about going to the store."  We physically bring our children where they need to be if we need to.  It rarely happens, because they know when we say "there is no choice" that there's no point in resisting, but Marko in particular will sometimes just lie on the floor and refuse to budge when there's something up ahead that he's afraid of.

So, in short, external motivation may sometimes be necessary in getting a child to do what he needs to.  But I think it should be kept to a minimum, and only used when necessary, because it does have downsides.  Other ways to motivate a child include ethics ("do this, because it is the right thing to do/will help others"), explaining the reasoning behind the request ("eat your dinner, it will help your body grow"), building good habits ("brush your teeth before bed like we always do!"), and making the desired behavior fun.  It's also important to look through the reasons the child doesn't want to do the behavior, because often it isn't what you'd expect, and once you take away the fear or confusion the child happily does the task you want.

And yes, this is true of autistic kids too.  Marko responds extremely well to explanations -- he cooperated great with his shots, for instance, because he knows how the immune system works and does not want to be sick.  He also does well with reducing the fear or upset that is keeping him from complying, because there are often very odd reasons why he objects so strongly to basic things.  For instance, sometimes one of us will say "get your shoes and socks on, it's time to go!" and Marko, instead of answering, will immediately start jumping up and down and screaming.  When we get him calmed down and talk through it, turns out he just objected to the socks, because for whatever reason he hates those, and he'll happily get ready if we just compromise on the sock thing.

And yes, sometimes we just bribe him.  But it's not the end of the world.  It's rewarding him for doing things that, for whatever reason, are extra difficult.  The adult world is full of trades, this payment for that task, and it's not bad for childhood to contain some of the same things.

Thursday, April 20, 2017

7 busy takes

1

Remember how I said this year was going to be super tough and I wasn't going to be able to just sit back and survive it -- that I was going to have to put on my big girl panties and do all the things?  Yeah, that was accurate.  There has been a LOT of stuff I've had to get done lately.  I feel like I've been more energetic than I have been in awhile, but it doesn't matter because there's just more to get done, so I'm exactly as behind as ever.

Take this week: I have had to go out of the house every day so far, and skip two homeschool meetups I would have liked to go to.  Last week was the same, and next week promises to be similar!  Gone are the days when my only real commitments were grocery shopping and returning the library books.

2

Monday's adventure was getting the kids their shots.  Yes, I am finally vaccinating my kids.  It's been hard for me ... I've never had a legitimate reason not to vaccinate them.  I knew that reactions were rare, that if vaccines had ever caused autism, they no longer have thimerosal in them, so that shouldn't be happening now at any rate.

What it was, for me, was mistrust: a feeling that the medical establishment could not be trusted to have my best interests at heart, that if there were a serious danger in vaccines, they would surely cover it up and perhaps even punish the scientist who had claimed there was.  I do not know why pro-vaxxers think, "Dr. Wakefield's study was retracted and his medical license was revoked!" is evidence in favor of their position.  It is clearly the opposite, to anyone who was against vaccines in the first place.  EVERYONE KNOWS the medical establishment says they are safe, so why do people keep saying "but here's a CDC page saying I'm right!" is some kind of slam-dunk?  But I've become a lot more pro-establishment lately.  While no one is to be trusted absolutely, people who have dedicated their lives to the study of a certain topic are probably more to be trusted than those who haven't.  And as far as corruption goes -- I've been deep enough into the natural-health community to find that it's not immune from the same thing.  If you can follow the money in the CDC's recommendations, you can also follow the money to find out why Dr. Mercola sells what he does.  There is a lot of money in alternative medicine, and a lot less oversight.  And it's easy to see a contradiction in people who automatically shoot down any claim made by their doctor because they don't trust him, and then immediately share any ridiculous claim made by a random lady with a blog.  And I've realized that when a treatment has been shown with actual evidence to be safe and effective -- somebody patents it and your doctor prescribes it.

The other issue is that I always felt, on some level, that it was better for my kid to get sick of a disease that I didn't prevent than to get sick of a shot I actually gave him.  Part of the Catholic "actions matter more than omissions" thing.  I'm now a lot more of a consequentialist (though I admit there is at least some difference between an action and an omission) so I feel like I should be choosing, not the option with the least personal involvement, but the option with the smallest chance of my kids getting sick.  Yes, I would feel way more guilty if they got sick of a shot than if they got sick of a virus.  Yet that's not really the morally significant part of the equation.  The morally significant part is that I would have done what had the best chance of keeping them well, regardless of how I felt about it.

3

The night before we got the shots, I lay awake awhile worrying about it.  John joked that I don't need to worry because "what are they going to do, give Marko MORE autism?"  But, silly or not, that was how I felt ... I mean, given that he's already autistic, what if that means his system is super fragile?  I know that autistic kids massively regress for all kinds of reasons; I even read of a child who regressed and lost his language ability after the chicken pox.  And it's not impossible that Marko might regress after the shots.  I was also scared about the pain for them ... both boys had to get three shots this week, and those hurt!  I personally have a massive needle phobia, not just of the pain itself, but of the thought of foreign substances inside my body.  To get a shot, I have to think about it as little as possible.  And there I would have to be up close and personal, and put a brave face on so I didn't give the boys my own fears.  I would a thousand times rather have had all six shots myself than have to put my kids through it.

But they did fine.  Neither kid was scared about it.  Marko yelped at each jab and sounded indignant, but the second they were over he was fine.  Michael, seeing Marko's reaction, suddenly panicked and tried to fight the shots, so I had to restrain him.  That was not fun at all.  But again, the second the last shot was over he was fine, and bragged about how brave he had been.  (NOT.)  Then we all went for ice cream, and I had one of those perfect parenting moments, eating ice cream with them at the gazebo in town, feeling like, for once, we were all happy at the same time and could just enjoy being together.  (Which lasted until Miriam threw a fit about a bite of ice cream she'd given me and then wanted back after I'd swallowed it.  OH WELL.)

They have to go back next week for the other two shots (MMR and varicella, which are both live, ugh) and then after four weeks we go and get more doses of all the same things.  The frustrating part is that, since two of the shots have to be given over six months, they will not be caught up by the start of school.  I believe that this won't delay them from starting school, so long as I can get a doctor's note.  I certainly hope not; after all this effort to get everything set up for Marko to start school at the beginning of the year, when things are starting slow, it would be terrible to have to make him wait till October and then try to catch up.

4

The other thing I did this week that tore me up was signing up both boys for school.  John and I have talked the issue to death and we've pretty much reached agreement to at least try it.  It used to be that he was for it and I was against, but when we did a school tour, Marko actually looked pretty interested in everything.  And when we went back to pick up some paperwork, he was upset that we didn't get to stay and play with the special ed teacher's cars.

This is a kid who used to sob if we turned down the street the school was on, because he was so terrified of the place.  Multiple visits for various meetings have taken away the dread for him.  He's also having speech therapy there, and he's enjoyed that.  He still insists he'll never ever go to school, but it almost seems like a pro forma objection -- he likes going there and he seems pretty interested in my stories of what goes on there.

I don't think he'll learn better at school than at home.  He will almost certainly fall behind a bit in school stuff.  But what he will gain are the social skills that are his weakest point: he will get lots of practice talking to other grownups, he'll be encouraged to socialize with other kids, he'll learn about following directions.  This is stuff that a kid should know, at least a little bit.  I used to not worry about his shyness, feeling that he'd eventually be ready to talk to more people and till then, he didn't need to.  But then there was the time last year that Michael poked him in the eye with a popsicle stick.  We took him to the doctor, and he could not communicate with him or with the nurse about whether he could read the vision chart.  And I realized, a child needs to be able to ask for help from adults that aren't his parents.  He doesn't need to do it all the time, but he needs to be able to.  And Marko, probably because of his autism, is not able to and it doesn't look like he's going to just start doing it without being pushed.  He's gotten better at this in the past six months, just from all the assessments we've put him through.  There has been complaining, insisting he won't go, lying on the floor refusing to move, but in the end he has gone to all of them and talked with the professionals who are assessing him.  He just needs practice.

Of course in theory I could provide all this, by doing more homeschool groups and more library story times and maybe piano lessons or dance lessons or something.  But ... that's kind of in the alternate reality where I hadn't had a baby this year.  It is really hard for me even to keep up with his homeschooling.  I have to admit I'm not really able to provide all he needs, not this year.

And Michael will be going too, because unlike Marko, Michael actually wants to.  He's super excited about the idea of school, of playing with other kids, of getting a backpack and a lunchbox and books of his very own.  It would seem kind of unfair to send his brother, who doesn't want to go, and not send him.  Plus, I figure one year of school, right at the beginning when it's easy, will give him the social skills he currently lacks and reassure me that he doesn't have any issues.  Then, hopefully, next year we can get back to homeschooling with a bit more confidence.  I know it was very hard for me to switch from homeschool to traditional school, in part because I started so late (fourth grade) when all the other kids knew each other and a lot of the rules were unspoken.  If Michael has a year of kindergarten under his belt, then he will easily be able to transition back into school at whatever year he wants to -- whether that's fourth grade, ninth grade, or college.

I'm trying not to be dogmatic about this, to take it one year at a time, rather than mapping out our entire education.  But I'm really hoping everyone has made a ton of progress by next year, while at the same time wanting to get back to homeschooling, so that there will be no reason to keep them in school another year.  I like homeschooling.  I like being together as a family.  And as overwhelmed as I am right now, by next year Jackie will be older and I expect I'll be better able to handle everything.

5

But the school thing is so far not making my life less stressful, but more.  I have to get birth certificates for the kids; that's been a big runaround.  I have to get them shots.  Everyone needs a physical.  Everyone needs school clothes.  Marko needs to get on board with wearing underwear before August.  Of course this is all because we haven't started yet, but then once we do start, I'll have to walk the kids the two blocks to school every day.  That's a lot more leaving the house than I'm used to.

The bright side is that other things are actually getting done that needed to be.  I got my chicken application submitted at last, over a year after the urban farming ordinance was passed.  The shots, of course, had to be done anyway and I'm glad we're finally getting them done.  (I'm waiting on Miriam because she is completely unmanageable now -- there is no way I could get a shot into her without some backup.)  I bought a cherry tree yesterday, which I'm going to plant today.  I feel .... better about adulting than I have in a long time.  I'm realizing the truth of what I've read about anxiety, that the best way to get over it is to push yourself through it and then realize after the fact that it wasn't so scary.  And that's been true for both Marko and me ... when we don't have a choice to back out of the scary thing, we've done it, and been less scared about it.

Maybe I'll actually go to the dentist this year!

6

Warm weather has meant lots of pleasant time outside.  I always feel better about everything in the spring.  Except, one night, the first night we slept with the windows open, I couldn't sleep and was racked with feelings of anxiety ... because last year, when I last slept with the windows open in the spring, I had just found out I was pregnant and lay awake for hours having panic attacks.  It is going to take me a long time to get over that.  Even though I think the worst is behind me and there is nothing left to be afraid of, I still remember the fear and dread and feel terrible.

But in the daylight hours, it's all good.  I've been planting lots of stuff in my new giant garden.  Jackie has reached the age where she actually likes lying on a blanket in the grass .... though I can't let her do it for long, because I have so much anxiety that someone will step on her.  I am not sure how much of that is good sense (my kids are so oblivious!) and how much is just brainweasels.


Miriam and Michael love Jackie so much.  Especially Miriam, still, but Michael also is pretty interested now that she's a bit more responsive.  She smiles, looks at them, waves her arms around, and they always interpret this as "she likes me! she's trying to talk to me!"  I love it.


And even Marko has finally unbent enough to play with her.  Nobody else was interested in his ponies (which he got for his birthday) so he flew them around in front of her face to entertain her.  And she really did look at them, so he was perfectly content.  I've noticed lately that he plays more with Miriam, as well, because he needs playmates who will follow instructions rather than expecting to be equal creators of the game.  I'm not sure if this is entirely positive, but hey, he's not ignoring 2/3 of his siblings, so I'm going to rank it in the "win" column all the same.  Especially for a kid who, up to a month ago, was insisting Jackie was NOT his sister and NOT part of the family and he was not EVER EVER going to look at her.


7

This reminds me that I haven't mentioned yet that Marko is seven.  Hard to believe.  His current obsession (added onto his past obsessions -- he still plays Minecraft and Harry Potter a lot of the time) is My Little Pony: Friendship Is Magic.  It's actually not as obnoxious a show as I thought at first blush -- they clearly made an effort to include some humor and pop-culture references for the parents.  I like that it breaks down the concept of friendship into manageable, explicit skills.

For his birthday, John wanted to take him out on an outing of his choosing, just the two of them.  He picked going to a movie, but Michael was all upset that he wasn't going along.  Marko looked at Michael crying for awhile, and then came to me to say, "I know how Michael feels, because I would feel the same way if he were going to a movie with Daddy without me."  I was extremely impressed at this insight from him, which isn't common, and suggested he talk to John about it.  John told him he could bring Michael along too, and both boys were thrilled to get to do their special birthday outing together.

Michael's birthday is tomorrow; he'll be five.  He remains the sweetest boy you'll ever meet -- coming over to me often to give me hugs and kisses.  And recently he's become quite polite, since I decided the best way to curb whining was to suggest polite phrases he could say instead.  So when I give him something that isn't to his liking, he'll now say "Thank you for giving this to me, Mama, and can you please cut it in half?"  That's a huge improvement over, "I WANTED it to be cut in HALF, waaaaaaaah!"  And he's great about all the "hellos" and "good mornings" and "I love yous" that Marko generally does not say.  It makes me appreciate all these things just that much more.

Miriam is going through a very tantrummy stage.  John calls her the Destroyer of Souls; I don't think it's as bad as all that, but then, I'm not the one who has to be up with her from midnight to four a.m. when she has a bad night.  That would probably destroy my soul too.  It's clearly causing her to be a lot less amiable in the daytime; the tiniest thing causes sobs and hitting.  Letting her hug and kiss her sister often helps; hugs from us parents are loudly rejected.  The other day she asked to nurse again, after about a month of not asking.  A part of me wishes we were still nursing, because it surely would help with the tantrums, but .... it's a very small part, compared to the part that's glad to be done.

Jackie is three months today -- the magic number, in my mind, when a baby starts to get easier.  She took a two-hour nap today.  That's not an all-the-time thing, but good naps are definitely becoming more common.  And when she's awake, she's a lot more willing to sit in her bouncer or lie on the bed and just kick around, looking at stuff.

She reminds me of Marko, as a baby, which of course worries me a lot.  She's not comforted by being held unless she is also being walked around so she can look at stuff.  She won't nurse if she's upset, and screams bloody murder if you try to nurse her when she's not interested.  She does make eye contact and smile, but ... I am not entirely sure she makes eye contact as much as other babies do.  It's more of a brief glance and then she smiles over your shoulder.  Of course I know I've got autism on the brain and see it everywhere, even where it's not.

That's it for this week.  How has yours been?

Friday, April 14, 2017

7 autism takes

1

Last week I went to the library, and since the kids distract me too much for any browsing, I just went to the psychology shelf and pulled off half a dozen books about autism.  I figure it's time to do some serious research, because the information I get on the internet is pretty shallow.

I'd like to do a full review on every book I read, but I don't have that kind of time, so I thought I'd do a mini-review of each book and share some of my thoughts about what I read.

2

The first source isn't a book; it's a movie -- Temple Grandin.  A friend lent me the DVD and I really enjoyed it.  It's the story of how an autistic woman develops from a nonverbal child to a designer of livestock management systems.  Dr. Grandin is very famous in autism circles as a success story -- you can watch some of her speeches online.

I loved how the movie showed you how Temple, who is extremely visual, sees and imagines the world -- by making normal things that frightened her look creepy, or by flashing quick images of the things she's imagining when other people talk to her.

What really gets me in the movie is what a fine balance Temple's parents and mentors have to walk -- neither failing to challenge her, nor letting her flounder.  If her mother hadn't forced her to go to college, I doubt she'd ever have been able to achieve what she did.  But on the other hand, if she hadn't insisted the college allow Temple to keep the "squeeze machine" she used to calm her sensory meltdowns, I doubt she could have succeeded at college.  Always a fine line between allowing an autistic person to be themselves, and forcing them out of their comfort zone.

3

Next I read a book, Songs of the Gorilla Nation.  The author has not only autism, but also synesthesia, an eidetic memory, and a masterful command of language, so that it's a lovely book from beginning to end.  It tells her story, from running through her childhood home repeating words over and over, through a traumatic time in school, dropping out of high school, being homeless, and finally discovering her life's work studying gorillas.  Only at 35, after experiencing difficulties in her longterm relationship, did she finally seek and obtain a diagnosis.

The author is clearly a person of deep emotions and aesthetics, and I found I identified strongly with her.  Like me, she becomes attached to things of great beauty.  And like Marko, she cannot bear for anything ever to change:

"My need for repetition extended to routes, places, and activities. When we went to the store, the cleaner, or the park, I would insist on going the same way every single time.  I would silently acknowledge landmarks as the route unwound, whether they were the buildings and hills or the flowers and trees. I had memorized everything.  To me, each flower, tree, building and hill was a person, a being with its own personality and sense of agency.  If I did not see it, it missed me and felt abandoned. I would panic if we did not drive or walk by it, because it would think I didn't exist anymore and would be worried. In turn, I felt like I would disappear if I were not hemmed in by the familiar and unchanging.

I would feel like I was dying--my heart would pound, my ears would ring, and my whole consciousness would go hollow--if something changed. I remember instances of buildings being torn down, trees being cut, new roads going in, and two building fires happening along my routes.  It took weeks for me to recover from these things.  I would cry and yell and announce my convictions regarding the basic evil of mankind.  I hated the changers and the changed.  To me, change was nothing less than murder.

Oftentimes I would not accept these changes, and if we passed the site of a fallen tree or a new building, I would close my eyes and remember it the way it was until we had moved on to the safety of the sacred permanent. Sometimes I would have dreams about the buildings, trees, or fields that had disappeared, and in those dreams I would hug them and tell them how much I loved and missed them."

Marko cried for a couple of weeks recently over a lamp that had broken.  At the time, I suggested that it was probably that he was upset over the new baby and couldn't verbalize it so he fixated on the lamp instead, but maybe I was wrong.  Maybe he really was that attached to the lamp!

The book had a lot of highs and lows -- from the poignancy of her time on the streets, too shy to beg and reduced to digging food out of the trash, to the triumph when her son is born and she holds him in her arms for the first time.  It's just a beautiful, beautiful book.

4

The next book I read was Neurotribes, on the recommendation of reader Sojourner.  It's a history of autism, from the mad scientists of the time before autism was recognized, to its simultaneous discovery, on different sides of the Atlantic, by Leo Kanner and Hans Asperger, and beyond, to what we are learning today.`

The book attempts to prove, and I think successfully, that autism is not a new and scary epidemic, but a genetic condition that's always existed and which we're only now beginning to recognize the scope of.  Rises in reported cases correspond closely with increased awareness and expanded diagnostic criteria.

The trouble with our early knowledge of autism is that Kanner and Asperger defined it very differently.  Kanner, an American psychologist, said it was an extremely rare condition and his criteria for diagnosis were very strict.  A child with real autism couldn't have "infantile schizophrenia" (a diagnosis at the time which has since disappeared into autism), or any other conditions like seizures (which now are known to affect a large percentage of autistic kids).  He described the condition with eleven case studies, all of very severely affected children.

Asperger, on the other hand, worked at a children's school for special needs in Austria and had 200 different cases.  He recognized that there was a continuum in the condition from nonverbal children all the way to verbal, quite intelligent kids he called "little professors."  Unlike Kanner, he suggested the syndrome was "not at all rare."  Unfortunately, Hitler came to power about then, and the school was shut down.  Asperger's work didn't become widely known for decades.

Something both Kanner and Asperger noticed that the parents of autistic kids often seemed quiet, logical, cold, or closed-in.  Kanner's explanation was that the coldness of the parents had wounded the child's developing psyche, causing him to develop autism -- the "refrigerator mother" hypothesis, which led to children being institutionalized to save them from their parents' toxic influence, as well as many parents avoiding diagnosis for their children for fear they would be blamed for it. For his part, Asperger believed that autism ran in families, which is what we now believe.

The double discovery resulted in a diagnostic separation at first -- "autism" referring to children with a language delay, social deficits, and repetitive behavior, and "Asperger's syndrome" referring to similar children without any language delay, as well as having high intelligence.  In time, it became clear that Asperger's and autism weren't really as different as they appeared, and Asperger's was rolled into the autism diagnosis -- resulting, of course, in an apparent skyrocketing of the autism rate.

One thing that the book made clear to me is that the autism spectrum isn't a static thing -- where severely autistic kids will grow into severely autistic adults, while more mildly affected kids (those with what we used to call Asperger's) stay that way forever.  Rather, some kids make massive leaps from completely nonverbal to being able to function and socialize normally, while others regress and lose skills they had previously had.  This can cause a great deal of confusion about treatment, because children may make big leaps forward or backward seemingly at random and have it credited to a diet change, new supplement, or a vaccine.  It's hard to say, at any given time, if gains should be credited to therapy or just to a child getting older.

The really striking bit dealt with the follow-ups from Kanner's original group of eleven severely autistic children.  One served in the Navy and was married with kids.  One graduated high school with top marks and an IQ of 150.  One got a scholarship to study mathematical physics.  One had gotten a degree in French and became a bank teller, after having been raised by foster parents who were "very fond of him" and "gently firm":

 "As Asperger's team had done for their own patients, the Lewises had found ways for Donald to put his autistic intelligence to work, rather than treating his passions for counting and collecting as pathological obsessions inflicted on him by his parents. 'If one factor is significantly useful, it is a sympathetic and tolerant reception by the school,' Kanner concluded. 'Those of our children who have improved have been extended extraordinary consideration by their teachers.'"

On the other hand, some of the children were institutionalized and these did not improve.  "[The children] who spent most of their lives in institutional care have lost all their luster early after their admission .... If at all responsive to psychological testing, their IQ's dropped down to figures usually referred to as low-grade moron or imbecile."  This is despite all the children originally being at very similar levels of functioning when Kanner first described them.

It both frightened and reassured me -- frightened, because clearly autistic children are very vulnerable to the wrong environment; reassured, because none of these kids had any official "therapy," just the sort of flexible but demanding parenting we are always told kids need anyway.

5

Now I'm not entirely on board with everything in this book.  For instance, the author insists that autism is mostly genetic, which twin studies do affirm, but he completely glosses over the fact that twin studies also show that it isn't entirely genetic.  Perhaps 25% of cases may be caused by something in the environment.  The author also makes it sound like autism is just great if only people are willing to adapt. He tells stories of autistic get-togethers where everyone gets along famously so long as the neurotypicals aren't around.  And I know that autistic people don't always get along well with each other at all -- it really depends.  It's true that the world could use to make more allowances for the autistic, but it is also true that autism is a disorder which makes life more difficult for the people who suffer from it.  I appreciated a look at the "bright side" of autism -- the misunderstood geniuses, the kids whose families learned to accept them for who they are -- but it seemed just a bit too sunshine-and-rainbows.

That said, I think I can get on board with the notion that autism, and the traits that play into it, might have value in our society.  Temple Grandin said that if you could have wiped out from the human gene pool every autistic gene, mankind would still be socializing in caves, without any of the monomaniacal geniuses who could have invented fire.  Autistic people, and nerds with some autistic traits, may be the key to developing new technologies -- people whose true happiness is in their obsessions, who can spend a lifetime working on one single thing.

6

Next I read Temple Grandin's book The Autistic Brain.  This dug into a lot of what I most wanted to know, which is what exactly autism is, and how it feels to be autistic.  How can I empathize with my child if I don't know what's going on in his head?  He isn't always very good about communicating that stuff to me.

I found it a super cool book, discussing not only information obtained from brain scans, but also genetics and self-reports of autistic individuals.  Finally something that actually addressed what autism is rather than a list of behaviors observed from the outside -- because I know about the latter already!

The brains of autistic people tend to be unbalanced, with some areas of the brain overdeveloped and others undeveloped.  Grandin shares scans of her own brain, which has small language centers and a massive visual-processing area -- unsurprising, given that she was a late talker and thinks in pictures.  But she's careful to point out that not all autistic people have brains like hers. While it's characteristic of the autistic brain to be exceptional in some areas and underdeveloped in others, which areas are which vary from person to person.

One commonality, though, is that autistic people have larger amygdalas.  The amygdala is the part of the brain that processes emotion, especially fear.  This is why autistic people so commonly suffer from anxiety.  Another interesting thing (not actually mentioned in this book, but I'm putting it here because I can't remember now where I read it) is that the autistic brain does not become used to things in the same way.  For instance, if I hear the same joke a second time, I don't find it funny, and if I hear the same phrase said ten times, I get tired of it and wish it would stop.  Autistic people don't have this happen, for whatever reason -- when they watch a beloved movie, even though they know what will happen, they can enjoy it just as much.  And, of course, Marko loves to say the same thing over, and over, and over, and OVER.  Drives me insane.

Like autistic brains, autistic genes aren't all the same.  There are any number of genes which might be associated with autism, but in a sample of a hundred autistic people, there may be only two or three people with any specific shared mutation.  That makes it difficult to find out which genes are actually causing autism.  It's almost certainly more than one in each person -- that is, there must be alterations in several different parts of the genetic code for a person to develop autism.  I read an interesting study awhile back showing that parents of autistic children often showed "autism cluster traits" -- that is, they had some traits associated with autism, but not others.  For instance, the father might be extremely rigid while the mother suffered from language difficulties.  More study in this direction would be extremely interesting and possibly shed light on why autism develops in such a predictable pattern even with such different genes -- and why some of family members of autistics don't have autism.  What exactly does separate a nerd from his autistic sibling, and why don't we have a word for the thing the nerd has?

Both the brain chapter and the gene chapter got me thinking about the possibility that autism is really just an umbrella term.  It's extremely common because we're lumping in so many totally different things in the same diagnosis, based on a list of common traits.  Perhaps one day parents receiving their child's diagnosis will hear something like this: "Johnny has mutation A on his B gene, an enlarged C region and a small D region in his brain, and behaviors E, F, and G.  This means he has autism type 5, which has prognosis H and will respond best to treatment I."  But we are nowhere even remotely close to this right now.

[Note: some autistic people really do not like research being done on autism genetics because they worry the only use of this research is going to be prenatal testing and eugentic abortion.  I think that's a very valid concern, but at the same time I think we'll never understand what autism IS, and what plays into it, without looking at the genes.]

Grandin spends a whole chapter talking about sensory issues, which she says are underemphasized in autism research and therapy.  Doctors focus on behaviors, without realizing that totally different behaviors (e.g. melting down and shutting down) might come from the same internal experience of overstimulation.  Some autistic people have difficulty integrating and interpreting sensory data, and she shares interviews with some of them to give us an idea of what it's like to, for instance, see a yellow thing, see that it's a rectangle, examine the hinges for a bit, before finally concluding that it is a door.  Or to be in a noisy restaurant and not being able to sort out the conversation you're in from the conversation at the next table.

In short, it's a great book for summarizing some of the best science available, and also for helping neurotypical people empathize.

7

Here are a few of the main conclusions I've drawn after all this reading:

1.  Autism is primarily about imbalance rather than deficiency -- excelling in one or two areas while being underdeveloped in more general forms of intelligence, like executive function or social skills.  So while autistic people are not necessarily geniuses, they may appear to be geniuses in their preferred subject because they are devoting much more of their attention to it.  Marko's intelligence was tested during all his screening, and his IQ came in at 104 -- just about average, which was actually very surprising because he seems like a genius to me.  But the results came with a caveat that the score was so scattered -- abnormally high in some areas, vanishingly low in others -- that it might not be useful.

2.  Two of the most noticeable features of autism, adherence to routine and self-stimulatory behavior, are ways that autistic people manage overwhelm and anxiety. As such, you can't actually train children out of them.  I have tried and tried, but have found that anytime I actually break Marko of one fidget, he comes up with another.  When I stopped him from pulling his hair out, he started chewing his clothes; now I've mostly got him to stop chewing his clothes and he reaches down his pants to scratch his butt.  These behaviors magnify a millionfold when he is stressed out.  So rather than trying to extinguish these behaviors, I should be attempting to reduce stress, and acknowledging that when I ask him to do something scary and difficult, they'll crop up more.  Likewise, in stressful situations, providing a reliable routine might be the best way to manage his anxiety.

3.  The autism spectrum has a very long "trailing edge" -- that is to say, even beyond the point where a person could be reasonably said to have a disability, there are people with autistic-like experiences and behaviors.  These are the absent-minded professors or Silicon Valley geeks who might be able to handle life on their own okay, but who still seem kind of awkward or "off."  And these people are often the parents, children, or siblings of autistic people.

This is something I already knew, but it's kind of shaking me up at the moment.  I knew I had some characteristics of autism (specifically, sensory sensitivity).  But now I'm wondering if I'm more socially awkward than I think -- whether everyone around me knows this and just never said anything about it.  I might write a whole separate post about this.

4.  There are three different ways to look at autism, and it's possible that all are true.  You can look at it as a disability, of course, because there are things autistic kids struggle with.  You can look at it as simply a difference -- autistic kids are different and special and the world should adapt to them without making them feel like they're less.  And last of all is as a moral fault -- in that autistic kids, unlike for instance blind kids, are expected somehow to overcome their autism and change, to actually rewire their brains as needed to gain the skills everyone else has.

Language of disability is useful when it comes to making adaptations for kids.  To get the school to adapt, I can simply say "he's disabled and needs these supports."  You'd no sooner expect him to succeed in a noisy, chaotic school than you'd expect a child with no legs to succeed in a school full of stairs.  Language about difference is most useful when it comes to accepting the special and unique kid I have.  He's not really defective, not to us, and perhaps other people could stand to learn something from him.  In most respects I think the "moral fault" idea is wrong -- if we don't tell a blind person to quit waving that white cane around everywhere, why should we tell an autistic child to stop spinning?  But since autism is somewhat changeable, this viewpoint has its place.  When Marko said the other day that he has one friend and does not ever want any more friends, I knew that making friends feels impossible to him -- but I also know that it isn't actually impossible, so I'm not going to let him just opt out.  If he grows up to be an introvert, fine, but he can make that choice after he's learned enough social skills to make it an actual option.  There are some things he's going to have to do as matters of ethics -- learning to let other people play their own games without trying to control them; learning not to walk around proclaiming that he hates babies.  He can do better and I expect him to, even while my goal is not to make him "indistinguishable from a neurotypical child."

5.  There's a crap-ton we don't know about autism.  We don't know why it affects more boys than girls -- are girls being underdiagnosed, or is there something about being female that protects them from developing autism?  We don't know what genes cause autism, or what environmental factors play into it.  We don't know what therapies work best.  We don't know why some kids display autism symptoms from birth while others develop normally and then regress.  We don't know what subtypes of autism there are and what treatments work best for each.  It's kind of scary living in a time when we recognize the condition, but know so little about how to deal with it.

6.  Autism is not the end of the world; it can lead to both struggles and superpowers.  It seems best to me, at this moment, to think of Marko most of all as a regular kid, with both strengths and weaknesses.  I want to play to his strengths without excusing his weaknesses.  Once I've gotten him the help I need to get him -- speech therapy, which he started this week, and probably school enrollment -- I can relax again and just do what I've been doing for some time now ... gently pushing him into the next skill he needs to work on while trying not to push so hard I lock his wheels up.  Exactly as I would do with another kid, except that his strengths and challenges are unique.  I feel, after reading all these books, that perhaps I am qualified to be his mother after all.

Wednesday, March 29, 2017

Fashion for the tactile-defensive woman

I don't know if anyone's actually interested in yet another post about my sensory issues.  I guess I feel the need to get this stuff out there, because there seems to be a lot more awareness of SPD and related issues among kids, but not so much said about adults with the same problems.  Naturally adults are more self-aware and able to handle sensory issues themselves, so it doesn't need to be talked about, but I often think that my own experience with them makes it easier to understand my kids' sensory needs.

So let's talk about fashion!

I've complained before that I wear very boring clothes, and that I never can seem to find, afford, or be brave enough to wear the kinds of clothes I admire on other people.  For instance, I love flowy blouses, but I never bought any.  Finally someone gave me some, and I don't wear them.  I like them, sometimes they get put on briefly for a very special occasion, but I always find some reason why I don't want to wear them.  The same goes for everything else I like -- I talk myself out of buying it, or I can't find it, or I can't afford it, or even once I own it, it just sits in the closet.

But recently I had the opportunity to shop for myself without any pressure.  John set aside some money for me to spend on some new clothes, now that I'm at last at a shape and size I can expect to keep for awhile.  I went by myself, because I know that when I go with others, they often talk me into buying things that I don't wind up wearing.  And I made a point not to be limited to the women's section -- men's clothes are often better quality.  So I should have been able to find what I wanted.  I was in Target, where I often admire the clothes on display.

Sure enough, I saw lots of things that, initially, I liked.  But I noticed that I could not even consider buying something until I had touched it.  And most everything I liked -- the filmy, flowy stuff -- felt terrible.  All rayon and polyester.  I realized that if I bought that stuff, I'd never wear it; it was too uncomfortable.  Occasionally I have an item of clothing that is soft enough to wear despite being synthetic, but even then it usually gives me trouble: either static (ugh, fabric clinging to me! NO) or trapping smells (yuck).

I went through that whole doggone Target feeling like the princess and the pea.  Nothing was soft enough except the t-shirts.  I passed up many gorgeous blouses, but I did walk out with some nicer t-shirts in beautiful colors.  I couldn't even make a real effort to buy pants.  There was one pair that was finally soft enough ... and then I realized I was in Sleepwear.  Sigh.

Later I tried a little online shopping, but it's really hard for me to get up the nerve to buy something when I can't touch it first.  Even cotton isn't always soft, and some things just aren't available in cotton.  I did pick out a dress in a linen/rayon blend, because it was just so pretty, and I'd be wearing a slip under it anyway so hopefully if it's rough, I won't feel it too much.

This is it -- though, maddeningly, it's on sale now for way less.  Ugh.

Here's what I like to wear: knit shirts, yoga pants, well-broken-in low-rise jeans, knee-length cotton-jersey skirts, flat shoes, smooth sweatshirts, flannel.

Here's what I don't like to wear: synthetic fabrics, nappy fabrics (velvet, suede, chenille), cable sweaters, anything tight (especially in the arms), anything that touches my neck, tailored or structured clothes, stiff clothes, sweatpants that are fuzzy inside, wool, anything bulky or voluminous, hats, scarves, coats, most boots, heels, gloves, nylons.  Some of these things I used to wear, and probably will wear again when I have a less stressful life (I used to live in a massive floor-length black circle skirt and a variety of chenille sweaters), but when I'm already kind of maxed out, I simply can't.  I try sometimes for special events.  Sometimes I succeed, and sometimes I end up spending half an hour trying things on before I get fed up, rip it all off, and go in jeans, a knit shirt, and a hoodie.  I used to feel bad for this -- like I'm failing at something if I can't wear "nice clothes" -- but honestly, I'm lucky not to have to dress a certain way for work, and if anyone has ever judged me for dressing down, they never told me about it.

I usually compensate, given the choice, by wearing brilliant colors that make me happy.  The new shirts I got are coral, red, royal blue, and pine green.  They make me feel "dressed up" even though I'm still just in jeans.  I still wish people made more gorgeous clothes in 100% pima cotton though!

It's taken me a long time to figure this stuff out.  Something that I've been putting together lately is that a kid with sensory problems does not necessarily know his senses are the problem.  I remember so many times as a kid when I found a certain scenario uncomfortable or scary, I wasn't thinking "this room is too loud" or "people are jostling me too much."  I just felt horrible and even sick.  Church was a common place where I would have tense or panicky feelings.  Our usual parish was okay, but others sometimes weren't, and I didn't put together that it was because the music was too loud and the pews too crowded.  I knew there were some textures I hated -- velvet, for instance, gives me goosebumps if I even think about watching someone else touch it -- but it didn't always occur to me to mention "I hate this dress because of how it feels."  I just wore it and felt cranky all day.

When I was in boarding school, I had an outfit forced on me that was just. so. terrible.  It was a dark green jumper and a dark-green-and-white horizontally-striped knit shirt.  Everything about this outfit was horrible: the shirt was very tight in the sleeves, which were three-quarter length so that they hurt my elbows when I bent my arms and collected sweat at the armpits.  The jumper was made of a suede-feeling material that made my skin crawl if I happened to brush against the outside of it.  It had big buttons down the front, which ended short of the calf-length hem, so that every step I took the loose sides would flap against my legs, making my nylons twist around my legs.  Every moment in that outfit was a torment.

And it was pretty ugly, too.

I knew that my clothes were uncomfortable -- not just that outfit, but basically all of them -- but it didn't connect with me till much later that maybe this had something to do with how claustrophobic I became at that time.  I got upset when people would jostle me, or stand too close, or loom over me.  I guess it was just too much stimulus.

And that, I think, is something to remember when dealing with autistic and SPD kids.  They don't necessarily know that they're overstimulated.  They just know that they don't feel good, and that certain things feel better or worse.  Marko does not ever say his clothes are uncomfortable, but he massively resists ever changing them.  He usually has some kind of explanation for it ("I have to wear red for Gryffindor!") but if I provide a different red shirt, that's still no good.  I suspect he's used to the clothes he's been wearing awhile, and if he puts on new clothes, he'll have to get used to them all over again. Who knows?  He also hates having his nails cut, claiming that it hurts even though I never cut them that close.  But I understand totally, because I too hate cutting my nails -- because of the noise it makes, and because my fingertips feel oversensitive for a day or so after I do.

I think the real trick, when it comes to shopping for Marko, is to bring him along and let him see and feel the clothes before we buy anything.  I don't know what it is that makes him love or hate a garment, but I do know it sucks to buy him something and have it wadded up in the drawer because he suddenly "hates trains" or "doesn't like green" or whatever is the explanation du jour.  It doesn't always work -- he swore up and down he'd start wearing underpants if I bought him the Star Wars ones, but he only did it once before abandoning them in the drawer and making a huge fuss if I try to get him to wear them.  So it's back to commando, and honestly, if he's more comfortable without underpants, I can't really see why he should wear them.

Here's the thing: I can wear things that make me uncomfortable.  But it's going to distract and annoy me all day if I do.  So I don't push Marko too much about clothes, knowing that even if I succeed, it might cost me some of Marko's good temper throughout the rest of the day.  Isn't the best way to set him up for success allowing him to be comfortable?  So I have started requiring clean clothes each day (something he resists) but I always make sure one of his top favorite outfits is available.  Unsurprisingly, he gravitates toward knit shirts and sweatpants.  Who wouldn't?

Facebook sometimes shows me ads for various "sensory clothes" -- tight tank tops, vests that squeeze you, even a whole cocoon that covers your whole body -- but that stuff actually sounds awful to me.  Perhaps that's for sensory-seeking kids -- not everyone with sensory issues wants less stimulus, like I do.  Then again, perhaps it's the same idea as white noise -- drown out the unwanted noise with a bigger noise which is at least consistent.  Still, white noise is still noise, and I still don't find that adding more noise to any situation makes it better for me.  But I wonder sometimes, if there is some kind of stimulus out there that would help when I'm overwhelmed.  Right now I just do exercises, and it helps somewhat.

But the best solution for now, when I'm constantly being touched and jostled and pulled on by kids, is to wear the very most comfortable clothes I can find.


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.

Saturday, February 25, 2017

7 one-month takes


1

So apparently Jackie is five weeks old today.  They certainly have not been racing by, but it still seems kind of startling when I do the math.  Five weeks is too late to change my mind and start spelling her nickname "Jacky," right?  Especially as I can't change the spelling on the tags in my sidebar.

This is the stage where you stop thinking, "Wow!  I'm recovering so fast!  The worst is over!  Every day gets easier!" and start thinking, "I'm as recovered as I'm going to be for a long time yet, and I can't believe it's still so hard."  That is, that's what I'm thinking this time around, and I remember it from last time.  I don't really remember this at all with Michael, and Marko was so much easier because there was only one of him.


Jackie (Jacky??) is firmly established as Not an Easy Baby.  All of my babies have had the unfortunate habit of waking up from naps while they're still tired -- usually after about 45 minutes.  With Marko it was easy, I simply nursed him or rocked him back to sleep and he'd take another hour or so.  But that's an option not open to me now that I have other noisy kids -- once the initial edge of tiredness has been taken off, the slightest noise gets the baby interested in what's going on and they won't go back to sleep for two more hours, no matter how tired and cranky they are.  With Michael my solution was just to have him take 45-minute naps four times a day, which was inconvenient and left him cranky and tired much of the time.  With Miriam I gave up and just held her for all her naps, which about made me lose my mind as well as causing me to neglect my other kids terribly.  And with this one, I haven't yet come up with a solution; I refuse to hold the baby for all her naps again, but I'm not keen on her constantly being cranky and tired all the time either.  I guess the only real solution is Keep Trying, because she occasionally does take a really solid nap of a couple hours.  I love these, but of course I spend the whole time worrying she is crying and I just don't hear her on the monitor, or else perhaps she is dead.  It's just so unusual that I can't quite believe a child would actually sleep that long in the daytime.

2

But she is worse than all the others in one respect, which is that she won't even GO to sleep.  Instead, she drifts off while nursing and then wakes up five minutes later with big bright eyes.  You can rock her to sleep instead, which will work for five minutes before she starts thrashing herself awake.  All the baby advice (besides the idiotically unrealistic "put the baby down awake") says you should hold the baby until they pass into a deep sleep before you put them down.  This is impossible anyway because we never ever get the half hour of relative quiet that this would take, not in this house -- someone always comes right up to me demanding a snack or having a fit or wanting to give the baby "just one kiss!"  But I know it's not just that because she spends all evening doing the same thing after the big kids have gone to bed: nurse, doze, thrash, wake up, fuss because tired, nurse ....  And she can do this for hours because the little snatches of sleep she gets are just enough to tide her over.  Eventually she doesn't even want to nurse anymore and then you're really screwed.

Obviously this doesn't happen every time because she does sometimes sleep.  But for the life of me I don't know the secret.  More awake time before attempting a nap? (Possible.)  More burping?  (Burping wakes her up.)  But the long and short of it is that naps are totally unreliable and also she stays up till eleven pm or even later every night.  She's sometimes willing to sleep in a little late, but that doesn't matter because of course the other kids are up by seven.

The one bright spot is that she reliably sleeps a good three or four hour chunk in the middle of the night.  In fact last night it was almost six hours!  This is truly delightful, especially on those nights when she actually sleeps in her crib instead of on me, but it also has the awful downside that we're not ecologically breastfeeding if she sleeps that long.  I cannot wake her, because I desperately need the sleep, but I fear the eventual result will be an early return of cycles, which, for me, means a nasty hormonal mess as prolactin and progesterone fight for supremacy all month long.  Oh, woe.  But the thought of willfully ending my nighttime bliss, the ONLY time I get to myself, and possibly triggering hours of sleep-wake up-fuss-sleep is just unbearable.

3

Despite how awful she is to deal with, I think I am beginning to bond with her somewhat.  The first week or two I was treating her like a hungry lump, but I realized that if I talk to her and treat her like a person -- even though she does not understand or care -- it helps me feel like she is a person.  I'm also taking lots of pictures, both to help me remember to appreciate her now, and to look back on later, after I do have a relationship with Jackie and want to remember what she looked like as a baby.


Miriam, of course, helps with this a lot by adorably trying to interact with her baby sister.  It seems obvious to me that Jackie either does not care or actively dislikes everything Miriam does -- I mean, getting kissed to within an inch of your life isn't exactly fun for anyone -- but Miriam insists that "her baby" loves it, so, whatever.  I don't mind playing along so long as she's not actually smashing the baby's face.

4

So Marko has been assessed by the school district now.  I didn't know this before, but thanks to IDEA, a federal law, even homeschooled kids are entitled to the same services for disabilities as the kids in school.  This includes assessment for disabilities, provided the school agrees that the child is suffering educationally from them.  That was a little scary because I had to explain to a table full of teachers why I thought Marko needed to be assessed.  Since most of his issues are social, I wasn't sure I'd be able to make my case, but when I pointed out the large number of adaptations I make to our schoolwork (like hanging over his shoulder every minute to keep him on task, and designing our entire curriculum around his obsessions) they said that this was definitely an educational problem as well as a social one.  Especially when I pointed out that he mostly will not talk to grownups and he might want to go to school someday.



This process was full of trials for Marko.  He had to have his eyesight and hearing assessed, read to a reading teacher, get assessed twice by a speech therapist, and have two long assessments by a psychologist.  In addition, both John and I filled out lots of questionnaires.  We got all the results from these assessments in writing, and then I had our eligibility meeting with a big panel of school professionals.  The whole process was scary for both Marko and me, but we got through it okay.  I was impressed with how well Marko did actually manage to communicate with the adults, despite the crying and rolling-around-on-the-floor meltdowns he had beforehand.  We could see, though, from the reports of the different professionals, that he had been very anxious and not done as well as we know he can with us.  Though really I don't suppose it matters -- if he scores low because he can't communicate very well, that's still a problem even if it's not the problem they were testing him for.

In the end they decided that he has "symptoms consistent with autism."  This is not an official diagnosis, but it is enough to make him eligible for special education if he were enrolled in school.  However, there isn't really anything they can do outside of school for him.  Speech therapy is available to homeschooled kids, but the therapist actually said it would not help because his speech problem isn't really a problem with speech itself, but something further inside his head ... she thought it was anxiety, but the psychologist thinks it's in his mental processing.  He has a lot of knowledge but has trouble accessing it quickly when he wants it.  So he might volunteer the information "two plus two is four" on Monday, but that doesn't mean he can produce the answer for me when prompted on Tuesday.  In the same way, it takes him extra time to put together and say a sentence, even if he knows all the words he wants.

At any rate we're assuming, based on this, that he does have ASD.  But that leaves us still stuck on what to do next.  I want to get him officially assessed, but that costs a mint and our fake insurance won't cover a penny of it.  I want therapy for him, but that's also not covered.  If he gets diagnosed, he's eligible for Medicaid which will pay for the therapy, but we can't afford the first step.  It may be that a regular pediatrician will diagnose him on the strength of all the assessment results we have, but they might not think it's enough and then we're out the money we spent for the appointment and are back to square one.  The whole thing is doggone frustrating.

We are seriously considering putting him in school, for next year at least, just so he can get some special help from someone who does know something about autism.  The sad fact is the "one-on-one attention" that is supposed to be the benefit of homeschooling isn't really available at home right now.  His siblings hang around and distract us both.  I've tried giving them work, too, but Marko is always way more interested in what they're doing than in what he's supposed to be doing.  Michael wants to be wherever Marko is, and Miriam wants to be wherever I am, and Jackie is of course attached to me like a tumor half the time.  So ... it's not what you would call an ideal learning environment.  We are making progress all the same, but all these assessments have really taken away my confidence that I'm doing it right, or that even if I'm not, no problem because kids are resilient/there's plenty of time to catch up.  Normal kids might be great at naturally challenging themselves and going for new things, but that's specifically the sort of thing autistic kids struggle with.  They want to stick with what's comfortable and familiar.  There have been times when Marko has a big drive to learn about something, but he hasn't felt that way since we've moved ... and I can't afford to let him learn nothing for a year, you know?  Not if he's already behind.  At the same time I know pushing too hard makes him shut down, and I dread even suggesting to him that we might make him go to school.  He hates the very concept.  I did want him to go to school someday, like in high school maybe, but he does not seem ready now, and he is terrified of other adults, large groups of kids, and being without me.  It's tough.  On Monday we are going for a tour of the school and to watch the special ed classes, so he and I can both see what he'd be in for if we did enroll him.  I think it might be great for him, for his confidence and his social skills and so forth ... but first he'd have to get past that initial terror of change.

I feel very mixed-up about this emotionally.  On the one hand, I love homeschooling.  I don't want to stop.  He's my little boy.  How can I trust other people to take care of him as well as I do?  While on the other hand, I can't help but admit it does kind of appeal, to have one less kid to worry about during the day, and to know he's getting the sort of extra help he needs without my having to neglect the whole rest of the family to give it to him.  And maybe we could go back to homeschooling another year.  I just don't know.  I don't want to be wedded to the idea of homeschooling if it's not working ... but on the other hand, I'm not sure it isn't working.  Yes, there's stuff he struggles with, but would he be doing any better in school?

5

I should say, though, that Marko seems to have pulled out of the rough patch he was in throughout December and January.  He no longer cries a dozen times a day "because he misses that lamp we used to have" or "because he's not excited about anything like he used to be."  I can't remember whether or not I've blogged about that.  My feeling was that he felt upset and sad about the changes in his life and was latching onto small details to explain it.  But he seems a lot happier lately -- fewer tears and fewer meltdowns.  He and Michael have a healthy balance of different obsessions that they pretend about all day -- Harry Potter and My Little Pony mostly, but Minecraft is still getting plenty of attention, and yesterday they surprised me by playing Redwall again, after about a year since it was a major interest.  Another reassuring thing is that he's stopped having so many accidents ... which, given that he has been potty trained for four years now, certainly worry me when they happen.

My friend with two autistic children, who has been a major resource to me right now, asked me the other day what behaviors Marko has that he most needs help with.  What things would we address in therapy, if he had access to therapy?  And I wasn't sure what to say.  He's mostly really great!  I don't actually have a lot that I think he needs to change.  But on the other hand, there are lots of little things.  I wish he would at least try to stay dry at night.  I wish he would more reliably use his fork at meals.  I wish he wouldn't say things "don't even exist" when he doesn't like them.  I wish he would introduce himself to other kids or say hello or goodbye to his friends.  I wish he wouldn't run and hide when a strange adult comes into our house.

Perhaps I should try to encourage these things more -- arrange more playdates, with prior coaching about how he can say hello to the other kids.  Go to story time at the library and ask him to say hello to the librarian.  The trouble is that he just doesn't want to try these things, and I'm not sure how to get him to cooperate.  He told me the other day that he has one friend and that is enough, he doesn't want to meet any more people ever.  Yet I suspect he would really enjoy having more friends if he would get past the initial fear of meeting them.

It's just so hard to know when to push and when to give him some space.

6

Michael is my relaxing child right now.  He has no real issues.  He's not even a little bit anxious or neurotic.  Sometimes he throws a fit, and normal decent parenting works to de-escalate it.  He had a tendency to be rude, I have been reminding him about please and thank you, and he's started saying those things very reliably.  He often gives me a hug and kiss for no reason, or a big smile and a hello.  He's suddenly taken an interest in letters and seems to know a great deal more than I've ever consciously taught him.  I do not worry at all about him.

And Miriam, aside from her tendency to maul the baby with love, has been doing fine as well.  She occasionally asks to nurse, I offer a book instead, and she's fine with that.  I really wish she could talk in a volume under a shout, or play independently EVER, but, well, she's two.  She's slept through the night for many nights recently, though not for the past couple.  Anyway it seems she is making progress on that.

We've had some really nice weather for a few days, which is such a help.  I can kick the kids outside while the baby naps and rid myself of all the stress I normally have about the noise they're making.  (I am not sure the noise they make makes any difference to how much the baby naps, but I always worry it will.)  So they run around being completely bananas, the baby naps for her brief moments, and I get some peace and quiet to drink tea and read mystery novels.  (Dorothy Sayers; highly recommend.)



Jacky giving big sister the stiff arm

7

And how am I doing?  Eh, I've been better.  I've also been worse, so, bright side there.  Sometimes I am totally fine.  Days when Jackie naps are delightful.  I do some chores, lavish attention on my big kids, and then have some wonderful time to myself.  Days she does not nap are horrible.  I get so touched-out, I want to crawl out of my own skin.  I start feeling irrationally angry at the world.  I put all my hopes on Jackie actually napping later on, and then when she fails to do it, I get even more angry because of the disappointment.  I am very proud of myself that I haven't yelled much or hit anybody at all, even when they are totally responsible for waking the baby.  I figure so long as I can keep my ticked-off feelings from affecting anyone else, they're no different from a headache -- just something I have to get through.

I just wish there were a cure for them other than long periods of quiet and no-touching.  Exercise does help, but since I'm not fully recovered from childbirth, I probably shouldn't knock myself out with long walks or vacuuming or whatever.  At any rate hopefully I can start some exercise soon, and then maybe I'll feel better.



When I'm not feeling angry, I cycle through all the other bad feelings.  I've had a few days of inexplicable sadness, a few days of excessive anxiety, a few days of intrusive thoughts.  The intrusive thoughts are probably the worst: I can't seem to get my mind off the possibility of some gruesome thing happening to the baby, or the fact that I will someday die.  Or I think about how great my life would be right now if Jackie had never been born, and then feel overwhelmed with guilt.

But the anxiety has been bad some days too.  I always thought religion was no comfort in distress until I lost it; now I can see just how crippling anxiety is when you don't think there's anyone to bail you out, or any long-run plan which will make it all worthwhile.  Basically it means there is no one looking out for your kids besides you, so you have to make sure you worry about All The Things, certain in the knowledge that if you fail, it means the extinction of everything your child is or could someday be, which will be 100% your fault.  If it were just a matter of my preferences, I'd love to believe this stuff were out of my hands.

Despite all the various kinds of sadfeels, I also feel happy sometimes.  This nice weather is great, and every time I am able to spend some time just sitting under the open sky, I feel very happy and relaxed.  Of course it's only five minutes before I hear the baby cry on the monitor, or Miriam starts demanding I go into the magnolia tree with her and play house, but it's something.  I also find a lot of relaxation in reading; I might not be able to knit or spin while holding the baby, but I can read for hours and it helps distract me from the "ahhhhhh someone's always touching me!!!!" thing.

As during pregnancy, I have to focus on either the moment or the long view.  I can't think of the months ahead when I will still be dealing with all the same things I am dealing with today.  I have to remember that by midsummer I will have a baby who can sit up in a high chair and let me eat my dinner with two hands.  Or that within a year, my little girls will be playing with each other for real.  Conversely, I can stay in the moment, and think "hey, right now the baby is sleeping and I am able to write this blog post!"  Nothing worse than a whole nap going by and you realize you never appreciated it, but only scrolled mindlessly through facebook getting mad at strangers.



And how have you all been?

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