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.
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