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


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.


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.


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.


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?


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.


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


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?

Tuesday, February 7, 2017

Notes from postpartum

People don't really tell you about those first couple weeks of having a baby.  It's not their fault -- during those weeks, they're too busy to talk to you, and once they're over, they immediately forget because they were so sleep-deprived at the time they didn't make many memories.

But I've got a moment right now (who knows how long it'll last!) and I'm not too far out from those first days to forget, so let me try to jot down as much as I can.

Giving birth is, of course, really difficult and painful.  It's always the cruelest shock afterward to remember that you don't get to just kick back, relax, and get back to your old life as soon as it's over.  No, on the one hand you feel like you've been run over by a truck, and on the other, you're responsible for a new tiny human who is as needy as they will ever be.  (Some babies sleep soundly for their first day or so.  NOT MINE.)

So you basically stay in bed, getting up only to go to the bathroom (and put on fresh giant mega-pads because, well, giving birth is a grisly business) while the baby is next to you in bed, occasionally sleeping but mostly just wanting to nurse.  And since it's just born, it doesn't know how, so you spend most of your time trying to teach it to latch on.  This doesn't leave a lot of time for what you really want to be doing, which is eating and sleeping.

I can say, though, that this time was a lot easier than last time.  Nobody was sick, thanks to my cloistering the family for the past several weeks.  Miriam adapted beautifully -- John says she was a great deal of trouble, but all I saw of her was her occasionally breaking into the bedroom to hug and kiss Jackie and me.  She has even weaned ... basically just quit asking to nurse for a week and a half, and when she finally did ask, I felt like, "Well, why can't she just be weaned now if she's that uninterested?"  So the few times she's asked lately, I've offered a book instead and she's been fine with that.  Definitely NOT what I expected.

Now, don't get me wrong -- she occasionally throws these massive superfits from which there is no talking her down. And her nighttime sleep is spotty at best.  But, well, she's two, it's pretty normal.

The boys are pretty much unaffected.  Marko still maintains that he hates babies and wishes Jackie were never born.  I don't exactly blame him; he's had a hard couple of months as it is.  I remind him that when she's older she might be interested in more of his favorite things.  And Michael for the most part doesn't seem to care; he'll take a mild interest if she's getting her diaper changed and then gets back to serious playing.  The only issue the boys are giving me right now is that they are SO LOUD and they always want to be where I am, which makes it difficult to get the baby to sleep.  At least when I do manage to get her to sleep in her bed, it's far enough away from the playroom that their noise rarely wakes her.

But I'm getting ahead of myself, because the whole first week I was never able to put the baby down.  Neither was John able to hold her for more than twenty minutes or so before she started crying for me.  The first two days, she nursed continually (because my milk wasn't in, so she was always hungry).  That includes nighttime, and she couldn't latch on very well unless I sat up and had a light on, so ... those first two nights I basically did not sleep.  Then my milk arrived, as always, superabundantly, so she latched even worse and got really gassy.  It felt like we were in a constant cycle of nurse - fall asleep for two minutes - burp and wake self up - tired and want to nurse.  There was no putting her down, there was very little even lying down.  All that dread I first felt when I found out I was pregnant came rushing back -- is THIS how it's going to be?!  Followed by "I wish we had not had her" and swiftly thereafter by "I'm a horrible mother, how can I think such a thing?"  Ah well.  I know that unplanned pregnancy puts me at higher risk of postpartum depression, but luckily those thoughts did not last and I feel better about things.  No, I'm not GLAD I got pregnant, but hey, she's here now, may as well get on with it.

Luckily, it did get better quickly, as I got the oversupply under control with block feeding.  She's still not super great at latching; she needs a few tries before she can get it, and for some reason she struggles twice as much on the left side.  I think she may have an upper lip tie, though I'm not sure what I will do about that.  In any event, by day four or five she was letting me lie down to sleep for several hours at a shot, which felt GREAT after all that sleep deprivation.

One of the hardest things about the necessary rest postpartum is having very little control over anything.  Couldn't cook, so I could only eat the things John knows how to cook.  Couldn't get up to deal with the kids, so I had to sit and watch John manage things differently from how I would.  Couldn't go to Miriam at night even though I could hear her saying, "Not Daddy, Mama!"  It's really rough.  I almost felt like I didn't even count as a person at all -- not as an adult, at least.  It just doesn't feel right not to be able to take care of your own needs, let alone anyone else's.  Even once I felt able to do things, I still couldn't because I had a baby on me.  It's hard to get across to people what it means to have a baby on you all the time.  Most of the time, no problem.  But all the time ... I'm talking, trying to figure out how to use the bathroom while still holding the baby.  Or just skipping brushing teeth because the baby is asleep NOW and you'd better go to bed with her while you can.  You can't do much of anything, especially not if the baby is nursing and the slightest movement will dislodge her, or if she's asleep and even talking will wake her.

Close to a week in, I started being able to set her down for short periods -- maybe a half hour nap here, five minutes of happy awake time there -- so I could rush around and use the bathroom and shove food in my face.  That was nice.  After nine months of pregnancy and a week of "baby glued to you" there is nothing more wonderful than walking around by yourself.  I felt so light!  (I am not really light.  I'm 18 lbs heavier than I was.  But that's not too shabby considering.)

Of course that's the time John went back to work, so things got difficult.  It's one thing to be able to just barely take care of your own needs again, and another to be responsible for three other people in addition to the baby that needs 98% of your time and energy.  That first day was really hard, despite the baby taking one really good nap, because so much of the time people wanted things and I had the baby almost asleep.  I would say, "If you'll just wait and be quiet, she'll fall asleep and I'll put her down and take care of you," but with Miriam especially that fell on deaf ears.  She would stand right next to me screaming like a banshee, thus ensuring the baby would never go to sleep and therefore she would never get whatever it was she had wanted.  Again -- I've been down this road and I remember.  Having a baby and a toddler is SO HARD.

On the other hand, during that second week I slowly started to feel better and better, and Jackie napped more and more, so I soon felt a lot more capable.  From "barely keeping the kids alive" at the beginning of the week, I progressed to "unloading the dishwasher, baking cookies, and making dinner" by the end.  It feels good to be back on the job.  John is still taking over as much as humanly possible, for which I naturally feel guilty, but I'm doing most things now and feeling very proud of it.  Still not ready to leave the house with four kids, but I'll get there.

Friday, January 27, 2017

Jackie's birth story

Trigger warning: If you've had awful, long, traumatic births, you might hate me after reading this.  And if you have never had a baby, do not choose to have one on the basis of this birth story!  They are mostly not like this!

The week before Jackie's due date was emotionally draining.  Every day I'd wake up thinking "maybe today!" and every night was a letdown of "guess not."  Did not make it better that I had painful contractions sporadically throughout the day, and quite a few every evening.  Those were one of the reasons I quit dreading labor and started wanting it to happen so it could be over -- if I was going to be in pain anyway, I wanted it to just get worse so it could get over.

Passing Tuesday was a particular letdown; four days early was when Miriam came and I had had in my head that Jackie would be born sometime between my earliest (Michael, two weeks early) and latest.  I started asking myself, "What if I go PAST my due date?"  And, "What if this labor is nothing like my previous labors, but long and complicated?"  I worried about having to be induced.  I worried about having a c-section.  I googled "what percentage of women go into labor by 40 weeks?"  Every day I worried about letting John go to work for fear I'd go into labor while he was gone.

At the same time, I felt bad that I was wishing away the time.  I don't believe in wishing away a moment of my life, but at the same time, some moments are no fun!  I tried to live the last few days with focus, working on projects and paying attention to my kids, and I mostly was able to do that despite my frustration.

Thursday night, we went to bed feeling, yet again, frustrated it hadn't happened.  Friday would be my due date, and so I had a vague hope it would happen, but no particular reason to think it would -- nothing that could be taken as a clear labor sign.

But at about 2:45 am, while I was lying down with Miriam, nursing her back to sleep, I had a strong contraction.  This didn't alarm me, because nursing her often gave me contractions, even quite painful ones.  I had a second very shortly after, which surprised me a bit, but I figured it was very likely nothing.  I visited the bathroom on the way back to bed, and had a third contraction before I left, and that was the point at which I thought, "Gosh, three really strong ones in under ten minutes, could this be it?"

I got back in bed and tried to sleep, knowing that the real difference between real labor and false is that false labor goes away if you rest, and the real thing never does.  And for ten minutes I felt nothing, so I started to figure it wasn't happening after all, and began to drift off.  But then they started up again -- 5-8 minutes apart, not entirely regular, but definitely painful enough that I was starting to want to get out of bed.  (The other big difference between real and false labor being that false labor makes me want to be still, and real labor makes me not able to be still.)  I stayed put for a little longer, figuring I'd let John catch just a bit more sleep, but at 3:30 I woke him up.

He instantly got wide awake and we got the room ready for the birth.  Then, worried we'd wake the kids, we went down to the family room.  I planned to spend early labor down there but go up in time to actuallly give birth in my own room.  We called up the midwife and she said she'd hurry over.  For about half an hour I paced around, leaning on the back of the couch when I had a contraction.  They weren't all that bad -- I mean, they hurt, but with five minutes between them, it was no trouble coping.  In between them I knitted or chatted with John -- basically just keeping my mind in the present so I didn't freak out about the next contraction or how things would get worse.  I definitely had some adrenaline rushing around -- my heart was pounding and my hands shook a bit -- but I was able to read this as excitement and keep fear at bay.  This is a huge improvement over the last two labors, which I mostly spent panicking.

The midwife made it over in record time -- afraid she'd miss the whole thing if she delayed.  She got there a few minutes after four o'clock and was relieved to see I was doing just fine -- pacing around, having contractions, but quiet and calm during them.  They were certainly picking up speed though -- I remember commenting that I had been expecting a five-minute break and was put out to get only three.  John rubbed my back during the contractions, which helped a little. The main thing that helped was to keep swaying and moving.

The midwife (she told me later) texted her two assistants soon after she arrived that I was in labor.  They texted back, "Let us know when you want us to come!"  She texted, "GET IN THE CAR NOW."  After last time's quick labor, she wasn't taking any chances!

It was about 4:45 when they arrived.  They took a look at me and said something like, "Guess we didn't need to rush after all."  But the midwife said appearances were deceiving and we'd better head upstairs.  I agreed -- though I was still externally quite calm, the contractions were pretty intense and close together.  I wanted to get up to my room while I was still getting long enough breaks to climb the stairs!

Immediately on getting to the bedroom I had another big contraction.  Everyone was bustling around unpacking the birth kit, but I had my hands locked onto the side of the crib trying to cope with the pain, which was definitely getting bad by now.  John looked at the clock, which read a few minutes to five, and said "we're not making it to six."  I said, "You don't know that," not because I really disagreed but because I felt it would be really discouraging to have a deadline in my head and then possibly not meet it.  When the contraction was over, I wanted to go to the bathroom one last time (because I knew we were getting close) but before I could take two steps toward the bathroom, another big one hit.  In this one, I started making noise, leaning on John and whimpering because it was getting BAD.  But I still managed to keep from getting discouraged. I wasn't thinking it was close to the end or anything like that, I just was keeping my mind in the present ... something I've had lots of practice with in the past nine months!  I remembered at some point to focus on my breathing and while that didn't exactly help, it did seem to make the contraction pass faster.

Again, no more than a few seconds passed before the next one, and I commented that I was feeling that running-away feeling -- the feeling like there was something I was supposed to be doing to escape from the pain, but there isn't anything.  There was intense pressure building up and I wanted to find a position to escape from it, but this time I remembered what this feeling meant -- "you're going to have to push soon."  I wanted to try a little pushing, but I never had gotten a chance to use the bathroom and was afraid I'd pee myself.  (I'd whipped my pants off when I went upstairs, because the waistband felt too tight (BIG CLUE that I was starting to feel pressure).)  But during that contraction, the pressure was just crazy and I thought, "To heck with it, I'm going to just give it a little try."  Gave a little push and there was a massive SPLOOOSH!  My water broke, all over the floor and John's socks.

Everyone started pushing me to get on the bed.  I didn't want to because I wanted to wait for the end of the contraction, but they were all very insistent so, still pushing (because I couldn't stop at this point) I climbed onto the bed.  And while I was doing this I felt .... the baby crowning.  I was staggered, because I mean, really, but I didn't really have time to think about it because she was COMING OUT!  I just kept pushing and she came shooting out.  The midwife passed her between my legs and laid her on the bed (I guess I was on all fours? or kneeling?).  I just kind of stared at first ... like, wait, what?  Then I tried to pick her up and couldn't because she was totally coated in vernix and really slick.  The midwife said she hadn't checked if it was a boy or girl, so I managed to roll her over, and -- she was a girl!  It was 5:04 -- we'd been upstairs for probably ten minutes.

She was also making a noise like an air-raid siren, which is new to me.  My babies have all made a noise to let us know they were breathing, but they didn't SHRIEK.  And I worried of course that someone was going to wake up with all that racket.  Everyone helped me turn over and recline on the bed.  I wanted to nurse her, but the cord was too short and we weren't cutting it yet, so I just held her on my belly and listened to her howl like a banshee.  It was kind of stressful but I still felt relieved and happy.  I was just staggered with how easy the whole thing had been -- barely more than two hours, and really only the last ten minutes had been all that bad.  I felt like laughing at myself for having dreaded labor so much when that was all it was.  And, of course, so relieved not to be pregnant anymore.

The placenta came out without trouble, and I was able to nurse Jackie for the first time.  The midwife checked me out and found that, for the first time, I didn't need stitches (though I had a tiny superficial tear).  I had been so sure I must have torn terribly with her coming out so fast, but apparently not!  Even though, as we found out a few minutes later, she was my biggest baby by half a pound.

And ... that was it!  Around 5:30 Michael woke up, and after giving him some breakfast, John let him come say hello to Jackie.  Marko woke up a bit later and John just let him eat and go play, because springing a new baby he didn't want on him first thing in the morning seemed kind of harsh -- though he did come in about an hour later (to see ME, not the baby, he made sure to mention).  Miriam woke up unusually late at almost eight o'clock, and she was SO HAPPY OH MY GOSH.  Climbed all over the bed in a tizzy demanding to see "her friend Jackie."  It was super cute but eventually John had to peel her off me and get her to eat breakfast and go play.

And how have things gone subsequently? Well, we'll see if I ever have time to post about it.  Your biggest clue is that it took me a whole week to get the time to write this story.  Let's just say, Jackie hasn't been super easy so far.  It's mostly that she's had some issues with latching, exacerbated by my massive oversupply, but her tendency to let out the air-raid siren every time she's mildly discontented is another part of it.  However, I'm tentatively hopeful that the worst is behind us, because my milk supply is regulating and she is latching on much more reliably.  She is even DOWN right now.  She has been napping ON HER OWN for over an hour!  Considering John went back to work today, it's not a moment too soon.

My apologies for having a "propaganda birth" -- the kind you'd show childless women to convince them that labor is not so bad, they can totally do it drug free.  Remember that I claim zero credit for this -- it's not like I'm "good at labor."  Labor, this time, was good to me.  I kinda feel like the universe owed me ONE stroke of good luck, considering.  I'll take it and be thankful, because hey -- you can't look a gift universe in the mouth.

Friday, January 20, 2017

Jacqueline Irene

Jacqueline Irene
Born 5ish in the morning on her due date
7 lbs 8 oz - my biggest
Short and relatively easy labor; I still feel pretty wiped out though
Kids love her - even Marko seems okay with her
Parents have decided she's cute enough to keep and will not be leaving her on the church doorstep
More details to follow

Tuesday, January 17, 2017

7 still-pregnant takes


I did not think I would be writing a blog post today. Today is four days from my due date, that is, the longest I've ever been pregnant.  Miriam was (if I remember correctly) due on the 24th and born on the 20th.  So either I have the baby today, or I break my previous record.  I was kind of counting on it being more of an average for me (say, 38.5 or 39 weeks) and it's kind of maddening to still be pregnant at this point.

You see, you hit 37 weeks and it's like "I could go into labor at any time!  Oh no!"  You rush around getting ready.  Then you've got all the stuff done but you're not emotionally ready -- you still don't want to go into labor.  But as the days go by and you get more and more uncomfortable, it becomes clear that there's no way out but through.  Every day, you're a bit more open to the possibility that you could go into labor today.  And somehow in your head it feels like, if you are really mentally ready for labor, it will happen.

But nope.  It will not.  You fully accept that labor will happen.  You visualize it and manage to do it without fear.  You think about what having a baby will be like.  You actually look forward to all this!  And you don't go into labor.  Pretty soon, this wonderful state of acceptance passes and you start to psych yourself out again.  You can go through this cycle any number of times before the baby actually shows up.  Basically the only way to make labor happen, as far as I can see, is to infect the children with the flu or run out of groceries.  Because it really seems there is a rule that you can't ever go into labor when it's convenient.

This weekend would have been great.  We got groceries Saturday morning and had a whole three-day weekend with nothing going on.  But nope.  Not a thing.  Instead it's presumably going to happen while John is at work, and I'll have to have the anxiety of trying to figure out if I'm really in labor early enough for John to get home in time.

The last weeks of pregnancy are a head trip, is what I'm saying.  They suck.


I'm going to try to jam in some book reviews here, because I wanted to write whole posts for them and I just don't see how I'm going to do that at this point.

The first one is The Sensory Sensitive Child, which I got because I was thinking that sensory processing disorder might be the root of Marko's issues.  My conclusion, after reading the book, is that it really doesn't sound very much like him.  However ... it does sound a great deal like me.

It turns out that SPD is kind of a made-up diagnosis, because there isn't really a hard and fast definition of it, and we don't know what causes it.  Depending on how you define it, between two and twenty percent of kids have it.  It seems to me that if a diagnosis could apply to 20% of kids, it's not really a disorder -- it's just one way kids can be, and schools and parents should be adapting to it rather than considering it a problem with the child.  On the other hand, if 2% of kids have a really severe problem that goes beyond what other kids do, we really need to find solutions!

In short, SPD means that a child isn't processing sensory input as well as other kids do.  For any given sense (sight, hearing, touch, sound, taste, balance, and proprioception) a child may be oversensitive (finding normal amounts of stimulus excessive or painful), undersensitive (not even aware of a stimulus, which can result in the child seeking more intense stimulus), or having trouble discriminating (they may mistake a pat for a shove, one sound for another sound, or whatever).  And it won't always be the same for all senses -- a child might be extremely greedy for more vestibular input, which will come out in constantly trying to hang upside-down or bounce a trampoline or climb things, while being overwhelmed by too much noise.

Standard treatment is occupational therapy, which anecdotally is said to help. Unfortunately, there's not a lot of really solid evidence.  There are specific kinds of occupational therapy that have been studied a little, but it's still not clear that they help.  What most OT's will do is practice sensory activities with the child.  If they fear a certain kind of stimulus, like getting their hands wet, they might try to coax the child to try it a little bit with some water play.  Or if the child has been climbing all over everything because of sensory seeking, the OT can encourage them to swing or bounce.  And if the problem is sensory discrimination, specific games can be devised that give the child some practice at that.  In short, more sensory activities seem to be the cure for everything.

In addition to this, the author talks about looking at the child's life "through a sensory lens," considering how much and what kinds of sensory input we are expecting the child to cope with every day.  This can help the parents and teachers understand why a child is melting down or refusing to do certain activities, while at the same time planning better to forestall future conflicts.  My answer to this was basically, "DUH."  I mean, what kind of parent does not consider that a noisy environment is going to lead to tears, or that when a child says they don't want to wear that shirt, it might be itchy?  But I guess I've always been aware of these things because they bother me.  My kids do have sensory meltdowns sometimes, and I always know that's what they are, because it seems perfectly understandable to me.  If we've spent all day at the museum, naturally they'll cry.  And where possible, I always alternate very busy days with days with a lot of outdoor time or a lot of quiet.  It's what I would want, and it seems to help everything go more smoothly.

The author also recommends making sure a child's "sensory diet" includes a lot of outdoor time, and not too much screen time. That seems obvious to me -- even the most educational game does not provide the sensory aspect of playing, and that's a big part of why children play.  Outdoor time encourages lots of exercise and a mild sensory experience.  I know that when I go outside, it feels like a weight lifts off -- noise no longer reverberates off walls, there's so much space, everything just seems a bit more friendly.  I wonder how many kids wouldn't even be diagnosed with SPD if only they got enough time outside.

But the book did not offer hope that I would someday be okay with a very overstimulating home life.  It had interviews with teenage SPD sufferers that basically said, "It's still difficult for me, but I have ways of coping with it by avoiding some situations and recharging in these ways."  That's what I do, too -- I try to limit sensory overload and, if given half a chance, I can cool down from it by spending time in a low-input enviroment (read: time without the kids).  But there isn't a cure, in the sense that I would someday be okay with lots of noise and touching, because no one really knows what makes my brain so sensitive to these things while other brains aren't.  No one can even decide if the problem is my brain, or the overstimulating environment of the modern world!

I would like further research to be done which explores the physical angle -- are there vitamin deficiencies or hormonal states which can make a difference?  Because my experience has been that pregnancy definitely increases my sensitivity, as does breastfeeding to some degree.  I've had times where things spontaneously got better even though my life continued to be overstimulating, and it's been quite a puzzle trying to work out what it is.  I know that exercise helps a lot -- as if noise and chaos were pouring a jangly energy into my body which has to be worked out again.  I know that attempting to distract myself does not help.  I know that there is no sense I have that craves more stimuli -- they all want less, though it's hearing, touch, and proprioception that are the most oversensitive.  I know that I cope better if I minimize the unnecessary kinds of stimulation -- the wrong clothes, for instance, or hair on my neck.  But I knew all this before reading the book.  Basically, the main thing I got out of it was, "Boy, my childhood would have been a nightmare if my mom hadn't totally understood all this."  As it was, the years I went to school were inexplicably overwhelming, while homeschooling allowed me to find my own comfort level a lot more.


The other review is Hillbilly Elegy.  It's such a great book that I mostly just want you to go read it yourself.  It's a memoir of growing up "hillbilly," explaining the culture and problems of Appalachia as well as the Rust Belt (where the author's family relocated).  What really hit home to me was how extremely similar rural white poverty is to the stereotypes of urban black poverty: broken families, drugs, neglected children, alcohol abuse, unemployment.  It can be hard to disentangle the causes from the effects -- maybe this person is unemployed due to drug use, while this other one got on drugs to deal with the depression of being unemployed.  But once it's started, it's hard to stop -- the diseases of poverty get entrenched and then spread.

He certainly convinced me that some aspects of redneck culture aren't positive.  The tendency to start fights over insults, for instance, or to have very combative relationships with one's spouse or children.  In fact, I hardly want to talk about this, because a lot of what he said would have been really offensive if said by an outsider.  I kind of wonder how "real hillbillies" would feel, reading this book.  At first it felt like an anthropological study, classy city people being introduced to this strange subculture. But by the end, it started to sound like it really was intended for the hillbillies themselves -- showing the way you, personally, can pull yourself out of that culture.

The big question throughout was, "Are these people victims of circumstance, or do they create their own problems?"  And the answer, as usual, is both.  They do have a harder start than other people do, but in many cases they could overcome this if they tried. The trouble is that a lot of their circumstances teach them learned helplessness -- the belief that nothing they could do would really help, so why bother?  Why save money when you'll never actually get out of poverty that way?  Why go to rehab when nine times out of ten it doesn't work?  Why try to keep this job when it's a crappy job that will never go anywhere better?  Yet in the end, the author did "make it" -- not only graduating from college but getting a law degree from Yale!  He credits some extra advantages he had -- a supportive grandmother who rescued him from his abusive, drug-addicted mother, a biological father who gave him a stable second home to go to, a huge leg up from his time in the military -- but he also points out that it was still very difficult to succeed.  He wonders if other people from his hometown could have done the same, while still admitting that they would have been able to achieve a lot more than they did if they had put in more effort.

Here's a quote that seems to encapsulate a lot of this message:

"We can't trust the evening news. We can't trust our politicians.  Our universities, the gateway to a better life, are rigged against us.  We can't get jobs.  You can't believe these things and participate meaningfully in society.  Social psychologists have shown that group belief is a powerful motivator in performance.  When groups perceive that it's in their interest to work hard and achieve things, members of that group outperform other similarly situated individuals.  It's obvious why: if you believe that hard work pays off, then you work hard; if you think it's hard to get ahead even when you try, then why try at all?

Similarly, when people do fail, this mindset allows them to look outward. I once ran into an old acquaintance at a Middletown bar who told me he had quit his job because he was sick of waking up early.  I later saw him complaining on Facebook about the "Obama economy" and how it had affected his life.  I don't doubt that the Obama economy has affected many, but this man is assuredly not among them.  His status in life is directly attributable to the choices he's made, and his life will improve only through better decisions. But for him to make better choices, he needs to live in an environment that forces him to ask tough questions about himself. There is a cultural movement in the white working class to blame problems on society or the government, and that movement gains adherents by the day.

Here is where the rhetoric of modern conservatives (and I say this as one of them) fails to meet the real challenges of their biggest constituents. Instead of encouraging engagement, conservatives increasingly foment the kind of detachment that has sapped the ambition of so many of my peers.  I have watched some friends blossom into successful adults and others fall victim to the worst of Middletown's temptations -- premature parenthood, drugs, incarceration. What separates the successful from the unsuccessful are the expectations that they had for their own lives.  Yet the message of the right is increasingly: It's not your fault that you're a loser, it's the government's fault."

While the author mentions a lot of causes of poverty in these depressed areas, his most important point is this: as long as people believe they can't rise above it, they won't.  That doesn't mean every poor person in Appalachia could be bootstrapping their way out of poverty -- but that they have to believe they can, or they surely can't regardless of how many legs up they get.  The rest of us might do better to think of it as an external problem, so that we don't forget to offer that leg up that might make a difference, but the poor person himself needs to believe that success is possible and dependent on his own effort.


This is something that I often wonder about myself, too.  So many times I've felt like I just couldn't get past some handicap of mine -- my exhaustion, for instance, or a spell of depression -- and then one day I make up my mind to just get over it, and I do. And I always wonder afterward -- if I'd just made up my mind to shake it off sooner, could I have done it?  And if that's true, does that mean the whole problem was of my own creation the whole time?  Or was it, perhaps, just the right moment, and no amount of resolve could have solved the problem until the moment I actually did?

Either way, the same thing is true: when you've had a problem for awhile, you can get used to it and assume it can't be changed after it can.  You say, "This is the amount of energy I have," and resign yourself to it, so that you don't necessarily notice when it starts to get better.  Only when you convince yourself that you can shake it off, and you put all your effort into trying, can you really do it.


Which reminds me that I did eventually think of a word for 2017. It's "rise," as in "rise to the occasion," or "rise above the circumstances."  I don't know if I will succeed at rising to all the occasions I need to this year -- but I'm resolved to do it.  I am trying to convince myself it's possible and just a matter of determination, because only with lots of determination do I even stand a chance.

What I can't do -- what will utterly destroy me -- is spend the whole dang year feeling like a victim.  Yeah, I'm mad that NFP was sold to me as something that would work, and it totally did not work.  I'm mad that I don't have more control over my life than I do.  But, good golly, I still have an awful lot of control over my life!  I can choose to let problems ride right over me, or I can choose to rise above them.  I can choose to be a good mom of four, or a bad one.  I have to spend the next 18 years with more responsibility than I wanted, but I'm sure as heck not going to spend the next 18 years whining about it.


The one nice thing about not having had the baby yet is that I have been trying out a lot of short projects to fill up my time.  I've been playing a lot on my spinning wheel (and actually wrote two posts on my spinning blog!).  I got some peanut oil and have done a little deep frying -- something that's always been a failure in the past because I didn't have a good thermometer and never had enough good oil.  In the past week, I've made french fries, chicken fingers, and donut holes, and they all turned out great!  I've done no end of coloring, in the coloring books I got for Christmas.  It isn't useful, but it's a good way to use up nervous energy when I mostly can't be on my feet. And the kids are usually very happy to sit next to me at the table with some coloring pages for quite awhile before they get bored and start throwing all the pencils on the floor where I can't reach them.  (In fairness, that would just be Miriam.)

These kaleidescopic designs are my favorite.


I have had just the worst time finding books that are on Marko's level.  If a book has too many words he can't sound out, he gets frustrated and refuses to try anymore.  And he also randomly decides he hates whatever books I do manage to find.  So finally I resigned myself to making some easy readers for him myself.  I just fold a paper into a 16-page booklet and write a sentence on each page.  That's just about the right size for him, and if I'm careful about the words I choose, everything is within his ability so that he can get in reading practice without feeling frustrated.

The topics?  Minecraft, of course.  It is very difficult to come up with a story about Minecraft that uses an "ai" or "ay" word on each page, but hey, I like a challenge, and he isn't picky about the plot being particularly interesting. So long as it's about Minecraft, it doesn't really matter.

This is the sort of thing I really enjoy.  I love teaching; I've waited and waited for six years to actually get to start some serious homeschooling and here we are at last. I love using my creativity to find the perfect way to get through to a student, and I love the thrill of the two of us actually learning something at last.  When Marko and I get through one of his little books, he and I are both ridiculously proud of ourselves.

The only downside is, each of these books is good for exactly one use, because he memorizes the whole thing.  This kid.  Very much too smart for his own good.

I doubt I'll be blogging again before the baby shows up, sooooooo ... see you on the flip side.
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