Sleep Study

Last Thursday I participated in a sleep study.  I haven't felt rested or refreshed upon waking for approximately a decade and a half, so upon finding out this was not normal, I informed my doctor.  She suggested a sleep study, but they're expensive, so it was then a question of whether I could get it ordered, and how much I'd need to pay.  I ended up getting a heart doctor to order the study, of all things, but a doctor's order is a doctor's order.  I wasn't able to track down the cost of the study, as no one can or would tell me, so that's worrying.  The cost of a sleep study, without any cost-sharing, is $2000.  Needless to say, I'm not interested in paying for the whole thing, but it sounds like I probably won't have to. 

I was sent paperwork ahead of time, which I begrudgingly filled out.  The paperwork also instructed me to come tired, and to go in the Emergency area of the hospital.  I did that, but it was anxiety-provoking to be near the ER and to actually walk in the ER entrance.  Also the security guard, who was cleverly hidden off to the side, nearly made me jump to the ceiling when she asked me what my business was.  I guess a gigantic bag and a pillow aren't necessarily an obvious sleep study tell, or maybe she wasn't allowed to act on assumptions.  She wasn't, like... unfriendly, just... not really friendly either.  After I was given the okay to pass into the waiting room, I was relieved to see the waiting room was devoid of bleeding, sick, or otherwise unhappy people.  There was a half-deaf older man that insisted on watching "the game," though, and it turned out he was also scheduled for a sleep study. 

After awhile, I was escorted up to the room and helped to settle in by a lady I didn't see again.  The room itself was kinda like a medium-low quality hotel room. Clean, but not fancy.  The bed was fine, at least, though I suspect Chris, who prefers a soft bed, would hate it if he had to have one.  The wall on the headboard side had about a dozen hookups for oxygen, lights, electricity, and other things I'm sure.  None of them were used for this sleep study, I merely had a polite little box on the bedside table, which I was informed was a basic CPAP machine.  That's the kind of machine that makes it so you still get air when you forget the breathe.  Since this sleep study was mainly testing for sleep apnea, it made sense. 

The tech was a stocky man with a sense of humor, so we chatted as he got things set up.  I got to try out the mask, because there was a chance I would be wearing it later that night.  According to the rules of the lab, if I stopped breathing 15 times in a single hour, the tech would need to put the mask on me and hope I went back to sleep.  It's kind of hard to describe what the mask did, besides fitting over my nose.  It seemed like it both pushed and pulled air through my nasal passages.  When I opened my mouth to say something, it pulled air through that, too.  It was disorienting, but not terrible.  The tech himself suffers from sleep apnea, so he proceeded to tell me how much of a difference these things can make.  I've heard it before, I just hadn't actually tried on a mask or seen one run. 

After that was all done, the tech got me mostly strapped in with all the gazillion wires and helped me take a picture of the resulting mess.  And it was a mess.  I had about half the wires it was possible to have, which was still at least 20 wires.  Most of them in my hair.  My shoulder length hair.  Scratching my head was nearly impossible.  Keeping my hair out of my face was also nearly impossible.  I didn't dare shift my hair too much, lest I dislodge one of the electrodes.  And I did manage to do that prior to going to sleep, despite the waxy, greasy, sticky adhesive.  The electrodes that weren't stuck to my head were taped down, which wasn't much fun afterwards since I am not a mutant hairless human. 

Once I was all settled with wires, the tech went off to the other room to get the older man settled the same way, then plugged us both into the system.  Then it was bedtime.  I was very conscious of all the wires, so it might've taken me a bit longer than usual to get to sleep.  I did sleep, at last.  Very lightly, I think.  I did my usually toss-and-turn thing, going between my side and my back.  I always wake up when I do that, but this time I was extra awake because I was worried about the wires.  I also tended to wake up every time I needed to scratch an itch, usually after I tried and my fingers hit wire/electrode instead of itchy skin.

I also woke repeatedly to the sounds of the intercom.  The room, you see, was equipped with an intercom as well as a video camera for data collection purposes.  This was so the tech could speak to us if needed.  The older man, as I mentioned, was half-deaf, meaning the intercom in his room needed to be up as loud as it would go.  Every time the tech needed to talk to him, I woke up.  I did not, however, wake up to the tech helping me put on a CPAP mask, which means I didn't stop breathing 15 times in any one hour.  

Eventually, at around 5:30 am according to my tablet, my brain decided we were done sleeping.  It does that sometimes, and I can't figure out why.  Hence the sleep study, also.  I rolled around in the bed for another half hour, before sitting up in frustration.  The tech jumped on the opportunity to call it quits on the study, and so I got to lose the wires by about 6:15am.  The wires, and also a lot of skin and some body hair.  I felt bad for the tech and myself, because I wasn't awake enough to stifle my pained noises until the last yank. 

After I was de-wired, the video camera was turned off and I was offered the chance to clean up before heading out.  Since I needed to drive an hour to attend a meeting in Lansing, I took the opportunity to freshen up.  It involved washing a lot of gunk out of my hair, mainly.  After I was cleaned up, there was more paperwork to do and I was presented with a voucher for breakfast.  I ended up with a breakfast sandwich and a big cup of hot chocolate.  So that was a nice way to end the experience.  I wouldn't consider the experience fun, but it was certainly interesting. 

Legwork and Life, week of 9/27/16

I finally changed the name.  Since going biweekly for visits to the LENS, it just hasn't seemed quite right to keep calling it the old name.  And I think it's probably fair to say my life involves a lot of legwork right now, for health, career, and wedding.

There is, for instance, the legwork involved in figuring out how to best take care of myself.  Last Thursday evening, I took myself to the hospital and proceeded with the sleep study.  The tech was a very nice man, at least, but I still didn't enjoy sleeping with approximately 20 wires hooked up to me, most of which were tangled in my hair.  I have longer-than-shoulder length hair, and the wires had to be applied to my scalp with some kind of waxy, sticky, greasy adhesive.  Needless to say, it did not help me feel pretty. 

I'll write about this more in detail later, but I slept very lightly and did not awake feeling rested and refreshed (again, this is normal for me, hence the study).  I then had to get myself packed up, cleaned, fed, and off to Lansing by 9am, because there was a meeting for the board of a new statewide self advocate group.  There's no website yet, but the name is now apparently decided: Self-Advocates of Michigan.  I guess the state of Michigan is in the process of changing how their disability policies are made, and since this board is made entirely of people with developmental disabilities, we hope to be part of those decisions, or even make them entirely ourselves.

So I drove the hour to Lansing without killing myself, and proceeded to be very very tired at the meeting.  But I somehow still managed to make myself useful, at least, contributing to the discussions and playing tech support for the microphone system.  Mostly I just kinda felt crabbity and disconnected from it all.  That shouldn't stop me from being decent to my fellow board members, though, so I made an effort to be friendly and chat with people.  The food was decent, at least.  For these things they tend to provide lunch, and I've always had to put in for vegetarian options.  The tastiness of those options varies, but that day it was beautifully served giant cheese ravioli in alfredo sauce.  I love alfredo sauce, I'm not going to complain.  I unfortunately didn't get to enjoy it all in one sitting, because I kept having to get up to talk to specific folks and help out, but I did finish it all, and that made me happy. 

After I got home, it was not time to crash, it was time to drop everything and run to my next event, which was a musical at Calvin (my college).  A friend of mine had written all the music for it, so Chris and I both went.  I mainly enjoyed the experience, although the topic (bullying) had its wince-worthy moments.  I was bullied when I was in elementary school, so the topic can be touchy and difficult.  In true Calvin style, there was a discussion afterwards, which we stayed for.  Mainly so we could congratulate our friend, who we hadn't realized was also playing the music live at the performance. So that was pretty cool. 

The next day (Saturday), we quickly cleaned house for company, because friends of ours were coming in for the local art festival.  We have a spare bedroom, so that's where they tend to stay.  What I didn't realize is that they were hiding supplies for a bachelorette party, and Chris was in on it.  I thought we were going out to have dinner, but he sneakily ditched me at the restaurant and went off to hang out with other friends.  It was a small party, just four and myself, but a fun one.  We had dinner at the restaurant and then went downtown for Pokemon GO hunting.  The organizer had made me a sash-thing with badges from the first Pokemon games, and everyone got a headband-thing patterned after their favorite Pokemon.  Mine had the wing-ears of Dragonair.  She also got some balloons and drew on them so they looked like some of the favorite original Pokemon.  It made the evening extra fun.  I'm not overfond of the local art festival, but I definitely enjoyed walking around with friends hunting Pokemon, so it turned out well. 

Sunday was church as usual, but then we also had D&D for the first time in months.  When it finally warmed up and got to be good camping weather, the people who played in that particular campaign scattered for various outdoor activities.  It's funny, actually, I think of all the people in that group, Chris and I may be the least outdoorsy.  But fall is coming, so they're winding down a bit.  We played for about 7 hours straight, which I was grumpy all the way through because I was tired from all the previous activities.  Usually my weekends involve 7 hour periods of rest and relaxation, but this one kept me busy the whole way through.  It still wasn't terrible, I just wasn't enjoying it much because I wanted to curl up and do nothing. 

Monday evening actually had another D&D campaign, run by the those same friends that had come to visit us.  They went home on Sunday, but we use a remote tabletop program to hang out virtually.  That kept us pretty busy, though Chris and I did also manage to make a quadruple batch of corn chowder with ham.  5 pounds of potatoes and about the same of ham, plus a ton of vegetables in the biggest pot we had available.  Which is actually pretty huge, and barely fits in our cupboard when we're not using it. 

It was a good, if highly exhausting, weekend.  Today I get to try to decompress some, so that's good too. 

A Hostile World

Last week I read a book called The Reason I Jump, by Naoki Higashida.  I reviewed it last week, but it got me thinking about how I perceive the world versus how he perceives it, and other people tend to perceive it.  Mr. Higashida loves nature.  It makes him happy to be outside amongst the sounds and stillness of nature.  And I simply don't get that, because while outside can be nice, it also tends to have mosquitos and other bugs, and I can't stand having things crawl on me.  And things will crawl on me, without trying to be rude or meaning any harm.  It's just what they do.

That comparison reminded me that a lot of things are like that: I suffer a lot of unintentional abuse, every day, with no particular recourse.  And often, without anyone noticing.  So in the interests of having people understand that a bit better, I'm going to try to enumerate and describe things that make the world kind of hostile to me and others on the spectrum.

The Very Light Itself

Perhaps one of the first things noticeable on waking up, sunlight.  Sunlight is warm and comforting, right?  Sometimes, yes.  And sometimes it stabs my eyes when I go outside, causing physical pain until I adjust to the brightness.  This can take minutes.  Ever had a big LED flashlight shined in your eyes on accident?  Or walked out of a dark room into full sunlight reflected off fresh snow?  It hurts.  For you, probably momentarily while your eyes adjust.  Imagine you had to deal with that every day.

I used LEDs as an example above for a reason, as well.  LEDs are painfully bright to me.  It was fine when they were covered with glass as in smart phones, or tiny and buried in TV screens.  But now we're using them in lightbulbs and flashlights and lanterns, and those hurt.  Never mind the artificiality of the light, such that it makes it hard to see with them anyway.  They're simply too direct, too bright, too focused... too something.  They hurt, like needles directly to the eyes.

I tend to scowl and scoff at people that use vanity LED headlights for this reason.  Standard headlights are mostly white and yellow light.  But that's not good enough for some people, so they opt for these horrible bright bluish-white lights that blind me whether they're using high beams or not.

For some people on the spectrum, it's even worse.  You see, LED light bulbs flicker.  The flicker isn't visible to most human eyes, but to some people, it can make a room very unpleasant.  Even one flickery light in a room can destroy my focus.  If all, or even most, of the lights in the room were like that, can you imagine trying to pay attention to anything?  If someone was trying to show you something, and the whole room kept flickering?  And meanwhile they can't imagine why you're squinting and getting a headache.

Sound And Fury

I've written on sound sensitivity before, but it bears repeating.  The world is a diversely noisy place.

Low rumbling noises, like the ones my car makes and the passing of trains or other cars, don't particularly bother me.  It helps that those are often quieter and further away, I suppose.  But high pitched noises, especially shrill ones, are very troublesome.  I can't filter them out.  They press in on my skull, demanding my attention, and sapping at my energy.  Children, sirens, the squeaks of unoiled doors or chairs, the backup noises of trucks and buses, all of these grate on my brain.  Or in the case of sudden noises, stab it. 

In my own apartment, which is one of the quietest places I frequent, there's the hum of the fans in my computer, the drone of the freezer and refrigerator, the creak of my chair, the click/tap/thud of each key I press on the keyboard, the occasional plunk or ding of an email arriving.  Then you can also get the construction equipment outside, which frequently backs up or uses those bucket arm things, and that makes a high pitched beeping noise, both predictably and not, since I'm never quite sure when they'll back up or stop backing up.  There's the school bus that comes through in the morning and the evening, and the shrieky children it picks up and disgorges.  And the blasted music from some of my less polite neighbors, either from their cars or in their apartments.

In a place like the mall, there will be many more sounds.  Chatter and bursts of laughter from shoppers, radios from mall security, the inevitable cheery/dreary mall music, sound effects from displays of goods, music blasting from specific stores, the shrieks of children and coffee machines...  All at once, clamoring inside my head.

All of this has to be tolerated.  It's irrelevant to whatever your current train of thought is, or your current conversation with a friend.  Focusing on it would simply get in the way.  Normal brains automatically filter out extraneous sounds, like the rumbling of your car or the music in the mall.  On a good day, my brain mostly follows suit.

On a bad day, I hear everything with equal priority and must consciously dismiss it and purposefully ignore it.  If I'm having a chat with a friend, my attention will keep getting grabbed away from their words by sudden sounds, or a snippet of conversation that I happen to catch.

Someone doing the dishes in the next room, or over the phone, is intensely painful to me.  Chris, my fiancee, is thankfully very sensitive to this sort of thing, but even he forgets sometimes.  Even if he hasn't forgotten, he can hardly stop doing dishes forever, or even save them until I'm not home.  It's simply not practical. 

"Exhausting" is one way to put it.  "Painful" is another.  It's not just the loudness of things.  It's the complexity, the number of noises around me.  I used to attend a gym that was a veritable cacophony of sound, from people to exercise machines to TVs.  It was so bad that I had to wear noise-canceling earphones, which I still bring with me everywhere just in case.  Otherwise it was impossible to focus on bludgeoning myself into exercising, even with the surprisingly motivating exercise app I had.

The Smell and Taste of Things

I am fortunate in that I mainly grew out of my childhood eccentricities when it comes to food.  But my parents could likely give you a volume or two on how difficult it was to get me to eat vegetables.  I think most parents have some trouble with it, but I remember a great deal of aggravation at mealtimes.  Eventually we had a list of things I didn't have to eat, which was quite literally a Post-It note on a cupboard, and I had to give Mom warning before I changed it.  I think it was 10 things, or something like that, but it may have been less as I aged.  But even with that, there was great exasperation because I couldn't be coerced into eating stuff.  I would simply sit there and scowl.  

I'm not entirely sure when or how I grew out of it, but I try to make a point of trying things at least once, preferably every few years or so just to make sure my taste buds haven't changed.  They usually haven't.  

When I read about kids that won't eat certain foods, or won't eat most foods, the words that often come up are texture and flavor.  The latter is obvious: if you puree kale, it's very acrid and bitter and overall horrifying (I may be biased against kale).  Some people just can't stand the taste of certain vegetables or other foods.  Something about it just rubs them the wrong way and so they don't like to eat those foods, or just won't.  

But texture is an entirely different ball game.  The mouth, and especially the tongue, have a lot of touch receptors.  Some things, bumpy or crunchy or squishy or gooey, are intolerable to people with sensitive mouths.  You know how at fairs, they'll sometimes have a mystery box.  You stick your hand in the box full of something gross, and if you guess what you've just put your hand into, they'll give you a prize?  Sometimes it's only a bowl of spaghetti or lumpy mashed potatoes, but sometimes it's live worms, wet cat food, or chicken intestines.  But either way, you've just stuck your hand into something that feels gross, and now people are expecting you to be okay with it, and even make guesses as to what it is.  

I don't know about anyone else, but I always found that box game disgusting and horrible, even if it was just spaghetti.  It's a texture you weren't expecting and weren't prepared for, and it's often greasy or sticky or something.  An unpleasant texture is something like that, like sticking your hand in that box, but every time you have to eat that food.  It might be the same texture every time, but it's always unpleasant.  

Smell, on the other hand, is something I continue to have problems with.  My family wasn't much into cologne or perfume or scented candles, so growing up, I only had occasional problems with strong smells.  As an adult, I'm finding it a trial to walk past the scented candle aisle in grocery stores, or past Bath and Body Works, or any other places that specializes in scented products.  I have to hold my breath, or flinch as my nose is assailed by a sledgehammer's impact of smells, all mingled together and indistinguishable.  

My sense of smell, is, as far as I can tell, excellent, in that I can pick out individual ingredients in a recipe from merely smelling it.  Olive oil has a certain smell, as does tomatoes of various preparations.  Soy sauce, too, and chicken, steak, and bison.  So throwing a dozen or two floral, fruity, and spicy scents at it, all at once, is confusing and stunning.  The stronger the scents are, the worse it is. Needless to say, I avoid shops like Bath and Body Works like the plague, unless I have excellent reason to do otherwise.

Even a Gentle Touch

Temple Grandin's childhood inability to tolerate hugs is, I think, fairly well known at this point.  There was simply too much sensation, such that rather than enjoying the hug as the gesture of affection and familiarity it was, she would stiffen up and pull away.  It took some ingenuity on her part in college, and a lot of patience, before she was able to tolerate hugs.  She quite literally had to invent a "squeeze machine," basically a machine that put pressure on her as tightly or as softly as she wished, and use it many many times to accustom herself to the sensation.  In the end, she was able to give and receive hugs. 

This is a familiar story when reading parents' accounts of raising their autistic children, with the kids freezing up or crying, or even refusing to touch or be touched.  The sensation is just too strong and overwhelming.   Something like the difference between someone showing you a picture, and shoving it right at your eyeball. 

Similarly, some people on the spectrum feel touch as pain.  For years, I'd assumed I wasn't one of them.  Then I happened to notice an instance of minor pain when my fiancee was stroking my arm.  It wasn't a sharp, attention-grabbing pain.  It wasn't an ache.  It was simply the sensation of being touched, but with a dull overloading factor.  Which I hadn't realized until just then, but that did translate to pain.  It wasn't a loud kind of pain.  It simply, quietly, hurt.  I got the sense I'd kind of been ignoring it for years.  

So for me, apparently, light touches can hurt.  To my great and abiding irritation, that isn't all.  I am immensely ticklish, basically all over my body.  I have no memories of enjoying being tickled, so every successive incident just annoys me further.  It doesn't help that it often happens at doctor's appointments, when they need you to hold still so they can examine you, or on accident while trying to relax on the couch with my fiancee.

Other Senses Exist

Contrary to most textbooks, there are 10+ senses that the human body has access to.   I'm not as familiar with them since I didn't know they existed until recently, so I'll cover them only in brief.  

Balance and Kinethetic Senses: Your senses of body movement, where your limbs are in space, direction, acceleration, etc.  All that is bundled together, and if it's out of whack, you get all sorts of fun things.  The book I read, The Reason I Jump, talks about not being able to feel yourself in space.  The author jumps, at least in part, because it lets him feel himself in space.  Other people spin, rock, run in circles with their heads tilted at an angle so they feel balanced, or do other things.  If this sense is off, it can really disorient you. Imagine always feeling off-balance when you're sitting in a chair.  Could make it hard to pay attention in school. 

And of course one of the classical Asperger's symptoms is a mild clumsiness and odd walking gait.  I have both of those, though I have improved markedly as I aged.  I continue to trip over flat surfaces, but rarely, if ever, fall down after tripping.  Perhaps partially due to the roller skating lessons I had in my teens.  

Temperature and Pain: These don't technically go together in a scientific sense, but they're both extra-touch sensors to me, and no scientist has complained to me yet.  I've heard from parents whose kids don't seem to care if they touch a hot stove.  I personally get all kinds of miserable when I get cold, and despite my layer of protective blubber, I get cold quickly.  

Painwise, everyone has a pain tolerance (how much pain they can handle) and a pain threshold (how strong pain has to be before you notice it).  Even in neurotypical people, this varies.  In autistic people, this can vary extremely widely, from being seemingly impervious and oblivious to pain, to shrieking about even little pinprick.  My personal experience varies.  Some days I'm more oblivious to pain than others.  In general, my pain threshold seems relatively low, but my tolerance is fairly high, given enough time.  Sudden blinding pain hurts a lot more than a headache that starts out mild but works its way up to making me dizzy and sick to my stomach.  (Why yes, I did find that out from personal experience...)

Internal Senses: Things like how full your bladder is, how much air you have in your lungs, and how hungry you are.  Since messing up my gut bacteria with a ton of pop a half year or so ago, I've had issues telling how hungry I am.  I'll have bouts of a minute of being murderously hungry, and then 15 minutes with my stomach telling me it has no problems whatsoever.

Like any other sense listed above, this too can be off-kilter.  Some parents of children with autism report longer toilet-training, or delayed toilet training.  Some people with autism forget to eat unless reminded, then they notice they're hungry. 

So What?

Hopefully this has given you a bit more of an understanding of the challenges of being out in the world.  One or two of these things could be classified an annoyance, maybe, but piling them all on simultaneously makes this exponentially more difficult.  You'll note, too, that not a single bit of this touches on what I consider the core of an autism diagnosis: the lack of social intuition.  These are simply sense-based difficulties that add onto that lack, making it even more difficult to interact in a normal fashion with others.  

I have a friend who, many years ago, got annoyed like most everyone else does when a baby or small child was crying in a store.  She assumed the kids were simply being brats. Then she had kids herself, and some of them were sensitive to these things I've described.  After some reflection, she'd often look for bright lights in the kids' faces, or unpleasant sounds, or strong smells, before assuming the child was just being bratty.  And fairly often, she'd find something that explained the child's distress.  

I wish more people would be that thoughtful about their interactions with others.  Most people have no way of knowing these difficulties I've described, and so I'm "reclusive" or "hard to get to know" or "unsocial."  But most days it's a trial to go out for any reason.  If even a tenth of the people I normally deal with understood that, my life would be a lot less anxiety-inducing. 

LENS and Life, week of 9/20/16

No sites for LENS this week, following the biweekly schedule we're adhering to. My wedding, however, creeps every closer.  The remaining supplies for favors just finished arriving yesterday, so I've been working diligently in some of my spare time to finish them.  I need to hurry up with that and then get working more diligently on the flowers for the wedding.  I don't want to make them too soon, since we'll have to transport them anyway, but they're also going to take lots of time and I don't have designs set in stone, so I do have to start soon. 


The sleep study is this week.  I'm extra tired this morning so I'm not too crabby about it, but it's going to be an endeavor.  The sleep study involves wearing a headcap of electrodes, along with various other wires to track heartrate and breathing.  You then get to try to sleep with all that in a room that's more or less a clean but very uncomfortable motel room.  This would all be annoying, but fine, if it weren't for the fact that I have to drive to Lansing the very next morning, bright and early.  I don't usually partake of heavily caffeinated beverages, but I'll take the awfulness of caffeine crashes over falling asleep at the wheel and killing myself and maybe other people too. 


The paperwork says to have someone drive you to and from the lab.  I don't think whoever wrote it would be very happy with me.  The meeting in Lansing is fairly important, though, so unless I absolutely cannot drive, I need to be there. 

Related to sleep, I was recently introduced to a concept I found interesting: mindscapes.  My oldest friend told me about one of his personal constructions.  He envisions a hammock-sleeping bag, strung up between two big branches in a vast rainforest during a torrential downpour.  The hammock-sleeping bag is waterproof and has a top, so he is quite dry, and everything he needs is in a knapsack hung on a nearby branch.  When life is being overwhelming, or sometimes just when he wants to sleep, he envisions that place and relaxes. 

When I related this idea to Chris, my fiancee, he told me he has his own mindscape, which I didn't know until then.  So now I'm trying to construct one of my own.  I'm starting with the feeling of having my back to the corner of two walls.  I've always kind of found that comforting, I guess, since no one can sneak up on you from two directions that way, short of walking through walls.  It significantly lowers the field of vision you have to pay attention to. 

To that I'm poking around with the idea of it being well-lit and the walls being painted white.  I'm not really sure how well that'll aid me in sleeping, since imagining light doesn't really seem helpful to going to sleep.  But perhaps this particular mindscape won't work for that, and will be more suited to calming down while awake. 

Since chatting with my LENS-doctor regarding stress levels, I've been thinking about ways to handle stress better.  I've cut out a lot of sources of stress, or at least reduced them, but there's only so much to be done when daily life itself is often a large source of stress.  Never mind wedding planning and health changes.  The solution, then, is to become more capable of handling stress, and gracefully.  At present I can tolerate a large amount of stress, given all the practice I've had, but I definitely can't do it gracefully. 

Book Review: The Reason I Jump

I'm giving myself a break after reading Mother Warriors, so I grabbed a book whose title I recognized from a few years back: The Reason I Jump, by Naoki Higashida (translated to English, because my Japanese is definitely not that good).  It is a short book, but a good one.

One of the reviewers on the back claims it's a Rosetta Stone for autism, which made me wonder if reading it was going to introduce me to a kindred soul or just another different case of autism-made-alien. After finishing the book, I'm more inclined to claim the latter than the former, though the author is certainly thoughtful and imaginative.

The book itself is a series of questions about autism and specific behaviors autism can cause, and answers from the author, a nonverbal autistic 13 year old who has painstakingly learned to communicate by typing.  His answers are everything from smile inducing to heartbreaking, and while they generally don't pertain to my situation, they are well worth reading.  Particularly if you're a parent with a "runner" child, ie: a child that tends to just bolt off at any moment, wandering so far they get lost and have to be found by an organized search effort.  From the sound of it, the author is a runner as well, and it's not because he's feeling contrary or wants to be difficult. 

Interspersed with those Q&As are little stories, things the author found meaningful or wrote himself.  I'm afraid the meanings were mostly lost on me, but perhaps you might do better.  These are not simple stories, with a simple lesson and meaning, but complex and emotional stories, referencing everything from Japanese folklore to Aesop's fables.

One thing the author and I do agree on: familiar things are like old friends.  For him, commercials he recognizes, nature, and questions he already knows the answers to.  For me, music.  My enjoyment is more societally acceptable than his, which is probably why he wrote about it in this book.  He lights up over seeing commercials he knows, with a big grin and singular focus.  I mainly just enjoy the music more deeply if I'm familiar with it, which doesn't necessarily have a lot of outward markers.

We also have something in common, which is that he seems to be pretty well aware that he upsets people by being himself, and makes efforts to minimize that upsetness.  That is something I do as well, and by the number of references he makes to it, it's a major concern of his.  That may be in part due to his culture: the Japanese as a rule are much more concerned with societal harmony and wellbeing than the more individualistic Americans. 

I would tend to say the author, Naoki Higashida, was a happier person at the writing of this book than I am now.  I don't have nearly so many things that make me happy as he does.  I hope he's kept some of those things.  The book was written in 2007, which is now almost ten years ago.  A quick Google search tells me he hasn't stopped writing, and his last publication was two years ago.  Hopefully that means he's doing well.

Read this book if: you're anyone.  Seriously.  Just because his life doesn't cross mine in many points does not make it any less valid, and in fact makes it much much more valid to parents with kids who have problems getting their bodies to respond, or do what they want.  Even if you have no one in your life like that, read this book to understand another person's humanity.  The author is a very different person than most you'll ever meet.  Don't miss the opportunity to see things the way he sees them. 

LENS and Life, week of 9/13/16

As of today, it is 2 months until I get married.  Eek.  The dress is in progress, I finally have materials for finishing the wedding favors, but I need to get moving on the bouquets.  Specifically, I need to hurry up and get tons of origami paper.  And at least two foam balls to stick flowers into for the bridesmaid bouquets.  Which have a name, and you'd think I'd remember what it is since I've been a bridesmaid like three times.  Oh well. 

LENS this week, but tomorrow.  I was going to complain to the doctor about something, but it's slipping my mind as to what it was.  

I seem to be stabilizing on the supplements, finally.  From talking to my doctor, it sounds like the B vitamins aren't the direct cause, but something that they influence certainly is.  I'm going in to do the sleep study in a couple weeks.  Hopefully that'll clue me in to why I don't feel rested in the mornings.

I would feel very frustrated by all the dead ends I've run into for figuring out how to help my general wellness and energy level, but from the sound of it, this is pretty much par for the course when it comes to autism.  The books I've read talk about visit after visit to the doctor, changing doctors to try to find ones more sympathetic and willing to listen, trying alternative medicine, and trying pretty much anything under the sun so long as it doesn't hurt your child.  While I have limited resources to throw at such things, I can certainly appreciate the tales of tenacity.  Maybe this sleep study will be a vital clue.  Or maybe it's back to banging my head on a wall.  We'll see. 

There is another angle I might ask after when I next visit the doctor.  I seem to be having trouble regulating my internal temperature.  Particularly at night, so perhaps it'll just show up on the sleep study data.  I used to help regulate it by sticking a leg out from under the covers, but now that makes the foot freezing cold and very uncomfortable, to the point of waking me up.  I have fuzzy socks, so sometimes I'll wear those, but I can simultaneously be too hot and too cold, and the former very quickly shifts to the latter.

A minor problem, generally, but the thing with my particular autism is that it's already difficult enough to get through life just with autism and the associated sensory sensitivities, depression, anxiety, etc.  I'm working on compensating for those, but in the meantime, any support or removal of other things that drain my energy or make it harder to function is vastly helpful.  There may be little to do about the autism, and little to do about the sensory issues, but the more energy I can throw at dealing with the anxiety and depression, the better. 

Book Review: Mother Warriors

This is the book I've been pulling faces at each time I go to the library.  So meet Mother Warriors, by Jenny McCarthy.  You may recognize that name.  She is one of the foremost antivaccination proponents, and that is precisely why I've avoided this book in two separate libraries.  Until now, obviously. 

Why now?  Well, my doctor introduced me to VAERS, otherwise known as the government's vaccine injury statistics database.  And to the fact that vaccine injuries are, in fact, a thing.  Vaccines are by nature a bunch of chemicals and substances not natural to our bodies; the whole point of them is to prod our systems into being immune to things they're not normally immune to.  So sometimes (rarely, thankfully) those things clash in ways they're not supposed to.  Bad things ensue, such as new allergies, seizures, massive changes in gut bacteria, etc. 

So while being aware of this, I was still pulling faces at the book, because at this point, I am so tired of hearing "vaccines cause autism, avoid vaccines at all costs," that my gut reaction is to strangle the person speaking.  I get that autism is not a particularly desirable thing.  Really, I do.  I live with autism, it's not a party.  But the diseases they're vaccinating against are quite literally deadly.  Your saying, "I'm not vaccinating my kid because it might possibly make them autistic," is basically saying to me, "I'd rather my kid be dead and everyone around them be at risk of all these deadly diseases than them be autistic."  You're basically telling me, to my face, that my existence is worse than death.  Depending on how bad a mood I'm in, my response may vary from studied silence to a careful explanation to an angry string of imprecations. 

Usually not the lattermost, thankfully. 

So in the name of at least trying to understand the hysteria of anti-vaxxers, I picked this book up from my library, and then promptly put off reading it until the day before this entry was due to be posted.  This is unfortunately in keeping with my habits of college, which were to put off studying for finals by doing big projects, and put off projects by doing homework.  Eventually I ran out of homework and projects, but that was how much I disliked studying.  And finals. 

I had a great deal of difficulty starting this book, suffice it to say.  The first chapter didn't help.  Jenny McCarthy is fairly well known in autism circles, and has been on a number of TV shows.  She invites you inside her skull for a few of those televised interviews, and the inside of her skull is a very dramatic, emotional place.  I didn't enjoy my time there.  I think maybe it was supposed to be inspirational or humanizing or something, but it just seemed overdone to me. 

Hopefully that doesn't make me a heartless wretch.  Being famous and on television, particularly after having such a difficult life and having no one believe you at first, would make a person a mite more emotional and stressed than your average person on the street.  So perhaps I shouldn't point too many fingers.  I did get tired of her restating her general position, though, and had to remind myself that she, like many people, considers "autism" everything that is wrong with their children as opposed to autism specifically being a brain issue and other problems like leaky gut and food allergies being comorbid. 

The rest of the book consists of apparently real stories of mother warriors, ie: the kind of mother that fiercely hopes and fights for her child.  This includes a single father warrior, despite the title of the book, which I thought was a good addition.   These stories are interspersed with how she learned of these people, and her comments and views on their stories.  With a single exception, all the stories are of little kids.  The sole exception is what I've heard called an adult child.  The person has grown up, but is unable to leave home and have an independent life.  He was able to get a job thanks to his parents' connections, and does have friends and a social life, but it doesn't sound like living alone and other markers of independence are really on the table. 

The book concludes with a series of resources to help with teaching and raising your child, including links to Autism Speaks, which surprisingly Ms. McCarthy is not a big fan of.  But also to her pet organization and products.  I was pleasantly surprised to see these things relegated to the end of the book, and not interspersed throughout. 

Read this book if:  I can't in good conscience recommend reading this book without having a lot of background in literally every other definition of autism.  Jenny McCarthy, for all I can tell, does not consider me and people like me autistic, and boy howdy wouldn't that be nice if it was true.  

That said...If your kid is very heavily affected by autism, food allergies, seizures, etc, I would say this book and the people attached to it probably have some good ideas you can try.  If you have a kid like that and are fast tiring of hearing doctors tell you there's nothing to be done, read this book for an infusion of hope, because there's definitely several things to try, which are mentioned: gluten-free and casein-free diet, hyperbaric chamber therapy, and others.  I can't vouch for the scientific accuracy of the opinions expressed therein, since I've never tried or researched many of them. 

But please oh please don't forget that I exist, am autistic, and have both agency and a marked dislike for being sidelined in a myopic rush to help "the children."  There is much much more to this story than Jenny McCarthy spells out. 

LENS and Life, week of 9/6/16

Two sites last week.  None 'til next week.  Perhaps this means I should change the title to Legwork and Life now.  But I dunno if we're done with changing things up, because I'm not waking up rested still. 

I've been kind of sick this last week.  But it's not a nice recognizable sickness I'm familiar with, it's exhaustion and fuzzy-headedness and a complete lack of fever.  It's not being able to sleep in, and waking up after 3-5 hours of sleep. 

Though I might have just figured out why it's doing that.  I mentioned awhile ago that apparently the pre-industrial sleep schedule included an hour of being awake every night, preceded by and succeeded by 3-5 hours of sleep.  This was apparently quite normal, except we began messing up our systems with electric lights, thus divorcing our time from the sun and its built in breaks.  Thus 8 hours of uninterrupted rest began to take precedence over the previous rhythm. 

I woke up at about 5am last night, having hallucinated sleep studies and stuff in the computer game Chris and I were playing.  Sadly quite awake, and with a song in my head.  I was still tired, though, and it was way too early in the morning, so I opted to bore my brain back to sleep by not doing anything.  Eventually it worked, and I managed to sleep another few hours. 

I feel...  rested is not the word.  But better than I did earlier. I just hope today doesn't also middle and end in a fuzzy head and general dull-wittedness.  It's just unpleasant, and not having an explanation or anything workable to do about it is really unpleasant.

Related to sleep, I got a doctor to recommend me a sleep study.  Those cost about $2,000, but it sounds like Medicaid is going to pick up some or all of it.  I'm hoping all, because this year has been hideously expensive, and I made inquiries to try and find out how much I'd be responsible for.  But the end result is: "we don't know 'til we bill it."  Which I'd call bullshit on, but unfortunately that is /exactly/ how insurance companies work at present.  I know that from personal experience when I worked at Hope Network. 

It is many kinds of stupid, but particularly stupid when you're playing with Medicaid, which is only given to near-destitute people.  Just because they're poor doesn't mean they can't need expensive tests, but unlike middle class and upper class people, getting slapped with a $2,000 bill because their doctor deemed the test necessary and Medicaid deemed it unnecessary is life ruining.  Where many other folks have a rainy day fund, poor people generally can't.  The requirements of Medicaid are stingy, not to mention food stamps and other forms of assistance.  Even if they can earn money for the rainy day fund, they can't keep it or they'll lose their benefits. 

Anyway, I'd normally call off the sleep study for a few months until Chris and I are married, but given how much trouble I've had sleeping lately, I think I'm probably just going to bite the proverbial bullet and hope Medicaid covers most of it.  If I'm not breathing properly while I'm sleeping, or overheating, or underheating, or something, knowing sooner rather than later would be good.  And unlike most people on Medicaid, I have a few resources to draw on in dire straits. 

Book Review: Succeeding with Autism

Onward through my library's selection of autism books!  I'm pleasantly surprised by the variety I've come across in books dealing with autism so far, though admittedly, I suppose, I could wish for a few that are written for people on the spectrum, not their parents.  I'll be lucky to find one, though, usually no one pays us much mind.  With that in mind, meet Succeeding With Autism: Hear My Voice, by Judith H. Cohen. 

This book can best be explained as a case study.  For those not familiar with the term, this book basically follows an autistic man and his family, as he grows from a small, clearly special ed child, to a much more well adjusted math teacher.  It starts when he goes to college, then jumps back to his life as a little kid, and finally explains how he became a teacher and the hurdles he had to jump. This sounds confusing, storywise, but it's actually done fairly well.  And possibly wisely; I'm not sure if I'd have the strength of focus to read the whole story chronologically.  I've seen similar literary techniques before, in any case. 

The tone of the book varies between carefully neutral and supportively positive to my senses, which is well, because some of the contents are upsetting.  The man in question, pseudonym Michael, did not have a nice, quiet childhood.  For privacy's sake, all the names in the book are pseudonyms, and that's just as well, because the book goes into great detail about the family's successes and failures.  I was honestly kind of uncomfortable with the honesty, perhaps because some of it seemed a bit too close to home.  Which isn't to say the author should have done differently, merely that I didn't enjoy this book as much as I might have otherwise. 

So far, this book is unique in that it's a case study.  I'm hoping this won't be the only such book I read, eventually, but as starts go, this one is excellent.  The author was not simply content to interview the autistic man and his family, but instead sought out teachers, colleagues, and friends, in what I can only imagine was a dizzying amount of work to put together. 

It's important, I think, to note that this book does not begin her story of Michael's life on a "everything is terrible forever" note and end it on a "all is perfect forever" note.  Even at the end of the book, where Michael has a steady job and people that appreciate him for who he is, all is not entirely well with his family.  Old injuries linger, and there's still lots of room for growth as a person for him. 

I spent an unhealthy amount of time drawing parallels between myself and Michael while reading this book, and being anxious and upset.  While I like to think I wasn't as much trouble as a child, I imagine I would need to ask my parents to be sure.  In any case, it did not help me enjoy the reading. 

Read this book if: You'd like to read an unconventional success story, and aren't bothered by excessive honesty.  Heck, read this book if you're a parent of a little kid that doesn't speak yet, and need some hope.  Or if you're just interested in seeing one autistic life play out.  It's a good read for all those things.