Tuesday, December 29, 2015

LENS and Life, week of 12/22

Holy moly.  Well, I haven't gotten behind on entries for months, until holidays hit.  So I guess that's something.

No LENS this week, because my doctor doesn't have 800 mile long electrodes.  Hello from CT!  The 13+ hour drive was annoying, but Chris and I switched off driving every 2-4 hours.  As someone used to making the drive alone, or in 6 hour stints, or whatever, this was a really nice change.  Yay, sanity preservation!  There was no snow or difficulties (sans other drivers...) to speak of, other than a bit of rain.  I like my Christmases white, but I think climate change is going to have its way this year.  60+ degrees (F) in December is... unprecedented, at least in my lifespan.  It'd usually be at least 30 degrees cooler, probably 40 or 50.  Brrr...

This week will involve last minute frenzied gift-shopping and making.  I have uncles and aunts, and so does Chris.  They're all but impossible to shop for.  So having gotten some last minute ideas, we're taking today and tomorrow to acquire them.  Well, most of today and tomorrow.

To my displeasure, we're also making several social calls in this small amount of free time.  Christmas Eve and Christmas Day are going to be jam packed with his family and mine, and I was hoping to save some energy.  But as long as we're in the Northeast, Chris wants to see this friend and that friend, and visit this place and that place.  I have no real love for the area in general (sorry, any fond residents), so I'm decided unenthusiastic about the whole thing.  But we're only here once a year, so I'm not going to rain on his parade too much.

Let's see... highlights of the visit so far.  We went and saw a mutual friend of ours already.  It was mainly a low key visit, hanging out and watching one of the older Star Wars movies.  This was in preparation for Sunday, when we saw the new Star Wars movie, The Force Awakens.  I loved a lot of it.  It wasn't a flawless movie, but I like the new characters and hope they live up to their set ups.  No spoilers here, but do go see it if you haven't.  It's a fun watch.

We also attended a handbell concert that same day.  Chris has an older brother, David, whose wife rings, as they call it, with a handbell choir.  (I complained about their wedding almost a year ago)  Apparently David himself has actually started playing with the choir as well, but only recently.  The concert was glorious.  I don't play handbells myself, but my mother did for a number of years, and I have memories of her playing and arranging music for handbells.  And this choir was skilled!  They broke out a number of techniques I recognized (some of which are very difficult, especially with the large handbells the size of your head).  They also had a set of hand chimes.  It was a fun watch, and I recorded a couple songs on my tablet so I could show my mother later and recommend she look into the choir. 

On a less happy note, I am not sleeping well.  I wasn't sleeping well before we traveled, and the change of beds and the fact that I keep forgetting to take the insomnitol isn't helping.  Hopefully I can kick the trend soon.  I need as much sleep as I can get for the huge Christmas party my aunt is holding.  : / 

Must dash.  See you Friday!

Friday, December 25, 2015

Merry Christmas

Merry Christmas.  No post today because this week had been utterly insane.  Will try to get back on schedule for this Tuesday.

Tuesday, December 22, 2015

LENS and Life, week of 12/15

Eek, it's almost the end of the year.  I'm driving to CT in just a couple days!  Commence with the flailing and the packing of all the stuff!

1 site today.  I checked with the doctor: I'm at 9/21 site on my third brain map.  Between only doing one site per visit and the visits being every other week, this last map is going to take a good long while.  I seem to be doing okay, but I'm being plagued by my perennial problem: I can't honestly tell whether anything has really changed.  A certain amount of obliviousness is human nature for this kind of thing, and while I know that for a fact, it's still really, really annoying.  I think I'm doing better than I was while unemployed or at college?  Probably.  That might be like comparing potatoes to avocados, though.  My brain has rewired itself several times since I've been in college, for various jobs and a stint with unemployment.

Career Progress?
So, recently John Elder Robison, one of the two big names in autism advocacy, put out a call for reviewers for federal autism research.  Thanks to my connection with Puzzle Partners and Autism Support of Kent County (ASK) in general, I was able to get a letter of nomination to send with my application.  The position itself is basically consulting work, helping shape and direct autism research, meeting scientists, and learning about the current research.  It won't pay my bills, but it would be a great way to meet people and keep educated on the latest research for autism.  I'm hopeful that between the fact that I got my application in reasonably fast and the fact that I hold a bachelor's degree in psychology, my application will be considered seriously.

It sounds like what I've done is the first step in the process, though.  Actual paperwork will ensue.  Alas.  Not really surprising, though, given it's the federal government.  The government does things, but "fast" is not an adjective that I feel confident in applying to any bureaucracy. 

Titles/Improving My Writing
I noticed I have the tendency to write these entries but not always make them really simple to read.  A lot of easily digestible things I read are subdivided.  Especially if they're long, but even if they're not.  So I may play around with dividers between subjects in these entries.  I doubt it'll harm the readability, and it might even help.  

So I may take writing or psychology classes in the near future, but I seem to have missed the cutoff date for class registration for the colleges in the area.  By about a week, of all things.  Oof.  I may still be able to slide into a couple classes that didn't fill up, perhaps.  My brother pointed out, last time I saw him, that my writing could probably improve.  Which is quite true.  I'm trying to improve it by actually doing the writing, but I'm pretty sure taking a class or two couldn't hurt either.  Well, except for my pride. 

Friday, December 18, 2015

Article: Adult, Autistic, and Ignored


This is a discussion of a soon-to-be more prevalent problem: autistic people and other people with developmental disabilities growing up, but not being able to live independently.  While I wish everyone on the spectrum was like me in that I did finally learn to do everything for myself, that is not always the case.

Being an adult and doing things like taxes, health insurance, full time job (or multiple part time jobs), keeping track of car repairs, and the like... is incredibly complicated and difficult.  Never mind all the daily stuff I have to do, like keep to a special diet, exercise regularly, keep food in the fridge, wash dishes, etc.  This stuff all builds up, and it's overwhelming.  Even to me.  Some people can't do that.  It doesn't make them less of people, it just means they need help.  Everybody needs help sometimes.

"State funding, it seems, remains keyed to the idea that the same maturational curve applies both to 'neurotypicals' and those with disabilities, and apparently relies on a magical-thinking belief that these young adults will somehow smoothly make the transition into adulthood without special guidance."

Can I get an amen?  Seriously, this is a thing, and it's blatantly false if you look at the data or ask some parents.  We don't usually grow and mature cognitively and emotionally at the same rate our peers do.  I'm 27 now, and at present I consider myself roughly 16 years old, emotionally.  Not quite as full of uncontrolled bursts of temper and emotion as a 13-14 year old, but definitely not as settled, emotionally, as a 20 year old should be.  I was probably 12-13 emotionally when I was in college, with a big unhealthy dose of "emotions are stupid, keep them away."

The article concludes with an appreciation that at least the author's brother is well taken care of, thanks to his mother's tireless efforts.  But that isn't the case for a lot of folks, and I really do worry that we won't have enough information to ease the transition between childhood and adulthood for the next generation of autistic people: the kids of today. 

Tuesday, December 15, 2015

LENS and Life, week of 12/8


(cough)  Zero sites today.  Whether or not the doctor is meaning to do it, I am definitely doing week on, week off for LENS.  My frustration levels (overall) are down, I think.  Stress levels too, although the end of the year likes to be stressful and frustrating.  I'm still kind of wondering what my brain looks like these days, and when the third map will be complete.  Soon, hopefully.

In sleep matters, the expensive supplement (multivitamin style) I've been taking seems to be having less of an effect in recent times.  I had this problem with melatonin as well; it worked well for a few weeks and then the effectiveness kinda tapered off and stopped.  This is one of the reasons I may pester my primary care person to get me into a sleep study... because supplements don't seem to be fixing whatever the problem is.  I'm noticing now that if I fall back asleep after waking up repeatedly, I seem to go right into REM (dream state) rather than doing the stages of sleep like you're supposed to.  The only example I know of doing that is when you're sleep deprived... your brain drops you right into REM, skipping everything else, because that's the type of sleep it needs most.  Hours-wise, I should be getting enough sleep, but if I'm not getting enough REM, that's bad news.  I'm not sure I feel up to tackling the issue this month, though.  Something for the new year, I guess..?  If my health insurance gets renewed properly. 

The ALLCAPS sentences that start this entry are my way of trying to laugh off the Christmas-frenzy and stress.  (Seriously, have you seen the parking lots?  The shopping malls?  Even the grocery stores?)  Even with just needing to shop for my side of the family and a few friends, my brain-gears grind and complain.  Almost everything is done at this point, though.  I pointedly gathered stuff together and did tons of shopping this morning.  Everything should make it well before Christmas.

I still have some extended family on both Chris' side and my side of the family to deal with, but neither of us really know what to get them, so I've asked more knowledgeable minds.  If I'm really lucky, said minds will get back to me within a day or two, and then the only thing I'll have to worry about is friends unexpected friend-gifting.  In other words, the gifts you weren't expecting and have nothing prepared to give in return.  (Yes, that's not how presents are supposed to work; no, that doesn't matter to my brain.)

Ah, crud, I'm not done yet.  I have cards to mail.  I bought handmade cards from a crafter-friend of mine and I need to mail them to people.  Maybe if I do that today, I can be done?  Except it's kinda early to send Christmas cards...  (It's also kinda early to send Christmas presents, but most of them are being shipped to me so I can send them or give them at the appropriate time.)  Blehhh, hanging (waiting) tasks.  Why do you eat my sanity, hanging tasks? 

A lesson I can take from this year's holiday gifting, though: shared experiences are great presents.  They're great because you buy them well ahead of time, they make for great memories, and if you can get a whole group of people in one go, that's an entire group of people you no longer need to care about getting presents for.  Chris and I got one of our shared friend-groups tickets to a symphonic video game music concert.  This was months ago.  The event is now entirely sold out, which does not even slightly surprise me.  However, it counts as 5 presents, and should be a pretty awesome outing.  We'll probably all pile into my minivan and drive up, hang out at the concert, enjoy the music, and perhaps even hang out after the concert at someone's apartment.  Should be a decent present, and a good time.  If I could figure out ways to duplicate this feat, gifting would be much much less frustrating. 

Friday, December 11, 2015

3 Observations From a Non-judgemental Gym

1.  TV Diversity is Highly Lacking.  Across 8 televisions, playing a variety of TV shows and movies, the most visible diversity I've seen in one scan across the screens was three persons of color.  Three.  (Not including sports games, because diversity needs to be in all kinds of TV and it hardly seems fair when you can get an entire team on the screen, 8+ people.)  Gee, modern TV, you know the diversity of the US is changing, right?  Try to keep up.  Prominent examples of shows toting nonwhite characters: the news (thanks President Obama), Castle (but it's not one of the main-main characters, it's one of the main-side characters), and some talk show I don't recognize.  Occasionally Planet Fitness' channel itself features minority-type people as well, so at least there's that.

2.  Even in a Non-judgemental Gym, People Still Love to Judge.  So today I watched a thin-ish girl dressed in bright pink walk past a dozen open treadmills to slide between myself and another thicker lady.  She then proceeded to obviously compare herself to us, matching my speed and pace.  Thankfully for my pride and sense of fairness in the world, she got a stitch in her side and burned out in 15 minutes.  Meanwhile I did interval  (run/speedwalk) training for another 10 minutes, because I am no one's bottom of the barrel comparison, thank you.  Like I don't have enough self-esteem problems without someone obviously making that judgement.

3.  Weird Decor Is Always Weird.  This gym's decor is purple and yellow.  Seriously, I cannot make this stuff up.
Yes, those are specifically branded cardio machines.
This isn't my particular gym, but it's close enough.  I keep my nose in a book, or use the Internet on my tablet, because looking anywhere else is an eyesore. There is no respite from the colors.  They're in the lockers, the stretching areas, the consultation room...  It's a shame I need my eyes to see my feet on the treadmill, or I might wear a blindfold while I exercise. 

Tuesday, December 8, 2015

LENS and Life, week of 12/1

1 site today.  

Oh dear, it's December.  When did that happen?  I still feel like I'm recovering from the gift-stress of October, and now it's time for gift-stress of December.  Thankfully, the vast majority of my gift-giving this year is actually taken care of, due to Chris' foresight and some cool events coming through.  I still have to find presents for my family, though.  Well, most of my family.  I have no idea, still, what I'm supposed to get my nephew.  When he gets a bit older and starts having interests, I can buy things that apply to that, but right now he's still too young and busy learning about the world to pick a specific part of it.  At least, last I checked.

What else... well, I had a "bleagh, sugar" day yesterday.  There's a big bag of M&Ms in the apartment from before I started the sugar limitation thing.  It's several handfuls more empty now, alas for my waistline.  I'm going to do better, but I think everyone has days where they're just done with everything.

I have a few more sugary things to clear out of the apartment; the trail mix I made right before I was told it's super-sugary and bad for me, the truffles my dear friend bought me for my birthday, some Ben & Jerry's ice cream I haven't touched because I'm afraid to see how much sugar is in it, and some fruit juice. 

I'm keeping up with the smoothie each morning thing.  I've basically settled on the first recipe, which is sugar-heavy (most unfortunate, but at least it's only fructose?).  The main culprit is the banana, which is very sugary but makes the smoothie nice and thick.  However, I've decided that nothing, not even berries and bananas, can make pureed kale taste good.

My mother and a couple other people recommend making kale chips out of it, rather than putting it in a smoothie.  I'll take that into consideration next time I feel like being experimental.  In the meantime, I'm just trying to use up the kale I bought for the smoothies.  A little bit goes into every morning smoothie I make now.  Not enough to completely ruin the flavor, just enough to put a gross edge on the aftertaste.  I'll either use the stuff up, or it'll go bad.  Either way, I'll be rid of it soon.

At present I'm keeping busy with finishing the Wheel of Time series (now on book 12), playing with a couple new games on my handheld console (3DS), and watching an anime with Chris.  I'd sort've gotten out of the habit of watching anime after awhile, and new stuff keeps coming out.  It's easy to get left behind.  But Chris seems to really like watching them, and it's relatively relaxing.  Good enough, right?

Today I picked up the final pieces of my old chainmail business.  Some people can make the transition between hobby and business, but I couldn't.  It just stopped being fun.  There weren't enough colors for it to make me happy by itself, and it didn't make enough money to ever pay my rent.  Not even on the very best month I ever had.   I think speaking and writing re: autism should be different, since it's not really a hobby and more of a drive. 

Friday, December 4, 2015

Article: The Invisible Women


This is a lengthy, but highly informative, article showcasing the difficulties particular to autistic women.   There are four women whose lives they go into detail about, one in great depth.  All have struggled very hard with themselves and with the world around them. 

The article brings up a correlation between eating disorders and autism.  That's troubling.  I've had bulimic-esque binging tendencies, especially if I'm having a really rough day, but I don't purge like the disorder criteria state.  As such, I've always kind of assumed I've avoided that particular minefield.  In the article, Maya falls prey to anorexia, in part because of her love of numbers.  Perhaps the fact that I don't love numbers also helps?  I'm not sure. 

Tuesday, December 1, 2015

LENS and Life, week of 11/24

Zero sites today, because it's Thanksgiving week and doctors deserve days off too.  I don't feel any more irritable than usual, so perhaps the week on, week off thing will be a regular occurrence?  No idea. 

We're about 4 days into the sleep multivitamin thing.  I wake up repeatedly at night, which I did before starting all this stuff with melatonin.  However, I am at least not having grainy sleepy-sand around my eyes in the morning, so I presume it's doing something.  No idea what, but something.  I still don't wake up feeling rested and refreshed.  My doctor mentioned that I should probably pester my primary care person if I want to do a sleep study, because otherwise it costs upwards of $1000.  And it's likely to take months of visits, and possibly not even happen depending on what the doctors think. 

In any case, we're already pretty sure I don't have sleep apnea.  This is excellent, because sleep apnea can absolutely kill you.  Also you have to wear uncomfortable stuff to adjust for the fact that your breathing doesn't work right while sleeping.  I'd kind of like to pass on that. 

In less cheery news, I reapplied for Medicaid about a month ago and received a denial letter today.  It doesn't state specifically why, but since my (lack of) income isn't a problem, I'm calling them.  They can tell me why, and reinstate it immediately thanks very much. 

In career-related news, I'm keeping busy attending various autism and special-ed related events.  I certainly missed out on approximately a gadzillion headaches, growing up without knowing I was autistic.  My parents, too.  Yeeg. 

While I found much of the events depressing (they're geared towards younger people less able to blend in with neurotypical folks), there was a nice bright point that I'd like to highlight.  Last year, a law went into effect called the ABLE Act.  This is excellent news for pretty much any family with a special-needs or "different" member. 

The ABLE Act establishes what's basically a special kind of bank savings account.  The money in this account is exempt from Social Security resource checks that determine your eligibility for SSI, and can be saved or used pay medical expenses or other expenses. 

In short, the ABLE Act allows a person considered "disabled" to actually save money for their future.  One of the most valid complaints about Social Security is that it cripples people who actually want to get out of poverty.  If they have over $2000 ($3000 for families) in the bank account, they no longer qualify for assistance and are on their own.  Boy howdy, a whole $3000 dollars.  That's definitely enough padding for an entire family.  (/sarcasm)  Especially when they only have one half-broken car, and it breaks, and both parents are working and need transport... that's about the cost of one crummy used car.  Or, maybe enough to last a few months without support if they're lucky.  Or enough to make a down payment on some nasty high medical bills if someone gets into an accident.  Then they're all out of money and probably in debt to boot. 

As I understand it, most families and individuals on SSI have to stress about not making too much money, lest they lose their benefits.  And entirely unable to save up enough to safely get themselves out of it, thanks to how the law is written. 

So you see the problem here, and ABLE Act's solution.  At least for qualified disabled people.  There's a very wordy summary and Q&A here.

Beyond that, I've found out that while there are a few entry level position type job programs for autistic people and other folks, there aren't really things that appeal to me, or my web designer friend, or my friend who presently works at a phone survey place.  So we're all kind of in this uncomfortable place between the neurotypical people of our generation (can't find a job, where's a job I actually like?) and the folks less able to blend than we are (can't get anyone to hire us at all, because we don't do the song and dance very well). 

This makes me uneasy.  I'm trying to circumvent the song and dance of formal job applications by making my own career, but it's... concerning... to see how hard it is for autistic people that blend a little better to find something fulfilling.  Oh, there's lots of talk in the Special Education world about linking people with stuff they love, but very little actually doing that. 

I probably shouldn't be so hard on them.  It's not like neurotypical people find it easy to find a job doing what they love.  Or even knowing what they love.  It's just, it's so easy for us to slip through the cracks.  Because it's harder for us to be heard, and "out of sight, out of mind" is absolutely a truth you can rely on. 

Friday, November 27, 2015

30 grams of sugar

That's how much I get to have, per day.  You know how much sugar that is?  It's one yogurt and one truffle.  It's two large bananas.  Roughly 55 M&Ms.  In short, it's the easiest thing in the world to accidentally surpass.  How did it come to this?  Well...

I've been counting calories for about three weeks now.  While my weight has fluctuated some, it's stayed about even.  This is despite making my calorie goals, and getting exercise 3-5 days a week.  In short, things aren't going well.  So I asked my doctor about what else I could be doing.  She recommended 5 days/week of exercise, even really light exercise.  But she also recommended limiting my sugar to 30 grams per day.

As it turns out, this is absurdly difficult.

I'm now weighing food based on how much sugar it has per serving, rather than calories.  It turns out that if you mainly focus on sugar, you end up having to avoid a lot of calorie-intensive stuff anyway.  Y'know, like any kind of candy, most chips, and even some "healthy" foods.  I've sent the last of the Halloween candy to work with Chris, where its sugary deliciousness can be distributed across lots of people rather than going to my thighs.

One of the doctor's recommendations was that I start replacing my breakfast with a protein shake.  She gave me a handout.  In the most basic of formats, the recipe is: plant-based protein powder (like hemp, pea, or rice), fiber (flax seeds, spinach, kale), fruit (berries, banana, etc), and liquid (almond milk, water, rice milk, etc).  Blend, and you have yourself a pretty healthy breakfast on the go.  She has two example recipes.  The first was okay, after I got the recipe right.  (Details are on Twitter and Instagram)

The second...  made the morning horrifying.  It was a kale-based smoothie, which I probably should have known better than to try.  But more tellingly, it lacked any sweetener whatsoever. Avocado is not sweet.  Healthy, maybe, but not sweet.  The cocoa powder (unsweetened) and almond extract could not hide the foul slap of kale.  Worse, the entire thing looked like green sludge.

I couldn't make myself drink more than 5 swallows of it.  I was an immensely picky eater as a child.  As an adult, I've learned to just shove stuff into my mouth, chew it, and swallow it while trying not to pay attention to it.  I got pretty good at that, and use that tactic to this day every time I go to someone's house and they serve something I know I don't like.  I couldn't manage it with this smoothie.  It was that awful.

In a fit of desperation, I doctored the unholy green sludge with a whole banana, adding a ton of sugar (albeit fructose, a natural sugar) to the mix.  It was still about the worst thing ever.  So finally, determined not to waste all the time I'd spent putting together the ingredients, measuring out and adding those ingredients to my food tracker, and the money spent buying those ingredients.... I chugged the horrific substance (20 ounces' worth, in the end).  I then waited to see if my stomach was going to reject the unholy green sludge, because my taste buds were firmly advocating for the immediate ejection of anything that tasted that hideous.

It's been about 7 hours, so I guess my stomach has decided to keep the unholy green sludge.  It's extremely healthy unholy green sludge, which is another reason I downed it rather than exiling it to the garbage disposal.

Now if only my taste buds would forget this ever happened...  I tried placating them with a chunk of (humane) steak, then a truffle from my birthday present, then (sugarless) snack crackers, but apparently the whole experience was sufficiently traumatic that even that and seven hours can't make the memory of the taste go away.

Needless to say, I'm going back to the first recipe, with the too much fructose-sugar, tomorrow.  I'll figure out how to get rid of the rest of the kale and the remaining avocado, somehow.  I'm going to try doing half kale, half spinach for tomorrow's smoothie.  If that's completely horrible, I may end up screwing up my eyes and eating the kale raw.  (Let's hope it doesn't come to that.  One traumatic experience is enough for the week, right?)

Tuesday, November 24, 2015

LENS and Life, week of 11/17

One site again this week, and much of me kvetching about health-related things.  I'm not sleeping super well, and with the counting calories and other things, it's wearing on me.  Yesterday I woke up crabby and grumpy, which lasted until I flopped in bed, put an arm over my eyes to shade them from the sun, and took a two hour nap.  After which I felt better, but one of my eyeballs didn't like the pressure I'd put on it and refused to focus properly for a half hour.

So the doctor has recommended I try what basically sounds like a multivitamin for sleep.  Take two at bedtime, and they're a mixture of melatonin (the chemical that makes you sleepy), valerian, B6, and various other things.  Downside: they're expensive.  But I have birthday money, since the noise canceling earphones I'd bought didn't pan out.  So I'll get to try them out for a month and see if they help.

I also invested in a small thing of hemp protein (+fiber) powder, on her recommendation.  I'm getting to eat more meat these days, since I found a source for pork and now one for turkey, but it's still really hard to eat enough of it.  She starts each day with a protein/fiber smoothie/shake concoction that sounds like it's mainly made of vegetables, but contains a good chunk of the day's protein and fiber requirements.  I despise the sound of my blender, but I may try to make it work.  The issue is going to be making it not taste hideous, because...

Another thing I learned today was that my calorie tracking app vastly over-estimates how much sugar I can have in a day.  So I had my doctor (PhD in Nutrition, or soon to be PhD in Nutrition) manually enter sane goals for various nutrients.  She nearly halved my daily sugar allowance, which makes me very sad for any ice cream, chocolate, or other sweets.  I'm dreading looking at the pretty box of fancy truffles my friend got me, lest I find a single one of those delicious treats is my entire day's sugar.  (I really hope not, they're cherry sized...)

The final thing I learned is that the sleep trackers in smartwear, like Fitbits or Jawbones, are only useful for the broadest of information.  This is annoying, because I was rather hoping I could buy a good one and figure out why I don't sleep very soundly.  However, it does mean that I don't have to go out of my way to get a super-expensive one if I want to try it anyway.  Today on Meh.com, a site that offers one deal a day, they were selling a pair of low-end activity trackers in the Fitbit/Jawbone bracelet style.  $20 for 2.  I'm not expecting much, but it will tell me (hopefully) how much my heartrate accelerates during exercise, how many steps I take in a day, how many calories burned, etc.

Any of that basic information would be helpful, honestly.  Since I'm exercising 3 days per week at the gym (possibly up to 5 days a week, with 2 days being "just go there and walk or something"), and their heartrate monitors are broken more than half the time, it'd be nice to have something that'll tell me how I'm doing.  The cheapo trackers won't be here for at least a week or two, though, so it'll have to wait.  In the meantime, I have a lot of calorie counting to do...

Friday, November 20, 2015

Explaining Sound Sensitivity and Why ANC (Active Noise Canceling) Matters

(warning: this blog entry is long.  I divided it into sections to make it easier to read.  I hope that helps.)

The Intro, or Why This Came Up At All 
I've just returned from the gym, where I've had a membership for a couple weeks now.  The place is called Planet Fitness, a line of gyms that offer $10/month memberships in exchange for a stripped down (but aggressively nonjudgmental) experience.  They have the whole line of exercise machines, for example, but no pool or tennis courts or indoor/outdoor track.  The other relevant feature about them is the decor.  Besides that the colors are purple and yellow (yes, seriously), this particular gym was built in half of an old Menards (home and garden store), and they haven't done a smidgen of soundproofing since acquiring the property, as far as I can tell.  I swear, if a single machine is clicking halfway across the massive exercise floor, I can hear it.  With at least 20 cardio machines going at any one time, and at least half as many strength training machines plus the music they pipe in...  It's really bad for concentrating on your workout.

First Attempt
For this reason, and several others, I've had noise-canceling headphones on my wishlist since my last pair broke a few years ago.  I've gotten along well enough without them, but it's been an itch in the back of my mind, and between this gym and the fact that my sound sensitivity seems to be worse some days now, I finally put my foot down and invested in a $50 pair.  Hooray for birthday money.

Sadly, despite my enthusiasm, the earbuds did not pan out.  They barely did a thing, in fact.  I might as well have been wearing normal earbuds.  Quite a difference from my last pair, where I could turn them on and the sounds of the road and the whistling of the wind went blissfully quiet with a polite "hiss" as the electronics powered up.

But Fortunately...
So I was back to square one, and disgruntled to boot.  I count as the working poor, which means I can't afford to drop several hundred bucks for the high grade headphones my doctor recommended.  (Her kids have sound sensitivity too, go figure.)  As God would have it, my anniversary with my boyfriend was coming up, and given how disappointed I was at the failure of the other earbuds, he hatched a plan.  Long story short: because my boyfriend cares about my sanity and is very sweet, I now own these:
He even got them in blue.
These are Bose (QC20), meaning they're stupidly expensive but are generally the best the consumer market can offer.  The ratings do bear that out, thankfully.  More than the ratings, though, I've tried these out for a week or so.  They bear out and exceed my memories of my old Active Noise Canceling (ANC) earphones.  They come with two modes of ANC operation: one for being able to hear people (Aware mode), and one for not (unnamed, but I snarkily call it "Unaware mode").  The latter mode is excellent for drowning out road sounds, rumbles, whirs from fans, distant slamming doors, and other annoyances.  It seems to work fairly well across all ranges of sound, from high pitched squeaks on poorly oiled hinges to the bass of the sounds of the road.

(Sidenote: I do not use Unaware mode while driving.  One of the first ways you know something is wrong with your car is by the sounds it makes.  Plus being able to hear cars coming up beside you is an excellent aid to checking your mirrors.)

Active Noise Canceling, Noise Levels, and the Gym
All that said, I've been putting those earbuds through their paces at the gym I mentioned above, with its layers upon layers of cacophony.  Impressively, Unaware mode does not, in fact, completely drown out the noise of the gym.  I went at a relatively offpeak hour, 2:30, and I could still hear people chattering behind me (though not as well as I would've otherwise).  I could still hear the annoying click click behind me and to the right, the sound of a limping machine some guy wouldn't get off.  It was all there, just much quieter. 

Having some of the best ANC available, but still being able to hear all that, got me thinking.  Prior to today, I'd always thought sound sensitivity was mainly an issue with loud noises.  The loudness of the gym, for example, necessitated headphones or earplugs.  The loudness of a movie theater always necessitates earplugs, and even then it's noisy.  I'd get headaches.  I picked up an app that tracks deciBel levels, specifically to check how sensitive I was.

My readings on that app were... underwhelming.  The world around me almost never approximates a jet engine, even though it can really feel like it.  Noise levels rarely get above 70-80 deciBels.  (80 dB, by the way, is being right next to the in-sink garbage disposals while they're running.  A comparison chart, for the curious.)  That lack of high readings bothered me.  If it wasn't the noise of a place, why did I still get headaches and want to go hide in quieter places?

Sound Sensitivity Explained
I couldn't figure it out... until I spent time in that gym today in Unaware mode.  I measured the gym's noise level out of curiosity.  Never got above 70 dB.  So it wasn't the sound level that drove me bonkers.  It was the sound complexity.  The sheer number of things going on at one time.  People walking around chattering, the clunks of weights and strength training devices, thud-thuddings from the footsteps on treadmills, high-pitched beeps as people programmed their cardio machines, music blaring from the speakers...

The world, you see, is a symphony of sound.  My brain doesn't filter all that sound as politely as most peoples' does.  At this moment in my very quiet apartment (25 dB), there are three smallish fans running, plus the hum of my computer's machinery.  Every key I hit makes a soft sound somewhere between a tap, a click, and a thud.  The mouse makes sharpish clicking sounds.  Because all of that is relatively quiet, I'm only marginally aware of it.  Most people wouldn't hear it at all, because the brain filters out extraneous and irrelevant noise.  No one really needs to hear every key they press on a keyboard.

So my brain doesn't do that very well.  Here in my very quiet apartment, it's not really overwhelming.  There isn't much loud or complexity.  Outside, though, is an entirely different experience.  From airplanes to birds to cars to dishes, all the way down the alphabet to zippers, this world has a lot of different sounds.

The vast majority of those sounds are unexpected.  If I see a car coming by, my brain will usually buffer and "quiet" the sound of it passing.  But if a car comes up behind me suddenly, there's an excellent chance I'll flinch and look around.  My brain is already bad at ignoring sounds that don't matter, but adding unpredictability into it basically ensures I won't be able to ignore it.

Stop for a minute and listen to your surroundings.  Try to note every separate sound you can hear.  Perhaps there's a coffee maker, or your refrigerator, or the clink of dishes, or your computer's fan whirs quietly.  If you're out and about, perhaps there are people talking, or machines working, or cars passing.  Try to listen to all those sounds at once.  That's what it's like for me to have sound sensitivity, but all the time. 

Instead of my brain automatically filtering out sounds that don't matter, I actively have to set them aside.  If the sound was very sudden, sharp, and/or loud, it may have made me physically jump or twitch, and then I have to calm down from the sudden spike of heartrate and adrenaline.  Even if I don't physically react, I often still suffer the heartrate spike and adrenaline. 

I do this all day. 

The Importance of Active Noise Canceling
I mentioned earlier that because my apartment is pretty quiet, I'm only marginally aware of the various noises in it.  So if I have a device that selectively quiets or eliminates sounds from my threshold of awareness, that saves me a lot of twitching, jumping, flinching, and other unpleasant reactions.  The better the strength and "intelligence" of the device, the less energy I have to spend reacting, setting aside those sounds, and refocusing on the task at hand.  It's like having a secondary filter, complementing my brain's subpar filter, leaving me more energy to deal with the rest of life.

I cannot stress enough how incredible that is.  Life is anywhere from draining to exhausting on any given day.  Having something to keep some of that lost energy, or a portable place to isolate myself from the chaos of the day, is wonderful.

I usually go through the day without using any ANC; this is my life, after all.  But knowing it's there, ready to quiet the multitudinous clamor of life if it gets overwhelming, is comforting.  I've taken to carrying them even when I don't think I'll need them.  They're nearly always at hand, and I suspect they will join the list of things I don't like to leave home without: my tablet, keys, and wallet.  (Once upon a time, "a good book" would also have been on that list, but I digitized most of my library and put it on my tablet.  I'm presently carrying around a paperback, though.)

Some Concerns
I'm a little afraid of wearing these earbuds too often and getting used to the world not being so complex, only to be caught somewhere without them and be unable to focus.  It's the same rationale I use with painkillers.  For an average day, I should be able to get through life without having to resort to external help.  If my headache isn't too bad and might be from dehydration or because I haven't exercised my neck muscles, I prefer to drink some water and exercise my neck, not pop some pills and ignore the potential causes.

There's also the potential of making my sensitivity worse, in general.  Apparently in some cases paying more attention to these sensitivities (or trying to treat them) can exacerbate them.  I definitely, definitely do not need worse brain-sound filters.  So I'm going to have to be careful with how often I reach for these earbuds.

Does anyone else think life is like a giant balancing act? 

Tuesday, November 17, 2015

LENS and Life, week of 11/10

Nothing catastrophic has occurred yet as a result of missing LENS.  At least, I'm pretty sure having LENS today would not improve the quality of this webinar I'm watching.  As someone who works with microphones multiple times a month, it physically makes me squirm and twitch when people aren't properly using their microphones or aren't properly miked.

I'm going to have a headache by the time this webinar (topic: Work Transitions for Youths with Disabilities) is done.  It's building in the back of my neck.  I can't hear the presenters because they're muffled.  As far as I can tell, they've just set up a webcam in front of the presenter (among a roomful of people!), pointed it at the presenter, and went "meh, good enough."  You really need a recording microphone if your setup is that muffled.  You just do. Anyway, to make the presenters actually intelligible, I turned up the volume a ton.  My decibel tracking app declares I shouldn't be busting an eardrum anytime soon (max level has been 75 dB), but the quality of the sound varies between sharp and muffled.  So maybe that explains it.

Speaking of sound-related problems, my noise-cancelling headphones did not work out.  Despite good ratings, they did almost nothing for me, so they're on their way back to Amazon.  I'll have to figure out something else.  In the meantime, I've crabbily bought myself a bulk pack of earplugs.  My doctor recommended getting those over-ear earplug-things you see guys on riding lawnmowers wearing.  She says they're like $20.  I might try to get a pair of those, and put the foam earplugs under them.  Consumer earplugs, you see, are limited to about 30 dB of sound blockage.  You can find as high as 35 dB, sometimes, but that's about as high as it goes.  Between my oversensitive ears/brain, I don't consider that enough.  I doubt putting two kinds of earplugs together will give me additive sound blocking (30 dB foam earplugs + 32 dB over-ear eargplugs = 62 dB), but I could see getting about 50 dB blocked that way. That might be enough.

Nothing super exciting has happened this week yet, but Chris and I will be celebrating our 3 year anniversary of dating in a few days.  In brief: we dated long distance for a couple years, then last year he moved here to be with me.  The transition has been challenging, but we've been up to the task.  My parents and other family are getting a little antsy for a wedding, which... I get, but I can't exactly summon money out of nowhere.  Chris has student loans, we want to get a house (and he needs a better bed), and none of this precisely happens quickly.

In truth, 3 years seems a lot longer than it actually has been.  Long distance is kind of getting to know each other, kind of not.  While Chris and I were honest with each other, it wasn't like you could just go from knowing someone online to being sure you could spend the rest of your life with them.  Or at least I can't.  I'm not that optimistic and trusting.  Having gotten to know Chris more over the last year or so, I think we could do the lifetime thing.  But unless some of my impatient relatives would like to drum up some help towards our various costs, they're going to have to wait a bit longer.

In the meantime, we're thinking of celebrating a bit with a meal outside the house, and I'm probably going to help him get something he's wanted for awhile.  By the time this posts, he should have already chosen, so I can spoil it here.  The new Star Wars movie is coming, he loves Star Wars, and he's always wanted a lightsaber.  Not the kiddie toy plastic lightsaber, an actual sturdy one.  So I'm going to give him a choice: he can either buy one with some help from me (I'll cover about 2/3rds the cost of one), or I'll pay for him to make one at a local makerspace.  (Makerspace (n): a building and community where people can go to fabricate projects.  Usually supported and run by the community, often contains equipment you would only find in industrial settings.  In this particular space, you pay a flat fee to get help making your project, and bring the materials yourself.)

I'm kinda hoping he opts for making his own, because that's way more awesome than just buying one.  Still, he's keeping himself pretty busy, so perhaps he won't feel he has time.  Either way, it will hopefully make him happy. 

Friday, November 13, 2015

Reading Recommendation: The Shallows by Nicholas Carr

There's been a lot of back and forth about the effects of computers, or more specifically, the effects of the Internet, on our brains.  This 224 page (in larger, library font) book covers the history of our brains' development, starting with the advent of writing.  He declares that when the printing press made writing of all kinds accessible, our brains rewired themselves to think deeply and thoroughly, rather than what we'd done before- shallowly and quickly.  And the Internet, he says, reverting that ability.  Too much information, too fast, and not enough time to process it all.  It degrades our depth of thinking, our ability to be compassionate to others' difficulties, and, in the end, our humanity (he argues).

It also talks about brain plasticity, or the ability of adult brains to repurpose neurons.  An easy example is a study that blindfolded sighted people and started them in learning Braille.  After five days, there were notable differences in the part of the brain responsible for sight (which they were no longer using).  Specifically, that part of the brain was starting to respond to touch sensations.  In short, the brain was rewiring itself to compensate for no longer being able to see. (study here)

I don't entirely agree with the author's conclusions, but he's cited enough studies (and I've studied enough psychology) that I can safely say his concerns have merit.  I think I may personally try to straddle the line between the "thorough connected and near-mindless" modern person he decries, and the deeply thoughtful, bookish person he exalts and mourns.  I won't exile myself from modern life merely because modern life is changing us.  I love books, and a lot of my best thoughts come from thinking deeply, but I refuse to be stuck in the past.  More than that, if I want to have any chance of connecting with people in the present, I need to be able to speak their language and relate to them.  I can't do that if they can't slow down enough to read my thoughts on this blog. 

In conclusion, it was a thought-provoking read.  If you do grab this book and read it, I have a challenge for you: see how many times you get distracted and want to pick up your phone, or check your email, or just get bored because your brain wants something new to look at.  Personally, I struggled through the first 75 pages, but after that it got easier. 

Tuesday, November 10, 2015

LENS and Life, week of 11/3

One site today, and the knowledge that next week will be another skipped week for LENS.  So far, nothing catastrophic has happened for skipping a week.  Makes me wonder what my next map will look like.  Perhaps I'll be able to drop back to once every two weeks?  I like regularly seeing my doctor, but the visits aren't exactly a cheeseburger and fries in price.

This week I found shiny things on the Internet.  I was trying to find something to let these blog posts be automatically posted to Facebook, and someone wrote a short article about how to do that.  It included a link to IFTTT.com, which is basically an "if this happens on [social service], do this on [other social service]."  So I got it to hook up Blogger and Facebook, and I should be set from now on.  Yay!

The ease of use inspired me to create a Twitter account (realautistic) and an Instagram (realisticautistic), so I'm almost but not quite caught up to the current generation in social media.  I think I'm missing Snapchat, and maybe haven't heard of the most recently whatsit.  I'm not sure I'm young enough to use Snapchat.  Either way, my friends are mainly on Twitter and Facebook, so unless I get a following (of any kind, really), I'll leave it alone.

In the meantime, I'm probably going to post spare links with a bit of commentary to Facebook. Links that I think are useful but I can't make an entire blog entry out of.  I have approximately five such links open as tabs on my browser at this very moment.  I'll space them out, lest I overload my readers. 

The other thing I discovered on IFTTT was that it has a button option.  You can literally program a virtual button to do things, like email you your coordinates, or a map of your location, or play a sound, or call you.  So I now have three buttons: one that plays a sound, one that calls me (because why not), and one that "clocks me in to work."  Turns out you can link these things to Google spreadsheets, and when I press the button, it records the date and time I pressed it.  It's always felt more official and job-y when I've clocked in and out of work.  And I have a really hard to time considering free time "work time" when self-employed, so having the ability to clock in and out is basically amazing.  It's really just playing with my mental switches, but it's a really effective method of doing so.

Other other thing: I have business cards coming!  I've been wanting to have some for The Realistic Autistic for awhile, and there've been several occasions where I really could've used them.  So for ~$15, I shall have 500 of them and that should be enough to hold me while I try, once again, to figure out a logo.  I worked with a graphic designer and a couple artists at one point, I know better than to just say, "make me a logo that's unique" without having any idea what that logo should look like.  It's roughly on par with saying, "read my mind and create what I don't know I want."  Not very nice to the poor art-person.

Last thing is that I've started counting calories again using an app on my tablet.  I've always been mildly overweight, but it's gotten worse since the stress of my job.  I would like to lose about 30.  In theory, that's as easy as teaching myself not to eat while stressed, counting calories regularly using the app's lookup and barcode scan features, and keeping going with the 3/week running schedule I have going with Chris (my boyfriend).

In practicality, my doctor assures me that it's more complicated than that, especially if you have gland problems or unusual biology.  I remember being in pretty good shape exactly once in my life, and that was when I exercised 6 days a week, alternating cardio and weight training, and ate my usual salad/ vegetarian etc. at the college dining hall.  I'm going to really, really hope I don't have unusual biology of any kind, because I need complicating factors in my life like I need a black widow spider in my apartment.

The results won't be very clear for several weeks yet.  I'm aiming for 1-2 pounds lost per week, which is healthy, rather than 15 pounds in a week which is really, really not.  I have yet to decide if I'm allowed to have "free days" like my friend does.  Those are days where you don't count calories, you just try not to be completely terrible to your body.  Or "cheat" days, where you're allowed to have that slice of cake, thank you, as long as it's only one and only once a week.  

Friday, November 6, 2015

Birthday Shenanigans

I am officially 27.  I will promptly be forgetting that fact, because I feel like birthdays after 22 or so stop mattering so much.  I suppose 30 will matter some, and 40, and 50.  The nice round numbers.  But I usually have to stop and think how old I am chronologically, because it's not a fact I assign much importance to.

So, technically my birthday isn't over until the last present arrives.  As I age, I find that my birthday is like a bell curve in statistics.

It's not really your birthday about a week before your birthday's date, but if you have a party that day, it's kinda your birthday.  That's one end of the bell curve.  As you get closer to the actual day, it becomes more your birthday as cards and presents arrive.  On the actual date, it's mostly your birthday (middle of the hump in the chart), because it's the correct date and maybe you saved your presents so you could open them, like I did.  And maybe, if you're very fortunate, you have a nice significant other who'll take you out for special things.  After the day passes, it becomes less and less your birthday until the last present or card arrives and is opened.  After that, your birthday is past.

There's still two presents in the mail, but I'll give a rundown of most of my birthday.

First there was the party on Sunday the 25th.  This was a joint party, and I've mentioned it in the last post.  It had cake, there was Mario Party, Chris and I made bison burgers, and good times were had.  Chris and I had to leave a little early because I got worn out by the noise and gaming, but it was a good party.  My friends snagged me copies of Monster Hunter 3 Ultimate and Super Smash Bros.

Between that day and the 31st, a box, an envelope, and a card arrived in the mail.  Chris acquired a very fancily decorated cake, which we tucked into a little before the actual day because it'd be a shame to let the poor cake go stale.  I was also given money towards the fondue excursion by two lovely ladies I call friends.  It came in very handy, because the fondue place was very expensive, all told.

On the 31st, I opened the card, envelope, and box.  The card was a fancy popup birthday card with firework-cutouts.  Very enjoyable to see.  The box, as Chris guessed but didn't tell me, was the fancy wireless keyboard I'd been wanting.  It types very quietly, is backlit for ease of use in a dim room, and has a number of excellently useful function keys.  For instance, four of them will control your music.  There's a "open your music program" key, a "play/pause" key, and forward and backward keys for if you're using a playlist or want to skip ahead in an album.  There's also a calculator key, so if you press that it opens the Windows calculator program.  In addition, I can reprogram those keys if I so desire.  It takes some finagling, but I probably won't use the mail key, since I don't use Outlook or any mail software.  Technology is pretty neat though, right?

The envelope was part of Chris' present to me.  It contained two lab-created sapphires (it's extremely inexpensive to make gemstones, versus mining them).  I love blue, and favor deep blue sapphires most, so he found me a couple budget ones.  I might see if I can find a little treasure chest for them, or I might set them into jewelry.  Not sure yet.

After opening presents we went to get lunch.  I had received a gift card to Noodles and Co. from my very thoughtful boss, so we got our meals there and Chris picked up a copy of Monster Hunter at the Gamestop next door.  He wants to play the game with me, and the game does have that capability.

Chris basically went all out for this birthday, so after we'd gotten lunch, we went to his mysterious outing.  It turned out to be ziplining.  You put on a harness and are attached to a long line strung between two platforms.  You hop off the first platform and zoooooooooom down the line towards the second one.  These lines had brakes built into them for extra safety.  Looks like this:

The area was located at a ski lodge type place, and was new this year.  Chris and I went with a family group.  Three kids and three adults.  It was, unfortunately, raining the entire time, but we'd been warned to dress in layers and wear boots and gloves.  Just as well that we did.  Also excellent, my winter coat is highly water resistant.  It's well over 7 years old and still going strong.  So my torso stayed plenty warm and dry.  My legs didn't fare so well, but only because I don't have snow pants or anything waterproof for them.  I opted for pajama pants under jeans.  Still pretty warm, but sadly not dry after 2 hours.

It was a good time, and we amused ourselves by kicking the wet leaves off the platforms while we waited our turn to zipline.

After we got through the 10 ziplines, we thanked our guides (one of whom was dressed like a rainbow clown for Halloween), and headed home to dry off.  Shortly after that, it was time to go for fondue.  Our reservation was for 6:30, but the experience actually took 2.5 hours.  They make the fondues at the table, and bring you dippables.  We opted for the 4 course meals, since we're not likely to do this again anytime soon.  There was cheddar cheese fondue (with bread, apple bits, and vegetables), followed by salads, followed by the entree (lobster, chicken, steak, and shrimp for him, various vegetables, tofu, and edamame for me), followed by creme brulee white chocolate fondue (with fruit, brownie bits, poundcake bits, and fancy marshmallows).  The portions were not huge, but there was a lot of variety and it added up.  I left the restaurant feeling very uncomfortably full.

Our waitress, like many of the waitstaff, was dressed up for Halloween (Nintendo characters theme, she was Link).  She was a pleasant person, and apparently took a liking to us because she did sing happy birthday to me despite not really doing that for people.  We tipped well, despite the expensive cost of the food.  Pleasant people should succeed in life and not have to worry about paying their bills.

After we got home, it was basically "wind down before bedtime" time, so we broke out our copies of Monster Hunter and I got to walk Chris through some of the oddities of the game.  It's not precisely intuitive, unfortunately.  I found a good guide written for beginners online, though, so I was able to get started and be a reasonably good resource for Chris getting started.

The next day was Sunday, and I had to do sound for church.  After that, though, I got to see Grandma.  We went to Pietro's, which is a semi-fancy Italian place.  Good food, with some to take home.  But Grandma surprised me after that, and instead of handing me a bag of things, she had us come to her apartment, where she promptly presented me with two packages.  Among other things, fancy patterned paper towels, glove-mittens, and fancy chocolate.  We sat for awhile and chatted, but had to leave before too long because I had friends coming over and we needed to clean up a bit.

We mostly finished tidying up before they arrived, since they got lost trying to find my apartment.  Another reason to get out of this place and find a nice condo or house.  I'd really anticipated just having them over for an hour or two, but we started watching Gremlins, and then they wanted to get food and didn't want to go candy-shopping at Meijer (post-Halloween candy sales!  Sniff.).  So we didn't end up parting ways until 5 hours later.  I was very worn out, suffice it to say.

Which almost brings us to today, except that I checked my email and found that my brother and sister-in-law had sent me a gift card and I'd somehow missed the notification.  So there was plotting, and planning, and I finally decided to spend it on a pair of noise canceling headphones and a new wireless mouse.  I'd been wanting the former for years since my last pair broke, and I seem to go through computer mice far faster than everybody else, so it's needed.  Those will arrive tomorrow, so they're still counting as "not yet received."

Yesterday I buckled down to write thank you notes to the people I couldn't thank in person, and found to my great pleasure that I only needed to write two.  I always find writing thank you notes awkward.  I was taught that you can't just say, "oh hey, thanks for the thing."   You have to include small talk.  You have to make darned sure that you demonstrate caring about the person who sent you the thing.  If it's a gift card, you have to tell them what you spent it on, and why you appreciate what you bought. This is fine for people I can keep up with online, but difficult for family members I see maybe once a year.  Thankfully, those are done.  I was also taught that I was supposed to physically write thank you notes, but I eschewed that in favor of email.  I can't imagine anyone would really want to try to read my handwriting, anyway.

The other thing in transit is a present from my first friend, Simon.  Very mysterious, since he's never let me send him presents.  He says it's because I was having such a miserable week the last few weeks up to my birthday, and that's just not allowed.  I have absolutely no idea what it could be, but he says the shipping is super-slow, so it might keep being my birthday (ever-so-slightly) for another few days.

All in all, it's been a very nice birthday.  Probably one of the very best ever. 

Edit: Simon's mysterious present came!  A mouthwatering selection of Godiva truffles, which I am going to have to try very hard not to devour.  I just started counting calories again with an exercise/nutrition app, and these are likely to be both delicious and calorie intensive.  Lots of awesome flavors, like creme brulee, cheesecake, chocolate lava cake, and red velvet.  Yeeeee!  (<- happy sound)

Tuesday, November 3, 2015

LENS and Life, week of 10/27

One site today.  I yawned extra much in the car trip home, but that might be just the fact that I'm done for the week (LENS happened Thursday instead of Tuesday) and my body will be continuing to punish me for lack of sleep for... eh... another few days or so.

This week ends my time at Hope Network. I'll go into that in another entry, but this last week hasn't been too bad.  I have the weekend to look forward to, with Chris dragging me off to some mysterious outing, and then the long-awaited fondue excursion.

Craig's birthday has come and gone.  There was a party on Sunday for him, but it turned out that it was also for me.  Which I was initially annoyed by, but given how little both Craig and I like being the center of attention, it kinda worked.  Perhaps I'll push for a repeat next year.  What I really wasn't expecting, though, was presents.  I keep an online wishlist for friends and family to reference, and make a point of keeping it up to date.  However, most people don't use it, so I was quite surprised to see that both presents I got were on that list: two video games I'd wanted to try.  Yayyy.

We (my boyfriend and I) got Craig a poker set (because this group of friends is amused by playing for fun, without money) and a really excellent thermos.  The kind that you pour hot coffee or tea into, shut, and then can open 6 hours later and the drink is still hot.  I have one, and it's basically excellent.  Since Craig loves coffee and has an annoyingly long commute to work, it seemed to fit.  He seemed happy, so I think we "successed" (succeeded).

So now I just need to get through my birthday.  There's already a present here, probably from my parents.  Something ordered online, so I can't be 100% sure it's from them.  Chris is surprised I haven't opened it already, but it seems more like a birthday if there's a small pile of presents to open.  Grandma has arranged to take me out to lunch the day after my birthday, so there's that to look forward to.  She's probably going to hand me a gift bag with a few small things in it, since that's a thing she does for occasions.  She's thoughtful like that.

Beyond those things this weekend, I'm just going to be trying to relax.  Change is hard for humans, but particularly autistic humans.  Even good change.  I'm not having crying fits or anything, but it's going to be weird trying to get used to not having a desk job with routines I need to follow.

I'll probably try to compensate some by getting a gym membership at the exceedingly low-cost gym nearby, and going to visit Calvin or various coffee shops regularly, but it's not nearly as structured, even so.  Complicating factor: I hate structuring my free time.  Absolutely hate.  So I may have to designate some time as "not free time" even though it started as free time. 

Friday, October 30, 2015

Minus One Job, and What's Next

Yesterday was the last day of my job at Hope Network.  I have mixed feelings about that; change is hard for people on the spectrum, even good change.  But my boss was a good guy about it.  He went and snagged me some nice boxes of tea, including one he personally enjoys.  So I had a cup yesterday evening, and it was quite pleasant. 

He also snagged a card for me, and went around getting it signed by the staff.  Mostly the one from the building I worked in.  People said some nice things, so that was sweet of them.  I need to find a place to display things that make me happy (-ier), because I'd like to put that up.  Probably going to have to wait 'til I have more space, though.  There were also "muffins" (gourmet muffins, definitely cupcakes with delusions and less icing). and those were tasty. 

Notably absent from any of this was my boss' boss.  She definitely had the news that I was leaving almost immediately after I put in my notice, but beyond checking what day I was leaving, I had not a word from her.  Does that say something about her, or something about my work, I wonder.  Most people, my boss included, seemed to think I'd done an okay job.  Or better than okay.  It's just odd, and puzzles like that bother me.  It's like seeing something out of the corner of your eye in a computer game, repeatedly. 

The difference between an angry expression and a fearful one is a few muscles, mostly around the eyes.  If you 're not looking for those little details, you can misinterpret a situation entirely wrong.  That's what makes that detail bothersome.

Eventually I'll have to truncate that train of thought, because it's unproductive.  I don't think I'll come to any understanding I don't already have.  Either she'll tell me what was up, or I'll live the rest of my life not knowing.  Either way, it's a little sad.  We didn't necessarily get along extra well.  I think she's used to communicating in emotions, or thinks that I do.  And I really don't.  I have emotions, and they can play a role in what words I choose, but given that I'm practically another species for brain wiring, I don't think it's wise to assume my emotions match a normal person's in any given situation.  Nor that I'm even listening to those emotions.  I communicate in words and logic.  Furthermore, I say what I mean, directly and honestly.  This sometimes results in misunderstandings, ironically. 

There was one conversation where she said I needed to do something, and I said "I'll do my best."  And she must've thought I was trying to weasel out of it or something, because she all but got in my face, telling me that this was part of my job (well duh) and she expected me to do it (double duh).  I would've gotten annoyed, but I kinda figured that would just make her more angry.  So after three or four repetitions of, "Yes, I understand, and that's why I'll be doing my best to do it," she left off. 

Classic misunderstanding.  There's a lot of ways to say "I'll do my best," and clearly she's heard ones with attitude a lot more than she's heard ones like mine.  I don't at all appreciate it, but it's a mite more understandable with context. 

I probably won't hear another word from her, honestly.  Post-job, I intend to be at lots of seminars and meetings for autism.  I didn't really see her attending much of those, beyond (maybe) the Hope Network events.  With luck, though, I'll see my boss at those and other events. 

What's next for me is to keep busy, learning.  I'm thinking I might audit a class or two.  Grand Valley State University has an autism program.  Seriously, an entire course schedule specifically to teach you about autism.  I tried and failed to talk to the head of that program in the past.  What better way to learn what people are leaving school knowing about us, and what better way to connect with that professor? 

I think my hardest challenge there is going to be to not correct the professor if they say something I know full well is wrong.  Like "people on the spectrum don't have empathy."  If the program is as good as people say it is, they probably won't teach that fallacy, but you never know. 

In addition to snagging some classes, I'm going to be attending a number of seminars though Autism Support of Kent County, and probably several other programs.  I have a lot to learn.  I never had an IEP for school.  Disability and the laws around it were never on my radar.  I have no idea what the legislation for reasonable accommodations is.  But I need to know all these things, because that's the world for autistic people today.  I want to speak and write and make people understand what it's like to be autistic, but I also want to be a resource for people on and off the spectrum.  You can't improve lives just with understanding.  That's a major component, and immensely important.  But not enough. 

Understanding a nonverbal autistic is already difficult because we rely so heavily on words.  You can do it with observation and patience and lots of time.  But you can also help them help themselves with a program on a tablet.  It has pictures that the person can press, like a stop sign.  When pressed, they say things, like "I need a break."  You can customize those pictures to the person's interests and particular needs. 

I barely know any of this stuff, because I wasn't diagnosed until my 20s.  (Augh, I'm going to be 27 tomorrow.  Gee, age 30, you're looking very intimidating from here.  I'll just try to enjoy not being you yet, 'kay?)

I barely know any of this, but I need to.  I can't be a good representation of autistic people if all I have is my own experience. 

In the meantime, I'm also going to try to start up something I wanted to do 10 months ago: a D&D campaign.  I haven't had the energy or time to do it- more on that later- but I should now, if I'm careful about my scheduling. 

Tuesday, October 27, 2015

LENS and Life, week of 10/20

One site today.

My birthday is coming...  But first, my friend's birthday is coming, and I get to watch him squirm a little bit.  Also foist presents upon him.  Thankfully he's gotten a bit better about appreciating presents as gifts, rather than debt.  He was apparently radically conditioned to believe that he's a waste of matter, and all presents are debts that must be repaid because he clearly cannot possibly deserve either friends or freewill gifts.  I sympathize, because I too feel like a waste of matter on occasion, but do not even slightly agree.  He's a pretty cool guy, with a fantastic work ethic and an immense amount of passion for his hobbies, and he deserves all the appreciation he gets. 

Before my birthday hits, but after his hits, my job will end.  My doctor has recommended that I celebrate the end of my job and celebrate my birthday separately, so I might just do that.  (The fact that she's got at least two doctorates makes it extra amusing, because I can say "my doctor recommends..." quite seriously, like it's a prescription or something.)  At least one of those celebrations will involve fondue.  I've always kind've wanted to go to a fondue restaurant, so Chris has somewhat begrudgingly agreed to take me to The Melting Pot, a chain mid-fancy fondue restaurant.  They're not precisely around the corner, but at least they do have a location within half an hour's drive. 

I won't be able to have the meat fondue (I didn't realize that was a thing, now I want to try and make some with humanely raised beef), but I can definitely have the cheese and chocolate fondues.  The former are apparently served with vegetables and bread, and the latter with seasonal fruit.  I'm kind of excited.  I wish the experience wasn't going to be so expensive, but it's still going to be fun.  I really like both cheese and chocolate, so as long as I don't burn my tongue, it should be a good experience.  And a nice way to end the month. 

It's weird, I don't usually look forward to things.  Usually they fill me with dread, anxiety, or at least mild stress.  Progress, hopefully. 

Friday, October 23, 2015

High and Low Functioning, or Dehumanizing Descriptions

I hear autistic people described a lot as "high functioning" and "low functioning."  Even fellow autistics and parents use these designations.  I initially found myself using the descriptor "high functioning" to assure people that they didn't have to worry about me throwing a tantrum or having a meltdown or something amorphously awful.  But I've given it some thought after reading other sources, and I've decided to stop using those descriptions of people.

Firstly, as someone much better at speaking than me pointed out, calling someone high or low functioning is dehumanizing.  Respectively, you're calling them "almost human" and "not really human," and defining "human" as "able to blend into our health- and wealth-center idealizing culture."  That's not okay. 

Second, the standard of measure is false.  Saying someone is high functioning is effectively saying that they have few problems with blending into the modern culture.  That is false, at least in my experience.  The most successful of us to blend are the ones who can act; the ones who studied what "normal" is supposed to look like and shaped ourselves masks to fit. 

As long as we wear the masks, people won't give us too hard a time for existing, or draw away from us, or worry about being near us.  But they're just masks.  Worse, is that when you act "normal" people assume you have no problems.  That's laughable even for neurotypical people, but it's especially laughable for autistic people.  The autism alone gives us plenty of problems, but it often comes with a host of other problems: depression, anxiety, sound or touch sensitivities, and even food sensitivities or allergies.

I'm somewhat on the fence about how to describe autistic people so as to assure our humanity to the casual listener, but at least one category that can be used is "verbal" and "nonverbal," with plenty in between.  Most days, I'm pretty verbal and articulate.  Some days, not so much. 

In truth, I spent so long trying to learn what "normal" was and compromise with being myself and being "normal" that I'm not entirely sure whether the verbal and articulate parts I've developed are really me.  Or what exactly "me" is.  So perhaps I or someone else verbal and articulate on the spectrum will be able to develop a descriptor that doesn't deny humanity to those of us that are a bit different.... not less. 

Tuesday, October 20, 2015

LENS and Life, week of 10/13

One site again today.  It's probably just going to be one site forever, after this, until we eventually taper off and cease treatment entirely.  Or unless I get a traumatic head injury, I guess.  Going to try and pass on that. 

The family birthdays have almost abated.  I have to make sure to say something to my mother tomorrow, lest I be a terrible daughter.  I already gifted her something, and she liked it, but that's really not an excuse to ignore the day itself.  After this it's only friends' birthdays, and eventually mine.  Bleh.  Yay presents, boo people making me the center of attention.  I share that dislike with my boy.  Though it kinda looks like he's gearing up to throw me a party, which gives me license to visit the same unkindness on him next May.  I should probably tell him that in the spirit of fair warnings. 

A couple weeks left at the job.  This week has actually been kinda awful, so I started counting days.  I was really trying not to do that, because I've found it directly corresponds to a marked decline in good attitude, but at this point the attitude is already gone, so I might as well.  Between multiple new insurances, my boss forgetting to do stuff 'til the last minute (and then unfortunately having me do it, because he's still absurdly busy), and the never ending slew of callers and voicemails, I'm out of energy and sanity.  I am literally glaring at the phone when it rings, and not picking it up.  And sometimes making mouthy comments at it.  It deserves it.  The people on the other end probably don't, but that phone absolutely deserves my dislike. 

I'm starting to spend a lot of time in bed, rather than sitting at my computer or going out and doing things.  I think I might need to cut that out.  My bed is nice and comfy, but I seem to end the afternoons brain burned rather than feeling relaxed.  I blame the fact that I stare at a computer screen most of the time at work.  Doesn't really make me want to stare at a computer screen when I get home.  But perhaps if I started using my desk as a desk instead of a computer-stand, that could be something. 

My old desk wouldn't have stood for that, as it was barely big enough to hold my computer, but I have a new one.  I rescued it from the dumpster.  It unfortunately needed a good bit of cleaning, but it's relatively well made, larger and sturdier than my old one, and even comes with a keyboard shelf.  I don't dumpster dive as a hobby or even really a passing interest, but my mother taught me that sometimes people throw out perfectly good stuff.  I once got a fantastic (if odd) pole lamp that way, a coffee table I'm still using, a TV and VCR in college, and another TV I ended up gifting.  Also a couple computer screens, a keyboard (which I'm now using), a set of shelves, a handmade kitchen island (made for an apartment just like mine, still using), and this desk.  I guess donating things is a lot of hassle for some people.  

Wednesday, October 14, 2015

LENS and Life, week of 10/6

One site today.

Well, the weekend was exhausting.  Not really surprising.  I love my family and they're pretty low key, but my grandmother is not improving and my little nephew has a cold.  Unfortunately that made him a little fussier and squeakier than he would've been otherwise, neither of which was helpful for stabilizing me.

I probably could've helped myself a bit by finding a place to go hide for a time now and then, but I see my family so seldom that it didn't really occur to me.  Once or twice a year is about the standard, unless it's my other grandmother.  She lives around here, so it's a little easier to visit.

Everyone in the family, practically, was taking pictures of my nephew and everyone else interacting with him.  After being bemused by that for awhile, I realized that while I absolutely still don't like pictures, we may not have my grandma around that long, and my nephew will never be this small again.  So I took a few videos with my new tablet.  (That would've been a useless gesture with my old iPad, but this tablet's camera is of sufficient quality that the result is passable.  Yay.  Much better than still pictures, in my opinion.)

I got to hold my nephew for a very short time.  I don't really know what to do with babies, so I basically just put out my arms and held very still.  If you hold very still, nothing can go wrong, right?  He didn't start crying, anyway, and I think people got some blackmail material, so that's all fine and well.

I ended up driving back late Saturday so I could sleep in my own bed, in my relatively quiet apartment rather than in the tiny cold bedroom above a blaring TV.  I got back home about two hours after my bedtime and was exhausted all the next day, but I still think it was worth it.  Now to survive the week.

Friday, October 9, 2015

Psychology says...

Have a graph.

That's a link to a graphical summary of some cognitive biases in Social Psychology.  Also a number of things I try to avoid or take into account on a regular basis. 

I try to avoid or sidestep #13, the placebo effect, the most.  A lot of the therapies and treatments I use aren't heavily backed by scientific studies, mainly because no one wants to fund those studies.  Research goes where the money is, mostly, so therapies like LENS and more natural remedies don't get a lot of attention or care.  This is extra unfortunate when those therapies actually do work, but you have to be careful; the power of belief is truly immense. 

#8, the conservatism bias, is hard for me to forgive sometimes.  I think that's because I'm still young and relatively flexible in thought.  Hopefully not because I'm an unaware hypocrite,  But I need to be more accepting, because there's been some evidence that people who're more conservative in nature are literally wired differently (brainwise) than liberal-minded people like me. 

#14, the innovation bias, sums up a lot of mistakes companies like Apple and Google make.  In some cases the product is actually excellent and just doesn't catch on, but... does anyone actually need an Apple Watch?  I don't.  Could just be me, I guess. 

#17 and #18, in my opinion, sum up a lot of the problems with human interaction.  We come to a discussion with an agenda in mind already: Us vs. Them.  The "Us" varies by the situation, but "Them" concepts are often very flat, unrealistic ideas.  Stereotyping is particularly annoying if people are expecting you to be Rain Man or entirely nonverbal. 

Tuesday, October 6, 2015

LENS and Life, Week of 9/29

No sites today, because my doctor is on vacation.  I should be fine for a week or so without LENS, but I'm worried about the upcoming weekend.  I will be seeing lots of family, including my new nephew.  I will also be staying in a house I don't much like, in a room that isn't mine. 

I love my family, and of all of us, I have the shortest drive for this family gathering, but I definitely expect this trip to be exhausting.  I've mostly managed to avoid being a terrible daughter/sister-in-law by snagging presents for everyone, so at least I have that going for me.  I still have to wrap them, though...

It's hard to think, honestly.  Road trips make my brain full of anxiety-fog, and this trip, though short, is no exception. 

Let's see... what else.  I put in my notice today.  My one-month notice.  My boss took it fairly well, which was good of him because it would have hurt if he'd gotten mad at me.  My reasons for leaving are good, and I know they're good, but it still kinda hurts to disappoint him. 

This week I also get to have my flu shot.  I'm getting it earlier in the year this year, and fervently hoping the disease experts chose the right strains.  When you get a flu shot, it's not just one kind of dead flu they inject you with, it's several.  That's in hopes that they'll cover whatever mutations the flu goes through as it travels.  Some years their guesses are better than others.  Without a job, the effect of having to stay home for a week wouldn't be as bad, but I'd still rather skip it.  I'm also really hoping I don't get sick from the shot, because apparently that happens too.  Still, likely to be less sick from body over-reacting to dead flu than body being attacked by live flu. 

Friday, October 2, 2015

More on the gifts of autism


Seems like there's increasing evidence for autism benefitting all kinds of intelligences and fields, not just science and mathematics.  I'm glad to see that, because math took a disliking to me in 6th grade and hasn't really gotten along with me since.  And science is fine, but not something I want to devote my life to.
My interests align more closely with writing, reading, education, and public relations.  I'm starting to see the need for visible autistic people, not just visible in print or in books or at conventions, but visible in the lives and communities of people.  But that's hard to do if people assume you can't do all of that from the start.  You can only kick down so many closed doors, y'know?  

Tuesday, September 29, 2015

LENS and Life, week of 9/22

One site again.  The doctor was thinking about doing two, but when she asked about the effect of the first one and I reported feeling more awake, she muttered something about my brain being very sensitive and put the LENS equipment away.

I'd be annoyed, but she's probably right.  I can throw my entire mood down the toilet if I eat too much sugar.  Getting insufficient sleep has definite effects on me.  It wouldn't at all surprise me if my brain was something on the order of the princess in "The Princess and the Pea," where the lady in question was apparently so sensitive that she could feel an uncooked pea shoved underneath 20+ mattresses, and that was enough to keep her from sleeping.  The story always struck me as utterly ridiculous, especially given the glorification of said sensitivity at the end, but the comparison may be apt.

This week I will be handing in my resignation to my job.  I don't love what I do, and since I have the option to not do it, I should focus on doing something else that will be satisfying and worthwhile.  It took me awhile to get to this point, because it's easy to stay miserable and stable, and hard to throw it away and pursue something new and only possibly better.  I blame my doctor.  She won't mind the negative phrasing of that last sentence and will definitely approve of my decision to leave. 

This week I also have to panic about presents (three family birthdays incoming, gah), get tires for my poor long-suffering car, and get new shoes.  October is the month of wallet-suffering for my family.  My mother, father, sister-in-law, and I all have birthdays in October.  My brother is the only one to break the trend, with a birthday in June.  The parents and my sister-in-law's birthdays also fall within two weeks of each other.  And I'm doing to be seeing all of them in a week or so.  Must shop for aaaaallll the things. 

I might see if I can get a haircut this week or next, too.  It's getting cooler outside, but my hair is not getting in any better condition and I'm kind've tired of it being everywhere.  I'll see how much it'll take to donate the cut hair to Locks of Love, then have them do something nice and low maintenance with whatever's left.  At least it'll be easier to care for in the morning. 

Friday, September 25, 2015

On "mind blindness"


This article gives a brief history of how autism came to be associated with a lack of empathy.  It also makes an important point about empathy: that just because you lack the innate cognitive ability to recognize why someone is sad or angry doesn't mean you lack the ability to emotionally share or pick up on that sadness or anger. 

Personally, I feel like I fell behind on the cognitive ability, at least for awhile, but the emotional ability to feel others' emotions has been there, making my life painful.  I think in general I have a low tolerance for emotions.  I used to cry a lot when I was little, whether I was in pain or sad or angry or happy.  It wasn't a choice, my eyes just got started and didn't wait for the rest of me to okay that it was appropriate to do so.  Sometimes my eyes' enthusiasm plagues me to this day, and it irritates the heck out of me.

I can't tell if LENS has made that better or worse.  I feel more emotions now, rather than walling them away because they're exasperating and don't make sense and are hideously inconvenient.  But they're still plenty exasperating, hideously inconvenient, and don't make sense. 

I think maybe I'll keep that phrase "my eyes' enthusiasm," or maybe "my eyes' exuberance" to describe why I tear up more often than I'd like.  It's a fallacy, of course, my brain is probably the culprit, but I have a lot of things to scowl at my brain about already.  Best to spread out the blame and maybe amuse some people in the process.