LENS and Life, week of 6/23

Still doing just one spot per visit.  No interesting fluctuations with my brain.  I guess this must be wind-down.  I forgot to ask this visit. 

My intestinal tract is slowly but surely improving.  I've had to take up examining the toilet's contents after each bowel movement, which is really not how I'd like to spend time, but it's a good way to gauge how well I'm doing.  The original estimate of two days turned out to be hilariously optimistic, unfortunately.

After a week and some spare change now of avoiding diary and HFCS like the plague, I've been able to add dairy back in without making extra trips to the bathroom.  This is good, because I really like cheese and cheese is in a lot of stuff.  I'm currently having a bowl of Blandi-Os (like Spaghetti-Os, but more boring), which at this point consists of vegetable broth, cubed humane chicken, assorted spices, and half-whole grain pasta shells.  But I'll probably be a lazy person later today and have a bowl of cereal for dinner.  What?  I'm an adult, I can do that. 

While I was avoiding everything tasty in the grocery store ever, I realized that while I'll sometimes complain about not knowing how to have fun or enjoy things, that's not universally true.  I apparently take a great deal of pleasure in food, especially good food.  This is perhaps not surprising.  My brother considers cooking for people an act of love, and I consider being cooked for an act of love.  Both of us probably got that mentality from my mother, who slaved in the kitchen for hours each week preparing and serving tasty, healthy, nutritionally balanced meals.  This was despite that she really would rather have been composing music, or reading books, or doing something else.  I was (and still am) dense, but I did manage to pick up on that aspect of mealtime, and so good food means contentedness and happiness and "all is well" to me. 

Which made this whole little ordeal that much more frustrating, because suddenly I didn't even have that to lean on.  And I am many things, but "chef" is not one of them.  I can cook somewhat, and I can follow directions (which means I can cook almost any recipe assuming it's thorough enough), but if you want enjoyment of cooking and gloriously delicious food, you should go find my brother.  I've never had a meal of his I didn't like.  Which is impressive, because on several occasions he has served things I actively dislike.  (I tried them anyway and was very pleasantly surprised.)

Marriage Equality and Why It Matters to Autism

Today, just after 10am, the Supreme Court of the United States declared that marriage between two men or two women is just as legal as a marriage between a man and a woman.  I know this, because I was watching the live blog run by the SCOTUS staff when it was announced.  The marriage between my two friends (who happen to be lesbians) is now legally binding in every state in the US.  Now they can have civil rights like my parents, and visit each other in the hospital if one of them gets sick.  This is important to them, and to me (even though I'm straight), but not immediately helpful to understanding or learning about autism. 

So why do I bring it up?  Because there are a lot of fights for equality and fairness going on right now, and this is a victory.  I have no idea who posited it first, but I was first introduced to the idea in Star Trek: The Next Generation.  The episode is most well known for Picard shouting, "There are four lights!" but Picard also comments on a very important concept of equality. 

In the episode, Picard is taken captive by the current bad-guy race, the Cardassians.  He is then questioned and then tortured, because that is obviously the best thing to do to war captives (sarcasm).  He has one torturer, who seems to enjoy talking philosophy while he does his job.  At one point, the torturer even brings his little daughter near the battered, exhausted Picard.  She asks her father if humans have mothers and fathers like she does, and the torturer replies that they do, but that they don't love their children, and that they're not the same as Cardassians.  After she's left, Picard expresses his surprise that she was allowed to come in the torture room, the place where she knows he inflicts suffering on people. The torturer replies that she's been taught that the enemies of the Cardassians deserve their fate. 

Picard replies this:  "When children learn to devalue others, they can devalue anyone, including their parents."  I think this is very true... but more than that, I think it touches on an important broader concept: If one group in society is devalued, any group can be, and all are lessened by it. 

Gay and lesbian people are one of those devalued groups, only now achieving some semblance of equality.  Another one?  People on the autism spectrum.  Or indeed, any person with a disability or mental illness.  Society values the healthy, and the attractive.  There's nothing attractive about a panic attack, and nothing healthy about an autoimmune disorder.  But neither of those things are the person's fault.  They simply are.  Just like people are born gay or straight, I was born autistic.  This isn't my fault, and I shouldn't be penalized for it.  But I am, and constantly. 

If my "normal" act isn't perfect, people avoid me.  Make excuses to leave.  I can't stand big parties for very long, because of the strain of dealing with so many unknown people.  I have to take extra care with my energy, because it's a very limited resource.  I need extra soundproofing in my walls so I can have a quiet place to go, free of external distractions, just so I can recuperate from work and people every day.  None of this is my fault, and ideally, I wouldn't have to pretend to be neurotypical.  I wouldn't have to wonder how I actually am and what I'm like when I'm not trying to bluff the world into thinking I'm just like them. 

One day, maybe, there'll be a civil rights case for autism, and other disabilities.  And that will be a cause I'll fight for, the same as I've raised my voice for equal marriage.  We are all less if one of us is made less.  Simply allowing segregation or inequality of any kind degrades our very humanity. 

So celebrate equal marriage with me.  It's one less glaring inequality that lessens us as human beings. 

LENS and Life, week of 6/16

We only did one site today... I'm not sure if that's because I complained about work so much, or because I've been so frustrated, or because we're tapering off the treatment.  

Update on the dietary issues: the doctor says I may have developed a sensitive intestinal tract as one of my body's ways of telling me I'm too stressed out.  I didn't have this problem as a kid, but apparently as one ages, these things happen.  If I recall correctly, my brother gets ill sometimes if he's too stressed out about something, so maybe there's some family link there.  Either way, the next step is to give my body a break.  I am now to avoid dairy and high fructose corn syrup for two days.

That's actually really difficult.  Most of my usual meals involve milk or cheese in some capacity.  Tonight's steak and potatoes and green beans will stay on the menu, so long as I avoid the butter, but I can't have nachos, or most of my pasta sauces, or any sugar-added item (this includes granola bars).  I went to the store after the visit today and went down the food aisles going, "Nope- corn syrup, nope- dairy, nope-dairy, nope... nope... nope..." 

I ended up with a loaf of multigrain bread, some trail mix I'll have to pick the M&Ms out of, vegetable broth, and a can of black beans.  I'm going to try to make something interesting from the broth, beans, brown rice, and the frozen veggies in my freezer, but I'm guessing I'm going to be rather bored, foodwise, for the next couple days.  Being unpleased foodwise isn't new, I guess, given that every time I've eaten in the last couple weeks I've ended up in the bathroom in major discomfort, but it's still frustrating.  I hope this works.

Found online: Autism and Aggression flowcart

https://www.gliffy.com/go/publish/image/7912037/L.png

A flowchart of reasonable simplicity for dealing with aggressive children on the autism spectrum.  Aggression can be a major issue with autism, especially (but definitely not limited to) nonverbal people on the spectrum.  There's a lot of frustration involved in being so different, especially if you recognize it but can't do anything about it.  There's a lot of frustration, mainly, in how other people treat you given that fact.

I highly recommend following your way down the entire chart, regardless of any YAYs.

Two things I wanted to note:

1. "Significant downtime, even if it looks like the person is doing nothing."

This immediately reminded me of a common gripe I hear from parents sometimes.  "My kid spends all their time on the computer doing nothing!"  Sometimes linked to, "Why don't they go play outside or something?"  This is a perennial pet peeve of mine.  There's a near-limitless number of things to do online, much of which is free.  There's scads of music from hundreds of genres.  There's online gathering places where you can meet and speak with thousands of people from countries you will probably never visit.  And yes, there are pictures of cute animals and videos of cats doing stupid things.  And y'know what?  All of those are valid relaxation activities.  Today's US is a very high stress one, and if your kid finds any of these things relaxing?  Don't disparage that.  Don't take that away from them.  Even if it's something like sitting in the corner staring at nothing.  Relaxation is immensely important.  We're not meant to live at such high stress levels, all the time.  Any relaxation your kid or adult on the spectrum can find is very important.  Think at least twice before you get negative about it.

2.  "Consider this.  Frustration from either not being able to succeed, never having anything challenging, or lack of autonomy causes stress for any human being"

I have a case of the first of those three options.  Also a case of high expectations, perhaps.  In my defense, I wasn't diagnosed until I was in my early 20s.  I'd assumed that someday, if I worked hard enough, people would accept that I was normal and stop treating me like an outsider.  I hadn't counted on a diagnosis that rendered me permanently unable to be normal.  Normal people have depression and anxiety, but they don't have autism.  At least not right now.

Autism makes everything challenging for me.  I got awkwarded out by every phone call I make, because often both sides talk over and through each other, and goodbyes aren't set, rote things with the same words every time, and the same closings to conversations every time.  They're as different as the people you're talking to.  And because of how I'm wired, I agonize over each of those calls for at least 15 seconds after they're done, unless I get distracted by that peculiar ADHD-like mentality work seems to be cultivating in me.  The phone rings, and I have to drop everything to answer it.  Someone walks up to the desk and I have to stop my paperwork or my phone call with insurances to address them.  Or I realize I'm working on a lower priority thing when a higher-priority thing is sitting there undone.  Or I lose my temper with being in the office and grab some recycling that needs to go to the dumpster.

I got a bit off topic.  I've complained about how difficult things can be.  You'll probably have to read more of it in the future, but hopefully I can also make it funny so you don't mind too much.

The main thing I like about this node in the flowchart is that it notes that frustration in these circumstances is very normal.  You don't have to be special to be frustrated here.  It often seems like once people have a diagnosis to pin on someone, everything that's weird or wrong or bad about them is automatically that diagnosis' fault.  That isn't always the case, especially in something so poorly understood as autism.  But if you let them, people will often grab that diagnosis, make a box of it, and shove you and your problems into it, where you may be relegated for all eternity.  It doesn't sit well with me.

People are far more complex than that.  All of them.  There's a sentence mentioned repeatedly by advocates and special ed teachers and everyone who knows better: "If you've met one person with autism, you've met one person with autism."  It's dizzying and confusing for people to deal with that sometimes, but if you think about it, treating a person with autism like any other person is common sense.  You might have to consider a few more things when you talk to them, like "do they understand sarcasm," and "is making jokes about developmental disabilities really a good idea right now?" but in the end, we're all people.  I'm fluent in sarcasm and I'll bet you anything there's at least one person on the autism spectrum who thinks jokes about disabilities are the funniest thing ever.  Maybe that person even collects them. 

LENS and Life, week of 6/9

Oh joy, it's a new week.  

My intestinal problems continue unabated.  While it's likely the probiotics I've been taking have re-established good bacteria in my gut, it can't seem to keep up with anything.  I'm contemplating paying a visit to my primary care provider-person.  I'm not sure how much he'd be able to help, but it'd let me start on the fabulous chain of specialists it'll probably take to get this figured out.

In the meantime, I'm having to call insurance companies at work.  They're very interested in not talking to me for as long as possible.  Getting a live person is nearly impossible with at least one company.  Needless to say, I am losing my battles with frustration.

I'm slowly getting accustomed to my tablet.  I still haven't gotten my music onto it, and I can't find a reading app worth paying money for (suggestions welcome).  But the operating system is finally starting to make sense.  I haven't replenished my stock of pointless games (see: Solitaire, Poker, Angry Birds, etc.) but I imagine I'll get around to that sooner or later.  I was more interested in re-acquiring my GPS and calendar.  Also there's only so much change, new, and novel I can handle in a day, and between work and time constraints I'm starting the day even more on empty than usual. 

What else...  Chris and I are trying to work out schedules.  He suddenly has a lot less free time but is still trying to play two D&D campaigns and run two more.  I can't imagine how he has the energy, but he does.  We're having to shuffle weekends around to pull it off, though.  There wasn't enough (read: any) together time in the previous schedule, and I finally realized that I really wasn't even slightly okay with that.  So instead of him being gone all weekend except to sleep and go to church, there'll be a few hours where we can just hang out or do something together.  Relationships are hard, but I guess it's progress. 

Y'know, it's weird.  In childhood life is broken up into all these little sections we call grades (or years, if you're in England), and you always have semesters and clear markers of how you're doing with progress reports and report cards.  All these little arbitrary divisions that let you know you're advancing and progressing and getting better.  Adult life?  Really has very few of those.  I guess you're supposed to make your own.  But people complain that life sort've becomes a blur after college, and soon you're 30, then 40, then 50, and it just keeps going.  I'm not sure how I'm supposed to make my own markers for progress.  There's little things like progress figuring stuff out with Chris, and things like starting LENS, and things like getting a new ____ (car, tablet, computer).  But nothing that seems to hand you a gold star and gives you a feeling that you've improved in some major way.  Mostly, life just seems to be handing me more things to do and more niggling details to cope with. 

Losing a (metaphorical) arm

So last weekend I had a rather unfortunate experience.  My tablet, which I bring everywhere with me, met its demise to a tile floor and a case design error.  Now, most people don't have a tablet, they have a smartphone or a laptop.  I find smartphones' screens too small, and I haven't had the money to spare for a laptop. I bought this tablet initially for my now-deceased chainmail business- turns out with a tablet and a little plugin, you can accept credit cards pretty much anywhere there's internet.

To help justify my purchase (which was expensive, even though it was refurbished and not the latest and greatest), I set about making my tablet into a Swiss Army Knife.  I migrated my eBook library onto it and read every night. I got myself apps for both my banks, another to track my sales in business, and still another to easily store all my business' data.  I installed a calendar app, several radio apps and a flashlight app. A meditation app, checklist app, food tracking app, and email apps. I customized the directions apps and set them to a cell phone's data plan so I would never be lost.  I even managed to set up a Google Voice number to act as a phone, after my dumbphone died and I realized I didn't really like having one anyway.

And that's just the stuff I used regularly.  I brought it everywhere, scribbling notes and doodles on it, asking the Internet any question I could think of (often hours for stores and restaurants), and reading book after book on it.  For four years.  It was always there, keeping me in tune with my life, providing my appointments and my music and the Internet.  Until it was gone. The case I'd bought to shield it from damage didn't have any protection from falling screen-first on tile floor.

The screen was completely shattered.  I took it to the maker's store, and they basically told me: "Yeah, that's so old we can't help you."  In addition, the design of the tablet was such that it really wasn't a DIY repair.  And the folks that could repair it, would charge about half the tablet's original cost. If not more. Not really feasible.

At the time of the break, after the initial crying fit, I really just felt numb. But I also had to try not to cry, because I was in a public place and while some people might understand crying over a broken tablet, most, I suspect, wouldn't.  But it was rather like I'd just lost an arm, or had part of my brain removed.  I no longer had my library, my calendar, my phone numbers, my directions, my music, and all the rest. Major parts of my life were suddenly inaccessible, and without them I was lost.

To his credit, Chris (my boyfriend) understood immediately.  I'm actually stealing his broken arm comparison for this entry. Other people, I feel, would have said something along the lines of, "oh, that's too bad. Do you really need another one?"  Chris started talking about getting it fixed or replaced, immediately.  When most of the shock wore off, I asked him about that. He remarked that it was obvious to him. I read off it every night. I brought it with me everywhere.  I used it multiple times a day, for all manner of things.  Obviously it was important to me.  And so he offered to help me replace it.

It took quite a bit of research, but eventually we got it narrowed down to two tablets: the iPad Air 2 or the Samsung Galaxy Tab S.  For philosophical reasons, I chose the Samsung tablet. (Apple does a lot of things well, but their philosophy does not promote tech-savviness. I think having the ability to tweak important parts of your electronics is essential to that.) With work stretching my hours for all they're worth, I'll be able to afford the replacement in a few weeks' time. But we got it as soon as possible, because I fortunately do not live paycheck to paycheck.

Now comes the rehabilitation. Because my previous tablet was so old and from a different maker, I have to manually migrate the music and books. It's a lengthy process.  The music alone is taking days. The books... I have yet to find a good reading app.  And while most of my apps were available for download on the new tablet, some important ones weren't.  So now I need to find replacements.  All in addition to learning to use the new interface.

I'm very fortunate that I can replace my tablet at all, of course.  I would probably be able to learn to live without all that, but with my memory not being as good as it used to be pre-LENS, I suspect my relationships would suffer.  Along with my sanity. 

LENS and life, week of 6/2

Work is continuously running long these days.   Not a pleasing trend in the slightest.  I can't tell if the LENS is doing anything, or if the fact that I'm not presently going completely bonkers with stress /is/ the LENS doing things.

This week I seem to be spending alternating days on the phone with people who called and left messages, and insurance companies.  Y'know, in between the people who are presently calling.  Have I mentioned how much I hate using the phone?

Still no sign of my counterpart at work.  I really doubt they'll be back now, which means this giant pile of paperwork I'm trying desperately to sort and make work is going to be all mine.  But no word of a replacement, because my counterpart hasn't officially left yet.  It's all just ducky.

Had a traumatic experience occur this last Friday, which you'll be able to read about this Friday.  The situation is being handled, but I think it'll be okay.  Stay tuned, I'll probably kvetch about it in future updates too.

I'm still playing with the concept of going mute every now and then.  Establishing a quiet zone in my mind, like how libraries are supposed to be silent or God help you, a librarian will swoop down and be angry with you.  Except maybe slightly less oppressive.  I suspect that kind of silence is something meditation might have supposed to have provided as well, but I guess I'm bad at sitting still and just concentrating on the present.  Unless the present is actively traumatizing me, anyway.

I think that's a common problem with this society, actually, where we're all so stressed and busy and looking forward or backward but never right now.

Going Mute: an experiment in regaining sanity

A couple days ago I got so worn out from stress and people that I stopped talking.  Literally just stopped.  I perplexed my poor boyfriend when I wouldn't comment on things, or answer complicated questions.  I was just so tired of words.  

The day started pretty normally, but work was exhausting.  Affter work I went home and tried to recoup my sanity, but then I had to go back to work for training.  Mostly training on autism.  The presenter did a good job, and the presentation was mostly on theories as to what causes autism, and the history of the workplace, and that sort of thing.  So less telling me what I already knew and could have lectured on, and more useful information from the clinical and research side of things.  But by the time it was done, I was exhausted within an inch of my remaining sanity.  

I got home and realized I needed to go shopping.  I made a list of what I needed, but Chris (my boyfriend) wanted to finish what he was doing before we went.  And that was the point that my brain just gave up.  I remembered the presenter at the lecture talking about how one of the problems with autism is language.  Like it's not as natural to people on the spectrum as it is to others.  And maybe that was why I just stopped talking.  I was silent all the way to the cheap restaurant we ate at.  Silent in the restaurant, except when giving my order.  The sound of my own voice surprised me, actually.  It was like I'd forgotten I could speak.  I hadn't really minded not speaking, except when it upset my boyfriend.  

A lot of what we say in society is fluff.  When I say please and thank you in situations, I try to mean them.  I'm not sure most people do, but even when you mean those pleasantries, they're still fluff to most people.  Expected and ignored unless they're not there at all.  Going mute meant I didn't have to think about most of that fluff.  

I spoke only when it was going to cause a problem not to.  My order at the restaurant.  When I bumped into someone.  That sort of thing.  

After an hour or so, I noticed the inside of my brain felt kind of quiet.  Peaceful, even.  That's unusual for me.  I'm not sure what to do with this knowledge.  It wasn't really the same effect as an anti-anxiety type thing.  Maybe more like what meditation is supposed to do.  I wouldn't know- I'm not very good at holding still and being quiet and in the moment.  Especially not for 10 minutes straight.  

LENS and life: week of 5/26

I spent most of the LENS time complaining about my guts.  The doctor listened sympathetically, then offered me a pretty simple solution: probiotics.  She theorized that I'd killed off most of the good bacteria in my gut with all that high fructose corn syrup, and the solution was to reintroduce scads of good stuff.  So I'm taking these little pills stuffed full of 5 kinds of good bacteria.  I'm trying to stay away from the delicious sugar, but sugar, as it turns out, is one of my coping mechanisms for stress.  That's probably why I could stand to lose a few pounds...

The stress is ramping up this week at my primary job.  There'll be an audit the week after next, and we're going to hammer out what needs to be done when, soon.  I anticipate much work.  Second only to my boss, who is going to be buried in work from now 'til kingdom come.  (God, I hope not.)  As far as I know we have three-ish audits.  At least one is internal, which means stress but not the end of the world if things aren't perfect.  Losing a certification in an external audit, on the other hand... 

Still no word from my counterpart at work.  Not sure she's going to come back at all, honestly.  That's frustrating, because she didn't make much effort to train me to do her job.  I get having bad feelings about the situation, but we did work together for awhile and I'd kind of hoped she thought more of me than to leave me dangling over a pit of hungry angry sharks (of work I don't know how to do). 

To be fair, I'm handling all the parts of my job that I know how to handle pretty well.  Not flawlessly, because I'm still human, but well enough so as not to excite comment.  At least in my hearing.  I suspect, to keep up with everything my counterpart was doing, I'm going to have to work late, a lot.  Given that I'm trying to ramp it up on my blog and such, this is really not good news.  Alas, poor sanity.  I'm going to try not to leave writing these posts 'til the day before they're "due," but that may have been a semi-habit in college.  It was less "the day before they're due" and more "the week before they're due once I realize how much work they're going to be," but you get the idea.


In other news, I've been keeping tabs on a few neat articles and stories passed to me by various friends.  Perhaps I'll post them here and there soon.  Things like descriptions of what depression is like, or flowcharts for improving an autistic person's environment, or just stories of people on the spectrum being awesome.  I don't really see myself as a news service, especially given that I despise reading the news.  Most news, or perhaps I should say "news," is a poor excuse for journalism.  Uncited sources, absurd claims, fearmongering, and the like.  It tends to make a truth-oriented body like myself rather ill.  So I get most of my news secondhand, from people with more resiliency or curiosity.  It works surprisingly well.  I'm certainly never going to be the first to know world events, but I don't remain behind the times too long.

Anyway, no apparent changes in my psyche due to LENS.  Due to the overwhelmingly stressful circumstances, I'm not actually sure if I'd be able to tell if there were good changes or not.  Alas.