Friday, July 29, 2016

"Oops, there went my life" or The Effects of Losing My Support Tablet

The dependence on technology is growing, for people everywhere.  This is particularly true for me, as it turns out.  I mentioned it previously, but my tablet, upon which I depend for quite a number of things, is once again broken.

I described a situation similar to this previously, about a year ago.  If you don't want to read the whole thing, basically: my tablet contains my library, calendar, phone, email, music, camera, pictures, GPS navigation, news...  All in one convenient device.  Which is now broken and unusable.  What I didn't describe back then is how it specifically effected my life, mood, and organization.  So I thought it might be useful for document that.  Needless to say, I will be complaining.  I hope it's useful complaining.

1. My Organizational Skills Have Gotten Even Worse

Flying crispy cheese on a popsicle stick.  I am immensely lucky these last couple weeks have been atypical and I haven't had lots of events to get to.  I can't even remember the normally scheduled events.  I have a chiropractor appointment in half an hour and I'm having to constantly remind myself of that fact or I will literally not make it there.  

Planning events with friends is out entirely.  Unless someone gets a message to me that they would like to see me right this instant, and I have the time available, it's not happening.  Not that I really feel like hanging out with other people right now anyway, but the fact that it really isn't even an option is kind of bad news for my status as a human being with a life.  

My organizational skills were already terrible.  In college, I was never late to appointments.  You could count on me to be there for meetups, assignments, classes, etc.  Since graduating and then not really doing well in formal jobs, my organizational skills have slipped.  I think I've accidentally stood one particular (thankfully patient and gracious) friend up three times in the last year.  This makes me feel like a terrible human being, and could have been avoided with better planning around my calendar. 

To try and prevent similar occurrences, I'd recently added notifications to my tablet so it'll make a noise to alert me well before I need to leave to meet friends or go to appointments.  Except now, obviously, my tablet doesn't work, so I'm back to praying I'll remember.  I'm down to clinging to my desktop computer, which also has my calendar on it.  If my desktop was to die, I'd be SOL and presumably never remember any appointments ever again.  

2. My Frustration Level is Very High and Isn't Dropping

I don't talk a lot about this, but I have a temper.  Apparently I inherited it from my dad's side, if the descriptions of my family members are to be believed.  There are several family members on that side that might be politely called "feisty."  Naturally that does not mean I'm not responsible for my actions, it just means I'm predisposed to be angry moreso than most folks.  

The way disabled people and black people are treated makes me angry.  The way the system props up the superrich and stomps down the poor when it's supposed to help the poor stop being poor, makes me angry.  The election, which is now between the Competent-Woman-of-the-Corrupted-System-Hillary and the Too-Many-Things-Wrong-to-List Trump makes me scared and angry.  

You get the idea.  A lot of things that are unjust in the world make me angry.  I think most "normal" people generally ignore stuff like that unless it's in their faces / relevant at the current moment.  I generally chew on stuff like that a lot longer than most folks, as far as I can tell.  

But it's not even weighty matters that are being a problem.  Every time I want to look up my appointments, or see where the nearest UPS is, or check the weather for the weekend, or read a book in my library in bed, and can't... I get frustrated.  Not near as frustrated as, say, people being unable to pull themselves out of poverty, or ISIS making Muslims' lives a living nightmare.  But a little frustrated.  Because I used to be able to look up that nugget of information and have it available at my fingertips.  I used to be able to walk out the door, confident that even though I've never been to a place, I would find it without much problem.  

These are, I think, fair things to be frustrated about.  Not a lot frustrated, but a little frustrated.  But then they build up.  So now I have big frustrations and a heaping pile of little frustrations.  And let me tell you, it is making me very short tempered.  So far I'm mostly keeping the worst aspects of high frustration in check- the desire to break things or hurt myself.  But it's hard, and it's exhausting.

3. My Mental and Physical Health is Declining

I mentioned already that I'm not really seeing friends much.  This is, by human standards, not a good thing.  We're a social species, by and large.  I'm a lot less social than your average human, but I still do better with a certain amount of Other People That Are Nice in my life.  That really hasn't been happening.  I think the last time I actually went out to do stuff with friends, in a group, was around the beginning of this month.  We can blame some of this on the passing of my grandmother, naturally, and other environmental and situational factors, but not all of it. I am not, as it happens, particularly interested in going to see my friends.  This is because my mood is very low and my anxiety is very high.  

Pretty much all of my friends, including my fiancee, are playing the game Pokemon GO.  The premise is that there are these fantastic monsters (Pokemon) that you can catch, tame, and be friends with.  You have to go out and find them, using your phone or tablet's data.  You can't play without that.  Along the way, you explore your area and stop at art installations, historical sites, and other places of note in order to pick up items to help you find and catch Pokemon.  I got to play and enjoy this game when I first went to Detroit for my grandmother's passing.  I was sick, and I went for a two mile walk despite that because I liked the game so much.  I literally prolonged my own illness to play the game. Twice.  

So now I can't play it because my tablet is broken.  There are literal thousands of people in my city that are playing, making events, bonding, meeting new people, having a great time, and I can't join them.  My fiancee, who initially resisted the game and its exercise focus, is now playing without me.  There are whole Facebook groups I'm following actively making plans, designing Tshirts, getting involved with their local pet shelters (play Pokemon GO and walk some dogs while you're at it!), and all sorts of other things... and I'm left out.  Because I can't play.  

Makes a person a mite alone and depressed.  

My anxiety is up.  Without my calendar within easy access and giving me reminders, I constantly worry about missing my appointments.  I stay closely tethered to my computer, which is now my only calendar, and my only phone.  This means I do not get exercise.  Exercise which would otherwise be burning off some of the energy I would use being anxious.  Never mind how important exercise is to a healthy human being. 

I mostly notice the anxiety in that I'm avoiding getting things done.  I could be hand writing addresses on envelopes for my wedding invitations, or writing more blog entries, or making food, or any number of other useful things.  But mostly I've been lying around, or playing computer games.  Which isn't helping at all with my depression.  

Also keeping me from wanting to be outside amongst other people, my sound sensitivity has flared up with a vengeance.  Some days are worse than others, but in the last few weeks, pretty much any sharp noise has been concentration-shattering at best, excruciatingly painful at worst.  And adult life is full of sharp and loud noises.  One of the cars around here, owned by a neighbor, has a squeaky belt.  Every time the car starts up, I wince as the belt shrieks for a few seconds.  If you add children (happy or otherwise), squeaky brakes, styrofoam, doors that need WD-40,  and other high pitched aspects of life, you wind up not wanting to leave your nice, quiet, safe house. 

I mentioned prolonging my illness already.  I usually don't have colds that last 3+ weeks, but this one seems to be.  Or it's bronchitis, I guess.  My LENS-doctor informs me that colds can last that long.  She says I'm probably fine so long as I continue to improve.  If my progress plateaus or worsens, I should get off my butt and go see my primary care practitioner.  I really don't want to do that, so I hope I finish getting better soon.  

Also in physical health, I am not eating well.  Normally I need a good balance of fruits, vegetables, whole grains, proteins, etc, to have an optimally-functioning mind and body.  Unfortunately, when things start to fall apart, I stop having the energy and motivation to cook and eat complex foods like that.  So my diet goes back to sugary and white-floury.  Which in turn reduces my energy and brain function, which leads to less energy... it's a lovely downward spiral.

Okay, So What Are You Doing About All This?

This would be a really depressing (and let's face it, not terribly useful) entry if I ended it here.  I mean, certainly, someday all of this will let up.  So I could.  But that kind of skips out on some of the important information, such as coping techniques other folks might be able to use or adapt to their own situations.  

First, regardless of how terrible I feel, I still have obligations.  This blog is one.  My doctor's appointments, chiropractic appointments, etc, are others.  I do not see these obligations as optional.  I put those on my calendar, which for me is basically saying I will go to those things or else.  So rather than staying inside all the time, I do leave.  I try to put appointments together so I have to leave less, but I'll go grocery shopping or drop off mail or whatever other errands I need to do.  These insure I don't lead an entirely isolated life. 

Second, while flexibility is a major factor in determining how well an autistic person survives in the world, routine is very comforting.  I am adhering to my routines as best I can, which somewhat includes those appointments mentioned above.  While I don't have set relaxation routines, there are certain webcomics, books, and music that are still available to me, albeit not as easily.  I'm making use of those to try to limit the badness of the situation. 

Third, I have the help of my fiancee.  His patience is limited, but he's a good man and he is trying to help me through this.  He's making efforts to make sure I feel loved and appreciated, and while my depression is undermining those efforts, the fact that he's still trying is not lost on me.  These things for him include driving me places without complaining (he hates driving.  Hates hates hates), giving me lots of hugs, and trying to do things together even when I'm not at all pleasant to be around. 

Fourth, even under all the pressure, I am still making a point of taking my supplements and trying to eat healthier.  Chris is helping somewhat, since if we follow schedule he cooks two days a week, and I cook another two.  These things together will help in making sure I don't end up at true rock bottom, eating only crap and losing all the fine progress I've made with fixing the vitamin deficiencies in my blood.

Fifth, despite absolutely hating using the phone, I have managed to get my tablet sent in to its maker for repairs.  Since the local shop was unable to fix it, the maker ought to be able to.  This was unfortunately not as simple as driving to a nearby location, as they have only five locations.  The closest of which was in New York City, I think.  So at least 9 hours' drive.  Into a place I would like to never ever drive in.  So I had to call them and arrange with several people who don't speak English as their first language to get a shipping label sent to me, put the tablet securely in a box with padding, and send it off via USP.  I have no idea how long it will take them to repair the device, but at this point, it is in the mail and I can track its status.  This restores a small modicum of control and hope to my life regarding the tablet, which let me tell you, is vastly preferable to being hopeless and powerless.

Sixth, the phrase, "Never put all your eggs in one basket," is highly applicable here.  I checked into the costs of adding a second device, such as a tablet or a phone, onto my plan.  They are... absurd.  Less, somewhat, than getting an entirely new phone, but absurd all the same.  That said, if your particular situation allows it, or you already have a special family plan and adding another device isn't an issue... it would be wise to have a backup device already available for around the house.  I'm using Chris' old iPad, but naturally I can't have most of my apps because my old device was Android and this is iOS.  It's like Mac and Windows, they're not friends and don't talk to each other.  I'm not entirely out of options; it seems I might be able to pull the SIM card (the thing that connects it to Verizon, the carrier) and put it in another device, like a cheap Android phone, and it might work.  If so, I merely need to find a suitable phone.  Let's hope. 

Lastly, the saying, "This too shall pass" is applicable.  I have already weathered various hard times in my life, and the knowledge that I got through them gives me hope that I will get through this too.  It may not be quick or easy, but nothing, good or bad, lasts forever.  I'll be okay. 

Tuesday, July 26, 2016

LENS and Life, week of 7/26/16

No sites yet at all, because as it turns out I'm all but incapable of remembering dates without my calendar.  Last week the doctor was still on vacation, so I turned up and chatted with the person at the desk for a few minutes and then turned myself right around and went home.

I can't decide whether to make good on my threat of going to the doctor if I'm still sick.  I'm still... kinda sick?  But really not.  Up 'til basically a couple days ago, my nose just wouldn't quite work properly.  It'd mostly work, then it'd run for a bit, then it'd work again.  The result being that I needed a tissue at random points for a very small amount of snot.  Which was really not worth the tissue.  In addition, I've been dry coughing.  But with less and less frequency as time goes by.  The major issue is that it's still going, and it's been something like three weeks.  That's a bit long for a cold.  My dad, whom I worry I got sick, apparently developed bronchitis.  So, uh.  That could be a thing.  I really hope not.

I saw my dad, along with many of my other relatives, this weekend.  It was nice to see my cousin and her husband (also my cousin, I guess.  By marrying my cousin, he effectively doubled my number of cousins.  Yay.  I should thank him for that, it'd probably amuse him.).  He's also a gamer, and a fun character at that.  I only got to meet him a few months ago, at the last funeral, despite that he and my cousin have been married for well over 5 years.

In any case, the members of that side of the family gathered for the funeral and for together time.  My nephew is growing, slowly but surely.  He's just over a year now, which means I've got maybe a year or two before he starts storing memories properly, such that they'll be accessible to him when he's grown up.  I still don't think I'm a very good aunt.  But I guess I get points with his parents for not being disappointed that he's a he.  Apparently one of my nephew's other uncles/aunts did that.  Probably partly in jest.  I hope.

The funeral was a pretty standard Episcopalian affair.  I think the pastor may have been ill, but he made a good effort and it didn't disrupt the service any.  My father saw fit to include a distinctly non-Episcopalian call to follow Christ, mid-family remembrances in the funeral.  He explained his rationale- that this is one of the few chances people may have to hear the message, and that it's very relevant here, since we, the believing family, need not think my grandmother's life is over, and that she is now gone forever and we'll never see her again.  Given that she was an avid and loving believer, we can pretty safely assume, if our beliefs are correct, that she is in heaven with God and her husband, and having a much nicer time than she was on Earth.  The rationale was good, the speech just made me uneasy.  I wasn't the intended audience anyway, though, so hopefully it did some good with those it was meant for.

I dunno.  I try to keep my beliefs out of this blog for the most part, but I probably shouldn't.  They're kind of part of who I am.  Maybe I should detail them in a post and refer back to it as necessary or if things change.  I suppose I'm also nervous about it because I don't entirely follow my church or my parents' beliefs, particularly on several rather important points.  I should probably get over myself, though.  None of us knows whether our theology is correct until we die, and it's probably fair to assume that everyone is going to be surprised on the last day.  My deviating from established theology isn't going to end the world.

I'll think on it.

In other news, my tablet is still broken.  The shop tried two parts to fix the screen, and they didn't work.  So while it makes noise for notifications of various things, it still shows me nothing.  I'm discouraged.  And still metaphorically armless.  I have to figure out what to do, though. The repair is expensive, and this is actually the second time this tablet has broken in this way.  While the Internet seems to think it's one of the more durable tablets on the market, my experience hasn't borne that out.

I am, needless to say, frustrated.  I've managed to make all my appointments so far, but a few of them were by the skin of my teeth.  I still can't play Pokemon GO, so I'm not exercising.  I'm missing my library, my music, my ability to make phone calls on the go, my mobile check-depositing app, my on-the-go access to the Internet...

I'm probably going to opt to shell out for the repair, but then I'm going to start scoping out replacements.  I should be able to back up the data, but I can only assume the dratted thing will break sooner or later, again.

Friday, July 22, 2016

Book Review: A Full Life With Autism

A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence by Chantal Sicile-Kira and Jeremy Sicile-Kira, with a foreword by Temple Grandin

Somewhat deceivingly named, this book by Chantal Sicile-Kira (the mother) and Jeremy Sicile-Kira (the autistic son) mainly covers the transition from high school to college to employment.  While this is a vastly important and under-covered subject in autism, it hardly spans the entire life of a person on the spectrum.  As I understand it, authors rarely get to choose the final title of their books, though.  I grabbed this book off the library shelf after a mixed reaction to the title.  However, the front cover, noting proudly Temple Grandin's foreword, assured me a little more of the book's contents. 

The book is a deceptively thin-looking paperback, but in reality contains over 200 pages of direct, thoughtful, helpful advice, options, and things to consider when dealing with subjects such as housing, education, relationships, supports/services, and even sex ed.  I found the lattermost somewhat discomfiting, but I imagine that is often the case.  I do agree with the authors' assessment, though: Squeamish as the topic may be, it is vastly important that it be discussed and taught in detail.  No matter how well or how poorly a person on the spectrum blends with larger society, some things aren't or can't be taught in school.

The contents of the book are divided into chapters, with Chantal giving the majority of the information in plain text, and notes, thoughts, and information from Jeremy in italicized font.  This was more or less in keeping with the philosophy of the authors, which was, as much as possible, to let the autistic person determine their own fate, make their own choices, and plan for the future.  This is immensely important, and both the authors and psychologists elsewhere stress that importance.  It's a major predictor to how fulfilled and happy any given person is, on and off the spectrum. 

That level of choice can be a tricky conundrum when the person in question requires 24 hour/day care, or has aggressive tendencies that can be a danger to everyone, or is a "runner"- ie: they tend run off in a randomly chosen direction at any given time.  While the authors obviously came at the problems from Jeremy's perspective first, they made great efforts to include other situations in their writing as well.  They made a point to include short but useful perspectives from other people in other situations on the spectrum.  So there were some thoughts applicable to me, a fairly well-blending autistic person, as well as the other ends of the spectrum. 

For reference, Jeremy himself requires assistance to communicate.  I didn't get the entire story from reading the book once, but it sounds like verbal communication is immensely difficult for him due to his body not responding properly or at all when his brain tells it to.  He uses several assisted communication devices, anything from a pad of paper to a LightWriter to a smart device to type or write what he wants to say.  But he can't always even use those, because again, body not responding properly to brain.  So he is certainly not another "almost neurotypical story" like myself.  Between his words and his mother's words, though, I gather that they think it doesn't matter how well or how poorly you blend, you are going to have challenges.  They pointedly remark that those autistics that blend better can even have it harder, because everyone automatically expects you to be neurotypical and your act is almost perfect, but then it's not and people draw away from you. 

Overall I think this is an excellent guidebook to the transition from high school to employment.  It is not an itemized set of directions, but rather a series of information and questions to ask yourself and your parents/child with autism.  At every step of the process, Chantal and Jeremy have useful things to say and guidance to offer.  Chantal is direct and to the point with her information, and Jeremy's voice comes across as plainspoken, but honest.  Some of their information is most relevant to California, where they live, but most of it is relevant nationwide (and at broadest form, worldwide).

If I have one gripe about this book, it's that it's not the most inclusive for the gender spectrum.  I identify as agender, and as such "they" is the most applicable pronoun.  This book defaults to he/she, mainly he.  They address that and other inclusivity issues in the introduction, and really, complaining about it is like complaining that the new car you received needs a car wash.  If the book gets a second edition, then perhaps they could have a section for LGBTQ+ issues and more inclusive wording, but frankly it's an oversight I'm willing to forgive.

Final word: definitely consult this book if you are transitioning or your child is transitioning.  It's chock-full of good information. 

Tuesday, July 19, 2016

LENS and Life, week of 7/19/16

No sites yet this week, because the doctor is still on vacation.  She'll be back tomorrow, so I'll get to go and do LENS then.  Today, though, I get to sulk about my computer game being down for six hours, while my tablet is broken so I can't play Pokemon GO. 

I did manage to stop by the doctor's office and grab some Vitamin D supplements, because with a broken tablet I'm certainly not going for 2 hour walks in 90 degree weather.  They're befuddling supplements.  They're the exact same size as the ones I was taking, but apparently have twice as much Vitamin D.  Go figure, I guess.  Anyway, I imagine my bloodstream levels are normalizing by now, but it won't hurt to keep up the good work.  I can't really know for sure without getting another  blood test. 

I'm... still sick.  It's definitely the tail end of the illness, but that tail end is making a nuisance of itself.  Still coughing crap out of my lungs.  If it hangs around for another week, I'll call the doctor, but right now it's still within the "two weeks" thing my grandfather joked about.  He said, regarding colds, that they'll last you two weeks, unless you take medicine.  Then they'll only last you 14 days. 

I did make it to Lansing, but I was a day late.  Instead, I languished in bed until a church event regarding gay marriage and homosexuality occurred, wherein I kinda felt like I made an idiot of myself because I cried at the microphone a lot when I spoke.  Perhaps it's a throwback to my childhood, where all emotions were bad and I was only succeeding if I could keep my cool, but I feel really stupid when I get emotional.  It's an inconvenience to me at best, and downright detrimental otherwise.  I mean, don't get me wrong, there are a lot of reasons to cry about the issue, such as people acquiring depression and anxiety over it, committing suicide because of the intolerance and cruelty they have to live with, people being thrown out of their parents' houses and subsequently becoming homeless...  But I try to be calm and support my opinions with facts, and I... mostly just kind of sat up there and cried about my friends and the fact that the Synod is terrible. 

But, uh, literally nobody else agreed with my assessment of that speech.  Granted a few of the folks had biases because they knew me, but several really didn't.  So, now I'm all confused and uneasy about that.  I guess to be fair to me, I was already pretty sick, upset, and tired, and highly frustrated with the whole situation, so maybe being emotional is understandable.  it just... makes me uneasy.  I guess because usually my head's pretty good at assessment, but it's failing something awful here.  People told me that the emotion was good, that it humanized the problem.  Made it more real.  I...I guess I'm not used to that.  If I'm going to be a decent speaker (and let's be real, if my tear ducts continue to act the way they have my entire life- reacting to any strong emotion with tears), I'm going to need to understand how and when sobbing at a microphone is appropriate.  And maybe I could learn, in the process, how to simultaneously talk and think about something that really upsets me without losing it.  But I've been trying to do that for years at this point...

Anyway, after the fiasco/success that was that event, I went home and went to bed early, because I had to be in Lansing at 8am and it's an hour drive.  I don't think waking up before 7 should be legal.  It's barbaric and should be treated as such.  But I did make it there ontime, and proceeded to survive the remainder of the board meeting.  I may have pointedly not taken cough syrup so it was obvious I was still sick.  But I tried not to cough while someone was speaking, too much. 

All was more or less quiet until Friday last week, when I managed to take out my keyboard and my beloved tablet in one fell swoop.  I was playing Pokemon GO at my desk, because you can sometimes catch Pokemon right outside your home, and I was slightly too vigorous in my wrist flick to toss a Pokeball.  So my full glass of water overturned onto my desk, which included my keyboard.  In the process of flailing about the water and the glass and my keyboard, I accidentally whacked my tablet to the floor, where it bounced... and promptly broke.  So y'know, yayyy...

So that's been in the shop for repairs.  It'll probably be fixed by the end of this week, but in the meantime I'm tethered to the apartment.  Chris has a spare tablet, but it doesn't have a data plan.  So I can sort've do the Pokemon part of Pokemon GO, but I definitely can't do the GO part because if I get out of reach of the wifi, I can't play. 

I guess it's not the most horrible timing ever, but it's still frustrating.  The game is currently having connectivity issues and one of the major features (a tracking system that helps you find the Pokemon) is broken.  But still, I could be out there walking and having fun catching Pokemon with Chris.  Instead, he's having to play alone, and not often at that.  In the meantime, a huge community has sprung up around the game.  Pokemon is seen as a kid's game, but the vast majority of the players of Pokemon GO are adults.  So they've been mapping the game, spooling out tons of content and events, and sharing all the information they come across.  It's really quite impressive. If I'm really lucky, I can rejoin the festivities sooner than Friday... 

Friday, July 15, 2016

Article: autism and genetics are surprisingly complicated

Between this and the study mentioned in NeuroTribes, linked here, one rather wonders how much can possibly be left to do, genetically, when studying autism.  But given that both studies call for more research, I guess it hasn't been sufficiently exhaustive.

If you don't have time to read the summaries of the three studies, in short: autism is likely caused in part by genetics, by over 100 different genes.  Previous research has only implicated a few dozen genes.  These studies looked at several thousand autistic people and their families/unaffected siblings.

This news, by the way, is unusual for any genetic disorder.  Usually to get a genetic disorder, you need a single coding mistake in a specific gene, and like a light switch being flicked on, you have that disorder.  Wikipedia has a table of genetic disorders that literally calls out the specific gene that is miscoded.

But apparently not so for autism.  It takes a lot of variations to get autism, and many of those variations are regularly found in normally-developing people.  I found it interesting that the researchers made the distinction between two categories: high IQ male cases, and low IQ male and all female cases.  At first glance, this reminds me of the philosophical clash between Kanner and Asperger for the definition of autism.  Silberman ends the book with a win for Asperger, but I wonder if the truth isn't a bit more complex than that, at least genetically.  That said, even if there does end up being a major difference, and the autism spectrum does turn out to be two different diagnoses, I'd much rather the Asperger's philosophy, ie: "this person is a person, and needs our help to communicate and reach their potential," rather than the end result of Kanner's philosophy, "this person is an empty shell, not truly a person, and we should give up on them."

I'm a little dubious of the researcher's claim that genetics might someday translate to immediately knowing what behavioral strategies to use with an autistic person.  It's... not impossible, but it kinda ignores personal agency and literally every environmental factor in a child's development.  At best, I could see knowing the genetic story might tell you whether certain foods are likely to set a child off, or perhaps that their brains don't process light or sound normally.  So you would have a better idea, if an autistic baby was screaming, of why the baby was upset.  I know at least one family that would really have appreciated that knowledge.

The article ends with a call for more research, like every scientific article even written.  It links to the Interactive Autism Network, which I guess is funding some autism research.  I have another to add here: SPARK.  I'm actually going to be participating in their research.  Seems they'll send you a kit to collect genetic material, which you can then send back to them for analysis.  It's cost-free for you.  They try to make a point of making their fine print stuff, like privacy policies, explanation of the study, etc, readable.  That's something I appreciate, because I feel like there's way too much fine print in my life as it is. 

Tuesday, July 12, 2016

LENS and Life, week of 7/12/16

No sites last week or this week, because I missed my appointment due to being in Detroit and now my doctor is on a much-needed vacation.  Go figure.  I should be fine for the next couple weeks, but I ran out of my vitamin D supplement, which worries me some.

But not a lot, because Pokemon GO finally came out and the result has been that I've gone for a walk for three days in a row.  Despite being lung-hackingly sick.  Surely I've gotten at least a little vitamin D with all that walking.

But seriously, I am pretty sick.  I was running a fever earlier and my nose, ears, and throat are misbehaving in the most inconvenient ways despite the medicine.  I'm supposed to be in Lansing later today for a meeting regarding state disability, but I might see if they'd rather I stay home.  I'm pretty sure this stuff is still contagious, and there's only so much handwashing and hand-sanitizering I can do.

The illness is kind of icing on the crap-cake, because I am now minus one grandma.  I now have exactly one living grandparent.  Also, I now have personal experience with the shade of flesh spoken of in books as "corpse-like."  I'm kind of on the fence about whether I'm okay with having that experience.  I was more or less onhand when my grandmother passed away, but the aide saw the signs that she was very close to death a mile away, which is one of the reasons everyone was gathered there.

I just realized I don't really have a lot to say on the matter that isn't either A) Too Much Information (some people are twitchy about death), B) possibly upsetting to my family, or C) both.  So, um, we can say it was an experience, and one I'm not over-interested in repeating.  I believe my remaining grandmother has stated she would like to die quickly and painlessly, preferably in her sleep, and after seeing my other grandma's route, which was a years-long slow deterioration of body and mind... I kinda can't disagree, even though I'm pretty sure the faster the death, the more painful the parting for those left behind.

In addition to the trip to Lansing, I'm also going to be attending the funeral in a weekend or two.  Normally you'd do the funeral service pretty shortly after the death of the person, but in this case the pastor is out of the country.  Apparently literally everyone vacations in July and August.  The pastor is gone, my doctor is gone, my uncle's doctor in Detroit is gone...

Clearly I missed the vacation-time memo, and now I have to take my vacation in November (ha.  Hahahaha.  Ha....  So many wedding preparations... T_T). 

Tuesday, July 5, 2016

LENS and Life, week of 7/5/16

Two sites this week, but we're basically caught up.  My doctor, who possesses observational skills I would nearly commit murder to have, thinks I'm reacting and acting about how I was prior to us taking a month off from the LENS.  So it only took a few weeks, and we theorize I was basically okay for about 3-4 weeks before things started deteriorating.  So she suggests we keep that in mind, as that might be our time frame for future visits.

The chiropractor takes the entire week off this week, but I've had four visits thus far, and less neck tension and pain after awhile.  Directly after the visits, I usually have higher amounts of cracking sounds in my neck and back, plus some aching or mild stabbing pains, but it eventually settles down.

It's probably just as well they're taking a break like that, because in approximately three hours, I need to be across the state in Detroit.  I'm going to be down to one grandma soon, it seems...  This has been a long time coming, so I'm not being destroyed by it, but it's wreaking havoc on my uncle and my only cousin is already up there.  So I'll be meeting my dad, and thereafter... I'm not really sure what happens.  And neither is anyone else, probably.

The entire of last weekend was a messy, unscheduled whirlwind, and it looks like this week will follow suit.  I'm packing clothes for four days with the intent to only stay the day, and the suspicion that four days' clothes might not be enough.

The weekend was at least nice.  It was, of course, the 4th of July weekend, so fireworks abounded (and they were loud and made me jump a lot).  But we also had some friends from the other side of the state stay here.  Their usual crash spot wasn't available, and since we like them well enough, we got the spare bedroom ready for them.  They're good people, but where I like to plan my weekends, effectively having start times and planned exit times for events, they kind of... wing stuff.  It's like watching a card game progress, except the card game's stakes are all the time in your day.  You can opt to not play, as I did the second day.  But then you might get stuck at home, alone, for 6+ hours.  Which is what happened when I bowed out of a D&D game because I was cramping, aching, tired, and miserable.

We did see fireworks this weekend, though.  Specifically, we caught the Grand Rapids show.  This entailed driving all the way downtown, then walking over to the correct section of the city.  The spot our friends picked out was right up near the river, and the fireworks basically covered about an 80 degree angle.  They were big, bright, and loud.  I always bring ear plugs with me when I go places, so this time I got to hand out like four pairs.  Now I need to buy more ear plugs.  I'm okay with that.  It's always nice to spare people suffering.

Beyond that, I'm feeling a little under the weather at present.  I haven't gotten enough sleep for the last three days, so that won't help, but usually not sleeping enough doesn't mess with my nose or throat.  So it's back to the zinc candy things, in case I'm getting sick, so they can hurry my immune system along with kicking whatever it is to the curb.  

I'm not sure this Friday will have an entry.  I'll do my best, but I'm leaving half my materials and my writing desk setup a couple hundred miles away when I drive to Detroit.  Preemptive apologies, if I miss it in the chaos. 

Friday, July 1, 2016

Reading NeuroTribes. part 4

This is the finale of my multipart series on the book NeuroTribes, by Steve Silberman.  (part 1, part 2, part 3)

We're now to the part of the book that deals with very recent history- my lifetime and just a bit earlier.  Andrew Wakefield and the vaccine controversy, Temple Grandin and her emergence as the first truly visible autistic adult, the development of the DSM (diagnostic) criteria for autism, Autism Speaks and ASAN, and beyond.

For some reason I find it astonishing to learn the disastrous (in my opinion) Wakefield (vaccines cause autism) study was published in 1998.  Silberman treats Wakefield a lot more politely than I would, given a similar chance to document the history of autism.  He does, of course, point out that the study was couched in deception, flatly disproven repeatedly, retracted from the journal in which it was published, and led to Wakefield himself being stripped of his medical license.  But surprisingly to me, given the depth of color given to other figures in autism history, Wakefield's personality isn't explored much.  I presume the man is still alive, and perhaps much-harried by controversy, so perhaps Silberman's treatment of him here is a kindness.  The vaccine controversy is a sore subject for a lot of people involved with the autism spectrum, regardless of where their beliefs lie.

I personally note here that the book describes what I'm told are termed "vaccine injuries."  For reference, that is absolutely a real thing that can happen with vaccines.  It's rare, but there have been sufficient cases that a federal tracking system was warranted.  So yes, vaccines absolutely can have bad effects, there can be bad lots of vaccine just like there are bad lots of vegetables or meat in the grocery store.  However, those incidents do not pertain to autism, because autism is an inborn disability.  I'm going to stop on the subject here, because I can't be polite about the vaccine controversy for very long and I think I've reached the end of my tether.

On a much happier note, Temple Grandin!  I'm pretty much always happy when people mention Temple Grandin, and indeed, no history of autism would be complete without her.  It seems every person has a slightly different take on her, from my doctor to a worker at my college, to Silberman here.  But the base facts all agree: she was one of the very first to self-identify and step forward.  She is very successful in her work as an industrial designer as well as her work as an autism advocate.  She has her PHD, and stands on her own two feet.  She has difficulties, but makes use of her differences to do things that other people can't.

It was with pleasure that I read the stories of Jim Sinclair and others I'd never heard of.  While I was still wondering why I was so different from everyone else, it seems the older people on the spectrum were linking together, developing the first communities around the diagnosis.  And just like me, getting tired of parents mourning the loss of their dreams of a "normal" child.  I missed all of that community, only receiving my diagnosis in my early 20s.  Surprisingly absent from mention (but not citation) is John Elder Robison.  But given the diverse cast of characters to this chapter of autism history, I suppose the author could really only mention so many.

The last pages of the book describe the neurodiversity movement, what it can offer, and how it's affected the lives of those on the spectrum.  The only fact that really surprised me here was the mention that at least one study of the genetics behind autism notes that the genes involved with autism are many, varied, and ancient.  Apparently autism is a very, very old part of humanity.  He cites the study from which this conclusion was drawn at the end, I'll have to check it out.

In conclusion, this is, as I first mentioned, a book well-worth reading.  I will warn you, it's dense.  The characters are many and varied.  And perhaps most jarring to me, the book jumps forward and backward in time.  This is less a failure of the writing and more the fact that history is seldom polite, discrete segments of philosophy.  Movements began, rose, and and warred with each other all at once.  People who lived at the same times but had vastly different perspectives interacted- or didn't- and had to be covered in different sections.

I was somewhat afraid, having gotten 3/4s of the way through this book, that the author was going to expound upon the neurotypical population being useless without "autistic intelligence" in this new world crafted in part by autistic hands, and being specific about autistic intelligence being only the "special interests" or the sometimes narrow focus people on the spectrum can exhibit.  But he doesn't do that, choosing instead to end the book on a quiet "the future is now" note.  This is fortunate, because while I want to make a difference in the world, I don't seem to have a narrow focus or "special interest" like many folks on the spectrum do.  It would sting a little to be left out of the new world Silberman envisions here.

All in all, I would call this book "an exploration of autism history" and hope fondly that you will read it.  I initially borrowed a copy from the library, but having finished it and seen its excellence for myself, I believe I'll buy it.

My last thought on the subject is this: if I ever do anything to merit a biographer, I can only hope someone of Silberman's quality will treat me with as much kindness as he treats the many people in NeuroTribes.