Friday, April 28, 2017

Book Review: Party Planning for Children and Teens on the Autism Spectrum

Party Planning for Children and Teens on the Autism Spectrum: How to Avoid Meltdowns and Have Fun!, by Kate E. Reynolds.

This book managed to annoy me right off the bat by starting off on a very negative note, first citing "Rain Man," and then saying that many people on the autism spectrum have low IQ scores without mentioning how limited IQ is, as a measure of intelligence.  For anyone that doesn't already know... IQ, or Intelligence Quotient, is much less a measure of a person's intelligence and much more a measure of their ability to learn in a standard school setting, using regular teaching methods.  One might summarize a high IQ score as "good book learning intelligence."

There are many kinds of intelligence, not the least of which is emotional intelligence.  Other kinds include street smarts/common sense, organizational ability, creative ability, and self-awareness.  Many of these are much more difficult to test on paper or in a controlled setting than book smarts, so they're often overlooked.  Which is unfortunate, because IQ is really only helpful in school.  After that, having a high IQ is pretty much just an ego booster and you need all those other kinds to succeed in life.  As such, it peeves me a great deal to see the author insisting that IQ is the division between so-called "high functioning" and "low functioning" people on the spectrum.

It also focuses very heavily on the negative aspects of autism, ie, our difficulties that should be addressed, without giving much thought to balancing all the negativity with positive things.  That's an understandable mentality as a parent, but it's brutal for the kid, always focusing on all your failures and weaknesses and inadequacies without ever mentioning the strengths we also have. 

But I shouldn't judge the book by its first chapter, probably...  (four hours later)  Nope I was right, it's pretty much like that all the way through.  Ugh.

I get it.  Really, I do.  You don't want your kid scaring off other kids with their oddnesses, because you want them to have friends and get as much social experience as possible.  You want us to have as normal of lives as possible.  So push, push, push against those weaknesses, keep them in mind at all times, coach your kid with strategies to address them.  Sure.

But y'know what happens if you only do that?  You get depressed, resentful kids.  You get low self-esteem, and the mentality that the greatest indicator of our success as people is how well we interact socially.  Does that seem smart to you?  To define yourself by your weaknesses and your failures?  It shouldn't.  You need to balance all that negativity with positivity.  Celebrate and embrace the child's special interests.  Tell them you love them regardless of how well they're doing.  Try to see things from their perspective.  Enough of us already suffer from depression, don't make it worse.

My ranting aside here... as a party planning book, this book is adequate.  It has lots of activity suggestions and commentary on the particular age ranges and developmental levels of autism.  I'm... not sure how accurate the latter things are, but it's not like I knew I had autism when I was those ages.

In any case, the suggestions seemed good, if overly focused on skill development rather than fun.  This book was written by a mother, and she's clearly consulted with a lot of other parents and probably professionals for creating this guidebook.

Read This Book If

You need to plan a party for a child or teen on the autism spectrum.  Really, that's the theme of the book, and that's pretty much the only reason I'd recommend it.  It brings nothing new, philosophically, to the table, and in fact has some very negative and inaccurate viewpoints in the introduction and sprinkled throughout.  But it does definitely fulfill its main purpose, so if you need a guide for that, here it is. 

Tuesday, April 25, 2017

Legwork and Life, week of 4/25/17

Well.  That was an exhausting week.  A good week, but I am definitely glad this week lacks scheduled events for the first half.  A bit of a reprieve built in is nice.

In rough chronological order...



Last Tuesday, instead of staying home and doing my usual chores/book reading/writing, I got up at 5:30am and drove myself to Lansing, which is about an hour's drive from where I live.  This was highly unpleasant, because I strongly dislike mornings and believe that having to be awake at any time before 9am is barbaric.

However, I was presenting at the Annual Developmental Disabilities Conference as a self-advocate, and I wasn't about to be late.  The registration fee for the conference was kindly covered by a partner organization to my advocacy board, so instead of presenting and then leaving, I was allowed to stick around and be a fish out of water for the whole day first day.

I'm being snarky about it, but I really did feel like a fish out of water, even though my apparent age and gender matched the "standard" for the conference.  You see, this conference was pretty much exclusively for healthcare professionals, specifically ones that serve the developmentally disabled population.  (That includes autism, but also cerebral palsy, Down Syndrome, and vision impairments.  It's kind of a diverse category.)  The type of people in that kind of work is generally female, and often late 20s to late middle aged.  So I more or less blended in, except perhaps for my mode of dress.  I opted for comfortable, since I'd be presenting, rather than business casual. 

I'm not sorry I opted for more comfortable clothes, given how utterly drained I was at the end.  It's always a tradeoff, because I have to pay attention to details like that and it causes anxiety when I don't fit in, but I really do much better stability-wise if I'm comfortable and not concerned with how my shoes rub at my feet, or how I can't walk quite right in pants that aren't designed to be as easy to move in as jeans.

Anyway, the conference seems to have been a success.  I handed out about 9 business cards to various professionals and presenters, and my part of the presentation went pretty well.  I don't think presenting is my very favoritist thing to do, especially on a subject I'm not super-comfortable with, but I did okay and it's not like a ton of people showed up anyway.  Of the several hundred who attended the conference, only six came to the presentation titled "The State of Self-Advocacy in Michigan" to listen to myself and two other self-advocates talk about Self Advocates of Michigan.

Backs are Persnickety Things


As my more seasoned readers are doubtless aware, back pain is a very frustrating, wearing condition.  It affects pretty much all gross (major) movement, so pretty much every time you shift in your chair, try to walk around, go to use the bathroom, etc.

I've had the chance to get acquainted with back pain recently, sadly, due to some changes in my sleeping position that I made on recommendation of my chiropractor.  I have since had much cause to regret my attempts to be healthier, as pretty much every change has been met with pain.

The original idea was to change the type of pillow I was using in order to have a better posture while sleeping.  This was, I thought, probably the most minor and least difficult change I could make to my life, since everything else requires being conscious and having some self-monitoring going.  I have no idea if my logic is sound, but it's absolutely astonishing how much difference a pillow makes.

I was going to give my chiropractor one more chance to get this sleep posture thing right, and then give up and just use my regular pillow.  I'm willing to put in effort to improve my health, but not if the apparent results involve debilitating pain for half my day, every day.  But when I went yesterday, the reaction was basically, "oh well, it was worth a try, switch back to your regular pillow."  So I guess I'd best think of some other ways to promote my neck and back health that aren't too demanding...

Grandma's Birthday

On a happier note, my grandmother has just turned 91.  Several of her children came out for the event, which included my mother, and we made a celebration of it.  Events included a play at my old college, a very fancy dinner, and a trip to the local botanical gardens/art museum.

Plays and such aren't usually my event of choice, but I've had decent luck with them in the past at this college.  My luck ran out this time.  This particular play was a rendition of Nicholas Nickelby, by Charles Dickens, and it was unfortunately a rather depressing affair.  I'm not super-familiar with that era and what reactions and tropes were expected, so I spent much of the play off-balance and trying to guess whether this was even going to have a tolerable ending, let alone a happy one.  I would call the eventual ending "almost tolerable" since I just kind of felt bad for everyone, including the "bad guy" of the play, by the end.  The actors were fantastic, however, and really brought the play to life, so at least there was that. 

Fortunately that was only the start of the weekend and celebration.  The next stop was to the Pokemon GO hotspot and botanical/sculpture park, Meijer Gardens.  Chris and I actually bought a membership there, as we'd been meaning to do that last year, and hadn't managed it before winter hit.  Much of the area and art is outside, and the vast majority of the Pokemon GO related stuff is as well, so it wasn't a really good winter thing.  Now that spring has returned, it's much more pleasant to wander the paths, examining the art pieces and enjoying the horticultural excellence worked into every corner of the place.

This particular trip was to try to catch the last blooming of a particular section of the garden.  Meijer Gardens contains a relatively new section fashioned after the gardens of Japan.  In Japanese culture, one of the events of the year is the blooming of the sakura, the cherry blossoms.  These are both beautiful and very, very fleeting.  The trees bloom for a couple weeks, and sometimes people will go out and sit beneath the trees whilst they're in bloom, contemplating their beauty and the ephemeral nature of life.  If you do that, you can watch the petals fall, one at a time.  So one section of the garden here had that species of cherry tree, and we took a trip through the area.  It was, as promised, gorgeous.  Have some pictures:

The last big event was a trip to a local Very Fancy steakhouse called the Chop House.  My uncle and aunt kindly footed the bill as a present to Grandma, or I would have been very anxious indeed at such a place.  Chris and I managed to forget the correct time for dinner, and so arrived about an hour early.  We spent the time chatting and walking downtown while playing Pokemon GO, so it wasn't a huge tragedy.  Once everyone else had arrived, we went in.  I was promptly entertained by the appearance of something I'd only theorized would eventually occur: electronic menus.  Specifically, menus that were tablets like the one I carry around.  They had a single usable app, which was the menu, and you could look through the various categories of foods and drinks, or tap on items to read more about them.

The other entertaining aspect was the presentation of the various foods.  Usually when someone says "presentation" in regard to food, they're referring to the aesthetically pleasing placement of food and decorations on the plate when it's served to you.  In this case, I am referring to how the serving staff gives you the food when it's ready.  The usual standard, in a restaurant, is to bring all the food out on a serving tray and give it to everyone one at a time.  If there's six, like there was at our table, you might get a friend to help serve and carry, because that's a lot of places to fit on one tray and the food is getting cold.

This restaurant did not believe in serving trays.  This restaurant decided that the most appropriate way to serve the food was to literally have a server for each plate.  Which was six people, if you recall.  And not only did they need six people, they had to coordinate putting the places down in synchronization, because Fancy Restaurant, I guess.  I think I mostly restrained my amusement from showing, which was good because it might've come off as mocking the restaurant and their efforts.  I did think it was utterly ridiculous, though.  Perhaps that's because I'm an uncultured plebeian?

Anyway, the food was good.  They had a venison offering, which was excellent because I usually can't find much to eat at steakhouses beyond a salad.  It's awkward being that one person that just gets a salad at a steakhouse, and I can pretty much assume it'd make my relatives feel bad about their choice of restaurant, which would have dampened the mood of the outing.  I don't really like to preach about my conditional vegetarianism, so it's sometimes forgotten. It ended up being an excellent meal with good company, and I don't think I embarrassed myself too much.

And now to relax a bit before the next exertion, which will be a trip to Connecticut for Chris' family.

Friday, April 21, 2017

Book Review: Uniquely Human

Uniquely Human: A Different Way of Seeing Autism, by Barry M. Prizant, PHD, with Tom Fields-Meyer.

In delightful contrast to the book about parties I read last week (and really, much general philosophy about autism) comes this book.

I should explain.  Autism, as a term, has nearly as many meanings as there are people that know about it.  But almost overwhelmingly, that meaning is negative.  "Autism" is often used to refer to all the weaknesses, disabilities, and flaws inherent in a person.  Digestive problems?  Must be the autism.  Social problems?  Must be the autism.  Short tempered?  Must be the autism.  Any positive traits are assumed to be part of the child despite the diagnosis.

The DSM has not, historically, helped in this regard.  As the starting point for most professionals' understandings of autism, it is undeniably negative.  Because a diagnosis generally requires serious problems in living and functioning, that's what the DSM focuses on.  And that negative focus then rubs off on any professionals using it.  Which in turn rubs off on parents and people with autism.

This book, then, is rather the opposite.  But not in a bad way.  I was watching for it, but the failing I see crop up in the neurodiversity movement - denying that autism is a disability - is only marginally represented here. Instead, the focus is on showing and empowering the humanity of autistic people.  Particularly the more poorly-blended members.

It was once (and still is, in places) insisted and believed that non-verbal autistic people are "damaged" people.  Not entirely human.  Unable to communicate, unable to have relationships, unable to participate in the human race.  Broken beyond hope of recovery.  This is false.  While this book neither denies nor ignores the difficulties inherent in being unable to communicate via words, it does vehemently insist that there are ways to communicate with such people, and be communicated to in return.  It insists that all behaviors have a purpose, and that very often that purpose is not "to be defiant," or "to get one's own way."

I've heard already, of course, that behaviors commonly called "stimming" such as hand-flapping, rocking, spinning, etc, serve to calm and relax an overstimulated person.  They look odd, naturally, but serve an important purpose.  This book, though, is full of stories of much more obvious and confusing behaviors, what purpose they served, and how the people could be understood and their personhood recognized.

And this book focuses on the so called "lower-functioning" section of the spectrum, with stories that are everything from surprising to heartwarming.  Included are some insights into our minds, like how emotional memory affects us, why some people on the spectrum insist on things being the same all the time, and why the world is so frightening to us.  The author also offers his basic framework for understanding and working with people on the autism spectrum.

The emotional memory section reminded me of how my memory for music sometimes works.  I assign meanings, feelings, people, and memories to some songs, often based on the content of the song itself.  So when I hear those songs, I'm immediately reminded of those things.  In one particular case, about half a year ago, I was exercising with a friend of mine at a gym.  Mid-conversation, the song "Paradise" by Coldplay popped onto the radio, and I lost the entire thread of conversation, stricken by accusatory connotations I see in the song.  I like Coldplay, as a rule, but that particular song suggests to me the philosophy of redefining happiness to whatever small things you have in reach, while life wrecks you, rather trying to improve your life and achieve your goals and dreams.  It's a sobering, and painful, philosophy to me  It's one I... mostly don't believe is a good idea, but when I hear this song I'm reminded of the philosophy, and wonder if I'm not deluding myself.

But perhaps what I found most striking about this book was how it addressed ABA (or Applied Behavioral Analysis).  I've... never seen someone deconstruct the philosophy behind ABA in a book like this.  On the whole, ABA is viewed as one of the most effective and helpful therapies for autistic children.  There are definitely problems with it, like the fact that someone has to decide what "normal" is, and then enforce it.  And the fact that in the process of quantifying a behavior in that mindset, you usually don't ask whether it's beneficial or serves a purpose.  Which is one of the author's points.  I won't detail the rest in hopes that you'll read the book itself.

Read This Book If

You're anyone that has dealings with autism, ever.  Particularly with nonverbal people, but even with better blended people on the spectrum, this book has answers you may need.  If you're frustrated with a child's behavior, if you just want to understand us better, if you're wondering why the kid at church or down the street does the stuff he does... read this book.  Seriously, go do it now. 

Tuesday, April 18, 2017

Legwork and Life, week of 4/18/17

I mentioned last week that I'd been having problems with back soreness, and that I'd pestered the chiropractor about it, since this was because of them.  On their recommendation, I'd changed my pillow setup such that my neck was only supported by a towel, and received awful lower back pain as my reward.  They'd suggested putting a pillow under my knees, because hamstrings, and last week I'd mentioned that I'd developed soreness in the middle of the back instead of the lower back.  I figured out what was going on!

I sleep in two positions over the night.  Mostly, I sleep on my back, but I also sleep on my side when my back gets to feeling too "flat."  It's after I shift over to sleeping on my side that the back pain happens.  Which, if I'm understanding the stuff online properly, is predictable.  I should be putting a pillow under my side if I'm going to sleep like that.  I'm not really sure how to deal with this situation, since I hardly want to plan on waking up entirely, reaching down next to the bed for a pillow, putting it under my side, and then trying to get back to sleep.  Every night. 

But at this point the relationship between side sleeping and sore back is clear.  I sleep lightly enough that I'm aware of every time I flip over, and I recognize that my back only hurts in the morning after I've turned on my side for a length of time.  I'm not really sure how to make that not an issue.  I started out as a front-sleeper, so I'm already treading on difficult terrain with trying to modify my sleep further.  For the possibility of less chiropractic work and fewer headaches, though, it should be worth it...

On a happier and much less work-intensive note, my glasses seem to be fine.  I appear to be hyper-sensitive to changes (and really, everything, let's be honest), so I'd complained and worried that my new glasses weren't going to work out despite that they were the same prescription.  I'd been having trouble melding both eyes' fields of vision together after about 20 feet.  It was disconcerting, to say the least, with my vision being unable to focus properly on signs with small print and such.  But they say to give it a couple days to adjust, and that was about what it took.  Now they're fine and I have no problems with using them.  I might even have problems if I tried putting on the old glasses!

Spring has definitely sprung around here.   It's warm and sunny outside, so yesterday I fixed up my bike so I could take it out to a safe-ish place.  I'm feeling the pressure to get out of the apartment moreso than I would normally, because my apartment building smells like mold.  Lots and lots of mold.  I chatted with the maintenance staff here, and they say there's crack in the foundation of this building somewhere, but they're not sure where so they can't fix it.  So basically, every time it rains heavily, I should expect the building to stink horribly for the next week or so. 

Sounds like a good reason to leave, right?  I can only hope, anyway... 

Friday, April 14, 2017

New Vocabulary

This entry is brought to you by a very thoughtless action on the part of someone I rubbed elbows with recently!  They don't know they inspired an hour long angry rant at my poor spouse, Chris, and they probably never will, but you all get to enjoy the beneficial results of that rant.  With the help of another friend, who is quite thoughtful in matters of semantics and societal justice, I discovered three new words, which I would like to share with you.

Some introduction / what is neurodiversity?

I am autistic, which means that I do not operate on the same mental and emotional wavelengths as most people.  My brain is literally wired differently, so I naturally think and act differently.  This has made my life difficult, and continues to do so, because most people expect others to think and act the way they themselves think and act.

This seems absurd, perhaps, to the casual reader.  After all, we have many differences, backgrounds, religions, cultural heritages, economic levels, etc.  And that's true, humans are a varied species.  But I'll also tell you that, at least in the United States, there are certain expectations that are shared across pretty much all those categories.

For instance, you look at someone when they're talking to you, but you don't stare, so you glance away every now and then.  The percentage is about 85% eye contact, 15% glancing down or to the side or at whatever you're talking about.  I know this percentage because I do not automatically want to look at a person when I'm talking to them.  Looking a person in the eye is uncomfortable, to the point where it can feel like getting hit in the head by a baseball bat.  Yet I am still expected to take that baseball bat to the head every time someone talks to me.  That's the rule, and it's one that everyone takes for granted: when someone's talking to you, you make eye contact without staring.

People on the autism spectrum, and people with other brain differences, are called neurodiverse, or neurodivergent.  The movement for acceptance of people like me is called neurodiversity.  In essence, it's basically calling for a "live and let live" mentality when it comes to people whose brains, and thus thoughts and actions, don't entirely match your own. 

A metaphor / the social contract

This movement is kind of like saying that people with iPhones and people with Android phones can live and work together, if we just put in the effort to accept each other.  We may not entirely "get" each other all the time, or even be able to do all of the same things on our phones, but our phones are still phones.  Apple's App Store has far fewer apps than the Google Play app store, but they tend to be less buggy and better put together.  However, Apple's iPhone won't let you play with most of its settings and really customize how the phone works, because Apple's motto of "it just works" doesn't work so well if everything isn't cookie-cutter.  Android, on the other hand, will let you stick your fingers into all the settings and customize practically everything, but if you break it, you're probably stuck trying to fix it yourself.  Some of the popular apps, like Twitter, Instagram, Facebook, etc, are for both types of phones, but sometimes an app is only for one phone or the other.  Without that app, the two phones don't have matching functionality, even if the other phone finds a similar app. 

Get the idea?  Now imagine the whole world is iPhones and you're an Android phone.  Depending on how much time, patience, resources, and effort you've put in and others have put in, you may have some of the popular apps that others have.  People on the autism spectrum must often teach themselves or be taught social skills, and once those rules are learned, can then blend reasonably well into neurotypical (normal) society.

As an autistic person who focused very intently on learning social rules and expectations, and then literally studied psychology to learn them even better, I qualify as "better blended."  Unless you know better or are a very astute observer, you would likely think me perfectly normal if you passed me in the store or had a 5 minute conversation with me.  Because I had supportive parents, enough observational skills, and presumably an aptitude of some kind, I learned through hard work what most people know intuitively.  Some autistic people learn these things via therapy, or books, or by lots and lots of experience.  But we don't automatically know most of it, because it's not innate for us.

When I'm not at home alone, I spend most of my time "acting neurotypical."  Because neurotypical people tend to expect certain things, like eye contact, I have to make a lot of efforts to make sure I provide those things.  If I don't, I tend to get labeled "rude" or "weird" and avoided or called out.  So I'm constantly needing to keep details like eye contact, facial expressions, small talk, and rules of politeness in mind when I go out.  If this sounds exhausting, that's because it absolutely is. 

Essentially, I have a bargain with the world at large: I act the way your arbitrary social rules expect me to, and you treat me like a human being.  I like being treated like a human being, and unfortunately this is, thus far, the only (mostly) predictable method I have of being treated like a human being.

But sometimes, I slip up in my "neurotypical act" or am exhausted and can't hold that act together, or I think it's safe to be a little more myself, and it bites me in the butt.

Then someone ticked me off, again

Sadly, when I slip up in my pretending to be neurotypical, the reaction I get is usually poor.  Essentially, I get a politer version of "how dare you be different than me?!"  I get weird looks.  I don't get invited to events.  I stop being counted as human.  It becomes okay to be rude to me, or to ignore me.  I get belittling comments, or polite suggestions that I change the way I am so I don't upset people.  

The kinds of things that can trigger those reactions are anything from not looking at a person when they're talking, to my choice of relaxational activities at the end of the day, to expressing an dissimilar opinion about a subject under discussion. 

So recently, this happened sort of thing happened.  Again.  I'm not perfect, I can't be what I'm not all the time.  And there was politely veiled criticism conveyed to me regarding my actions.  And unfortunately, it's not a situation I can shrug off and expect to never have happen again. Also, it blindsided me because the person in question was so quiet and polite about it that I had no idea I was upsetting them.  

Usually, I just get frustrated for awhile about these sorts of things, then sigh, shrug, and try to do better next time.  But occasionally the unfairness of the situation gets to me, and I get angry.  I started out with calling them a "petty, small-minded, egotistical, thoughtless, neurotypical jerk," and continued in that vein for a bit before realizing that "neurotypical" is really the wrong descriptor for the kind of mentality.  

Neurotypical, you see, refers only to the brain structure and development of a person, not what they choose to do with it.  All neurotypical people are not petty, small-minded, egotistical, thoughtless jerks, even when it comes to neurodiversity or other innate traits, like skin color.  There is a great plethora of examples of good, thoughtful, supportive neurotypical people on this very blog: many of the authors of the books I've reviewed here, for example.

Therefore I needed new words.  I needed a word for a mentality that actively opposes neurodiversity, and a word for people that merely expect neurodiverse people to act "normal" in their presence.  Finally, I needed a word for discriminationatory acts based on those mentalities.  

Therefore, meet the words...

Neurorestrictive: the belief that everyone's brains, thoughts, and behaviors should meet your expectations of those things, and the expectation that if they aren't, the neurodiverse person will restrict themselves to acting that way while in their presence.  This sort of person would invite a neurodiverse person to a party, but be upset if they needed some quiet time in a separate room, or needed to leave early, or didn't want to socialize the whole time.

Neuroconfining: the belief that neurodiverse people should not exist (and should therefore be cured / "corrected until they act normal" / confined away from "normal" people / etc.) and actively oppose any form of neurodiversity.  This sort of person person wouldn't invite a neurodiverse person to a party, and likely believes neurodiverse people shouldn't be invited to parties at all. 

Neurodiscrimination: discrimination against a person or group of people based on differences in their brains, thoughts, actions, and behaviors.  The act of assuming a neurodiverse person should act "normal" at parties, or choosing not to invite a neurodiverse person to a party because they're neurodiverse. 

The person that inspired the hour rant and this several hour post, therefore, committed neurodiscrimination against me by assuming I would do everything their way and being hurt, angry, and passive-aggressive when I didn't.  

While they have not, in the past, shown signs of being neurorestrictive, this action has clearly indicated that they are, at least in some situations.  I must keep a better eye on them and my actions around them or they'll avoid me or dislike me more in the future. I don't think they're neuroconfining by nature, since they have, in the past, listened to me talk about my life without making judgements like this.

And perhaps I'll see if I can't ease them, gently, into being a bit more open-minded about autism and more adult about conflicts in the future.  Y'know, so I don't have to spend four hours of an already busy day trying to invent words to properly express why I'm so livid.

Tuesday, April 11, 2017

Legwork and Life, week of 4/11/17

This week was an exercise in patience with back pain.  I'm still shy of 30 years old (chronologically), so it's unusual to have back pain that lingers for a week.  But that, unfortunately, is only if you don't do a foolish thing like adjusting your pillow setup, I guess.  I pestered the chiropractic place about it yesterday, since it was on their advice that I did this change to a rolled up towel under the neck, and then added the towel under the lower back since it hurt so much.  They told me that I should put a pillow under my knees instead of under my lower back  (because your hamstrings are connected to your lower back, basically).  So, having made that change for one night, I now have a stiff middle of my back instead of a really stiff lower back.  Progress?  No idea!  Stay tuned, we'll see if it goes away after a few nights or if it gets worse.

I did get to complain about my back problems to somebody this week besides Chris and you, my gentle readers.  Though, like most pets, it's debatable how much he actually understood and how much he was merely humoring the person that fed him.  This week, I took care of a parrotlet for a couple friends of mine.

This is not him, but it's pretty close in color

It was a pretty short stint this time, just a couple days.  I've done this before, though, so other than needing to cook a birdie-omelet (egg, corn, peas, green peppers, no seasonings) to go with his veggies and fruit, it was basically just "toss stuff in bowl and remember to keep company."  Parrotlets are very social critters, so things like sitting with him while he ate, keeping music or podcasts on, and chatting at him every now and then were essential.  But he was pretty calm and chill this visit, only occasionally getting excited (and thus noisy) about understandable things.  Which was nice, because I was feeling extra high-strung.  I think he was glad to be back with his moms, though, even tired as they were from the redeye flight they took home. 

In other news, winter seems to have breathed its last breath for this season, with a light covering of snow and some sleet a few days ago.  It's now 75 degrees outside.  It'll get colder again soon, but it seems like, for now, the cold weather is behind us.  This is probably just as well, because there are lots of Pokemon to be found in Pokemon GO and being cold and tramping through snow makes that a miserable endeavor.  Besides the Twitter account that tracks where things are in Grand Rapids, I've also located an online map of sorts.  Sometimes parks or other woodsy places are specifically inhabited by a particular Pokemon, so if you go there, you can definitely find one (sometimes a dozen or more) if you stick around for an hour.  So for example, about 5 minutes' drive away from our apartment, there's a park that spawns one of Chris' favorites, Kabuto.  So naturally we went there for a half hour or so and snagged a few.  It was nice to get outside and walk around.  Makes me wish it was a mite easier to get my bike outside and that the bike didn't require maintenance.

 Lastly, this happened:

Yes, that is a lava lamp, just like the 70s trendy decorative item.  I always kind of wanted one, but it never quite occurred to me that I could simply buy one once I was an adult.  Priorities, I guess.  Lots of other things to buy, like food, rent payments, electric bills, etc.  But I happened to mention it in passing near Chris, so he bought me one for this month's monthaversary.  (For the confused, we have a little mini-celebration each month of our wedding/dating day: mostly a small present, a meal out, or doing something extra nice for each other).

I could have, I suppose, settled for an app version of a lava lamp, as there are at least a dozen in the app store.  But now I don't have to, I guess.  It's mildly relaxing to stare at the goop inside the tube, though I can't quite predict the physics of the goop yet.  It seems very dependent on the temperature in the room and how long the lamp has been on.  And also possibly whether my leg is doing the rapid twitching thing which shakes my shelves and desk a bit.

Chris sometimes talks about building our own house, if we have the money someday, instead of renovating whatever house we can manage to find.  Specifically mostly because we would both benefit from having at least one soundproofed room, and it's easier to build for soundproofing than it is to renovate for it.  I think if that happens, and we have a soundproofed room for relaxation, that room is going to have at least two blue lava lamps in it.  Maybe three, so I can set them up side by side and have a nice non-accusatory section of the wall to stare blankly at. 

Friday, April 7, 2017

Book Review: How Can I Talk if My Lips Don't Move?

How Can I Talk if My Lips Don't Move?: Inside My Autistic Mind, by Tito Rajarshi Mukhopadhyay

Many of the books written by people on the autism spectrum come from a specific category of autism, which is the same one I'm from: the so called "high functioning" or in my preference, "better blended," section of the spectrum.  The people who, while definitely different than others, can still speak, write, and get along in this world without requiring intensive supports and services.  That isn't to say my life is easy, because it is not, thank you.  But I don't, as a rule, require a notepad and paper to communicate with other people, and or need watching to make sure I don't wander away, or constantly need a "translator" or helper to facilitate my existence in the world.

The vast majority of the people on the spectrum that do need those things... don't write books.  This person, obviously, does.  So right off, there's a good reason to read this book.  This author has experiences as an autistic person that I don't, and they're very important to understanding all aspects of the autism spectrum.

That said, this book is very different than my usual fare in other ways besides this.  Mr. Mukhopadhyay has the soul of a poet, and he writes in poetry and finely worked prose.  I'm afraid that poetry and I never really saw eye to eye, and so much of his genius is lost on me.  But I do recognize it for what it is, and I highly recommend anyone with an appreciation for poetry read this book.

But enough digressions.  On to the actual content of the book!  This is a collection of stories about the author's life and growing up, written in first person.  It's particularly interesting reading because, in addition to what I've named above, Mr. Mukhopadhyay is from India, and spent part of his life there and another part in the United States.  There are, as such, small glimpses into what life is like in India, which I found fascinating.

Each of these stories can be anywhere from a single page to a dozen pages long, and is sometimes interspersed with poems or poetry bits.  I'm afraid the stories aren't perfectly chronologically ordered, which I found confusing, but the author does make efforts to inform the reader what age he was at the time.  So it's not like the stories skip from being 3 to being 12, and then go back to being 6.  It's more like a clump of stories falls in the 4-7 age range, and may skip around in that age range a bit.

I've stressed that Mr. Mukhopadhyay and I have had very different lives.  This is true, but I did still have moments of recognition and familiarity with some things he talks about.  Like me, he has trouble with faces and person recognition.  I was also surprised (and pleased) to recognize that, if I'm reading it correctly, he also built himself a mental framework by which to understand the world.  I talk about turning my brain into a prediction engine, so I can understand and work with people and the world in general.  This author did the same, but his process was much, much more effortful.  Where I was able to quickly generalize what a book or a door looks like, and thereafter ignore that information until it was relevant, it seems the author had to take a lot of time to reach that point.  He talks about learning each doorway and the contents of a room, having to take minutes on each object in order to familiarize himself with it.

As he aged, he had to do this less and less, it seems.  Which holds true for me as well, in patterns of people and life situations.  I've been to enough stores, for instance, to know the basics of how one shops, and that I can usually ask for help from someone who works there and not seem out of place.  That holds true for cafes, for clothes stores, for electronics stores, and book stores.  As such, I usually don't become anxious much while I'm shopping, because people usually hold to the same behavior patterns.  (The Apple Store is an exception, which is one of the reasons I don't go there much.  I always feel like I'm being watched there.)

Read This Book If

You're anyone.  Seriously.  At just over 200 pages (but large text), you may want to take this book in segments, but its poetry and value should not be missed.  As an autistic person affected very heavily by the diagnosis, Mr. Mukhopadhyay has a very unique and highly valuable viewpoint to share.  His soul is an artist's, and anyone wanting to understand the facets of autism should consider this mandatory reading. 

Tuesday, April 4, 2017

Legwork and Life, week of 4/4/17

For anyone interested, I'm down to once every two weeks for both LENS and for chiropractic work now.  They're on opposing weeks, and other than my incredible new inability to sleep more than 7 hours, it seems to be an okay change.  I'm trying to see if I can improve my posture, computer screen angle, and sleeping position so as to minimize ill effects.  So far, the results have been, um... interesting.

So one of the tips I'd gotten from the chiropractor was to change my pillow.  Instead of a standard pillow of any firmness whatsoever, I was told to roll up a towel and use that as a neck support, and have that be it.  Somewhat dubiously, I did so, then wrapped the rolled towel in a pillowcase.  I woke up the next morning with an angry lower back! 

It's weird, though.  I can't tell if my lower back is hurting, precisely, or merely being exercised in a fashion it is unused to and thus unhappy about.  What is definitely for sure, though, is that it is unpleasant.  I've done this three nights in a row, and I have decided that it is definitely not good and not improving.  The damage, or strain, or whatever, doesn't last all day.  Just a few hours.  But that may be more due to my (relative) youth than anything else. 

Tonight I'm going to try a thinner towel, such that it just barely supports my neck.  I read that was optimal on the Internet.  It's worth a try, anyway.  If it still doesn't work out, I'll try a pillow under my lower back also.  And if that doesn't work, I'll go in next week and complain up a storm and they'll tell me that I'm either doing something wrong or that I should just have a normal pillow.  Or something.  I was really hoping to try to take better care of my spine, since I was chronically terrible to it for most of my childhood.  I slouched a lot, slept on my front with my head twisted to one side, and various other very bad things to do to your spine. 

On a happier note, last weekend I got to go to a movie with some friends.  It was, unfortunately, not a good movie, but it was fun to see it with them and we went out to Denny's afterwards and chatted (and complained about the movie, if we're being honest). 

Chris and I also went chasing some rare Pokemon in Pokemon GO.  We recently found a Twitter account that tracks spawns of rarer Pokemon, so we've been slowly filling out our Pokedex (Pokemon encyclopedia) together.  This often involves hopping in the car and driving across Grand Rapids, rather than simply walking somewhere, because unfortunately rarer stuff doesn't spawn all that often.  This weekend I'm planning to meet a friend at a park that spawns a rare Pokemon so we can hang out, I can play, and we can walk around a bit.  I'll probably spring for hot drinks afterwards, though, it's going to be a mite chilly. 

I have a new distraction!  At a very inopportune time, unfortunately, but what can you do.  When I was much younger, I played an old game called Odyssey: the Legend of Nemesis.  It was an old top-down turn based RPG.  What made it unusual was how much detail was poured into the game.  References to 60s and 70s music, philosophical ideas made real, and at the end, a serious moral question and multiple endings depending on what you chose.  That was... almost unprecedented at the time, and while most of the references went right over my head, I still enjoyed the game a lot, particularly once I got the hang of how to play it.  The musical soundtrack, which is all classical piano music, got stuck in my head. 

As such, it's been a lingering thought of mine, that one day I might play the game again, and perhaps replicate the soundtrack.  With some help from an acquaintance with a talent for that sort of thing, I am once again able to play the game.  But the soundtrack eluded me.  I tried going through various performers, looking for renditions similar to the recordings used for the game.  But it simply wasn't quite right, and that nagged at me. 

Then one morning I woke up and remembered that not only did I have a working emulator set up, but also there are free programs online that will record audio directly from a program.  In short, as long as I was very patient, I could have the soundtrack that so plagued me.  So that's what I've been working on, when I'm not too busy doing work for the Self Advocates of Michigan, managing my own neuroses, and doing errands and housekeeping details.  Perhaps I'll post a link when I've got it completed.  It's somewhat relevant to Project Fun, anyway, since I do very much enjoy that soundtrack.