Friday, June 30, 2017

Book Review: Take Control of Asperger's Syndrome

Take Control of Asperger's Syndrome: The Official Strategy Guide for Teens With Asperger's Syndrome and Nonverbal Learning Disorder, by Janet Price and Jennifer Engel Fisher.

In an effort to cater to its audience, this self-help book is modeled on the concept of video game strategy guides.

The cover kind of manages the resemblance, and so does the "Contents" page that lists the chapters and the contents, but there is where the similarity ends.  The actual meat and bones of the book is not organized in any sort of reasonable "game-ify your life" fashion, sans the very last chapter.  Instead, it reads similarly to most other books on the subject, including the ever-tiresome "What is Autism" section.  I'll admit, I haven't been a teenager for an entire decade, but I found it difficult to expect the superficialness of the format to appeal to that demographic.  I defer to any teenagers that care to offer an opinion, however.

A good thing going for this book is that it's very positive.  It acknowledges the challenges that autism (or Asperger's Syndrome or NLD) presents, but doesn't guilt you about it or pity you.  Instead, it preaches and teaches self-advocacy and some of the tenets of neurodiversity.  This is admirable.  I do think the book falls into one of the common pitfalls of such books: focusing very hard on making up for weaknesses, and paying the bare minimum attention to the person's strengths.  The book does try to teach you some strengths: self-advocacy and the ability to tell people what you need and how you work is important.

A humorous (to me) point of the book was its assistive technology section.  This book was published in 2010, nine years after iPods became a thing, and... I don't know, at least five years after almost everyone younger than 20 started having cell phones.  This book... recommends technology like address books, timers, spell checkers... in separate devices.  I actually had one of the devices it recommends, a Spelling Ace, back in middle school (so, early 2000s).  It was a handheld device, like a graphing calculator, except all it did was correct spelling, suggest synonyms, and let you play simple word games.  Its entire functionality can be replicated with a smart phone and approximately two minutes on the app store.  The same goes for several other specific recommendations, including the various speech-to-text and text-to-speech programs.  Several of the recommended programs have, in fact, made the transition right onto smartphones.

My amusement aside, the recommended technology is useful.  The authors weren't off base in suggesting the categories, just the specific incarnations of those categories.  I've already mentioned the spell-checker and speech-to-text sections... but timers, calendars/planners, address books, and eBook readers are all excellently helpful tools.  And all, of course, can be found on a properly outfitted smartphone...  Perhaps it's no surprise that my generation and the newest generation are so attached to our phones.

In addition to the Assistive Technology (AT) recommendations, the book also offered intelligent advice for better organization and easier sensory experiences.  It also had a section for getting and maintaining friendships, which was review for me but would probably have been helpful in my early teens if I'd had a more normal childhood.  The section on hygiene just annoyed me, but that's probably leftover prickly feelings from my own middle school experience.  I still think people are too dependent on their eyes and others' appearances to give them information about people, and that biases them against people on the autism spectrum.  Comfy clothes that don't make the senses scream are not, after all, often the most fashionable ones.  Brushing one's teeth can be intensely unpleasant, never mind flossing.  Hair care can be another difficult sensory experience.

Read This Book If

You're on the spectrum or have NLD, and don't mind sifting through the metaphorical chaff for the grain.  This book does have useful information, but I found it somewhat annoying to read.  It's geared towards teenagers, and the specific recommendations are perhaps more appropriate to the 90s and early 00s than present day.  That said, it does have useful general recommendations.  Those flexible enough to adapt the strategies and specifics, rather than take them literally, might do well with this book. 

Wednesday, June 28, 2017

Reading the Research: Autism and Eye Contact

Welcome to a new section of the blog, which I've tentatively titled "Reading the Research."  Due to my work with the Self Advocates of Michigan, I'm having to keep more abreast of the latest in scientific advances, and several things have caught my eye lately.  So this will be a section where I link you to a summary of a recent scientific paper, then discuss why it caught my eye and how the article's topic applies to my life on the autism spectrum.

Today's article has to do with eye contact:

I've mentioned before that I find eye contact difficult, and that I had to learn how much to look at people (about 85%) and how much to look away (about 15%).  I think I've even mentioned that looking someone in the eye is kind of like getting hit upside the head with a baseball bat.  The more familiar the person, the less hard I get hit with the bat, but on the whole it's still an unpleasant experience, made very familiar by societal expectations.  After all, if the person isn't looking at you, it seems to most people like they aren't paying attention.

The article talks about lack of eye contact being due to overstimulation like it's shocking news or something, which makes me wonder if they talked to any of the people they did their brain scans on...  but anyway, they measured brain activation in autistic and neurotypical people using fMRI scans.  They found, to my complete lack of surprise, that having to look at someone's eyes "overactivates" a section of the autistic brain, causing unpleasantness.  The researchers had the bright idea of using difficult types of emotions for the faces, and so they also found that it wasn't simply fearful eyes that were unpleasant for autistic people, it was any eyes.  Happy, angry, neutral, or fearful, it all messed with the autistic participants.

In truth, I've never tried to scientifically evaluate how poorly I react to faces and eyes, so much as simply tried to live with it.  But it's nice to have science to back up my unpleasant experience. 

Tuesday, June 27, 2017

Legwork and Life, week of 6/27/17

I mentioned last week that I cut my hair, but didn't give you a picture because it wasn't blue yet.  I can't seem to get a decent picture to save my life, but here you go:

The color's hard to see in the picture, but it's mostly blue with a bit of purple, and very, very dark.  I'm hoping it'll lighten up a bit as it wears and gets washed and such.  But if it doesn't, I can always have the student try a different dye blend, I guess.  In case you were unfamiliar, that is a lot of hair gone.   Here's a small picture of most of the shorn hair...

I've been surprised by the reactions I've gotten to the change, to be honest.  I think my parents' was the most negative, which is to say they seemed more bewildered than supportive.  They're good people, though, they'll adjust.  Everyone else, including my spouse, my chiropractor, and several older people at church, reacted positively.  I know in this situation that's... basically the only polite thing to do, but at least to my eyes, the compliments and smiles seemed genuine.  I'm autistic, though, and automatically bad at people, so maybe I'm just seeing what I faintly hoped but didn't really expect to see. 

In less cheery news, I'm about out of patience with my Self Advocates of Michigan responsibilities.  I think I've mentioned being grumpy about this before, but one of my committee members basically can't seem to do anything or take any kind of responsibility without excessive oversight.  Since we on this board are all over the age of 18, and I didn't sign up to be someone's mother, I'm intensely frustrated and pretty much ready to leave the board.  I'm giving the DD Council's support personnel a month to straighten this out, and then I'm done.  They're lovely people, and I mostly don't have issues working with the rest of the board, but I flatly, utterly, refuse to do one iota more than is reasonable.  I'm already juggling my own life, which is still challenging all by itself.  I'm not going to pour my energy into a project that wastes it.

I've been listening to a lot of podcasts lately in an effort to cheer up in light of the Senate's utter failure at providing healthcare for its constituants.  I've called both my Senators, but they're both Democrats and both already said they're not going to support the bill.  Short of bankrupting myself to go to Washington DC and join the "die in", I kind of feel helpless and powerless to stop this cruel and destructive oligarchic monstrosity.

The podcasts have given me practice in understanding how my brain processes words.  Podcasts, of course, are like radio talk shows.  So there's often someone talking while I'm listening, and while I'm listening, I'm also trying to do other things.  I've mentioned before that words have a priority lane in my brain.  If someone's talking, I probably can't focus on anything else that includes words.  Exceptions are muscle memory, so I can walk and listen, or exercise and listen, or play a computer game and listen.  But I'm presently trying to listen to a podcast and write this entry, and... it's working, but... not well.  I presume this is a skill I could work on.

The medical gatorade stuff from last entry continues to work.  I'm fiddling with proper dilution rates at present.  At first, I'd just been trying 32 ounces of water with the powder, and that didn't seem to be enough water.  I'd supplement with regular water, but then I'd just be going to the bathroom a bunch again.  A couple days ago I tried mixing it into 64 ounces of water, but that seems like it was too much water.  I spent a good period of time using the bathroom, at least by the end.  Today I'm trying 48 ounces, evenly mixed.  We'll see how that goes.  Regardless, I've definitely noticed an improvement in my hydration.  Yay.

Friday, June 23, 2017

Book Review: Life Will Get Better

Life Will Get Better: Simple Solutions for Parents of Children with Attention, Anxiety, Mood, and Behavior Challenges, by Nicole Beurkens, PhD.

Full disclosure time!  This book was written by my LENS-doctor, whose guidance has been invaluable in my efforts to become a healthier person and a better advocate.  This information is important so you know my bias, but also to understanding this review.  I'll be brief in some sections due to the fact that they are old news to me.

So as the title may clue you in, this book is not specifically about autism.  It's a general strategy guide to raising a special needs kid and keeping your sanity at the same time.  There are two reasons for that.  First, many of the strategies that work with autism also work with ADHD and other diagnoses, because the criteria that define those conditions are... rather overly broad.  Which leads to reason two, this doctor doesn't believe diagnoses are terribly valuable as a source of information, because she has a better source: the kids themselves, and their parents. 

This is, in fact, a facet of her philosophy in general, which I found so charming I'll just quote it to you from the book rather than paraphrase.  "My philosophy is that first and foremost these are children-- they are not symptoms, problems or diagnoses." Basically, Dr. Beurkens believes in personalized care: finding out what challenges each person has, and trying her best to help with them by putting her knowledge base at their fingertips.

Her specific recommendations are fivefold: nutrition, sleep, movement, connection, and cognition.  Or, basically: what you're eating, how you're sleeping, how much you're moving and exercising, how your interpersonal relationships are, and what you're thinking. Don't be fooled, this is not another "just eat better food and exercise more and you'll be fine!" leaflet.  The doctor has concrete suggestions for supplementation (as some people on the spectrum/with developmental disabilities don't absorb nutrients very well), and she also doesn't limit "movement" to "exercise."  Instead, she talks about ways to move more around the house, and to include the autistic person in the family's activities. 

Likewise, the "cognition" section isn't "think positively, and everything will be fine!"  It includes an explanation of personal agency, or "how much control I think I have over my life" and common ways that affects your child.  There's a section on increasing flexibility, which autistic people in particular tend to have trouble with.  There's also a section on mistakes.  Specifically, a section telling you how to teach your child that mistakes are a good thing, a learning experience, and part of life.  Unfortunately, culture often tells us that mistakes are failures and a sign that you shouldn't be trying.  This is a harmful mentality for anyone, but it's particularly harmful to rigid-minded people like myself.  We tend to develop perfectionist tendencies, feeling that only the best possible result is the "right" one, and anything less is failure.  This is not healthy, and practically speaking, it's foolish, but it's what happens sometimes.  With this book, a responsible parent (or very forward-thinking autistic adult) can curb that mentality.

A notable point regarding the book's contents: they're unlike any other book I've read on the subject.  While there's often a lot of overlap in "parent experiences" books and "how to help your kid" books, this book instead focuses on the more unique (but effective) aspects of the author's perspective on helping special needs kids.  The cognitive-behavioral sections caught my eye most, because they're what I think behavioral psychology should be doing for autistic people.  But really, all of it is good advice and solid strategy.  I didn't find a single section I disagreed with.

Which brings up another good point of this book.  This doctor is convinced that it is never too early, nor too late, to start changing things for the better.  She repeats this a few times throughout the book, which hopefully helps drive the point home.  I didn't start getting treatment for my problems until I was 20-something, which is far, far too late for early intervention methods.  However, using some of the things found in this book, I've had a lot of improvements to my life and functioning level.

My last note on this book is that it's meant to be readable.  It doesn't go into lengthy scientific concepts, or use tons of jargon in hopes of sounding smart and authoritative.  It's written for a layperson to use, with sparse citations peppered throughout.  While I'm sure the good doctor could have easily cited sources every 5th sentence, this style of citation is much easier to read, and interested readers can reference the back of the book, where full references are given.  But it says something that's there's only six pages of references in a book that's almost 300 pages long.  This book is not interested in giving you a long list of homework, it simply wants you to know it is based on the current scientific work. And that work is available for you to read further, should you desire to do so.

Read This Book If

You're a parent of a child (any age) on the spectrum or with another developmental disability, or a person with those disabilities/differences.  The strategies here are written by a parent, for parents, but someone like me can still adapt the techniques.  This book is easy to read, delivers what the title promises, and does it using what I recognize as a combination of good parenting, intelligent use of psychology, and a strong sense of empathy and compassion.  Highly recommended. 

Tuesday, June 20, 2017

Legwork and Life, week of 6/19/17

My medical gatorade finally came in!  Which means I am, hopefully, in the process of kicking my eternally chapped lips to the curb.  I'm calling it gatorade, but it actually has nothing to do with the actual brand.  It's just a hydration aid, and the only one I know is gatorade.  Anyway, it tastes very strongly of lemon/citrus and looks like this:

The proper name is adorable, but really doesn't fly off the tongue easily.

The actual contents are a lot healthier than standard gatorade as well.  Gatorade tends to only contain sodium chloride, and while that salt is important to hydration, this does two better by including magnesium and potassium salts.  Normal gatorade is also very very high in sugar (seriously, check the label, it's revolting) and contains artificial colors (bad for sensitive people).  This does not.  It's sweetened with stevia leaf, and has no colorants I recognize.  The recommended serving is two teaspoons, which has, in total, ten calories.  

I have already learned a few things.  First, no matter how thirsty I seem to be, I clearly cannot simply guzzle 16 ounces of water in a half hour and expect my body to process it properly.  I hadn't really realized that until I tried it with this stuff, and went running to the bathroom just the same as I do with regular water.  The annoyingly inefficient solution is the sip all drinks forever.  It results in the same amount of liquid intake (if I'm mindful) but far fewer trips to the toilet.  My compromise right now is using a straw with my regular water glass, and making the lemon-salt-stuff in a 32 ounce plastic water bottle.  I can take the water bottle out with me when I go places, which makes it much easier to simply sip it on occasion.  My hope is that I'll build a habit of drinking more water overall this way.

The last thing is that I will probably need to keep buying this stuff, as it is helping.  It's not a magical solution by any stretch of the imagination, and my lips are still a mite wonky, but after only five days of use, my lips (and hopefully the rest of me) seem much more hydrated.  I'm hoping the results are cumulative and in a few weeks, I won't have lip annoyances any more, save if I don't drink the stuff.

In other news, I've been being in close proximity with a baby about once a week recently.  I have a friend that works near me, and she used to visit once a week for a lunch break.  She just had her first kid recently, and is now home taking care of him.  Makes it kind of hard for her to drive the half an hour or so to visit me!  So I'm visiting her.  Her life has radically changed, which doesn't really surprise me given what I've read about parenthood.

I, on the other hand, still have absolutely no idea what to do with babies.  If someone hands me a baby, I'll do my best approximation of "support the baby and its head" and then freeze until someone takes it away.  They're so tiny and breakable, and I'm so clumsy, I don't feel comfortable at all.  But it's interesting to talk with her and help support her through this time in her life.  It sounds like she's planning on having at least one more, so it'll get easier for her in some ways.  Either way, she'll always need friends.  Even odd, awkward, prone-to-freezing friends. 

The last newsworthy moment for this week is hair-related.  I've had long hair for most of two decades, and I've occasionally considered cutting it a lot shorter, and dying it.  I've never added color to my hair before (it has red and blonde natural highlights in it, which look nice in the sunlight), and I've never really thought I needed it.  And that's still true, I just think it'd be fun to have my hair match my favorite color.

So last Friday I went off to an appointment at a school for cosmetology, armed with a recommendation for a particular student and a very vague idea of what I wanted.  The student (Instagram link to her work) took extra care to explain to me my various options for shorter hair, care times and routines, etc.  After awhile, we opted to do a longish pixie cut.  The dying process, sadly, did not go smoothly, so you'll have to wait 'til next Legwork entry to have pictures.  I have, at present, relatively short hair that is much lighter than it should be.  I managed to skim out of church before I ran into anyone I recognized, but I will definitely be seeing some folks that will notice the difference later this week... so we'll see how this goes.

Part of the reason I wore my hair long and relatively unstyled for such a long period of time was that I already feel like I stick out in a crowd.  Accentuating that tendency seemed foolish to me for quite a while.  Since getting married and keeping this blog up for a few years, I feel a little more stable on that front.  And really, two decades of almost the same hairstyle is maybe a bit much.  I still don't love fashion or care much about trends... But I have to admit, 5 minutes of fussing in a mirror is different, but much much shorter than 10 annoyed minutes trying to get a comb and then a brush through my hair.  It has also severely reduced my showering time, which is good for me and the planet at the same time.  Yay.

I'll try to have a picture for you next week with the blue.  : )

Friday, June 16, 2017

Book Review: How I Stayed Alive When My Brain Was Trying to Kill Me

As a foreword...  if you need immediate assistance, please call 1-800-784-2433, or 1-800-SUICIDE.  People who care and want to listen to you are standing by, 24 hours a day. 

How I Stayed Alive When My Brain Was Trying to Kill Me: One Person's Guide to Suicide Prevention, by Susan Rose Blauner.

The title pretty much sums up this book.  I snagged this off the library's bookshelf because I recognized the title from a library job I'd worked almost a decade ago, which tells you that this book is far from recent.  The information inside, therefore, may be somewhat dated, but the hotline at the top of this entry is still going strong. While this book does not directly relate to autism, families with autistic people often undergo a lot of stress and conflict, which can lead to depression, which can lead to suicidal thoughts and even actions.  The autistic individual in particular often develops depression, anxiety, or both. 

I had a hard time reading this book, as I've never been seriously suicidal and no one I know has lost their life to suicide as of yet.  So I connected with some of the book's contents, but not all of it.  The author talks a lot about being very angry and very sad, and about despair.  I sympathized with those, and I think most people do.  I've never gotten beyond that point, though, to where the pain and fury builds past where you can handle it, day in and day out, warping your perspective until suicide seems like a viable option. 

Despite my lack of experience,  I do firmly believe this is a very important book.  It was one of the first "self advocate" style books I'm aware of.  The author is not a doctor or some trained professional, she is literally a formerly suicidal person who has worked through enough of her issues and retrained enough of her brain, that she no longer hurts enough or is angry enough to find suicide an option to her problems.  And she is quite honest about it, in hopes that her life and her suffering will help other people find their way to where she's gotten.

Explained in this book are the author's history, which includes several suicidal "gestures," as she calls them.  She tells you what she was thinking (and not thinking), and what happened.  She summarizes her years of therapy, gives you her list of Tricks of the Trade (things she learned that help), and will help you make Crisis Plans for yourself or your loved one.  She even includes honest letters from her relatives and friends about that period of time in her life.  Peppered throughout are pieces of relevant poetry and songs. 

The first four sections of the book are geared towards helping a suicidal thinker, as I mentioned.  The fifth section is for both suicidal thinkers and their concerned friends/family, and includes a section for how to talk to people considering suicide, statistics, and warning signs.  When I was reading this particular section, my gut started screaming at me to write an email to one of my friends, so I did so, using some of the language in this book.  Turns out he was having a really bad time that day, and the email helped make it a bit better.

The last section of this book is a series of resources, divided up by all kinds of categories.  As the writer is from the United States, most of these sources are located there, but there is a section for Canada hotlines as well.  There are also books, and sources for young people, old people, professionals, and survivors. 

Read This Book If

 You, or anyone you know is considering suicide.  There are many many misconceptions about suicide in popular culture, and this book will help clear them up, as well as give you tools and ideas to work on the subject.  Whether you're very young or very old, this book has something to offer you.  And again, if you need immediate assistance, please call 1-800-784-2433, or 1-800-SUICIDE.

Tuesday, June 13, 2017

Legwork and Life, week of 6/13/17

Do you ever have those weeks where you seem to be struggling really hard, but there's no obvious reason why?  That seems to be my life right now.  My calendar is mostly empty of events, so you'd think I'd have lots of time to get everything done... but somehow, that isn't happening.

I've lost some of my buffer, which is what I call my backlogged posts, book reviews, etc.  I'm not really clear on what's slowing me down, but I do, at least, still have a few things stored in case of emergencies.  But it's unfortunate, because the decline of my buffer correlates with increased stress level.  I've picked up some shorter books to work on, and some friends have sent me interesting bits from around the Internet, so perhaps this is only a temporary setback.

I suppose one of the reasons I feel like I'm losing ground is that I've added updating another blog to the pile of stuff.  Right now, of the committee of four that's supposed to be handling the online presence for the Self Advocates of Michigan, I'm the only one working on the blog.  That should change at the end of this week, at least, but I'm still on the hook for Tuesdays' posts.  So along with this post to my blog, there will be a post to that blog.  So far it's mostly informational and "get involved" type stuff, so not so personalized and introspective as this tends to be. 

There's also a new challenge in my life, and that is trying to tune out a barking dog.  I apparently have a new neighbor, or that neighbor has a new dog.  Either way, there's a little fluffy white excuse for a guard dog across the way, and it barks at anything that moves.  Including, sometimes, the numerous sparrows that live here.  And possibly the leaves on the trees, since those move too.  Until I complained to the apartment manager, that dog would quite literally just sit out there for hours and bark.  Sharp, high-pitched yapping barks, each of which disrupts whatever thought process I was trying to focus on.

I want to be mad at the dog, and make idle (but temporarily satisfying) threats to shoot it with airsoft gun (plastic BBs do little damage, after all), but really, it's not the dog's fault.  Dogs like that are highly anxious, which turns into aggression and territorialness.  The issue, then, is the owner.  Much as I would like to yell at the person for being an inconsiderate cretin, I somehow doubt that would solve the issue.  So I'm resorting to being very polite but definitely not okay with the situation, and contacting the apartment manager.

Can't wait to leave this apartment complex, though... I can't be the only one annoyed by that dog, but I may be the only one actually doing something about it.  Chris (my spouse) suggests we try to live in or near a retirement home area, for our next place.  In the main, because the elderly tend to prefer their peace and quiet, and so do we.

One slightly more cheerful thing happened this week.  I was at church on Sunday, as I usually am.  I sing in church, and while my voice has deteriorated from lack of use, I can still sing alto and sometimes tenor.  So I was singing alto as I went to communion that day.  And unlike most days, where everyone ignores me, a large-ish woman that day... didn't.  She started off singing the melody an octave down, but when she heard me quietly singing the alto part, she bent in to hear me better.  I'm afraid this startled and disquieted me, but I figured she could only be after being able to hear me.  Within two verses, she had picked up the part and was singing it strongly.  I was extremely impressed, as that's a feat of memorization I cannot perform, and have rarely seen done.  So my startle and disquiet turned into admiration.  If I'd been a bit quicker-thinking, I might've invited her to join the choir...  but either way, not a bad experience at all.

Friday, June 9, 2017

Book Review: Not My Boy!

Not My Boy! A Father, a Son, and One Family's Journey with Autism by Rodney Peete with Danelle Morton.

Y'know what's generally missing in many of these "my family's experience with autism" stories?  The dad.  You get plenty about the mom, she's often the driving force behind getting the diagnosis, getting the supports and services the kid needs, and holding the family together.  But not the dad.  In fact, the dad often fades out of the picture entirely.  This is, in part, because taking care of a special needs kid is really stressful, and that's brutally hard on a marriage.   But even if the relationship between the mom and the dad stands the test of time, most of these books I've read have the mom front and center and the dad is... either not there, or is barely there.  A footnote, so to speak, in the story.

That isn't how it should be.  Marriages, and parenting as well, are supposed to be a team effort.  This is particularly necessary given the challenges of raising a special needs kid.  The experience, from what I've read, is very emotionally taxing of course, but also financially taxing.  Perhaps unsurprisingly, many couples, autistic kid or not, end up breaking up over money issues.

So this book is a rare commodity.  The dad in the family wrote this book.  And not because he took over the mom's role in the usual family story.  He was, however, the dad that only faded out of the picture for a few years.  Then he came back, and was the dad his kids needed.  I honestly couldn't find much to complain about in this book.  The dad is brutally honest, but not cruel, to himself.  He is thoughtful, lets you inside his head, and shows you what happened specifically with him and why this tends to be a pattern with the dads in the "autism family" picture.

Also, I shouldn't have to mention this as notable, but our society makes it necessary: this book is written by a man of African American descent, and his family is African American.  That fact makes it doubly important, because the stories of minorities in the US often get sidelined, or never told at all.  The author does not particularly focus on this as an important point, his focus for differing advantages is financially-based, but it wasn't lost on me.  Now more than ever, we as a society need to recognize that the US has a lot of diverse people and stories, and they are all valid.  Maybe we can't fix racism by waving a magic wand, but we can at least listen to people unlike us and learn their lives and struggles.

Something I liked about this book was the picture section, about halfway through.  It's not a huge section, but it helps put faces and people on the names and personalities in the book.  The cover, of course, has a picture of the dad and his son, but it's good to see the sister and other siblings, and the wife.

The last notable point about this book is that this dad doesn't just give you his story and tell you how he failed, bounced back, and succeeded.  He has advice for all dads dealing with an autistic kid.  And it's not just advice strictly from his life, he went out and talked with a lot of dads and families, learning from them to find the common pattern and mentality that causes the "absent dad" phenomenon.

I personally found this book heartening, as it and books like it may help turn the tide of this phenomenon, and make it a trend of the past.  As you perhaps recall, I didn't get my diagnosis until I was 20 or so.  This is, at least in part, because neither of my parents were engaged with the idea that I was very different than my peers.  And probably, in part, because I learned fast enough and had few enough sensory and organizational difficulties that I was able to struggle through school without supports.  That said...  I suffered for that lack.  Not having friends until high school and not being understood by my parents really did a number on my self-worth, my ability to trust other people, and my ability to accept or ask for help.

Obviously, I didn't implode, and my parents did a lot of other things right.  But in an ideal world, I wouldn't have had to suffer those lacks.  My dad wouldn't've had the mentality that this author did, that "bringing home the bacon" and "doing occasional activities when time allows" was a sufficient form of fatherhood.  This author learned otherwise, that special needs kids really do need more than a roof and food, and he freely offers his story as an example to other men.  It does me good to see this, and I really hope his story, and those like it, can help turn the tide of broken families in the autism world.

Read This Book If

You're anyone, especially a dad, involved in an autistic kid's life.  This is a very important story for a lot of reasons, not the least of which is helping to combat the "autistic family, dad MIA" tragedy that plagues us.  Please, please read this book and bring it to dads everywhere.  It's an easy read, and pretty short. 

Tuesday, June 6, 2017

Legwork and Life, week of 6/6/17

Bit of a mixed bag this week.  

My workload doesn't seem to want to quit, so I've been having to take breaks and schedule social events carefully to try not to burn out on my work, but also not become a recluse/overly stressed by all the stuff.

I did have some nice time with my mother, her brothers, and one of my aunts, though.  The occasion was unfortunate: one of their cousins has died, so they were all in town for the funeral.  However, the day after, I was able to have lunch with them and go to Meijer Gardens for a bit.  It was a beautiful day for it, and we explored my favorite section of the place: the Japanese Gardens.  They had the tiny bonsai trees out this time, which was fun.  There are two Japanese maple bonsai there, and my favorite bonsai in the entire collection was one of them, and was out on display.  And despite my mother's worries, I didn't manage to char myself (sunburn). 

Another event this week was a baby shower.  It's only the second baby shower I think I've ever been invited to, and it was definitely the first where the baby was already born.  The little munchkin was several weeks premature, so his mother, a friend of mine from college, simply brought him to the party so people could enjoy him.  He's still in the "I'm going to nap forever" stage of things, but he strongly resembles his father, which I can safely say since his father is from Thailand.  There are actual, obvious facial features that can be pointed to, rather than just a slight difference in the nose or cheekbones or whatever.  Subtleties in facial features often elude me, but in this case the features were distinctive enough that I didn't have much of a problem seeing what they were talking about.

A point of amusement to me about baby showers.  When presented with a baby shower registry, I usually opt for something that seems essential to child-raising.  This last baby shower, I opted for the suction cup bowls, for example.  Those won't be useful until the baby starts eating solid foods, but they will be useful.  I've noticed that this mentality that I have is... mostly specific to me.  Some of the guests at both baby showers seemed to favor clothes, rather than items that the parents will really need, like bottles, car seats, pacifiers, etc.  I get that it's fun to play dressup with something tiny and cute, but I do kind of think it misses the point of the shower.  As I understand it, the baby shower, like the wedding gifts, is supposed to help the couple start on this new phase of their lives.  Clothes, at least to me, are very unpractical.  You can save money getting them secondhand, and you don't need a metric ton of them since you can always toss them in with the week's laundry.  Other items would seem much more useful.  But maybe I'm just a pragmatic killjoy.  I don't know.  

In more health-related news, I'm still trying to fix my perpetually chapped lips and weird bumpy skin.  My doctor opines that we're not truly dealing with dehydration, but since I've had good results with gatorade, I'm trying other things that help fix it anyway.  Gatorade, besides being chocked full of sugar, also apparently contains artificial colors and another substance identified as a neurotoxin.  Not really an issue for most people, but it can be troublesome for sensitive people such as myself.  I had previously tried simply drinking saltwater, which works for some people, but my stomach and taste buds violently rejected those efforts.  I apparently cannot stand the taste of even lightly salted water, and my stomach made me miserable even when I choked it down. 

My current experiment is mixing coconut water, which contains salt and potassium, into my regular water glasses.  I actually have some medical grade gatorade type stuff on back order, but it's taking its dear sweet time arriving, so for now I'm just trying to drink lots of water, and mix in the coconut water.  The coconut water is just pure coconut water, but like most fruit juices, it's high in sugar.  So I end up mixing it at about 7 parts regular water to 1 part coconut water.  The trick with gatorade was to dilute it until it wasn't sweet any more.  I figure that's probably a good enough rule of thumb to follow with this, too.

It seems to be mildly effective.  I've had a bit less trouble with my lips peeling and drying out.  Not as much as I'd like, unfortunately, but this may be a sign I should be including it in my diet regularly.  I'm hoping the medical grade gatorade powder (note: not made by the gatorade company) will be the final solution...  my chapped lips are kind of a thorn in my side, self-esteem-wise. 

The last, notable thing from this week involves carrion.  Specifically, carrion somewhere in my apartment, possibly in the air conditioning system.  We noticed a foul odor a few days ago.  It was faint at first, and we figured it was past time to take out the trash, or maybe clean the disposal.  But with both those things done, the apartment still smelled like rotting death.  It got really bad Sunday night, disrupting my sleep and making breathing into a chore.  At around 4am, I woke up, too hot, and turned the AC up a bit more so I could sleep.  I was promptly assaulted by waves of horrid stench.  Which is where I got the idea that it might be in the AC.  I put in a maintenance request, which was sadly uninvestigated until late afternoon...

By which time, apparently, the stench had begun to fade.  I brought the apartment manager to smell it herself, and she could, somewhat.  But by the time the maintenance guy was able to stop by, the smell was all but gone.  Admittedly, I didn't help matters by opening the screen door and windows.  I was so tired of smelling death that it didn't occur to me that the smell might go away.

By now, thankfully, the smell is gone, and I should be able to sleep undisturbed again.  Yay. 

Friday, June 2, 2017

Book Review: Healing the New Childhood Epidemics

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders, by Kenneth Bock (M.D.) and Cameron Stauth.

Well.  This book was a trial.  Depressingly for me, I sensed that it had sufficient merit that I couldn't merely throw it aside in frustration and find a less energy-shredding book to review.  So after at least two weeks trying to finish reading it, I succeeded.   I'm going to explain the bad bits first, then tell you why I bothered finishing this book and why it may still be worth your read despite the bad bits.

The First Third Or So, or "Augh Whyyyyyyyy"

First, and most importantly, this book's primary author is a medical doctor.  This is important because most understandings of autism consider it a strictly mental disability/difference.  It is, therefore, generally the realm of psychologists, psychiatrists, and other professionals that have an education in psychology.  The people that wrote this book?  Clearly either fell asleep during those classes or never took them in the first place.

That does not mean what they have to say is not relevant or correct... but it did nearly cause me to pop a vein in my forehead when they misrepresented no less than three major schools of thought in psychology, and in the same breath implied they were all basically the same (and useless).  As a person with a degree in psychology, I am regularly disgusted by abuses of psychology in advertising, in politics, and in company policies.  I tend to expect better of educated professionals.

In brief, for your edification or if you read this book.  Freudian psychology is based in understanding and delving into the subconscious, and involves things like dream interpretation, free-association, and psychoanalysis.  The man was a genius, but in a great many cases, he was also extremely misguided.  Very few of his techniques are used today for lack of effectiveness. 

Humanistic psychology, or what this book calls "Be Yourself" psychology, was introduced in the 60s. It is focused on the wholeness of the person, the inherent human drive towards self-actualization, and mindfulness.  It involves non-judgemental listening, guided insights on the part of both therapist and client, and a very positive outlook and mindset.

Equating the two schools of thought is flatly wrong, and insulting to both of them and psychology itself to boot.  That entire section, frankly, tastes like the authors' best attempts to push you away from psychology at any cost. There were many such breezy, poorly-researched thoughts in the first third of the book, and they drove me absolutely batty.

Another really awful bit was one of the very few citations in the book.  It's already somewhat problematic, these days, to write a book on a new theory in which you do not cite your sources... but these authors had the gall to actually cite Andrew Wakefield as a reliable source.  They even refer to him as "Dr. Wakefield" which he is not, any more.  He is not a doctor, for the exact same reason that his name is mud in most autism circles: he published a paper (and held a press conference) effectively saying that the MMR vaccine causes autism.  It was thereafter found that not only did his own research not support this conclusion, but also Wakefield had been paid money by prosecuting lawyers against the MMR vaccine.  In short, Wakefield was corrupt, abused his doctorate, and fabricated claims regarding his research.

The end result of all this was that Wakefield was stripped of his doctorate, his paper was redacted from the magazine that published it, and his research was shown, over and over, to be false.  Calling him "Dr. Wakefield" in this book, and implying that any of his work should be taken seriously, is not only incorrect, but flatly irresponsible.

Perhaps most insulting to me personally, this book and its authors are very fond of using phrasing like "recovering from autism" and "reversing autism."  If you're at all familiar with the neurodiversity movement, you'll know immediately how utterly insulting such phraseology is.  They may as well have said "cure autism" and "fix autism" while they were at it, and taken the appropriately leveled firestorm that comes with such thoughtless word choice.

Like many books of this kind, this book is directed towards parents, in particular, parents who are desperate to "make the autism go away."  The easiest mentality to adopt, upon being told one's child is autistic, is to blame the autism for everything about your kid that's not normal and is bad.  And then seek a cure for it, so you can have your dreams of your child's future back.  I get this.  But it is kind of insulting when someone essentially says, "Oh God, I'll do anything to make my kid not like you."  I'm definitely not a perfect person and I certainly have challenges, but I don't think anyone appreciates being looked upon with a mixture of horror and pity. 

Finally, the first third of so of this book, the "stories of these kids and their treatments" that are meant to resonate with parents reading the book... they either end before the child transitions to adulthood, or they end in death to promote the seriousness of seeking proper treatment.  And each and every one of these stories tastes like pop psychology and abuse of persuasion methods.  Had the whole book been like this, I would have been very inclined to burn the dratted thing rather than return it to the library...

The Not-Terrible Part of the Book

So given how utterly awful the first part of the book was, why did I keep reading?  Well...  here's the thing.  Once you get past the pop psychology and the insulting terminology and the horrifying misrepresentations, the premise of the book is actually very sound.  Also the style of writing changes once they start explaining their particular program, from "dramatic pop psychology" to "medical doctor talking so a layperson can understand."  Much more pleasant, and infinitely more useful.

The idea behind the book is that autism (and ADHD, and the others) are, at least in part, systemic, biological problems.   That seems weird, considering how psychology thinks of autism as strictly a brain problem, but keep in mind, your brain is not some separate entity, it's connected to the rest of your body.  What you eat can affect your brain as well as your midsection, and malnutrition doesn't just affect physical growth, it can also affect mental development.  Make sense?  

Okay.  Next thing these authors do right: they insist, over and over, that there is no one treatment for autism or ADHD or anything else.  Each child is different, and has different problems, and you can't just search for a "magic bullet" cure and apply it willy-nilly.  That's the major mistake people make when it comes to medicine, ie: "Just give me a pill to make it better," and they're done.  This book actually says doctors have the same problem when it comes to medicine.  But the authors strongly insist this is not the way to treat these kids.  Each treatment must be tailored to the kid, they repeat over and over.  

This "individualized treatment" philosophy is the exact same one my own doctor uses, and she's done very well by me and others in her care.  It also makes sense logically, frankly.  If you go around the world and talk in American English at every person with pale skin, you're going to get a lot of annoyed, confused, pale-skinned people in Europe.  There is no one-size-fits-all treatment.

Another thing the authors do right is in the vein of vaccines.  You'd think, from my haranguing about Wakefield above, that they're anti-vaccine.  You'd be wrong.  They, like my own doctor, are supportive-but very careful- with vaccines.  The benefits of vaccines are well-proven.  Polio is effectively no more.  As a child, the worst illness I remember having was hives (from reacting badly to a medicine).  I never had to contend with measles, mumps, polio, tetanus, smallpox, whooping cough...  the list goes on.  

These folks warn about the dangers of vaccines, and advise you strongly to check what's in them before having them administered to your kids.  This is wise, since people can be allergic to eggs and some vaccines have some egg in them.  They also mention the mercury/thimerosal issue as an example of how things can sneak by in vaccines, and why care should be taken with vaccines.  (Please note, there are thankfully almost no vaccines left at this point in time that contain mercury or thimerosal. Do be careful with your flu shot, though.)  They provide an alternate schedule for childhood vaccination, which has more time to allow the child's immune system to adjust and react to the injections.  

Finally, the program itself is sound.  Instead of recommending whatever they're selling and telling you that's all you'll need, to trust them and just believe, they explain their four part plan in great detail. Instead of recommending a silver bullet type cure, like one pill, or even one diet, or something, they insist on four facets of treatment: diet, supplementation, detoxification, and medication.  The keyword for these is "as needed."  While in many cases a change towards the healthy (or in their case, a change towards gluten-free/casein-free or other diets) can of course help a person do better in life, medication and detoxification are not always appropriate.  The key, as mentioned above, is individualized treatment.  Because autism is a trashbin diagnosis, there are many factors that can lead to getting that label, and thus nearly as many treatments as there are people with the diagnosis.

Each of the four categories of treatment is described in detail, including a number of options inside each category.  Diet, for example, doesn't merely cover gluten-free/casein-free, but also contains options for specific food allergies, anti-yeast, anti-hypoglycemia, etc.  Supplementation and medication are naturally very lengthy sections.  I'm pretty sure my eyes glazed over about halfway through the medication section, because I have no experience with any of it and there was so much information.  But I can pretty much be sure this book would make a handy guide when approaching your doctor about ways to improve your kid's life.

Read This Book If

You want a good guide to a group of therapies that actually work to improve the lives of people on the autism spectrum (and possibly ADHD, Asthma, and Allergies, I don't know).  I strongly suggest you skip right to chapter 16/page 189 and use that part of the book as reference, since the first third or so of the book tastes strongly of dramatics and pop psychology.  What remains of the book after that spot is highly useful information regarding therapies my own doctor uses very successfully.  

Please note, this is not a comprehensive guide to all working therapies for autism, but it is the building blocks upon which other therapies (neurofeedback, cognitive/behavioral psychology, and applied behavioral analysis) can really shine.  For more heavily-affected autistic people, these therapies may be the missing key to being able to interact and function in society.  And for people like me that don't have as many difficulties, these therapies can really improve the quality of life and make it easier to deal with the curveballs life throws.