...Whether we want it to be or not...

I guess this is kind of a Part 2 to my last post ("For some of us, every day is April 2nd..."), which was basically all about being autistic and learning to embrace it.  And about 95% of the time, I do embrace it and I'm proud to be me, for better, for worse, and for crazy-weird fun :-)  But then again, there are those days like today that make up that other 5%...

Is it OK to admit that I'm struggling?

As Christians, it seems we're always told to glorify God with our words and with our testimony, and that if we sometimes question why He made us this way or is letting us go through something, we're just walking in doubt instead of in faith.  And somehow, even without saying it explicitly, the message is communicated that this is sinful and disobedient to the God who fearfully and wonderfully made us.  But at the same time, I know that as Paul said in 2 Corinthians 12:10, the times when I am weak as a person are the times when I am strongest as a Christian, because then God can work most visibly in and through me.  So...

Is it OK to admit that I'm struggling?

The past month or so has been crazy busy, what with my husband and 2 of my 3 kids having birthdays, a couple rounds of the Creeping Lung Crud, several subbing jobs, a 1980s-themed Sadie Hawkins dance at the high school (funny how I don't remember the 80s looking quite that bad... then again, I grew up in the 90s, so... o.O), car troubles, job changes, a heart attack scare, and about half a dozen other minor disasters thrown in for comedic effect... oh, and Spring Break too, for that matter.  And this past Saturday, we wrapped up our annual Month of Chaos with my daughter's 15th birthday party, where about a dozen of her best friends crammed into our little apartment to watch Literal Trailers videos and Princess Bride, play Apples to Apples, and take crazy pictures of themselves to post on Instagram.  It was actually a lot of fun, and nothing got broken or thrown this time, so I'd call it an unqualified success :-D

When I made it through Saturday night and all day Sunday without a meltdown, I figured everything was fine, great, dandy... Hey, maybe I've finally developed enough coping skills to actually manage my autism and screen out all of the excess stimuli created by 6 straight hours of 12 hollering teenagers... Maybe I'm finally cured of my autism and my world will actually turn into something normal and I can go on and give my kids the normal life I've always wanted for them...  Maybe this is the start of a new and glorious chapter in my personal history; the Fourth Great and Bountiful Beautiful-Letdownian Empire!  (See... anything can be turned into a Doctor Who reference if you try hard enough... ^_^)

And then... today hit. And the firecrackers started going off in my brain and haven't yet stopped.  And every little tick of the clock and whirr of the fan and beeeeep of the washer makes me want to scream and throw them out the window, the window, the second story window (and I'm betting that you were just there singing along with me, weren't you? ^_^)  And the only way to cope with my daughter's missing cell phone and my son's field trip permission slip and my husband wanting to spend some quality time with me was to go completely numb and just keep repeating the same semi-helpful statements of fact ("No I don't know where it is the last time I saw it you were turning it off at church...  I'm going with your brother on his field trip that day go ask your father if he can chaperone for you... I guess I'm still just really tired from the party and cleaning up afterwards...") over and over again until whatever the issue was resolved itself.  And my 10 year old fell down while selling candy bars for Cub Scouts and scraped up his knee and elbow, and a 14 year old girl disappeared on her way to school in Utah, and someone set off bombs at the Boston Marathon, and so help me, I just didn't care.  And I sat in my car while waiting for my 13 year old to come out of his Boy Scout meeting and just cried and begged God to help me get it together so that I wouldn't scare the living bejeebers out of my kids by having a nervous breakdown in front of them or running my car into a tree for no reason other than to end the madness.

Some days, I hate being this way.  

And on days like this, with the knowledge that April is Autism Awareness Month... all month long... what I wish for most is an Autism Unawareness Day.

One day where, for once, I feel like I'm completely normal and acceptable just as I am.

One day where I don't have to struggle to find the right word and people know what I mean from the words that actually come out of my mouth; a day where, when I'm trying to identify that long thin thing in the conductor's hand as he waves it over the band and I call it first a "stick", and then a "wand," nobody leans over with a snicker and says "Mom, it's Harry Potter that has a wand... That's called a baton."  I know it's a baton, dear... I just misplaced the word for a moment :-/

One day where nobody gives me the Icy Stare of Death because I've described something exactly as I see it and thrown all tact to the wind without even realizing it.

One day where I don't have to wonder what I'm supposed to feel or what I'm supposed to do when something horrific happens in a faraway place like Boston or Manhattan or Newtown, where I can understand why everyone around me is freaking out and holding candlelight vigils from 2000 miles away.

One day where I can feel like I'm fully a part of the world around me, fully engaged and fully equipped to cope with whatever happens... without having to pay the inevitable price of a day like today.

One day where I can be myself, without a mask or a persona, and know that  I won't be shattered beyond repair by the words, the gaze, or the touch of others.

What I want is one day, even if it's just one day, where I can forget completely that I'm autistic and just feel normal for a change, where I and everyone else around me can be totally unaware of my autism and not think instead that I'm just another freak.

Sigh... Yes, I know I'm whining.  I know I'm venting, and I'm using my blog as a place to do it so that maybe someone else out there who struggles with this stuff will realize they're not alone.  I'm venting here so that people will know that, maybe, sometimes, it's OK to admit that we're struggling with the role God has given us to play in this life, because when we admit how weak we are and how dark our world may seem at times, we can see more clearly what a strength and a light our God is.

Even when I'm thrashing about in the midst of a verbal temper tantrum, kicking and screaming at God and asking Him "WHY DID YOU HAVE TO GO AND MAKE ME THIS WAY????  DON'T YOU KNOW HOW MUCH I *%#*@&* HATE THIS????  DON'T YOU CARE???", I know that He made me this way for a reason because He doesn't screw up.  And I know that when I'm all cried out and ready to listen, He'll show me something to make me realize that He's got something bigger in the works than just making me feel "normal"... which is another word for average, which is another word for mediocre, which is just not acceptable for a hyperactive overachiever like me anyway ^_^

So... Is it OK to admit that I'm struggling today?  Yes, I think so.

Am I ever going to get my Autism Unawareness Day?  No, probably not.

Am I ever going to be "normal" or even feel "normal"?  Nope.  Normal is highly overrated anyway.

But hey... At least I don't have to worry about anyone impersonating me or replacing me in God's crazy plan.  Supernatural job security... I guess I can live with that ^_^

And now for today's video...  This has been one of my all-time favorite songs for about 17 years now, one of those songs that just makes me stop whatever I'm doing and just shut up and listen (thankfully, it doesn't often come on my iPod while I'm driving...)  It just seemed like a good note to leave this post on, so...

For some of us, every day is April 2nd... (or, in other words, "Happy Autism Awareness Day to you too!")

"Mom... Is this how you feel every day?!?"

My daughter says this to me as we're sitting at my younger son's Cub Scout pack meeting, listening to the shouts and shrieks of 25 sugared-up grade schoolers as they echo off of the vaulted ceilings and brick walls of the elementary school cafeteria and ricochet through our ears and around the inside of our skulls.  She's trying to gather her thoughts and start on the first post for her brand new blog (apparently she feels the need to share her side of any stories I might tell about her on mine ^_^), and the incoherent noise is pretty much shattering any chance at organized thought for anyone over the age of 9.  (The 9-year-olds, however, are coherent enough to be making hyena noises in the bathroom down the hall... because somehow one of them was able to crawl under the stall door or something equally hyena-worthy...)

Perhaps this seems like a bizarre question for a daughter to ask her mother... Allow me to explain.

I seem to be what today's educators and psychologists would call a "high-functioning autistic".  I say "seem to be" because it wasn't until the late 1980s/early 1990s that educators began recognizing that some kids with autism (or, alternatively, Asperger's Syndrome) could still function in "normal" society and so could be taught in the regular classroom with everyone else.  By that time, I was beginning high school and had already been classified by the teachers and counselors as "mildly disturbed", "creative but troubled", "anti-social", and (my personal favorite) "bright but has trouble making and keeping friends."  Never mind the fact that as a small child, I met 8 of the 12 criteria for autism as listed in the DSM-IV (3 from section 1, 3 from section 2, and 2 from section 3), and all but 2 of the 8 criteria for Asperger's Syndrome.  Never mind the fact that both unexpected loud noises and the normal hubbub of the classroom drove me to tears and always had.  Never mind the fact that changes in the daily routine or in what I thought should be the daily routine would invariably lead to me screaming, yelling, and cussing at whatever adult thought they were in charge at the time.   Never mind the fact that people always seemed to think I was guilty and/or lying about something because I could never hold anyone's eye contact for more than a few moments.  No, because I was already over the age of 3 and perfectly capable of talking, I could, by definition, not possibly be autistic.

Now, logically, it doesn't make sense that high-functioning autism would have magically begun in or around the year 1985 (so that all of its subjects would be young enough to be properly diagnosed in the late '80s or early '90s).  In fact, the growing prevalence of autism in the general population right now and the growing body of research into the neuroscience of autism tells me that autism has been around for generations, maybe even forever.  So, what this tells me is that there are probably thousands of almost-normal people out there who, like me, have always struggled with autism and have spent their entire lives free-falling through this diagnostic generation gap.

I began researching autism and Asperger's about 9 years ago, when my daughter became friends with a classmate with Asperger's.  As I started focusing on special ed and elementary ed in college, I found myself fascinated with the dynamics of autism; the more I worked with kids on the autism spectrum, the more fascinated I became.  Finally, here were kids who made sense to me... why couldn't the other teachers understand them?  Unlike most kids, the autistic students actually reacted normally to noise, schedule changes, people touching them, and all those other irritations of life... well, at least it seemed normal to me, anyway :-)  I could relate to them in their meltdowns because I used to freak out in the exact same way; the things that bugged them bugged me as well, and when we could fix those issues, we all did better.

It wasn't until the past couple of years, as the research on autism spectrum disorders finally grew up into adulthood, that I realized that autism isn't just a childhood problem.  In other words, guess what?  Autistic kids don't magically turn "normal" when they hit 18 and graduate from high school; autistic kids grow up into... wait for it... autistic adults.  Adults who still struggle with sensory overload, making and keeping friends, expressing themselves through speech... and all of the other things in this list and this article.  And if there is such a thing as an autistic adult... then maybe I'm not such a freak after all :-)

So, what is it like to be autistic?

First of all, because my brain doesn't filter out background noise from important information very well, every day is a brand new boiling cacophony of chaos to struggle through.  The combination of the fans blowing, the clock ticking, the computer humming, the neighbors' salsa music salsa-ing, and the cars driving by outside drives me up the wall.  All the time.  The only way to drown it out so I can think is to play music that's louder than the combination so that the main sound I hear is music I can take meaning from instead of white noise that makes no sense.  It's not so much the volume that get to me as it is the sheer number of different sounds to try and sort through.  If you're trying to talk to me, make sure I can hear you over the noise and if possible, look at me so I can read your lips; this helps me to focus on what you're saying instead of losing your words in all the auditory clutter.

Eye contact is actually physically painful.  If I don't look you in the eye when you're talking, it's not because I'm not interested or because I'm easily distracted or that I think you're repulsive to look at... it's because if I stare into your eyes for too long I start to feel like you could reach out and attack me at any moment, and I panic.  This is why I love my sunglasses and wish I could get away with wearing them inside and out, all year round... when I'm wearing my shades, no one notices that I'm not looking at them :-)

When I talk, be patient with me.  Regardless of what may come out of my mouth, I'm really not a complete idiot (I'm of the opinion that "not a complete idiot" is a pretty good loose translation of the Latin term summa cum laude... o.O )  The thoughts are in there somewhere and make total sense to me... I just may need several runs at translating them into words that everyone else will understand.  Sometimes, I practice and rehearse what I mean to say in my head so that it will come out right the first time... only to have random words of it disappear on me just as I'm about to speak them.  So if in mid-sentence sometimes, I start gesturing wildly or describing something blatantly obvious ("door" seems to be a word that disappears on me frequently, for some reason...), or even start trying to say it in Spanish (which has been known to happen more than once), be patient.  Pretend we're playing Charades and try to help me find my missing word... unless I ask you to stop because your guesses are so colossally way far off that they're distracting me from everything else in my head (For example, if I'm thinking "that thing that goes like this **raises hands to form a rectangular archway over head** and then you walk through it...", then "elephant" is probably NOT the word I'm looking for, no matter how loudly you say it... ^_^)  Let me restart as many times as I need to to spit out my sentence... by the third or fourth attempt, you'll probably have a pretty good idea of what it is I'm trying to say anyway, even if I get frustrated and give up.  And please don't laugh at me... I'm doing the best that I can.

If you must change something about plans we've made or the way things usually go, give me some advance warning first.  Even if it's an email the night before or a phone call on the way home from school, any advance warning will give me time to process and rearrange my mind to fit the new circumstances.  I'm not real big on surprises... Give me hints or clues and I'll happily play along, but just don't spring things on me out of the blue.  Oh, and when I'm in the middle of driving somewhere and I'm taking a route that I know well and am comfortable with, please, please, PLEASE do NOT constantly tell me about all of the more efficient and/or better ways to get there... If you want to drive, then you can drive, but if you want me to drive, then let me drive the way I know best, OK?  :-)

I generally don't like to be touched.  Unless I know you pretty well and trust you, and only if I know it's coming... like if I can see you coming from across the cafeteria and you're calling me "MOOOOOOOMMMM" at the top of your lungs as you run across the room to grab a hold of me.  That might be OK... as long as you're one of my kids, one of their longtime friends, or one of my students, and not some 43-year-old guy who calls me "Mom" because he can't remember my name o.O  So, basically, if I look like I need a hug, ask me if I'm OK with a hug first, OK?  Because I really do like (and need) hugs and holding hands and a gentle touch on the shoulder and whatnot, just like everybody else... I just need to be prepared and know to expect it first.

Social situations-- especially if I'm not expecting them-- scare the living bejeebers out of me.  This doesn't mean that I want to be a hermit and never ever see or talk to anyone-- heck, I'm an elementary school teacher and a mom, so that's not exactly an option :-)  But it does mean that I have a LOT of preparation to do before I can be social and it takes a LOT out of me to be social.  In all honesty, I have got to say that the most useful classes I ever took in any school anywhere were the drama classes I took in high school; it was in Mr. Putnam's drama classes that I learned how to create a character, put on that character, block out anything but that character, and stay in character until the curtain closes and I can finally be myself again.  When I have to go out and be social-- whether it's in front of a classroom, on a school bus field trip, at a high school dance, whatever-- I have to take time beforehand to get over the inevitable pre-curtain panic attack and put on my competent-confident-teacher/competent-confident-parent persona.  Only then can I go out and do what I have to do each day... and for the record, I don't mind doing it.  The hours are great, the people are fascinating, and every once in a while I even have fun too :-D

After a social event, when the curtain falls and the audience (i.e. the rest of the real world) goes home and I am all alone by myself, I lay the persona aside... and usually proceed to have a nervous breakdown.  I shake, I pace, I want to scream but can't because my husband and kids and the rest of the neighborhood are usually trying to sleep and would really not appreciate being awakened by a screaming banshee :-/  So I listen to my music really loud in the headphones or I blog or I sometimes just sit and wait for the synapses inside my head to stop firing like firecrackers so I can sleep like everyone else.  This can take hours.  And I feel like my skin is trying to crawl off from the inside out and there's nothing I can do to keep it together except to sit very very still... and it can take hours.

So, stupid question time... Why bother?  Why do I teach, chaperone, let my kids bring their friends home after school each day if it drives me absolutely nuts?  Why don't I mind doing this crazy stuff?  Because the kids and the teens I get to work with are waaaay more than worth it, and who knows... maybe, just maybe, if I can set aside my own little chaos for a while and focus on them, then they will see that they are worth the world to me, and to the God who made me-- and maybe some of them too-- this way.

I don't believe that I was made this way by mistake, or even by accident.  I'm convinced that a huge number of our modern psychological and learning "disorders" are actually not disorders at all, but are instead a reflection of our increasingly intolerant educational system.  We carve out a narrow niche that we demand all students conform to in order to succeed, and then we pinpoint the kids who don't fit perfectly into that niche and give them a label of "_____ disorder" so that we can blame factors out of our control for our failure to educate every child.  We have our autistic disorders, our attention-deficit disorders, our oppositional-defiant disorders, our anxiety disorders, and so on... and in labeling these students as "disorderly," we give ourselves as teachers and as adults a pass on educating them, convincing ourselves that if these kids don't learn, it's not our fault ("we don't have the training to manage these kids") or their fault ("they can't help it, they have a disorder"), but just the way it goes sometimes.

But what if all of these "disorders" are actually just beautiful variations in the way God makes individuals?  What if the disorder is in our unwillingness to see outside our own little boxes, and not in the way these kids' minds work at all?  Ask any parent of an autistic child, or a child with ADHD, or an anxiety disorder, and they will tell you that their child is brilliant and special and full of potential... if only other people would choose to see them that way.

So, basically, I'm choosing each day to live like I was made this way on purpose, like my autism is a gift from God.  He would not have given me my autism unless He knew I was strong enough to handle it, and unless He knew of a way for me to use it to love others.  So... this is why I go out in public when it drives me out of my mind, why I volunteer for all the crazy chaperone duties that make my friends think I'm out of my mind, why I open my home to all of my kids' crazy friends and their mile-a-minute ramblings that prove they may be out of their minds... It's because each and every one of them is totally worth the insanity :-D

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"Mom... Is this how you feel every day?!?"

As you might guess, the answer to her question is yes... This is what I feel every day.  The noise, the chaos, the inability to focus or concentrate, the panic that it creates... all of those are a part of being autistic.  But I know that this is the way I was made, that I'm not a freak of nature after all... and that there is a reason I am the way I am.

I also know from her reaction that my daughter is not autistic, and that because she is a "neurotypical," she will probably have a simpler life than I did.  She doesn't view herself as a freak or a mistake, and for this I will always be grateful.  But if things like this make her aware of what people like her childhood friend and I go through each day, then perhaps she will have more compassion and a better understanding, and will be able to share that with others.

April 2nd is my daughter's birthday; it's also World Autism Awareness Day, when people all over the world are supposed to wear blue to show their awareness and support of people with autism and for autism research.  I'm sure that's all fine and dandy... I've worn blue to support my students with autism and Asperger's in the past, and probably will this year as well just for the heck of it.  But I think that, as far as raising autism awareness goes, I can be more effective by living my life out loud and being honest and open about who I am and why I think I was made this way with anyone who will care to listen.  Because for me, every day, every hour, every minute is about autism awareness.

For some of us, every day is April 2nd.

My favorite moment of the past week... Learning to speak softly :-)

OK, yes, it's been several months... FTST (Full-Time Student Teaching) will do that to a person o_O

I'm currently in a 4th grade bilingual classroom in rural Oregon... 29 kids, 12 girls and 17 boys... that right there should tell you 80% of what you need to know about how it's going o_O

But anyway, I figured that 1) it's been a while since I posted anything, and 2) I had to share this little incident with somebody other than my hubby and kids.

A little background:  On my first day at the school, one of the boys in my class (who I'll call Jason) decided that he hated my guts simply because I was there.  As it turns out, Jason has an ASD (Autism Spectrum Disorder), so he pretty much hates everything that doesn't fit into his schema... which includes student teachers, apparently.  Which is fine... we have a family friend with the same ASD, so I totally get where Jason was coming from.

Over the first few weeks, Jason and I developed a special kind of relationship... I would make eye contact with him, he would glare at me; I would ask him how he was doing, he would growl and turn his back; I would ask him to get out his homework, he would pull his hoodie over his face and pretend to sleep.  It was a beautiful and heartwarming thing, this budding friendship of ours.

And then, one day, we discovered that we had something in common: we've both read and loved the Warriors books by Erin Hunter :-D

After that, it was a whole different story... kind of a Longtail-and-Firepaw sort of thing, if you've read the books ^_^  As it turns out, Jason is off-the-charts brilliant... which goes a ways towards explaining why, as he puts it, "99% of the people in this school irritate me..."  He also does a killer Christopher Judge impersonation...

... though I seriously doubt that he would ever contemplate watching Stargate SG-1.  Ever.  Because everybody knows that intergalactic travel through a wormhole is both physically and theoretically impossible.  As are time travel and the existence of alternate realities.  Oh, well...

So, anyway, this week, I had just finished teaching a lesson when a random fourth grader walked up to me and randomly handed me a meterstick.  For no apparent reason.  Just... thought I should hold onto it, I guess... o_O

"OK... I now have a big stick.  Any idea what I'm supposed to do with it?"

Random Child shrugs, grins, and walks off.  Which is typical, but more on Random-Child later on, I'm sure...

At this point, Jason leans over, gives me his Teal'c look, and remarks, "Now all you need is to learn how to speak softly..."

Gah!  Roosevelt quotes from a fourth grader???  OMG... I love this kid! :-)  (And for the record, yes, he was able to tell me which Roosevelt he was quoting...)