On the Bright Side

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I get that not everyone sees autism as a blessing.
I don’t agree necessarily but I get it and I believe everyone feels what they feel based on their own experience.  For me, I can only speak for our journey.  I do believe autism has been a blessing and a gift.

What concerns me most is that if you go about your journey, seeing autism as a negative and not a blessing, you not only lessen the grace, value and blessing of the autistic individual but, while you are bundled up tight in your blanket of pity, deep inside that fog of woe-is-me, you might just miss the good stuff.

I think we can agree…the sparkles don’t always announce themselves in neon.

Sometimes they quietly tip toe in and hope someone is looking on the bright side.

If you expect and see the worst, I’m pretty darn sure you’ll find it..BUT…if you look on the bright side you just might find the sparkles will surprise you.

Which side are you looking on?

Sparkle On, my friends.

If Your Autism Looks Different…..

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Here’s something to think about.
Give it some thought.

If you don’t see autism the way I do, that’s okay.
If you disagree with my view of autism and this journey… that’s great.
If your journey is completely different than ours, be thankful.

My boy was diagnosed in the darker ages of autism and, thirteen years later, I sure hope things have changed. I hope you see things differently than me…because I hope to heck a LOT of things have changed. I’d be heartbroken if we were still walking the same road and stepping into the same prints.

If things have changed and you are traveling a path that looks better and you’re experiencing the journey differently than me and my boy…be thankful. And, in your moments of being thankful, just remember it’s kids like my boy who came before your child who cut the path you’re on. Remember the children who were permanently changed and scarred by an ABA that may look different than yours.  Remember kids like mine who went before you, who fought the battles, and who demanded their place in a regular education setting when districts refused. My son, and many students like him, battled for their right to be seen as equals in a time when districts still wanted to warehouse kids with differences in isolated SPED classes. If you have a different experience and you think this sounds like crazy talk, thank the older children who stood on the forefront of the battle and cleared the way for the  younger kiddos like yours who came after them.

So if our journey looks different than yours and you disagree with my view, be thankful for that, my friends, be oh so very thankful.

Sparkle ON, Wonder Souls.

Some of you.

 

autism sparkles-184I’ll tell you right now, this one has not been easy to write.

Hemingway, with whom I have a love/hate relationship, suggests writing drunk and editing sober and it’s gotten  bad enough that I’ve considered his advice but I don’t drink so even my Hem, this time, is not helping much at all.  It’s such a crazy struggle when you know what you feel and what the story sounds like in your heart yet you can’t place the words into a readable order that makes the kind of sense you’re shooting for.  And, I’ll be honest, making readable sense then becomes exponentially harder when you happen to be writing about your oldest childhood friends.

I come from this quiet little beach town, south of Santa Barbara, and it’s not at all a fancy town like Santa Barbara.  My town is a more like a sleepy beach town.  Plain town.  Small town.  During my growing up years there were only 8,000 people in our town with little stores called The Sunshine Shop and Ralph’s Grocery as well as The Spot, Mills Drug and Thrifty’s (5-cent single cones).  Our town was so small that our phone numbers (pre-cell phone era) all shared the first three numbers so that all we had to remember were the last four numbers of our friends’ home phones.  My childhood friends were 5866, 2978, 1913, 2134 and, back in the day, I was 5592.  Some of you big city kiddos might laugh at this but, seriously, our graduating class was hardly over a hundred classmates and we’d been memorizing these phone numbers since grade school.  We’re tight knit now because there just weren’t that many of us back then.  These days, 30 years after graduating, we may be scattered around the country and beyond,  but we remain tight because small town kids are like that and we commit to our village.  Once a villager, always a villager….no matter how far away you may find yourself.

So, lately, the village has been hit hard.

Childhood friends of mine have been handed some impossible paths.  R-o-u-g-h stuff.  What makes it even more astounding is that these friends are some of  the healthiest people I know.  Top softball players, soldiers, teachers, singers, runners.  A truly top notch crowd of great parents, skilled individuals, good hearts, extraordinary friends and loving husbands and wives to their spouses.  And that whole idea that bad things are reserved for bad people is destroyed because these are the most positive and kind people you will ever find and they happen to be the highest level of devoted parent that can exist.

Literally, they astound me.

When life hit them hard and threw breast, liposarcoma and colon cancer at them as well as multiple sclerosis and pediatric bone cancer and terminal spinal muscular atrophy at their children, these best-of-the-best human beings did not crumble.  You know how some of us do that go-to-thing where, when asked to stand, we fall right down in a heap of tears and screaming howls?  When asked to shine, we dim?  When asked to inspire, we fall right into our own pity party?

Yeah, that thing. It’s okay because that is who some of us are.  We crumble, we tremble and we fall into a million pieces when challenge knocks at our door. And I’ll be honest with you, having not been tested before, I might just be a crumbler but NOT these friends.   Differently than the crumbling I might have fallen into, these friends did no such thing!!  When life hit these childhood friends HARD, they didn’t do any of those crumbling, pity-partying, light-dimming,  falling-into-a million-pieces things that most of us do.   Not one of them fell or dimmed or crumbled.

As I see them fighting with such radiance, I am absolutely gobsmacked by their wonder as they step up, lead the way and shine a light to inspire the rest of us.  And, honestly, these are not people who were looking to inspire any of us.  They are quieter than that.  They were busy being good spouses and parents and didn’t need to inspire us any more than they already had.  These friends did not want to be asked to shine a light and yet, when asked, THEY DID and they did it with gusto and sparkle and a positive gift giving flair that drew us all to their strength.

So when I hear the world at large throwing around the word “hero”, my hackles go way up because little boys who make millions playing games on fields and in gyms are not heroes.  Showing up does not a hero make.  Heroes are not entertainers paid millions to make nice sounds.  Heroes are not actors paid millions to cry on cue.  Those are merely kids playing games they are well compensated for.

Heroes are so much more  and real heroes are quieter than that.

The real heroes are found on a variety of hospital floors every single day fighting hard and doing what they do best…shining.

  • Heroes are the parents who shine even as they face terminal diseases in their children, like cancers and spinal muscular atrophy, head on despite the tears that fill them, because they want to prolong their child’s life even if for one more day.  They make a path for their children so that a child’s story can be told and they stand up for their children even when their heart is crumbling.
  • Heroes are the ones who face cancer like a prize fighter while enduring a double mastectomy and hardly skip a beat when the cancer returns a second time and they are asked to start the fight all over again.
  • Heroes are the ones who, when the doctor says they will be faced with a rigorous and daily chemo/radiation schedule, they step up and start fighting with their light shining bright.
  • Heroes are the ones who stand tall and fight cancer on two fronts when a daughter and a wife are diagnosed with cancer at the same time.
  • Heroes are the ones who smile even when their heart is breaking because of a high-grade liposarcoma that is more aggressive than anything we have ever seen.  The ones who share their light with the rest of us and inspire us to be better.
  • Heroes quietly go about standing up tall and shining their lights even when they feel like fading from the weight of their battle.

The biggest truth is that these friends, and many strangers just like them, do this every day..quietly and out of the spotlight.  They summon up energy even when they have none, they stand when they feel like crumbling and they keep strong for the sake of family, friends and their own hearts because not everyone is born into lives brimming with health and happy or a life padded with parents offering a silver spoon.  Not everyone is given the pool side chaise lounge.  Some of you are asked to dig deeper, stand taller and endure more.  People with first initials (because you know I value privacy) like S and R and H and J and J and B and D are quietly asked to do more for no apparent reason at all…except to show the rest of us what grace, and hope and real faith look like in living color.

And while some of us complain about the weather or our kiddos or the traffic we endure, some of you sit in doctors’ offices and listen to crazy foreign words like cancer and radiation and chemo and double mastectomy and spinal muscular atrophy and you simply step up in ways we cannot imagine.  Despite the heartbreak and the fear and the stubbornness that screams ‘this-can’t-possibly-be-happening’…….

YOU

STEP

UP.

And these friends are what my heroes look like….because life isn’t fair, life isn’t equal, life isn’t always kind but some of you step up, shine a light,  lead the way, clear a path, tell a story,  and you inspire us all to be better than we are.  You teach us to do more than what is easy.  While some of us will walk though this life entitled and arrogant because life has asked nothing more of us, you  reluctant heroes define grace.  While some of us will be given children who develop rapid fire and hit their developmental milestones with ease no matter how badly they were parented, you show us determination.

The harder realities of life I’m learning in my fourth decade are that:

Some of you will walk a tougher path,

Some of you will not have it easy,

Some of you will be asked to do what seems like the impossible,

Some of you will share a light that will change our lives,

Some of you will inspire us to be better people,

Some of us will simply be in awe of you,

And some of us, like me, will be changed by your journey.

Some of you are simply asked to be heroes and to make the world a better place and to remind us that we are all capable of more.  My hope and want in writing this is that, in the middle of your challenging days, that you understand that who you are matters to all of us and the battle you face matters…perhaps more than you know because some of you are the inspiration that moves some of us to reach higher, dig deeper and live more boldly.  Some of you are asked to dig deep so that some of us can stand in the shadow of your strength and see faith up close.  You are the light and you lead the way for all of us to be better human beings.

What I write won’t ease your chemo or your radiation or the pain your child endures or the loss of your spouse but, truly, I am grateful for who you are and how you show me a strength of spirit I had never seen before.  When I see you shine, I see His light on your path.  I would say I am better because of you but I’ll go further out on that limb and say, we are all better people because of you and the grace you allow us to witness.

I watch you stand up,

I watch you stay strong,

I watch you shoot straight as an arrow

I watch you shine your light and

I am in awe of you because you make me want to be a better human being.

Today I Won The Superbowl! No, really. I DID.

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Today, I was in the drop off line.

The drop off line, my friends.  THAT place that was once both coveted and dreaded.

Sounds simple, right?  Yeah, I know…and it even sounds trite but, if you haven’t been the parent in the drop off line before, it can actually sound like winning the super bowl.

Once upon a time, for our kindergarten year and into first grade, I voluntarily stayed on campus the entire day….just in case his inevitable melt down was bigger than the teacher could handle.  Once upon a time, in second grade, I walked him into class and gave a very elaborate update to the teacher and they honestly had to peel me out of the class because my anxiety toward his impending melt downs felt like an overwhelming helplessness.  Once upon a time, the level of the melt in the melt-down made me reticent to leave my boy at school at all.  Once upon a time, after the majority of our melt downs were gone, I still arrived at school forty five minutes before it was over, just to make sure I was the first car in line so he could easily locate me at pick up time.

It’s been a long road full of highs and lows but, my friends, times change.  Thankfully, my goodness, times change.

Today, I was in the drop off line and then I was in the pick up line at my spectrum kiddo’s middle school.  Today, as my eighth grader walked independently and alone down the line of cars to the fourteenth car, to me, parked in the generic line of cars, I won the Super Bowl.  I did.  I really, really did.  There will be no amount of money won, no carat of diamond rings exchanged, no trips to Disney on this upcoming Sunday afternoon that will equal the value of what my boy accomplished today in the drop off line.  Today, Wonder Souls, I won the Superbowl…no matter who wins on Sunday this victory sweetly belongs to my boy.

The only thing I am sure about on this autism spectrum journey is that autism changes.

Autism changes, it grows, it moves.  I promise.

So don’t panic if you aren’t where you want to be today.  Just take a deep breath, keep working hard and, dear Wonder Souls, Sparkle On indeed.

Being John Goodman

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As so often happens in my house, sleepovers are never really just one night.  The last minute sleepover my youngest son threw together was slowly turning into an almost “all-weekend over”.  It morphed from a sleepover to a sleepover with lunch and movie and, by the time we were done, the seemingly innocent one-nighter was beginning to span a second day.  It happens like that when the sleep over guest conveniently lives right across the street and is also frequently a near-resident of our home.  You never know, when you make that first night commitment, when the child will actually move back into their own home.

They are twelve.  It’s sweet.  I’m good with it.

I wasn’t even very surprised when they started talking about a movie.  And when his mom asked if she needed to feed her boy lunch first, I of course said no and that we would find a fun place to eat before the movie.  I just didn’t know the slow motion service at the boys’ choice of eateries would find us splitting those very last seconds of time in order to make it on time to the movie.

Okay, and honestly, we weren’t on time enough to see the pre-movie trivia part of the program but I’m happy to report, we plopped down into our fourth row floor-seats-before-the-steps seats in a super dark theater but just in time to see the first preview.  Yeah, those seats.  Since we were running a scoche bit late, we got floor seats.  The ones that sit you down almost inside the movie screen where you are obligated to crane your neck to see the upper section of the screen.  Tough seats but perfect timing.  I was just settling into my seat and taking my first relaxing breath of our boy-brain-sleep-over-marathon when the previews began towering over my head.

That’s when it happened.

Unexpectedly.

That fly-under-the-radar-sweet-guy, unassuming John Goodman, gobsmacked me right to tears.

Really.

I have always, on some level, been a John Goodman fan.  Never a hater, perhaps lukewarm for the most part (and not a groupie by any means) but I will say with my first viewing of Always, with Holly Hunter and Richard Dreyfus and coinciding with the summer I worked/survived my wildland fire crew, he won quite the place in my heart.  At 5’3″, and 110 pounds soaking wet back in college, firefighting was a hard gig for me that summer I was assigned to Plumas’ Engine 3-81.  Somehow, Holly Hunter dancing in that white dress, making grocery lists in her sleep and John Goodman swooping in as that devoted friend to pull her out of the dumps when she was falling apart sure got me through that summer of my  own personal deep waters.  That troubling summer, I wished I had a John Goodman to be my rock, my puller-up-out-of-the-dumps-despite-my-protests.

But I am digressing. This is about John, not me.

Until I sat in that crane-your-neck-movie-seat, I’d never thought much about John Goodman. I’d loved him as Pacha and Sully and in a flurry of great performances over my life but despite the stack of performances he’s nailed over decades, the importance of John Goodman had not become apparent until that near-weekend-sleep-over.  Not until the preview for Monuments Men towered over my craned neck did I notice the larger than life and wonderfully colossal qualities of this man I’d known for so long.

Larger than life is not a reference to the size of the man that John Goodman is.  Though he truly is a mountain of a man, it wasn’t that kind of colossal that occurred to me in that moment. It was that colossal kind of mettle that molds a soul into more than who you thought them to be until they towered over you.  The kind of colossal that sets a man apart from who life and his peers should have turned him into.  A greatness that comes from so much more than merely the individual pieces that make up the whole.

John Goodman?

Colossal?

Really?

You’re probably thinking, “Come on, Sparkles, he’s no Robert Redford, you know?    He’s John Goodman.  Good, kind, funny…but colossal?”

Yes.  Colossal.  Stay with me here.

I look at our autism community and we are a lot of things.  A LOT of things, my friends.  We are vocal, passionate, intelligent, educated, committed and brave but, there are moments, when we lack the colossal of John Goodman and that foundation that makes us all more than the sum of our parts.  He is that.  It’s a crazy time we’re living in, Wonder Souls. We spend an embarrassing amount of time giving our attention to the antics of celebrities, hanging on every dysfunctional word that comes out of their mouths, watching as they become obsessed with trivial things like fancy clothing, cars and being seen.  In a community of crazy that celebrities become, John Goodman is a truly and magically a horse of a different color.

A horse of a different color because he is not merely a product of the place he comes from.  He is so much more.  In many ways he is a quandry, a mystery and he is so much more than the sum of the parts.  Despite the acting community he resides in,he is not a man chasing fame.  He is not a man catering his actions to please the masses or his peers.  He is boldly himself.  He is kindly himself.  He is unabashedly himself…despite who those swirling around him choose to become.  He is boldly an independent without harboring a need to crush anyone else.

We all need more John Goodman within our lives, within our communities.

Crazy, you say?  No way.

Watching the faces of the Monuments Men, I remembered a lot of things about John Goodman and not one of them was mean.  I see a man who is humbled, flawed and modest at a time when few people choose that path.  I don’t remember one unkind word.  Not one moment of blame.  Not one moment when he was anything other than kind and true to himself.  Over the last three decades, not once have I watched him be a follower of the masses. He may not agree with me and that’s okay because, you know what?  He didn’t ask me to write this nor did he give me any permissions to see him the way that I do.

I give him a pass on this one.

But what I see, when I look at him towering above me, is a man who has always been just himself.  Throughout the many decades he has graced those celluloid cells, he has been nothing but an original.  In the acting community where so many of his peers chase a fleeting image of thin and fit, he balks at the stereotypes and chooses to simply be an independent without apology.  What I see when I look at John Goodman is incredible strength and character in a world that does not make it easy to be that way.  He is not a perfect man but he is honest and he is real and, no matter what happens, he is kind and smiling.  Positive despite the trials and triumphs of troubles or failures.

That is what strikes me most about John Goodman.  That is what I think is missing in the autism community and perhaps in life in general.  He is comfort and kindness, he is a smile in troubled waters and a familiar chuckle…no matter how deep those troubling waters may be.  We need more of that.  More John Goodman in life and certainly more John Goodman in the autism community. Just try it.  Be the John Goodman that’s missing in your life, in your circles, in the autism community.

More good.

More honest and less perfect.

More flawed, more real and much less camo and pretend.

More soft places to fall into and less finger pointer.

More acceptance and less blaming.

More being John Goodman.

I think he’s pretty darn sparkly and more sparkle is always good.  Sparkle On, my friends.

Superman is Autistic

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I will admit I was not prepared.

A good friend of mine, a man of steel himself (a fireman), assured me the new Superman movie was absolutely action packed from start to finish.  Good to hear, I thought when I read his text, because my spectrum kiddo likes romantic movies just about as much as my fireman friend and neither of them go for that girly-emotional stuff.  My spectrum kiddo is a superhero uber-fan and superheroes are his thing but girls and romance are not.  He takes the comic books and superheroes seriously.  I mean…s-e-r-i-o-u-s-l-y.  He knows who they are, knows the back story, he even knows which superhero offended or is in epic battle with another.  The boy knows it all but, at thirteen, he still wants to know nothing about girls and romance because both are still entirely gross.

So, truly, sitting in the theater during those first fifteen minutes, the movie that was supposed to be an action-packed-boy’s-paradise hit me like a ton of bricks.  I was expecting pecs, abs and biceps,  I was expecting good vs. evil, and I was expecting action packed sequences.  I was expecting to be wowed but, I’ll be honest, I was not expecting to be emotionally overwhelmed and reduced to a tearful puddle right in my theater seat.  Yes, it was sad to watch Laura and Jor-El send their son Kal-El (Clark Kent) into space to find Earth.  That scene, though heart wrenching from a momma’s perspective. produced not one tear.  I was as cool  as a cucumber.  And, as a young Superman sat in his classroom, I was thrilled and warmed to the point of smiling as I saw how he seemed to be just one of the kids in a classroom.

And that is the moment I got emotionally whacked and the bottom fell completely out of my composure.  I blame it on Clark and his mom really.  As a young and sweet pre-Superman boy sat in his lined up desk, in a compulsive row, in a classroom of conformity, his teacher asked him an unexpected question.

He was not focused.

He was not ready.

He was not paying attention because he was overwhelmed by the stimulus around him as his super powers began to surge in a way he was unprepared for.  The sounds, the feelings, the sights kicked in and he was frozen by the excess stimulus and he could not answer the teacher who was singling him out with a question.  The young actor sliced deep into my memory and the emotional pain I watched take over his face struck me personally because the panic that gripped him was the same expression I used to find on my own boy’s face when he was overwhelmed, gripped by life and his own inability to process what life was throwing at him.  And even though my spectrum kiddo was sitting calmly and contentedly beside me, it felt  like I was watching my own boy unravel up on the screen.

Autism parents get it and they understand how your heart can rise up like it’s going to break in two when your child is in crisis.  In that moment I wished all the Wonder Souls were with me.  I knew if The Village was having a movie night and I was with my Wonder Souls, the people who get it, they would have shared that gasp-out-loud moment with me because they would have felt the same deep emotional reflection that I did in their autism parent-soul.

I was frozen as an autism mom because the panic and the fear in the boy’s face was all too familiar to me.   And just as familiar to this momma was the confusion on the face of the classmates and teacher as they frowned and asked one other, “What’s wrong with him?”  And I screamed inside when the other children and the teacher made no real effort to understand what they were seeing or offer simple comfort to the young and melting down Clark.  It was much too real.  And just like my boy did during his last sixth grade melt down, sweet and innocent like young Clark, he fled the classroom for anything he could find that was more soothing than the stimulus that was crushing him.

Clark found the comfort and quiet he needed in a closet a few doors down.  Lucky for Clark he also has x-ray/ fire vision that he is able to use to cook up the door knob when the teacher tries to open the door and coax him out (my boy would have enjoyed very much having that skill).  Clark remained locked in that quieter and more soothing closet until his mother came running breathlessly down the hallway, like all autism mommas and poppas have done at one time or another after receiving that dreaded school phone call.  Clark’s mom, like moms everywhere, stopped at nothing to reach her boy and help him like she knew only she could in those desperate crisis moments.  And that is exactly what Diane Lane, as Clark’s momma,  portrayed so beautifully in the movie.  She knew her boy.  She pushed past the alienation from the other students and she looked beyond how they saw her boy and, instead, looked into the greatness of what she knew lay within him.  She saw the whole child, the brilliant child…no matter what anyone else saw.

She pleads with him to open the door and come out like the teacher has done before her and, at first he refuses.  “The world is too big,” he tells her.

And without being silenced by his very honest admission, she absorbs his words and gives back to him the peace he is searching for in a way that only a seasoned momma can.

“Then make it smaller,” she quietly instructs him.

It is the give and take, the negotiating skills, we forge from an early age with our spectrum kiddos that I notice between the two characters.  Roll with the punches, hear their words, find a path, and then bring them back down to the calm.  His wiring is utterly fried before his mother arrives and he hasn’t yet found his path back to calm.  She understands the behavioral complexities that are familiar to the autism parents who navigate through these intricate dances every day…even multiple times a day.  When he can’t find his focus, she quietly paves a path for him to step upon and remains calmly committed to his comfort until he can toe the path back to her and take hold of the calm he is seeking.

Somewhere in that exchange of heart and words is where I was blinded by the intimate reflection up on the screen that I know too well.  This is precisely the moment when I misplaced my own composure and the tears began to fall among the theater audience.  A theater audience that was not filled with my Wonder Souls.  The Wonder Souls would have understood the familiarity of the intimacy in this moment because they have stepped into the same dance themselves.  They would have heard Diane Lane’s heart lift up into her voice and fill her words with the kind of love that offered her son safety and comfort in his moment of chaos and crisis.  The moment when a mother forms a bridge with her words that extends from her heart and into her child’s deepest needs.

That is what Clark’s mother did so beautifully and that is what I felt lightly gasping inside of me as I witnessed on a sterile movie screen how two actors, she and he, had captured a fleeting emotional interchange that so few outside of the Wonder Souls and the autism parents ever see.  And I wonder, who helped her capture that?  I don’t know that answer but I know somehow they nailed it…perhaps even more than they understand.  It’s right about that time when I have this smiling tearful moment as I realize what a close knit alumni group all of us autism parents are.  We understand the gasp and how bridges made up of words can touch hearts and we get that the faster we run toward our kiddos after that heart stopping phone call from the school, the quicker we can make the world smaller when they need for their world to shrink down into a conquerable size.

In one of the final moments of this heart reflecting scene, as the boy finally opens the closet door and falls into the safety of his mother’s embrace, he utters his confusion at why he has to be different.  I can’t remember the exact words of either character because, by this time, I am a mushy mess.  For the most part he makes his comment and his mother, with this ray of  utter joy on her face, shows him his own perfection and his brilliance.  She confidently assures him of his importance.  THAT is when I knew it in my heart… Superman is autistic.  How else could they reflect what is in the deepest creases of my soul if he wasn’t?  They could not feel these depths unless he was.  He is different, he is quirky, he is brilliant and he is not less.  He is much, much more.  It was perfectly clear to me and I don’t care what anyone else says.  Autism grows, it moves and it changes and so did Superman.

Superman is autistic and his mother is a Wonder Soul and no one can convince me otherwise.  And thankfully, for my boy who thinks girls and romance are gross, the movie did not disappoint and my man of steel friend was right.  My boy saw nothing in the mom and son scene that stirred up his emotions or memories and, true to Superhero standards, Superman carried himself with man-brain decorum that kept the action revved up to super high and the kissing to a severe minimum.

Sparkle On, my friends….you fabulous Wonder Soul alumni that understand all of this like no one else probably will.  I also suddenly realize this is why The Village works so well…because we all travel the same paths through our different stories.  The same but different.  At different paces, different cultures, different time zones, different cities, different philosophies, different names of our children and yet roads that are essentially the same.

And before the fact finders pounce upon me, YES, I get that it’s a movie, he’s not actually diagnosed, she’s not his mother and they are both actors paid to act and get it right and yet, at the same time, knowingly or unknowingly, they nailed it.  The two have captured an intimate moment that reflects so deeply into many of us.  Do they know it yet?   I don’t know.  Did they intend to do what they did?  Not sure.  What I do know is what I saw reflected on that screen rippled so deeply within me that they might as well have ripped their script right out of the corner of my heart.  So much so that it made me smile through my tears because just like Clark Kent grew and changed and went on to greatness in the world as Superman, so will my boy.  Despite the challenges our spectrum kiddos face as children and adolescents, they too can go on to greatness because if that single letter “S” on Superman’s chest can mean hope, imagine what six letters, starting with “A” and ending with “M” can mean in the lives of our kiddos.  Our very own superheroes and, in my heart, I believe those letters stand for brilliance.  Absolute brilliance.

The Pirates of Autism

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Once upon a time I was not a pirate.

Once upon a time I colored inside the lines.

Once upon a time autism changed everything.

Once upon a time I might have been more apt to follow others and be the obedient good girl but, once upon a time, navigating the spectrum changed that.   I’ll also tell you right now, you may not like what I’m about to say so I urge you to brace yourself and keep the mind open because, I promise you with my whole heart, it’s going to cut across the grain that you’ve grown comfortable with.

Pirating is like that.

One of the earliest lessons the spectrum taught me was to not put all my eggs in the “experts'” basket.  It became clear pretty quick that the experts were flying as blind as I was. Autism wasn’t new but in the days of Y2K, the numbers were rising and the doctors and game plans were as gray as the spectrum.  Thankfully,when it comes right down to it, I don’t toe the party line well so going off on our own, while not entirely comfortable, was not entirely foreign either.

We set sail on the spectrum in the spring of 2001 and I will say we hit rough seas early on because, for goodness sake, it was autism.  It was vague.  It was gray.  It was the unknown.  In those beginning gray days, when the journey began, the skills I thought I owned were fairly useless when it came to autism.  Autism, in my home, seemed to thumb its nose at conventional thinking and it didn’t take long until the battle weariness of autism hit me hard and square in the face.

Autism, in those early days, laid me out flat and made me unsure that I even had skills enough to make the journey…much less overcome anything.  Who was I to think I could take on autism or make a difference?  I was not a momma with a plan.  I was not an adult with a medical  background.  I was not a woman with any know how.  I was nothing more than a momma with fear flying hard at her back.  Fear that she might not do enough, be enough, have enough to help her boy.

Fear is a powerful motivator.

It didn’t take me long to see that following the rules of the party line with the typical tool box was not always what my boy needed.  I also learned quick that though the spectrum landscape was full of autism snake oils, unicorn-dream-cures and some crazy good sales masters, following the flavor of the month autism-cure-gurus was also not for me.   It became clear that those autism-one-size-fits-all cures were not going in my basket.  The only part I was beginning to understand is that the party line and the protocols from the powers that be and the gurus were not going to bridge the gaps my boy was struggling with…no matter how much celebrity or mainstream endorsement the gurus and unicorn-dream-cures received.  It was becoming clear, in order to understand autism, the most important thing I could do for my boy was earn a PhD in my child.  The pirate in me was coming to see that I couldn’t and wouldn’t concern myself with the autism-cure-gurus.  What I did concern myself with in those gray days was standing alone if I had to and becoming the all-knower of my spectrum kiddo because that was the only way to help him…and help others to see him.

Standing alone is not always easy.

Going against the spectrum grain is not easy.

Saying no to the experts is not easy.

Following is easy and, in many ways, more soothing than pirating…so why would any sane minded momma leave the pretty, sweet, mainstream, toe the party line world behind?  Why be the push-back mom at every turn?  Why transform one’s self into a bitch, a rebel, a pirate, a pariah, a walker of the fringe, a loner, an unwanted soul?  Mostly because what I was learning best in my early pirate days is that there are no cookie cutter answers or quick solutions on the spectrum.  I left easy behind me because I believed my boy could be MORE than the experts claimed.  What I came to discover during our second year of navigating the spectrum full time is that pirates understand easy is not always best.  Pirates don’t play follow the leader and pirates don’t take the well traveled path.  Pirates know how to be the bad guy and pirates aren’t afraid to stand alone when they have to.  I left the sweet and popular life behind me as we set sail, navigating the spectrum, because I believed in my boy and there was little in the mainstream protocol for autism that seemed to work for us.

Chelation?  NO.

Relegated to Special Ed forever? NO.

Gluten/Casein free living?  NO.

Free range melt downs? NO.

Oh, honey, just wait it out, he’ll be fine?  NO.

And when the rest of the world seemed to be running away from medication, we stepped in and said YES, we will try.

Early on, in the rough and tumble, sparkle-less first years of our navigation, life and people were not always kind.  When I began to see those dismissive glances in the eyes of others, the pirate in me grew and crowded out the sweet-compliant-momma that I used to be.  I could hear the scream welling up with in me, “Do not see my boy like that!!  See him for who he is.  He is more than one of the students that you have warehoused in those classrooms at the end of hallways for decades upon decades.”

In the beginning I believed everyone could see his sparkle and his potential as much as me and I was genuinely heart hurt when I realized that mostly what people saw is that he belonged “elsewhere.” The elsewhere that resides OUTSIDE of the mainstream and if I wanted my boy to where I believed he belonged, I would need to become a constant architect in my spectrum kiddo’s life.  I would need to be his champion and to become his pirate.  I would have to be present….at home, at school, and in the community if I wanted him to be seen through my eyes.  I would have to spend the time, the minutes, the hours, the sometimes really difficult days of getting to know all of him if I was going to convince others to see more than the autism and see him in something more than a segregated life.

Even when the world stood against us, the pirate in me could see the masterpiece within him.  An original.  A child with a processing system more complicated and complex than I could ever have imagined.  I have spent the last thirteen years supporting his needs, observing his behaviors and analyzing his reactions because who he is not only matters to me…it completely astounds me.  In those first pirate days, before I really understood pirating autism, I started seeing the other families who navigated the spectrum did so a whole lot differently than me.  I began to see that who I was was different.  Not wrong or right but different.  If another spectrum kiddo did not sit down to the breakfast table and find two pieces of bacon every morning on his plate, placed on the right side, he would scream and fall apart and sparkle momma would drop everything to comply with the request or dash out to the store to get him what he wanted.  The entire family became trained in how to properly make breakfast for the boy so that he would not scream and howl and fall apart.  When he developed a comfort in the family routine of turning only left out of the driveway every single day and screamed and howled and melted down when the family one day turned right, the family changed their way of life and never turned right again.  The philosophy was to encourage, indulge, comfort and support and the pirate in me was not having any of it.

I was and am the opposite of the party line.  Those early pirate days would lay the foundation that would later come to define he and I.  If my boy ever developed a need to control his breakfast plate and my cooking to that extent, I immediately threw a wrench into the process so as to desensitize the obsession with support, change and repetition.  If he was obsessed with two pieces of bacon, I’d meet the tantrum/melt down head on by giving him one or three or none and I’d do it until he was desensitized to the mania that was gripping him.  If he wanted to only turn left, I’d prep him and support him and then turn right until he came to terms with it.  Although force feeding a child or making food a combat issue has never been my cup of tea, introducing them to new textures and flavors is a hobby of ours because change is something good to introduce too.

Autism may be a different wiring system but autism is not less intelligent.  I assure you, autism is wildly brilliant and my boy has been sharp as a tack since day one.  He understands how the system works…and he uses it to his advantage.  He can determine the “weak link” in a matter of minutes.  If he can throw a fit and get what he wants…why not try?  And try is what he does…with gusto.  If some of the big people will let themselves be manipulated by the sweet autistic boy then he feels it is his duty to give it a whirl and that boy, if allowed, can whirl it up big.

Did the boy become well behaved over night?  Not so much.  Was he well behaved by four?  Oh goodness no.  He was non-compliant and downright defiant.  My boy, as cute as he is, was anything but pretty in those days but I promise you the earlier you begin to set your backbone firmly in place, the earlier you see results.  It’s not a magic fix, it’s a process.  Expectations, structure, discipline, firm consequences and consistency all play their part and discipline, when done well, is neither loud nor angry.  I will also emphasize that a child’s ability to control and regulate their own behavior is also fully dependent on age and verbal ability.  Discipline is the art of give and take, back and forth, and it is a system of behavioral communication and choices.  A child who cannot  communicate cannot be held to the same accountability as a child who is verbal.  As my boy has matured AND gained verbal abilities, I have expected more of him behaviorally and he has, with ups and downs, stepped up to the plate.  It is not magic, it comes with chaos and ugly…and the path to a child regulating their behavior starts slow, in the early years, and in small steps.

We pushed to get into regular ed amidst the skeptics and once we got there, it was up to us to give them a reason to keep us there so, truly, behavior mattered.  And, honestly, if you let the behaviors whirl out of control you will not be able to see his academics.  Behavior WILL eclipse academics in the classroom.  There is a whole lot of talk these days about the difference between melt downs and tantrums and, honestly, it’s simply a matter of semantics to me.  In the end, whether it is a tantrum or a melt down…it does NOT matter…a child, if they are going to be educated in the richer educational classroom, is going to need the skills, strategies and support to control them BOTH.

I understand why children tantrum/meltdown.  I understand why parents take a lax approach.  I understand because it is so much easier to give in to the tantrum and soothe the meltdown than to be the bad guy…over and over and over and over and over again.  Being the bad guy all the time is NOT fun.  I assure you pirating is not the fun place to be because the spectrum behavioral combat zone is not a pretty place.  Being the bad guy is NOT easy and being the bad guy all the time is, well, daunting.  But you know what else isn’t easy?  Watching your beautiful child being placed in a segregated and hardly educational classroom full  of children who cannot control themselves either.  That was my motivator for toeing my own line rather than sticking to the party line.

Hate me because I am a pirate if that is easier for you to do but watching your beautiful and brilliant child relegated to classrooms full of out of control kiddos who are warehoused and not educated is far worse than standing up to the ugly that comes from facing tantrums/melt downs head on, every single day because that is what it takes in those early years in order to teach a kiddo the skills that are required to sit in a regular education classroom and receive a real education.

I tell you this as both a mother and a special education teacher.

And the bottom line is that you can debate the semantics and differences between melt down and tantrum until you are blue in the face but the reality is that kiddos will have to learn to control both to be in a regular ed classroom which is where I always wanted my boy to be.  You can coddle and make excuses but all that does is leave a child ill prepared for an educational system that will not tolerate the outbursts for long and will come up with their own system of requirements for removing your beautiful and brilliant child into a much less academic placement because the cute tantrum of a four year old, fifty pound child is controllable but the escalated and magnified meltdown/tantrum of a thirteen year old who has been coddled for a decade is powerful, damaging and violent and will land a child in an restrictive placement.

Pirating may be romanticized by some but pirating, on this spectrum, ain’t about the flip flops and umbrella drinks.  Oh goodness no.  That’s a whole other pirating system we can all aspire to when we take The Village on vacation one day.  Pirating autism is a matter of standing alone, walking away from the protocols and gurus that don’t serve you and traveling the path that works for you.  Pirating autism is the way in which you keep your backbone firmly in tact in the face of adversity and disagreement and move forward even when you have to do so alone.  Pirates even cry alone…until they reach The Village…and then we cry with friends who understand.

I am not of the mindset that asks the world to create a new set of rules to accommodate all of my boy’s quirkies.  I understand where that sort of notion comes from but, as a pirate, I also understand we all live in this world and this world comes with a set of socially acceptable rules and customs.  There are rules of conduct and behavior and it’s my job as a parent to prepare my boy for  that world if I expect him to be able to navigate it well.  It’s also my job to prepare the world to be a little more tolerant so that my brilliant boy can be appreciated for the fabulous gift and asset that he is.  Both sides need to come together, to move away from their set in stone corners, so that the middle ground becomes a place where we all can come together in love and support and provide better outcomes for our kiddos.  The pirating life may not be for everyone but, for me and my spectrum kiddo, it has meant the difference between living a full life and being hidden on the periphery so, come what may, good and bad, it’s the pirate life for me.  Sparkle On, my friends!