Day 1. College.

Wyatt-CSUB

I won’t candy coat anything and tell you the road isn’t long, hard and weary. It is.

And I won’t tell you it’s easy to be the bad guy against the school district every year because it isn’t…..but I promise you it’s worth every struggle, every fight and all the hard work pays off on that one day when you get to watch your spectrum kiddo defy the odds against him when he walks onto his college campus alone on that first day of his freshman year in college ❤️

Sparkle On, my dear friends

Papa John’s for the Win

Johns pizza

There are just so many moments that you don’t expect. For as many years as we have been on this journey, the moments still leave me gobsmacked.
This is what happened this weekend….

Me: Your brother isn’t feeling well. I’m going to run into the UPS store to mail a package to your sister. Would you two feel like eating a pizza?

Spectrum kiddo: Yeah. That sounds great. I can go order the pizza, Mom.

And that’s the moment.
That moment that becomes a combination of overwhelming pride swirling with a smallish rumble of anxiety that mix awkwardly as the waves of pride and anxiety crash together unexpectedly. It hits me hard but I also know he is watching me and waiting for my answer so I casually catch my breath.

There is no reason to tell him “no” and every reason to say “yes” but it’s something we haven’t done before so, after I catch my breath and readjust my thought process, I answer him. The UPS store is one store away from John’s Incredible Pizza and it’s a quiet day so I say the thing that still scares the mom in me.

I tell him without any visible hesitation, “Yeah, that sounds great.”

I hand him the money and I watch my son walk away…in the opposite direction of me… as though this is our norm. Every one in that part of the world could look at us and not know any difference. They could think this IS our norm but I know. I know this is our first time and I need to steady my mom nerves so I overpower any residual helicopter tendencies and let him walk away…on his own…just like any other sixteen year old boy. And, surprisingly, I keep right on breathing and the world does not even stop spinning.

And, just like any sixteen year old…. he orders the pizza, pays for the pizza and walks out of that pizza joint like a boss with the exact kind of pizza he ordered and change in hand…like this is something we always do. And I casually acknowledge the accomplishment on the outside because I don’t want to embarrass him but, inside, I’m screaming and smiling as bright and big as the whole darn sun.

Thank you, Papa John’s Pizza for an unexpected milestone in our life. The person at the cash register probably never knew the sale was anything out of the ordinary and they treated my spectrum kiddo just like they would anyone else…with kindness and understanding…just like it should be. It was simple and profound and a moment I will not ever forget and perhaps the beginning of a whole new level of his independent life.

‪#‎neverforgetthefirst‬
‪#‎PapaJohnsforthewin‬
‪#‎screamingontheinside‬
‪#‎thebeginningofhislife‬

Sparkle On, my friends.

Don’t Be the A-S-S

autism sparkles-63
A Wonder Soul asked this last week about my kiddo and whether he had been diagnosed as severe early on. It’s a question that’s been trailing me all week. Back in the diagnosis days fifteen years ago, it wasn’t always a helpful process and doctors weren’t always very open or hopeful with the parents. I don’t ever remember hearing a functioning level discussed. One might think that because my son is successful in high school today (at 16) and is independent in his academics that it has always been that way. It has NOT. There were days when his behaviors nearly eclipsed his academics and put educational choices out of our hands.
What I do remember is him not being accepted into the same”typical” preschools his siblings attended because of his volatile behavior, his lack of speech, the fact that he was still in diapers at four, and because the preschool administrator looked at me like I had a third eye when I mentioned he was autistic. What I do remember is being in the special ed classes in preschool through our local elementary school. What I do remember is wanting my boy to be recommended for the combo kindergarten class Florida offered where two teachers (one sped and one reg ed teacher) team taught a class that was mixed with regular ed and SPED students….t-o-g-e-t-h-e-r. Yeah, we wanted to be part of that.
I remember the crushing feeling when I heard we would not be recommended for that class and, instead, would be placed into a isolated special day class for kids with varying disabilities.I remember the first day of that class. I remember walking in and knowing that class was not the right placement for us ….not because I didn’t want him with other kids like him but I knew, from the way the class was set up with toys and fun zones, that once he got used to playing all day, we’d never get him to buckle down and do academics again because playing on the computer and in the kitchen area is a lot more fun and behaviors would escalate further to get back to the fun zones he wanted.
That’s when I went back to the team and the teacher and I pleaded and I promised and I pledged all my time to them to help make up for the time my boy would take away from their other students. I also recognized that there was a chance I was in denial and the new placement wouldn’t work so I asked them to give us just three months. I promised after three months if it was not a good fit, I would be the first one to remove him.
I tell people often that that one decision changed everything. It was the difference between my son sinking and swimming academically. It was a risk and I understand they had never taken such risks before but, that day, they did and they gave my son the chance to rise up to the expectations set before him. To this day, those two teachers and the two aides in the class, to me, are the Godsends that changed the direction of our lives forever. Nicole and Kim (last names not used because I do not know if they would want them used publicly) were, and are still, the magic in our memories and I’m thankful every day for the risk they all took for my boy.
I promise you it was not a simple or easy year.
Progress was not magic.
My boy was not always kind and did not make great choices.
He challenged them every single day but they did not give up.  No matter how much he screamed in opposition, no matter how much he snotted on their clothes, no matter how much he tried to manipulate to get what he wanted…..they never gave up on him.
Later that year, when it was time for our IEP meeting in prep for first grade the first words I heard out of our team was, “We’re sorry.” Their response was stunning and, to this day, I still marvel at it. Their honesty, their transparency and their genuine love of their students is something all teams should aspire to.
A stunned me asked an obvious, “Why?”
As they spoke, I heard these words, “We’re sorry. We thought we understood your son’s educational level. We thought we knew how far he could go but we were wrong. We were all wrong. Your son is a red flag to us that there is a lot we don’t know and we shouldn’t assume we understand a child’s potential just because we know his current functioning levels.”
And like I said before, I’m not sure if my son was considered “severe” back in those early days but he was challenged enough not to be seen as a candidate for classes with his typical peers. What I do know now, with certainty, is where he is today because of the risks and challenges that were taken.
Lesson #1: Don’t be the a-s-s in the word a-s-s-u-m-e. Never assume.
Lesson #2: Keep raising goals because kiddos just might surprise you and rise up to meet them.  Listen to you…no one knows your kiddo like you do and if the powers that be can’t initially see it, keep working at it because there is nothing more regretful that opportunities not seized.
Sparkle On, my friends.
Never. Give. Up.

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.

Being John Goodman

sully

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.

The Pirates of Autism

pirate-1

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!

The Iridescence of Autism vs The Vanilla People

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In life, let’s first get this out in the open and admit, there are vanilla people.  Those people who really love vanilla.  Plain vanilla.  No toppings, no swirls, no syrups or hot fudge, no nuts, and, by all means…believe it or not, no whipped cream.  That is the way it is.  Just. Vanilla. Please.  That is who they are.  They cannot help it.  They are not necessarily bad people.  They simply have not opened themselves up to the radiant and non-vanilla world around them…yet.

Of course I have never been a vanilla girl.  I will take chocolate, coffee, mint ‘n’ chip, butter brickle, chocolate triple fudge brownie, mango swirl, you name it.  Anything but vanilla for me, please.

When it comes to life outside the ice cream shop, autism and it’s sparkly iridescence come up against their version of vanilla people too.  Not everyone likes autism’s sparkles.  Not everyone is comfortable with it.  That’s part of the spectrum journey too.  Believe it or not, some people just want the vanilla version of children and life and those vanilla people will never quite appreciate anything other than their beloved, simple vanilla.  Vanilla people, in their want for conformity and consistency, will never embrace or appreciate the iridescence,sparkle and brilliance of autism.

That is simply a fact of life.

No matter how sparkly and brilliant we may see autism, the vanilla people will never see it.  Although some of us adore iridescence and sparkle, others do not and that is okay.  All I say is, be aware of the vanilla people, know they are out there, know they will never change and just let them go.  Take them with a grain of salt or perhaps, better yet, take them slathered in a thick coating of hot fudge.  The non-iridescent-loving vanilla people will not love the spectrum, challenges, differences or disabilities, nor will they appreciate the crazy wonderful pieces of life a non-vanilla dance can bring.

I learned that I cannot change them but, lately, I have come to think that perhaps the vanilla people have their place.  Crazy thought, huh?  Sometimes I believe that in order to retain the unique quality that is iridescence, it has to be sparse to be appreciated.    Thankfully, we are not in the place where vanilla has gained a majority.  Thankfully there are enough of us exotic chocolate loving souls to keep those vanilla-ites at a minimum and to keep the sparkles special.  The vanilla people still hold their place, they push iridescence away and I think that keeps the world in balance.  Not perfect, you’re right, but it leaves us pretty darn sparkly and perhaps even the possessor of the unique mystery that lies within our spectrum journey.

Autism has its quirkies, it’s definitely hard to define and it kind of sparkles indefinitely.  Not everyone likes their world all bright and shiny and reflective.  It truly takes a remarkable person and a savvy eye to appreciate the iridescence of autism because there are a lot of unknowns, it’s scary, it’s hard to know where it will take you.  Not everyone can be trusted with that kind of brilliance.

Sometimes it’s easier if you look at it from an angle with a partial view, one day at a time with deep breaths in between.  That is the advice I give most parents when they ask me what they should do.  Just breathe and don’t get ahead of yourself.  Today, concentrate on today.  Tomorrow will take care of itself.  Don’t get lost in the sparkle.  Worrying about what might happen next week or next year or six years from now will serve no purpose and will not make anyone’s life more peaceful or more accomplished.  If you have plans next week or next month, pencil them in but, otherwise, don’t fret.  Just breathe deeply and often.

And, because this is about real life, I have to admit this lesson was a hard one for me to learn.  I am by nature a worrier and a fretter.  Thankfully, autism and this life have taught me some good life lessons and coping skills.  I hope you learn this lesson with more ease than I did.  I can see it in new parents who are just starting their journey and I recognize it is how I used to be.  I also know from hard fought experience that all the worrying in the world did not change a thing.  Working hard, breathing deeply and taking one step at a time made the real difference in our spectrum traveling world.  These days, when I feel the squeeze of the anxiety swelling in my chest, I have to stop what I am doing, break it down into small pieces and take a deep breath.  I do this because I know that in small pieces I can do anything I set my mind to.  But if I let too much crowd me all at once, I get overwhelmed.

So, forget about the vanilla people who don’t see the radiance or appreciate the iridescence.  Just breathe deeply, take life’s challenges one day and one single step at a time and know you will get through all of this.  Some days you will even get through it with radiance, enthusiasm and great love for the blessings autism has shared with you.  Honest.  And, just like with iridescence, if you look at it from a different view, a different angle, and if you look close, autism can afford you glimpses of greatness in a magnitude that hasn’t yet been seen.

That is how I feel some days. (Of course, not on the fall apart days because the fall apart days WIPE ME OUT.)

Some days, his autism is like an iridescent radiance…he literally shines in my life and the radiance sparkles before my eyes.  Sometimes the radiance is bright enough to let me see just a glimmer of what he is seeing and that is the essence of the joy and love he shares with me.  That is exactly why I love autism so much.  It changes me and it thrills me and, some days I am able to breathe in his radiant iridescence and it makes me momentarily glow inside too.  I suppose it can be said that my boy brought “glow” to my life.

And, like with iridescence, as the light changes and the child grows, autism grows and changes as well.  Not every moment is brightened with iridescence but that’s okay too.  Embrace the ones that sparkle and know on the fall apart days that the sparkle will come back and is probably just around the corner.  I am so thankful for the iridescence he sprinkles into my life…the one thing I never knew I wanted but am so thankful I have.  The other thing I know is I will never be one of the vanilla people.  I understand their place but I will never ever be so vanilla-ish as to miss the brilliance that has been gifted into my life.  Sparkle On, my friends!