When In Doubt…remember the SPANISH paper.

Wyatt-3

There are so many things you won’t know when your kiddo is first diagnosed with autism.

There are so many things that will soon come right along to turn your world upside down.

There are so many things that will do their best to confuse you and crush you and end the dreams you held for your kiddos before they were diagnosed.

There are so many things that will turn your life into a gray zone that seems to hardly ever make sense.

There are so many things and people and words that will make you break into a puddle of tears for no-reason-at-all.

There are just so-many-things.

I felt that way when my boy was diagnosed in 2001.  Oh how I felt that way and oh how that puddle of tears seemed to follow me wherever I went.  I didn’t know how to do autism.  I didn’t know if I was doing everything I could to help my boy.  I didn’t even know IF I could help my boy. I mean…AUTISM.  I thought it was bigger than me.  I thought it was bigger than my little boy.  I thought back then, it was bigger than both of us.  In those days of our early diagnosis, my boy was the classical case of autism lacking words and eye contact and interaction. He was sweet.  He was cute.  He was even cuddly but he was also all of those classic signs that screamed autism loudly into our lives.  He was a Thomas the Tank Engine genius in a world dominated by Thomas, Percy, James, Diesel, Sir Topham Hat, Annie and Clarabel.

There were so many things.  So many things they said he could not do and so many things he would not be because…A-U-T-I-S-M.  And, let’s be honest, it was the experts who were making predictions about my boy so who was I to question them?  I was nothing more than a tired mom….so I crumbled and I cried and I fell apart at every turn because that’s how I rolled in those early, post-diagnosis years.  Until that one day when the person my boy was becoming ran counter to who they said he could be and, on that one day, I decided I’d never again put all my eggs/hopes/beliefs/dreams into any single basket the experts gave me.  I decided right then to let my boy decide who he was going to be.

And that is the one day I stood up straight, strengthen my back bone  and watched as our spectrum journey really began one day at a time, one step at a time, sometimes rolling fast and sometimes at a snail’s pace, and always supporting my boy’s progress.

So you wonderful Wonder Souls might be wondering what any of this has to do with the Spanish paper that’s sitting at the top of this page.  Today my boy is fifteen and I found this in the Spectrum Kiddo’s room on Friday.  It was folded up with the words on the inside sitting on his floor and, on a lark and thinking it was trash, I opened it up.  And then my jaw fell open because…GOBSMACKED.

There are just so many things that I did not expect.

There are just so many ways autism has opened my eyes.

There are just so many ways he leaves me gobsmacked more times than I’d like to admit.

For a boy who was not supposed to make it out of Special Ed classes, for a boy who had a severe speech delay and who still is working on mastering conversational English, for a boy who one teacher recommended this year should have a one on one aide…well, just look at THIS.  SPANISH. My boy, just like any other kiddo in his class, doing his homework in Spanish.

Simple, right?  It’s just Spanish homework, silly girl.

To the rest of the world..sure.

For us..it’s simple and complex and mystical and gobsmacking because he is so much more than the plethora of “theys” said he could or would or should be when their abysmal evaluation listed all the pieces that would never be part of my boy’s life and yet, despite the experts and their in-stone predictions, here we are.

He is already so much more than that limited view of life they predicted would be his goal.  He is so just so much more…on every level.

My boy is so much more than anyone could have ever expected him or projected him to be. And while I understand that evaluations are important in their own right to gauge where a child’s growth currently stands…don’t let anyone hamper your vision of your child.  Don’t ever stop seeing your kiddo as the whole and brilliant child that they are because different is not less.

Always dream.

Always hope.

Always raise those expectations and goals.

And just when you may be falling into that puddle of tears, remember….SPANISH…because Spanish homework papers don’t lie. It’s right there…in brown and white.

Sparkle On, my friends.

 

 

 

The Trouble With Autism

autism sparkles-147

I am hesitant to confine my son to labels.
Yes, labels do serve a purpose with insurance, therapies and school districts but they also have this pesky way of defining and confining based on inaccurate definitions and beliefs in a world that simply refuses to see beyond the letters of a word they don’t understand.

Autism is a big word. Just six letters but every single one of those six letters seems to be weighted down with inaccuracies and apologies by those who fail to see it fully. I wish others could see more than just the letters of the word. I wish they could see just how deeply I mean it when I say different is not less and autism is brilliant if you let it be.

Autism is so often a term spoken with great prejudice by people who keep perpetuating those old and tired stereotypes that inevitably try to confine my boy into a world of can’ts and won’ts while they fail to see the brilliance and sparkle that fills his spectrum.

I wish the world could take a large step back and see the brilliance in those letters.
I wish, for just one moment, the world could see and feel autism through my eyes because, if they did…if they saw autism through my eyes, I would never see another apologetic set of eyes looking back at me.

Autism is brilliant, my friends. Simply brilliant.
Not perfect.
Not always easy.
Not always simple
But always brilliant.  Always, always, always brilliant.

Sparkle On, my friends.

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.

Superman Is Okay

autism sparkles-325

I was looking back through pics tonight.  The little guy pics of my spectrum kiddo.  The pics of the boy when he was one and two and three.  The pics I took during those moments of his childhood when autism was starting to swirl in our life.  I look at my spectrum kiddo in those two and three year old pics and it’s as though it was yesterday and I can still remember.  I remember how the new weight of autism felt in my life and how he behaved and how I despaired about the future.  I remember the pieces of paper I kept all over the house, upstairs and down, that counted the words he could say.  I remember how hard I worked at listing each and every word we could hold on to so that I could have a number to disprove the doctor.  I remember having fourteen when the doctor said we should have a hundred and then having just forty six when we should have had five hundred and how hard I tried to remember if there were anymore I’d forgot to list.  Sleep deprivation from a mom of three under four does not always travel well with autism and specific recall.

I distinctly remember the helplessness that was so often simmering right under the surface of my composure.  I remember how I fretted and would become unexpectedly tearful any time I began to speak of him.  So much for my composure during those days!  I loved him so deeply but, being me, I was pretty darn skilled at rounding life off to the nearest disaster when I resided in that helpless zone.  I was even better at looking at the future instead of the now.  There were no game plans, support groups, no FB friends, not one person to help me see beyond the darkening curtain of autism that doctors were surrounding us with.  It felt like, in those early years, I was losing my boy.

He was distant.
He was quirky.
He had odd habits.
He was overly sensitive.
He was picky.
He was not social.
He did not talk.
His evals were abysmal.
His skills were limited.

I see that little man in the pics now and I can finally really see him.  I’m not sure I could at the time when I took the pic because all I could see in those early years was the fret, the worry and the autism that kept popping up in reports.  Now, with our journey traveling as far as it has, I wish I could have stopped the fret and the worry because now that I can truly see this kiddo who has grown up, I marvel at the weight we sometimes let autism grow into and how we let it cloud our vision and allow our own fret and worry to cloud the growth of our Supermans(and girlies) as they are developing.

Who he was, over the years, did not magically change.  He still owns every single quirky piece to some degree but, tonight as I look at him playing with his wii-u, he has certainly grown immensely and yet I also can see clearly he is very much still the same kiddo that he was at three.  NO cures, NO magic bullets, NO gurus for us….and yet I see him and he is also almost entirely different.  It’s as though the wiring in his body and his brain,at two and three and four and five, was way-jumbled up and it took time, more time than for his brother and sister, for the wiring issues to be worked out.  It took lots of extra years for him to grow his coping skills and he’s still quirky and he’s still got his odd habits but….it’s okay.  It’s really okay.  Who he is….is very okay.  Superman is okay.  Not perfect and not always easy but it’s fine and who he is is so much more than I ever could have imagined and this life we live with him is more than I could have dreamed up.

So, really…from the bottom of my heart….I’m advising you to simply relax.  Step in and work hard, sure, but also give the kiddos breathing room and understand that just because it’s not happening now doesn’t mean it’s not going to happen.  Let them be kiddos and love who they are and don’t stop working on strengthening those weaknesses but do add a level of patience and fun to your bag of strategies.

Don’t be the fret-ball-o-tears that I was.

My boy, my wonder, my Superman of autism, is exactly who he is meant to be but I wasted a LOT of time in those early years grieving some image that I created in my own head of who I thought he was obligated to live up to.  How silly is that?  And, you know what?  Not only does life not work that way but, more than anything, that’s not fair to him.  It’s not right to predetermine who we expect our children to be because of some selfish vision we have in our own heads.  Let them evolve into who they are meant to be.  My boy, with all his quirkies and imperfections, is entirely himself and he is perfectly HIM. My goodness, he is Superman!  He will continue to grow and change and morph into just who he was meant to be and I will take a deep breath, fight every fight to clear his path, support his growth, strengthen any weaknesses we may find along the way and, every day, I will keep on marveling at the miracle he is in my life.  Simply the very best version of himself that he could possibly be.

I am still gobsmacked that the two year old boy in those baby pictures grew up to be Superman, my Superman, and I am the lucky one who gets to help him adjust to this journey because this world really needs more kiddos like him.  Marvelous souls who can share with us all the textures, striations and brilliance that are privy only to their spectrum eyes and, I tell you honestly, that’s a much more striking image than the cookie cutter vision that was floating aimlessly around in my head on the day he was born. He is so much more than I ever imagined and I am finally able to see that brilliance takes time to develop.  Mysteries are not unraveled in an instant and Superman was not grown in a day. Take that deep breath and remember, with patience and lots of love, they will continue to grow into the super heroes they were destined to be.

Sparkle ON, my friends!!

Superman is Autistic

autism sparkles-21

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.