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.

A Love Note: To The Fearless Few

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Sometimes lessons slap you in the face so gently  you don’t realize you have been walloped until minutes later.  In that minute when the slapping wallop connects, the A-H-A moment steps forward and you  realize what has happened.

Today, I got a little bit walloped.

It started for me this morning.  I status-ed up our Autism Sparkles FB page with words I hoped would remind our Wonder Soul parents that though I am simply a type font on a screen, the wonder souls are in my thoughts.  I know many of our days will be rough and I wanted to wish everyone well for the day.  Give a little extra fuel, supply an extra boost of love, share my heart and let all the Wonder Souls know I was pulling for them.

Let me say I am not a world traveler or an international knower-of-things so it took me by surprise when one of our sparkle mommas let me know it was coming on evening in her part of the village and her day, as it closed, had been rough.  Her day had not gone smoothly, her child had needed her immensely every moment, had not once relented and the little one had even taken to biting her momma.  Our sparkle momma never blinked, she stepped up to parenting her girl and was truly the sparkliest momma I know.  And, as I’m reading what she has written, I know she is exhausted, emotionally wiped out and she has given her child every ounce of commitment and love any parent can give…. but I am not sure that this lovely Wonder Soul is giving herself nearly enough credit.

And, it occurs to me, I’m not sure that any of you do.

Let me say this loudly.  If I had a mountain at my disposal I would climb right up to the very tip top and shout this.  I would ‘roar like the sound of the sun’ until you heard my words.  Autism parents are a different level of parents.  What each and every one of you do every single day on this journey-without-any-rules is in a class unto itself.   Autism parents are the E-L-I-T-E.

You, my friends, are the tip top of the parenting mountain.

Some parents step up to normal.  I have two of those kiddos and I get it.  I did nothing different with them in my pregnancy than I did with my spectrum boy and yet the childhoods they stepped into are vastly different.  They have typical doctor’s visits and they usually follow along the precise benchmarks the rule book describes.  The parents of those kiddos, like me with my two non spectrum kiddos, have the luxury of delighting in their words and their musings and being impressed by their benchmarks and the normalcy of the childhood they are watching unfold.

From experience, I will tell you, this is an easier place to be.

Autism parents, though nothing has prepared them, have these indomitable spirits and they step up to something entirely different that, to me, is the equivalent of a blank canvas.  We all have walked into the same doctor’s office with the hope of receiving the parenting-normal-kiddos book but instead, we are handed a simple, white, sterile and blank canvas.  And as we stare blankly back at our doctor wondering where our copy of the socially acceptable and coveted book on parenting typical is, we are given an entirely different “welcome to parenting” speech.

We all known it doesn’t really happen like this but, for me, this is what it felt like as the doctor tried to pretend autism was not a gray diagnosis.  I wish he would have at least admitted how vague it was and how fearless we would all need to be in our journey through the spectrum.

In my mind, it feels like it should go something like this:

“I’d like to give you that other book,” the overworked doctor says, “I really would… but, you see, that book isn’t going to be much help to you on this other path you are taking so what I do have for you, and what you will need, is this blank canvas over here.  It’s brand new, just for you, because what you are adventuring into is a path with no map and no compass…it’s really just a general direction of travel.  Id’ like to give you more than that but, honestly, this is all I know right now.”

And, being the kind of parents you all are, you gather up the blank canvas while you hold back your feelings of fear and uncertainty and you say quietly to yourself, “I can do this.  I will find a way to do this.”  You strengthen your resolve as you watch the doctor lift a small box off his book shelf.

“I have one more thing for you.  Your path is going to be full of choices,” he tells you, “and you, as the parent and protector, will have to make some big decisions.  And, honestly, I can’t tell you which ones are going to be right or wrong for you.” He opens up the box and lifts out some bottles of paint.  As he holds up the first few bottles for you to see, he says, “Here is what I do know.  You’re definitely going to need red.  The red is for the speech therapy you child will have to go to, blue is for the OT and yellow is for the social skill classes.  I’m pretty sure you will need these first three and, honestly, after that, it’s kind of a crap shoot so I’m going to give you this whole box of colors and you can use whatever you think is right for your kiddo.  By all means, make it up as you go along if you need to.  There are colors for that too.  Just add the colors to the canvas as you use them and, before long, it’s going to turn into this masterpiece you never imagined.”  And the poor doctor, who feels powerless because autism is one of the few places where he has very few concrete answers, excuses himself as you gather up the new pieces to your version of the puzzle.

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That moment, you will recall later, is the very first moment that autism made you let out an audible gasp.  You gasp because even though you have the indomitable spirit, the overwhelming weight of parenting everything-under-the-sun is suddenly becoming clear as is the reality that there are no real answers.  There are hunches and advice from well meaning therapists, doctors and friends but there is no clear cut path for you to take to nurture your child and build up their weaknesses.  Apparently, autism will be just as beautiful as you make it.

No pressure right?

And that is the moment when the battle begins and you realize your child will absolutely be a masterpiece but it will be a masterpiece of your own making.   And, I have to be upfront and tell you, this kind of fearless parenting is not for the faint of heart.  Not everyone can do what you do.  This is the elite level of parenting where few dare to go.  Most parents would crumble under the stress and discomfort of parenting outside of the lines, of walking into the unknown, of filling the blank canvas.  We have all sadly heard the stories of parents who walk away from children with disabilities but I applaud each and every one of you Wonder Souls who stand up tall to autism every single day in the care and advocacy of children who did not come with any map.  I applaud every one of you Fearless Wonder Souls who add different colors to your canvas each and every day in an effort to do the very best for your spectrum kiddo on this mapless journey.

I don’t think you know just how incredibly unusual and remarkable you are.  Anyone can parent a typical child but it takes a Fearless Wonder Soul, to step up to autism and parent a child on the spectrum with the passion and commitment it takes to walk a path without clear directions, with no map, no compass…and to stand fearlessly as you walk beside your child down a shadowed path with no clear cut answers or universal truths.  My hat is off to you all and I hope, next time you are having a rough day, you take a long look in the mirror and realize you are looking at the face of one Fearless Wonder Soul who parents in the elite level and is a marvel to the world…every single day.  Sparkle On, my friends!

Superman Is Okay

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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!!

The Weaker Side of Fierce

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Today my unstoppableness stumbled a bit.

It doesn’t happen often but, as we all are simply human, it happens.

Maybe once a year or twice a year I lose my way.  I will very honestly say some days on this autism journey are harder than others.  I’d like to say there is a magic pill, a miracle plan, a way to snap my fingers and hold the answers but, alas, there isn’t.  Hard times are simply hard times and you have to find your way through them…no mater how ugly.

This time, my ugly happened to be cringe worthy.

It felt like my mask-of-unstoppable-fierceness was cracking wide open.  If they gave an Oscar for ugly, I’d have won it hands down.  I have been on this autism journey for eleven years now and I have been a solo parent for nearly seven.  I will be right up front with you and admit that autism alone is equivalent to autism amplified.  I am also not one of the solo parents who quickly took up with another significant other because parenting, as if turned out for me, happens to be an all consuming effort.  If you want to do it right you have to put both feet in because focusing on the periphery will not benefit your kiddos.  Keep-those-eyes-on-the-prize has been my philosophy.  Childhood is short and it can be fairly unforgiving and, honestly, you either get it right or you don’t.  It’s that way with all kiddos but autism simply magnifies that reality.  With autism, there is not a lot of wiggle room.  Committed, 24/7…period.  It’s neither good nor bad, it simply is.

It is also exhausting.

There have been moments when my fierce unstoppableness fades.

There are days when my reserves run low.

There are days when I lose my focus.

And, the crazy part, is it’s not unusual and, hold on for this little doozie of a reality check…it’s not just me.  No, really.   You might want to sit down for this one because I am going to give it to you straight…..the truth is, it’s going to happen to you too and, the good part is…it’s supposed to.

The part you have to be careful of  is what you do when it knocks on your door!

When I was at my bottom rung, barely holding on and questioning what this whole life is really about, I did this thing I don’t often do.  I did the thing that is often crazy impossible for unstoppable people like me to do.  I used my lifeline….I reached out to a friend I could trust. I would like to say I phoned a friend but that would be a lie.  I actually couldn’t talk on the phone, I wasn’t ready for that yet.  I was too close to completely falling in to my own puddle of tears so texting was all I was capable of.  I texted a dear friend from my childhood that I trust completely.  Someone who would not judge or scream or say that’s not normal.  He’s a friend who simply understood.  No judgement, just kindness.  I will tell you I can count on one hand the people I would trust those feelings to.  Taking the unstoppable mask off and opening one’s soul to talk of the places that hurt most is not for public consumption.  It is not to be bartered about and discussed over coffee so one true friend can matter bunches.

Bleeding hearts need soft places.

What I learned, after I came through the weaker side of fierce when my unstoppable stumbled, is that life and autism are going to throw you down in moments.  Sometimes they will stomp hard when you’re down.  Good, bad, or indifferent..it’s going to be that way.

What matters most is what you do about it.

In the first few years of the autism marathon your resiliency may radiate but, just remember, as you move into those later years, no matter how fierce you are, it’s going to hurt a little.  Not because you are any less committed or because you are not embracing autism in your life but simply because no one is immune to exhaustion…physical and emotional.

Exhaustion and weariness are part of the marathon too and they are necessary in moments.   Necessary because they make you stop.  Then, when you make it to the other side of the unstoppable stumble and you regain your fierceness, you will be stronger and your compassionate reserves and energy will be renewed.

Sounds crazy right?

Yeah. Maybe.  But the truth of the matter is that unstoppable souls are hard to slow down.  Sometimes you have to get knocked down hard in order to stand still long enough to let the renewal begin.  I honestly think that life has figured out that the only way to renew fierce and unstoppable souls is to stop them momentarily because constant motion is a tough place for renewal to take place.

The important thing to remember, and what I learned, is that the team you have in place is important.  Those trustable friends are worth their weight in gold and chocolate and cupcakes and anything else you value.  I happen to value cupcakes so I will go with that version.   Trust is hard to come by and is as priceless as that soft place to fall into.  You may not have a truck load of friends you would trust your heart with in moments of stumble but if you have one, that’s plenty.

One good friend.

One go-to person who will simply be there and will catch you in the moment when your unstoppableness fails.

That’s the important part to remember because the weakness is not the failure.  Weakness is simply part of a well seasoned soul.  Failure comes when we cannot admit weakness and our own humanity.   And though you may have super powers 99% of the time, that tiny little 1% is there to remind you when it’s time for Superparents to step back, phone a friend (or text) and let the superpowers be renewed because not reaching out is your only Kryptonite.