The Importance of Being Scarlet

autism sparkles-104So….a funny thing happened on the way to my blog yesterday and I was reminded how very fortunate I am to have experienced this journey with my boy.  My boy is brilliant. He is amazing.  He not only surprises me, he also teaches me every. single. day and I am a better human being because of him.  Every day, I marvel at the gift he is in my life and I have never understood what good comes from limiting him by labeling him with a giant red “autism” billboard across his chest because I want the world to see more than just that.  Folks, the truth of the matter is: Autism is not all of him because he is so much bigger than that.

Autism is simply one piece of my boy ❤

If you disagree and need to call me names, I’m good with that.  Sticks and stones, you know?  To me personally it seems unnecessary and divisive to the community at large but if it makes you feel better, I’m a big girl.  I am sugary and sparkly and all so, honestly, I own that.  If you see what I write as the “new scarlet letter”, it’s a funny good giggle to me but, okay.  I’ve never thought of myself as “edgy” but if you do, I understand.  To each his own.  To me, all I really see is that any kind of one-talent spotlight severely limits the world from seeing all of my son.  A one talent spotlight, in fact, concentrates the focus on just that one aspect of him.  To me, that is such a loss because he is such a diverse, complicated and complex young man and I will not define him by just one piece nor will I let anyone else do so.  I want to develop ALL of his gifts, all of his complexities, all of his pieces because I do not value one piece over the other.

I choose ALL of him <3.

The really great thing about my boy and our journey is that my boy is thriving.   He is excelling.  He is surpassing the expectations and low-bar reports written about him.  He is flying high in regular ed despite those early and dire predictions of nothingness and he is on the honor roll too….without assistance.  He is the little train that could and he is growing up as this sparkly inspiration that I marvel at every day.  On the other hand, if  you  happen to be able to shine your spotlight on just one aspect, if you can put the emblazoned six letter label across your child’s chest and get the same results for your kiddo, all the more power to you. I don’t judge because, the way I see it, we all choose different paths.

Like I have said before, I am not a follower and sometimes I meander right up and into the grain.  I am one devoted grizzly momma for my boy not so I can keep him dependent on me but rather I do everything I do so that one day, he can live his own life.  One day, when he is older, if HE chooses to be known as only autistic, if he chooses to concentrate on just that one gift, that will be HIS choice.  It’s not my choice to make.  I am here to develop ALL of his gifts.  He can choose to put a spotlight on the “few” if HE chooses but I will not make those choices for him <3.  You call me “sugary”, you can call my writing the new “scarlet letter”, I’m okay with that but I will not limit my kiddo for anyone <3.  His future is too important to me to do that but that is just how the sparkle in me rolls ❤

Sitting Inside A Crater On The Moon

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Standing in the hills above Kauai, just outside of Hanalei Bay, I took an emotional step back as I watched the scene in front of me begin to unfold.  I breathed a deep breath as I watched her strap the harness onto my spectrum kiddo as he stood two foot higher up on the platform than me.  The guide was calm as she strapped him in and then attached the metal clips onto the metal line.  The zip line was six hundred feet long and would fly my boy, solo, over a jungle valley with a stream sitting five hundred feet below.  My boy had no fear but mom had to take another deep breath.  A really deep and long breath.  The kind of breath you use when you are trying not to let the tears fall out.

As our zipline group stood and watched, they were not in awe.  They were not taking deep breaths. They were not witnessing a monumental moment.  It was my private moment because they were just watching a boy.  A boy.  No one else knew my boy was autistic.  It was an unnecessary badge to wear.  For our zipline group, he was just a boy.  JUST a boy.  It sounds simple but, for us and our last decade, it was a place, an idea, a milestone I wasn’t sure we’d ever reach.

As I took that hold-back-the-tears-breath, I also took a moment to marvel boldly at what was unfolding before me and, even though I did not voice it to anyone else, how far we’d come, how much we’d grown.  Once upon a time, a moment like this seemed like the impossible and yet, the straps and caribiners were proof that the impossible was coming true.  As the guide strapped the rest of the straps onto my boy, she asked if he was ready to go.  Even though I was not all that ready, he was and, quicker than I was ready to even process…it was ON and oh so very, very real.

Rebecca sent my boy off flying into Kauai’s blue sky.

Autism hit new heights right there before my eyes.  I was bubbling with pride.  I covered my tears but not my smile or the bursting in my heart.  I marveled at how he is so much more than the autism that tried to engulf him in those early years.  Looking back over our journey, our struggle, our tears, our triumphs, I realized I never expected this.  I realize, in those early years, there were moments when I feared autism might overtake us and yet we fought anyway.  Standing in that triumphant moment and looking back, I wondered if all my worries had really happened.  If all my fretting had been necessary.  I promise you, once upon a time, I was a fret ball…but thankfully, I was also a fighter.

Once upon a time, when we started on this journey, we hunkered down, mostly alone, in what felt like our own little crater on the moon, and we stood our ground…and we began to fight…and to stray from the mainstream.  We stepped forward into the fight and not once did we back down or admit defeat.  Never once did we cower.

Cry?  YES.

Cower? NO.

Never once did we say that giving in to autism was okay.  It’s not a dirty word, don’t get me wrong, but, if you aren’t careful, it can become a consuming word and it can take over everything else that you are.

And there’s something you need to know in case I haven’t made this clear….We didn’t follow the crowd.  I mentioned that…right?  It was hard back then to go it alone but I am so thankful now.  Have I also mention I am not a mainstream girl? I’m not that at all.  I won’t  pretend it and I certainly won’t claim it.  I have never chased the elite or their theories or philosophies.  Never once have I tried to be a follower.  And, in fact, the real truth is I don’t follow or chase well.  I’m not even a joiner and I have never felt the need to step in to the fads to be seen.  I don’t seek snake oil, magic cures or band aids.  And while I care how the rest of the autism community feels and is treated, I won’t be told how to see, treat or feel about autism or my kiddo.  No judgment, mind you.  It’s more like the Philosophy of Sparkles.  As a parent of a child who is thriving in the mainstream (despite the non-verbal, behaviorally challenged, dismal-evaluation-owning place in which he started his spectrum journey) I’m not navigating the spectrum in search of anyone’s approval.

Hard sometimes?  YES.

Challenging?  INDEED.

Lonely sitting in the crater on the moon alone?  SOMETIMES it sure is.

The truth of the matter is that, at times, my life with my son may well stand in opposition to what the elite says we should do or how we should present ourselves or what our expectations should be.  And, truth be told, I’m good with that.  Mostly I’m about finding what works for my son because the quality of the life he will lead is what matters to me because, despite what some others might think, I believe in setting the expectations high.  I believe he is capable of regulating his own behavior.

I believe the world is a good place and fitting in is something we all do in order to follow cultural and social norms/rules.  I expect my boy to learn the rules of the world and not to expect the world to  give him a free pass.  Autism is a part of us but it is not everything that we are nor will I give it that kind of weight.  I expect the world to treat him equally and my job is to give him the tools and support to get him as close to that equality as I can.

What my boy likes about all of this is that, though he is still quirky, his peers are now good with that.  He and the peers in his school seem to have navigated into a middle ground where my boy walks half way into the middle ground by regulating his own behavior and his peers then cover their half of the distance when they accept his quirky ways, choppy speech and lack of social filter.  And it’s okay with all of them and expecting more of my boy is okay with me.

Traveling this last decade on the spectrum with my son through the ups and downs, smiles and tears, fights and triumphs, sparkles and splatters, has been one gobsmacking journey we have not only survived but we have thrived in.

Perfect?  NEVER

Cured?  Not EVER.

Did we follow the leader? NOT ONE MINUTE.

Did we make everyone happy?  Um…that did NOT happen.

Were there tough moments?  Oh goodness YES.

Moments of doubt?  Oh heavens to Betsy, ABSOLUTELY.

Did we sit in the crater alone?  For MANY years.

Will I apologize for going against the grain?  Not one syllable because as I watched my boy fly off into those blue skies in Kauai, it made every day sitting in that crater alone and fighting worth every tough day we spent because the truth of the matter is the only thing that really matters to me is the independence with which my boy is able to face life.  And, I’ll tell you, flying over Kauai through nine separate zip lines and with a smile on his face made it feel like our crater moments might actually be ending and I’d be happy to finally trade that crater on the moon for a beach chair on Hanalei Bay or a carabiner hooked to any one of those zip lines because the road less traveled has left us in a better place than following or fitting in ever could have.  Sparkle On, my friends!!