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 out that way 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, 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 lace up my hiking boots, 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 exist on a higher level of the parenting mountain.  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 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 book describes they will have and 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 blank canvas.  And as we stare blankly back at our doctor wondering where our copy of the socially acceptable and coveted book on parenting 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 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 have for you, and what you need, is this blank canvas over here.  It’s brand new, just for you, because what you are adventuring into is path with no map, no compass…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 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 am not sure how but I will find a way to do this.  You are right in the middle of strengthening your resolve when you notice the doctor lift a small box off his book shelf.

“I have one more thing for you.  Your path is going to 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 right or wrong.” 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.  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 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 or rule book.  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, at the tip-top of the mountain, and is a marvel to the world…every single day.  Sparkle On, my friends!

9 thoughts on “A Love Note: To The Fearless Few

  1. Thank-you for this. I can’t tell you how much I needed to hear this as I didn’t even realize how bad I needed it until I read it. Thank-you from the bottom of my heart. This parent struggling with burn-out just got some renewed energy and hope. May god bless you greatly for that just as your post has greatly blessed me. ((hugs))

  2. Reblogged this on Accidental Thong and commented:
    From the lovely, generous, kind and oh so sparkly voice of Autism Sparkles comes a pep talk for whenever you might need it. Though you might want to save it for the witching hour or daylight as I just read it & it’s close to midnight & it’s treatment day & now I’m way too electrified to sleep. Good, potent, nourishing elixer….

  3. Reblogged because this is like chicken soup & Mama kisses for the gimpy hurting sniffly days we all have. Better than industrial strength latte. Thank you!

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