Rebel With A Cause In The Land of the Jiggly Shades of Gray

autism sparkles-60For a few years, I will admit I lived in a hole.

I did.

It wasn’t a denial hole.  It was more of a “I-don’t-know-where-we-fit-in-so-we’ll-simply-fit-together” kind of hole because even the doctors, at the time, were more confused than helpful. We simply didn’t fit easily into the classic autism mold nor did we fit into the black and white world of typical development so we took ourselves out of the mix and fell uncomfortably into the autistic shades of gray.  A place where the labels that generated such fear could not stick definitively to us, nor could those labels overwhelm or define us.

It was pretty clear, within the autistic shades of gray, the doctors over a decade ago did not  have their finger on the pulse nor did they have a comprehensive game plan to plug us into.  It was admittedly difficult for the medical community since autism is not a disease.  It wasn’t simple that way.  It was not like attacking a well choreographed disease whose protocol was firmly established. Autism, though as feared as any disease has ever been, was a whole lot different.  It wasn’t necessarily life threatening but it was life altering to say the least.  It was not contagious and yet the fear that surrounded it spread like wildfire through families.  By the time my boy was four, our heads were spinning with all the differing opinions a myriad of doctors held in regard to my boy.

Autism was becoming like jello.  There was nothing firm about an autism  diagnosis

Gray and jiggly, pervasive and yet still hard to nail down.  We’d heard doctors rally from yes to no and then to turn around to hear a third doctor’s emphatic “good-God yes” and a fourth announce “I don’t think so”.  I stopped counting our evals at seven.  Eventually, after a life time of never questioning the authority of doctors, of never saying no, my boy and I took our leave.  We stepped off the merry-go-round in order to concentrate on the boy and his needs.

Although I’ve never been one to ride the wave, to fall in with the majority or to skate along with the trends, at that moment in my life I was also not quite a rebel.   At the time, when autism first knocked on our front door, it was not always easy to stand alone.  It was not easy to buck the system, to fight, to push back and question those who shall not be questioned.  It was not easy to always be unpopular but, in time and because of the many good men who choose to do nothing, I came to find out…it’s good to be the rebel.

Actually, looking back and being very honest with you now, I will say that standing up and saying no, questioning and asking why, were very, very good.  You may have been taught, as I was, not to rebel but, I assure you, autism and the those Jiggly Shades of Gray, are the very place where rebels are needed. Rebels, when autism is your cause, are necessary.  It goes against the way I was raised back in the day but it is indeed some very good stuff to behold the Rebel With A Cause in the Land of the Jiggly Shades of Gray.

Standing up and asking questions, questioning the establishment, is the only way to really fight autism.  Knowledge, as they say, is power.  Knowledge and rebellion will open your eyes to the endless shades of jiggly gray that pervade autism.  And, as is often the case, what the doctors don’t know, you can find answered with other seasoned rebel-parents, online, in blogs or right within the eyes of your child.  Ten years ago, the internet was not the gem that it is for parents today.  A Google search for autism left me uninformed and mostly empty of useful information.  For me, circling our wagons and stepping off the merry-go-round and into the autistic shades of gray was the best thing I ever did.  I did not shun therapy at all but I looked at my child and consulted my own common sense before I made any decisions for his needs.

What I found inside The Jiggly Shades of Gray is simply, there is not a lot of black and white to be located…nor should you expect it.  There is, on the other hand, a whole lot of waiting and patience and repetition and love.  It is all at once complicated and yet simple.  It is not the medical rocket science I was led to believe in the beginning and yet it takes everything I am to keep the light radiating inside the Jiggly Shades of Gray.  It is indeed about perseverance, love, a lot of jiggly gray and mountains of hope.  No black.  No white.

I see my job in this life inside The Land of the Jiggly Shades of Gray where solid answers and maps are hard to come by, as his advocate, his cheerleader, his therapist, his navigator and his visionary side kick.  I try to look forward and to marry that forward vision with the reality of who he is.  My role is to build, to teach and to sculpt him into his very best self and to marry the autism into the rest of the boy that he is.  Yes…autism and those Jiggly Shades of Gray are in him still but we try every day to help those shades mix into the life that he lives so that all you see is the boy.  The autism is there…oh YES….it’s in there with its quirks but it is not all of him.  If I do my job right, I will help grow my boy, as well as his sister and brother, into adults who can be independent, who can live lives that fulfill them and who can be individuals who can navigate this life safely.  And, if I am very good, the essential essence of who this spectrum kiddo is will rise up and step forward into the whole world.  As he navigates his independent self right out into the whole wide world, the world will see how much sparkle and grace exist in The Land of the Jiggly Shades of Gray and, instead of pointing fingers from the Land of Black and White, maybe they will want to come in and take a look around at some of our lovely autistic shades of gray.

Of course, this is my dream and, at thirteen, we are not yet at the jumping off point where he takes his independent self out into the Land of Black and White but we still work every single day to get there because he is worth it and I believe, in my heart of hearts that kids like him are the bridge between the Jiggly Shades of Gray and the Black and white and their sparkle holds the key to uniting us all.  Let the mommas dream on.

Reasons To Love Autism: Moment #53

Blog 147

So, back in the fall, the kids and I went to to the mall to buy new clothes for back to school…simple, right?  Oy Vey…I thought so too.  But, with a fifteen year old, a twelve year old and a ten year old, well, you never really know what might come up.

It was all going pretty darn well according to mom-standards when we pushed our luck and went into the Vans shoe store.  The ten year old wore out four pairs last school year.  He is ALL boy, as rough and tumble as they come, and picking out two was a breeze.  He had his two picked out in less than a minute.  Teal with red laces and red with black laces.  Easy-peasy-lemon-squeezy.  He is my picky guy so I thought I was home free with his quick choices.

I was absolutely bowled over by what happened next.

It’s funny how autism and a different view of life can totally sneak up on you.  Sparkle moments are clever like that.  I love these moments but it never ceases to amaze me how much they catch me by surprise.  I never see them coming.

Mom: Hey, buddy, what color shoes do you think you want?

My boy: Naw, I’m good.

Mom:  What?  No Vans?

My boy: Naw, I don’t want any.

Mom: Really?  They’re pretty cool.

My boy: Yeah, see, that’s the problem.

Mom: It’s a problem for them to be cool?

My boy: Yeah, cause every day people are telling me how cool my shoes are. “Hey, cool shoes,” or “Hey, I really like your shoes.” I mean they do it all the time.  They’re always talking to me about my shoes!  It can really start to bug a guy, you know?

Mom:  Really?  They’re too cool to wear?  People like them too much?

My boy:  Yep, it bugs me, Mom.  I just want them to stop talking about my shoes.  You know?

Mom: Yeah.  It surprise me but, yeah, I get it.

At this point, when I have all but given up on him getting new shoes, the nice sales guy walks up right after I have stopped speaking.  In that moment when my mind is still tumbling over itself with awe and shock for the new lesson I have learned, still trying to process my boy and his feelings, the sales boy steps in with a lovely pair of gray Vans.

The young sales boy tells my son, “You’ll like these.  They’re the plainest pair we have.  NO one will EVER notice them.”

And, with that, my oldest boy smiled and said, “You’re right.  Those are pretty plain.  Okay.  I’ll take that one.”  And he did.  He didn’t even try them on.

That day we took home the teal pair, the red pair, the plain gray pair and one happy boy content with the gray pair that would not be on anyone’s radar.  And, they all took home a mom that was just a little wiser than when she walked into the Vans store because, truly, my kids keep teaching me new stuff every day.  I don’t know what I’ll do if they decide to stop educating me on the finer points of parenting!