Wednesday, November 10, 2010

Our little secret

For the past three Thursdays I have been participating in a Special Needs Blog Hop that the bloggers at Autism Learning Felt and Super Mommy to the Rescue cooked up last month.  Not normally a joiner, not ever having participated in a blog world meme, other than the rather ubiquitous Wordless Wednesdays (and only that when the mood strikes me) I found myself caught up in this, looking forward to Thursdays and another chance to hop around, reconnect with old friends and meet new Special Needs blogging brethren. 

I have one wonderful community here at Hopeful Parents, but I'm greedy, I wanted more.

The first week I had already linked up when I noticed there had been a question posed that we were supposed to answer in our linked posts. Oops, my ADD brain strikes again. 

The next week the question was: "How Do You Handle Stress?" and my answer boiled down to Community, Connection, and Support.  This is something I am so happy to have found in spades here at Hopeful Parents. Something I think we all actually need more rather than less of as time goes by.  There are quite a few support systems set up for when our children have been newly diagnosed, when we are entering the scary maze of therapies and special education, just starting to figure it all out.  But now, years in, when the daily grind is grinding us down to dust, support seems harder to drum up.  We are all so tired.  At the beginning our paths seem to be more alike, as we travel them they differentiate and become so individualized, our kids each settling into their own particular constellation of special needs, a snowflake alike no other. 

This past week the question was: “What do you love most about your Child?” and answering that was tough, for there is so much there to love.  As I was reading through my fellow blog hopper’s posts, what was striking me was that so many of the participants, actually most, if not all, answered that with a version of “I love his smile/laugh/happiness/sense of humor."  And, astonishingly, so many of these were parents of kids on the Autism spectrum, like my Jacob. 

Funny how the public perception of spectrum kids rarely meets the reality of our lives. Because, smiling, laughter, sense of humor, joyfulness?  All things kids on the spectrum supposedly lack. Say what? 

We all know our kids posses these qualities. But sometimes I think that it's our little secret. Because the general public, the masses out there who have not knowingly known a special needs child?  Have their perceptions shaped by the media and by outdated, outmoded stereotypes that seem to linger in spite of all the evidence to the contrary.

I am saddened that the joyless, humorless, literal-to-a-fault, non-smiling, non-hugging aspie is so often the popular face of autism these days. Maybe it’s a step up from Rain Man savant, or the constantly rocking, totally withdrawn, self-injuring severe autie that was all I pictured in my mind when the word "Autism" came up, pre-parenthood, pre-enlightenment for me.  But it’s just one small sliver of a fraction of the diversity of people on the spectrum. Hardly representative, and not much of an improvement.

And breaking these many stereotypes: that spectrum folks are robotic math nerds who will one day all work for Microsoft, for example?  It's a big job. And spreading the word through my little blog, presenting Jake in all his messy glory is my tiny contribution to the cause.  But we all know that storms of change are built tiny droplet by tiny droplet.

My dear friend Peter Flom, a special needs father and on the spectrum himself with NVLD, works hard to actively combat these stereotypes.  He is one of the funnier people I know.  And it irritates him to no end that most people think folks on the spectrum have no sense of humor. Here is one of his favorite jokes, and here is one of my favorite posts of his on his personal blog I am learning disabled.

I want to open up the eyes of the world to see our loving, loud, joyful kids full of smiles and jokes and their own suffusion of love and good humor.  ASD / SN kids are not devoid of emotion, not at all unloving.  They just express it in their own unique ways.  They may not always be “appropriate” but are they always truly and authentically themselves.  And a richly diverse group of sparkly snowflakes they are, indeed.

Know what I answered last Thursday after declaring it impossible to choose just one thing to love "the most"? 

My son Jacob’s big, cheesy smile

Of course.


Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

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