Life with Autism

Wednesday, April 16, 2014

Waiting for something different...

I guess my disclaimer on this post should be that I actually did let my emotions calm down for like a week before I wrote it.  This is actually, the edited version from what I wanted to say to what I did say.

Autism Awareness month is supposed to bring me such hope, such help.  But sadly for so many, it does neither.  So I once again find myself inextricably drawn to a personal project that helps me make sense of it all; because quite frankly I find myself wondering if my son really has autism at all by the time other autism organizations get done with this month. I mean, they make it look so glamorous that "autism" can't be what my son has.

According them, my son's autism is something to be celebrated and "lit up blue".   Everyone who wants to help someone is supposed to "go blue" and give lots of "green."

I guess I thought this month was supposed to mean something different.

Perhaps I'm wrong.

With all the celebration, lights, and picture perfect pictures of picture perfect kids - I'm thinking I need to have some more kids, "vax them up" and have more reasons to celebrate.

Perhaps I've just been on this journey too long.  Don't mistake my cynicism for depression or hopelessness.  Credit it for being tired of the status quo.

I can so relate to my son in this picture.  This is what this month represents to me.  It makes me want to hide under a blanket and not come out until May 1st.  I think it rather ironic that it symbolizes what this month does for our most severely affected children as well -- hides them and their real issues.  Their real needs.  It neatly tucks away the fact that we should be mourning the epidemic and protesting the senseless, greedy, misinformed acts that caused this tragedy to steal our children's health.  Not celebrating.

I've never been shy about my faith in God.  For me, my HOPEISM comes from Him, and Him alone.  That is what allows me to see all the good and perfect in my son.  That is what gives me such peace -- knowing there is a planner, plan, and purpose in his autism. 

I've devoted my entire "Life with Autism" blog to sharing that kind of hope, inspiration, encouragement.  That is for everyday.  That is for posting to others each day to encourage them in their journey.

But for this month of April, in this "Life with Autism" I must live, the kind of hope I need comes from action that translates into help.  Help gives hope.  Awareness is action.  Not more facts about autism.

I personally see autism organizations not understanding what April needs to be for so very many of us.  Or if they do, I'm just not seeing it.  It's not about an agenda, it's not about what's popular.  It's not about what will be safe.  It's not about being politically correct.  It's not about any of those things.  It must be about exposing the truth of what causes autism and a national action plan for the entire month that we all can get behind in some way, shape, or form.

So for me, for my son who I promised before a Judge during his guardianship hearing that I would advocate for and care for - I created this blog especially for this month to show pictures that represent certain aspects of his autism that need awareness, action, change.  Because at the end of the day, it's not about having been politically correct, it's not about whether I made friends or enemies, it's not whether I wasn't positive enough or if I was too negative.  It's not about anything but what I did to try and help my son now and for his future when I'm no longer here.  At the end of the day, it's him I must answer to.  Not a donor, not a board of directors, and not a seat on a committee.

My hope is that next year when I have to update his yearly guardianship form, on the question that asks, "Has the ward's quality of life diminished, remained the same, or improved" -- I'll have a better answer than this years reply of:  "remained the same."

As so many prior autism awareness months can answer as well ---remained the same.  The core group of us who gave up an entire year or more of our lives in planning and promoting the first ever Autism Rally and Congressional Hearings - in April - did not do that so that over a decade later, the way we do April, National Autism Awareness month, would remain the same.

Unlocking Autism didn't create their "Open your Eyes to Autism" picture boards so that over a decade later, April would remain the same.  The "A Call to Action" Quilt for Autism Awareness wasn't stitched together from quilt squares submitted from all over the world so that over a decade later, April would remain the same.

If someone in this day and age - in April - needs to know what autism is, they can google it.  We don't need to spend our time and resources going down that path.  It's not a dirt road any longer.  It's long been paved by the 1 in 500.  The 1 in 150.  The 1 in 110.  The 1 in 88.

Today, must our 1 in 68 continue to pave the same road to awareness or can we finally begin making tracks in the grass for a new road? 

Something different.

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