Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Awareness

Beyond Blue

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I’ve been thinking a lot about this month and what it means.  Thinking, but not really finding the words to write about it.  I’ve read many articles and blogs about how we don’t need autism awareness now, only acceptance.  I’ve read about people lighting it up blue, refusing to light it up blue.

The first World Autism Awareness Day took place when Pudding was just a few months old.  It came and went without me giving it any thought.  I was an outsider.

Sometimes I still feel like an outsider.  Perhaps it is all these years of living as an expat- I don’t seem to fit in even where I’m supposed to belong.  Even when I’m fully in agreement with someone’s perspective, I seem to see another side.  I’m divided.  Conflicted.

I have my reservations about the Light It Up Blue campaign.  I’m concerned that Autism Speaks is speaking without listening to autistic adults.  

And yes, what good is awareness without acceptance?

But what if there is a fundamental lack of awareness?  What if, instead of the right to a free and appropriate education, schools (even private, special needs schools) refused admission because of an autism diagnosis?  What if there are barriers here that individuals and families have to face that I will never even understand, coming from a whole different world.

So when we lit up blue, it was in a spirit of solidarity.  Less about the charity that initiated this campaign, and more about how autism has connected me to people in this beautiful country who  I would never otherwise have known.  Like my friend who started a charity from her living room, because she knew that there wasn’t going to be one if she didn’t.  Or my friend Di– unable to find a school to meet her son’s needs- opened her own!

Or people whose lives have been touched and forever changed by knowing our daughter.  Her beloved teacher wrote to us this week:

I just can’t tell you how much of a privilege it is to be Pudding’s teacher (or Pudding being my teacher?)- she is a shining light.  Today as we got ready for Show and Share, she somehow got herself ready to talk to the group before we had even had a chance to choose who went first.  She had her picture of a spider (in black  – no sign of pink or Hello Kitty??!!!?) that she had drawn as she got to school this morning and put on the show and share table before assembly.  She is better at planning her day and being ready than anyone I know.  She then lapped up the limelight while she showed her classmates her picture and waited for the applause. How things have changed!

She continues to surprise me and teach me, but most of all she makes me smile.

Happy World Autism Awareness day!  Pudding has made me aware of so many things and I am so grateful!

 

And I think about one of my local colleagues who came to me today realizing that as I talked about my daughter, I could have been describing his.  Through awareness coming to understanding and acceptance.

And beyond South Africa.  I think of other people I’ve met through this blog, all over the world who are my heroes, my friends, my community. 

My girl wouldn’t shine blue.  She is all pink.  But she shines.  

For me it is beyond a campaign, beyond a charity, beyond one country.  I think of a whole planet with lights scattered all over.  Some of them may be clustered together, some may be the only light around.  We shine together.  

Maybe I don’t really fit in, but I still know I belong.  That might be what we all really need from this month.

 

 

Written by Spectrummy Mummy

April 4, 2013 at 8:58 pm

The Flow of Awareness

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It starts with a drop, which turns into a trickle, which becomes a stream, and then a flood of awareness.

My own journey to awareness started like that.  With a drop of realizing that Pudding communicating differently to her friend, to a flood of life-changing diagnosis.  But that was just my awareness.  That was never going to be enough.  I’m just a drop.  I talked here about how I’d tentatively, nervously updated my Facebook status.  A trickle of people knew about Pudding’s autism.  Then I began a blog, and it turned into a stream.  I talked to everyone I know, and everyone who reads here about autism.  But it doesn’t go far enough.

This is the month for awareness.  Everybody is sick of April already.  You all know autism.  Some of you know Pudding.  You wouldn’t be reading this without awareness.  Bloggers are sick of raising awareness.  They write about it ad nauseum.  They live autism.  They’ve raised awareness in everyone they know.  The stream stops there.  It stops flowing, it becomes stagnant.

When everyone we know has awareness, we need to keep flowing out to everyone we don’t know.  Because once upon a time, we were just a drop, and we were sustained by that same current.  It is hard to imagine there was a time when we weren’t aware, but for me this wasn’t even a long time ago.  This was why it was so important for our voices to be heard by Parents magazine.  Today, my post was published on their site.  All month long we are taking our stories to a new audience, displaying both the diversity of the autism spectrum, and the experiences of the families living with autism.  Spreading awareness, reaching out.  We still need to go further.

We need a flood.

That is where you come in, dear reader.

If you are a blogger, get out of your stream.  Write a post aimed at readers not personally touched by autism, and share it.  Parents Magazine is still accepting submissions.  I know many of you have reservations about that, so find another outlet.  Write a letter to a local newspaper, or post on  a non-autism site.  Link up a photo that encapsulates your life with autism, and link up for a Wordless Wednesday.  Here is the tough part.  Tell everyone you know to share it.

If you are not a blogger, or a writer, or even not personally touched by autism: share it.  Take one of the Voices of Autism posts, or any other blog post about autism that you like and “like it”, tweet it, email it.  Tell your friends and colleagues to read it, for Autism Awareness Month.  You’ll become a trickle of your own.

How do I know?  This isn’t my idea.  My friend S. who I knew from Luxembourg asked if she could email one of my posts to her colleagues.  I’d just been waiting here for people to come to me to read my story, content enough with floating where I am.  She inspired me to keep up the flow by beginning her own trickle.  For the rest of this month, I’m going to get out of my comfort zone.  I’m going to ask everyone I know to do this for me.  I personally find that more difficult than standing in front of The White House wearing blue.

To keep the flow of awareness going this month, we need a flood.  It starts with you.

Written by Spectrummy Mummy

April 10, 2011 at 8:19 pm

Lighting It Up Blue at The White House

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We joined a little late, but we were there to ask The President to Light It Up Blue.  The White House is still white, but one day it will be blue.  Awareness takes time.  Two years ago we had no idea that Pudding would be diagnosed with an autism spectrum disorder.  Last year on this day I tentatively updated my Facebook status and started to talking to everyone I knew about autism and how it had affected our lives.  A few months later I began writing this blog, and started telling everyone I didn’t know about autism in our lives.  It seemed fitting that we should be there.

One day I HOPE The President will CHANGE his lights to blue.  I hope he will shine a light on autism and raise awareness in a way that all the bloggers in the world together could never achieve.  For those of us who live and breathe, and talk and write about autism every day, awareness seems so unnecessary.  A blue light seems so redundant.  Then I think about the teenager who is bullied and ostracized because she is different, a man who is starting to understand why he finds it so hard to hold down a job, the child who can’t make friends, the mother who has never been called “mama” by her child, the soldier away at war fighting a battle on two fronts.  For those who have gone before us, those on the journey with us, and those who will join us one day, a blue light is so necessary.

More than anything I think of the mother I was two years ago, then one year ago, then today.  How much it would have helped to have seen a blue light shining.  To know there was someone nearby who gets it.  We wanted The President to light it up blue for everybody to see.  Our family won’t be here next year to ask him, but we will be lighting up our corner of the world.

At the end of the month, Jess will act as our emissary to The White House.  She won’t be alone.  The 565 of us who commented on her campaign to get The President to light The White House blue will be there in spirit.  If anyone can get this done, she will.  Awareness takes time.  It might take until the end of the month to get The White House blue, or it might take another year, it might even take longer, but it WILL happen.

The White House will be blue.

Written by Spectrummy Mummy

April 2, 2011 at 6:17 pm