Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘World Autism Awareness Day

Aware

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It seems every year, at this time of year, I’m torn. It is World Autism Awareness Day. Again. Our fourth since Pudding’s diagnosis. Those years have seen a shift in me, the way I perceive autism, and the ways I want the world to acknowledge this day of awareness, or this month of acceptance.

It has been a quiet few months on my blog, but a busy few months in our lives. We’re facing another international move, another continent, and the process of withdrawing from one set of supports, and establishing a whole new set. We’re reevaluating what works and what doesn’t. What is responsible for her progress, and what else we could add to the mix to enhance it.

And yet, for a time of such changes, life has been incredibly stable. For the first time in years, I think our family doesn’t seem so different after all. We work, go to school, read books, go swimming, go on vacation. We live, just like the rest of them.

Perhaps because we have found (or created) a place of inclusion and acceptance, I don’t feel the fire of awareness that burned me these last few years. I don’t feel the need to light my workplace up blue, nor even my home. Blue isn’t our colour any more.

This awareness thing, it burns on, even without my kindling. Here in South Africa, it is more talked about, more public each year. For the first time, Cubby’s preschool became involved in World Autism Awareness Day, and he was asked to dress in blue, and send in a donation to Autism South Africa. And all would have been well if it ended there.

But in his eagerness to tell me his duty, he mentioned that the money was needed for, “the children who are sick with autism.”

And that was when the awareness hit me again. The awareness that if I’m not the one talking to my children about autism, they’ll get their messages elsewhere. And while those messages may originate with the intention of fund-raising, or raising the charitable profile, they aren’t the right ones for us. Those messages are hurtful, not just for my child, but for the adult she will one day grow into. To a community that she already belongs to.

My girl isn’t sick. She isn’t even all that different, or her differences aren’t that great. Are they? She is just one of us. One of the things I most appreciate is how happy she is in her own skin. She loves who she is, and she dares all around her not to feel the same way.

One day, inevitably, she’ll become aware of her differences, and how the world perceives her because of them, and I need to make sure that I am always aware of what messages she receives, and that we are giving her the right ones. Even when I don’t feel it is necessary, I’m aware that it always is.

 

 

Written by Spectrummy Mummy

April 2, 2014 at 6:15 pm

April is Autism Awareness Month

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Logo of World Autism Awareness Day, April 2, b...

Logo of World Autism Awareness Day, April 2, by UN (United Nations). Português: Logo do Dia Mundial de Conscientização do Autismo, 2 de Abril, criado pela ONU (Organizações das Nações Unidas). (Photo credit: Wikipedia)

I get it: you’re aware.  I’m aware too.  There probably isn’t a single day goes by that we’re not aware.

You’re also probably aware, no doubt, of the latest (and by latest, I mean from 2008) statistics from CDC about 1 in 88 children in the U.S. now identified as having an autism spectrum disorder.

Reports like these always generate a lot of media attention, asking lots of questions, though perhaps not always the most important ones.

This time last year, I wrote:

“…I wanted to let the readers know that 1 in 110 is not just a number.  That number is a person.  In our case, that kid is mine.”

Nothing has changed this year.  1 in 88 is still not just a number.  That kid is still mine.

We live on a different continent now, our lives have changed, and continue to change a great deal.  But the one thing I remain ever conscious of, perhaps now more so than last year, is the need for awareness.

Pudding was recently turned down from a school, because of autistic traits she displayed during the assessment period.  If there is a place anywhere in the world that can exclude my child because of the way her brain works, I need to keep doing my bit for autism awareness.

We’ll find somewhere else for Pudding, where she will be welcomed and valued.  She is one of the lucky ones.  That there are families here who don’t have access to an appropriate education for their autistic children breaks my heart.

That there are still autistic children and adults in this world who are abused and mistreated reminds me to never stop doing my bit for autism awareness.

A year had changed Pudding in many ways.  She is growing, changing, developing all the time.  She is expressing herself a little easier, and advocating for herself in small but important ways.  She is 1 in 88, and she is mine.  It is never about the numbers, it is always about the people.

I know that we need more than awareness, but it is the place we have to start.  Five years ago when the first World Autism Awareness Day took place, I held my infant who would stare up at a ceiling fan for comfort.  I didn’t understand.  We saw pediatricians who didn’t understand.

I needed awareness, I needed accurate information and appropriate interventions.  I needed to learn to understand how best to support my daughter.

One day, Pudding will learn she is part of this 1 in 88.  But every day, I’ll let her know she is one in a million.  She is mine.

Written by Spectrummy Mummy

April 2, 2012 at 2:23 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