Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Aware

with 3 comments

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.

 

 

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Written by Spectrummy Mummy

April 2, 2014 at 6:15 pm

3 Responses

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  1. Like you, my perceptions about autism have changed over the years. Every few months though, someone says something that is ridiculous, false, “foot in mouth” or plain wrong concerning Tay or autism, and I’m brought right back to the reality that the world around me is mostly unaware. And so, I plod along, baking cookies with autism messages, bluing my hair, bringing my own message of acceptance and love. Thanks for sharing what Cubby said. It’s a good reminder that though we may feel we are “blue in the face” with awareness, there are a whole lot of people who aren’t.

    solodialogue

    April 2, 2014 at 6:55 pm

  2. Beautifully written.

    Lisa

    April 2, 2014 at 7:44 pm

  3. I’ve heard people talk about autism like it is an illness, and it always irritates me. I once read a book by a mother who claimed that her daughter’s autism was cured by some sort of listening therapy… according to her, all autism is is very extreme noise sensitivity. In the book she mentioned seeing an older woman her adult daughter who was flapping her arms or something, and the author thought, “That woman must be very ill with autism.” I always remembered that one line, even though I read that book about 10 years ago!
    I hope Cubby’s use of the word “sick” for autism was just because he didn’t completely understand it… I would hate to think that the teachers at his school were actually telling the children that autism is a sickness!

    Angel The Alien

    April 3, 2014 at 4:24 am


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