Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Autism Speaks

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

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

My Fight

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a shade of blue

Pudding hates DIY stores.  The ceilings are too high, the lights too bright, the smells too noxious, the noises too loud, the people too many.  We just can’t go there with her, it is unbearable.  Nothing makes it better.  So we just avoid them, easy as that.  Most often Spectrummy Daddy goes alone, but he was ill, and we really needed some stuff.  My Mondays are crammed anyway, but there was no putting it off.  Pudding was in school in the morning, so I took Cubby right after his music class.  He is more sensitive than she is, so I wasn’t sure how he’d do, but apart from a lot of questions about the various noises, he did okay.  Phew.

I only had a brief amount of time before I had to collect Pudding to take her to speech therapy, so I found an assistant to ask where I might find the first item on my list.  She helpfully pointed me in the right direction.  We admired the fork lift truck(!) for a while and then continued to source the rest of the items.

I’d almost finished, when I walked by the stand for the “Light It Up Blue” campaign for Autism Speaks.  I’d been intending to pick one up before April 1st, so walked purposefully over to the display.  Before I got there, I was intercepted by the assistant who had initially helped me.  She asked if I wanted to buy a blue light bulb to support Autism Speaks, and I said I did.  She placed one in my hands, then thanked me for “helping to fight autism.”

It stopped me in my tracks.  Fight.

We hear fight against cancer, and diabetes.  To her mind, autism is just another disease that needs to be eradicated.  Like cancer.  The autism epidemic.  Stealing away our children.  Only Pudding didn’t change.  She is the kind of kid that would have been missed in the past.  I believe there is an “epidemic” of kids who were previously undiagnosed.  Some of her symptoms became more noticeable, but she is the same person.  She isn’t stolen away, she is right before my eyes.  She is the freest spirit I know, who revels in the things that bring her pleasure, who really lives in her every moment.  She has no artifice, she is real.  I’m not sure she’d want to fight who she is.  I know I don’t.

Now I know adults with autism, and they are proud of who they are, and the unique contribution they bring to the world.  I wouldn’t dream of telling them they were diseased.

But then I have only experienced parenting a child who is verbal, who is considered to be “high-functioning.”  For all her differences and difficulties, she has less of a disability.  I know many parents are living a battle.  They have never heard their child speak, and witness only aggression and injurious behaviors.  That is their autism.  They would do anything to take away all the barriers to their child’s ability.  That is their fight, and they are right to fight it.

Don’t get me wrong, there are many things I would like to fight.  Her anxiety.  Her difficulty with language.  Her daily struggles with her senses.  But I find that when I get into a fighting stance against those things, it is Pudding who backs away.  She needs to be coaxed and comforted to move forward.

My fight is about accepting that I can’t do everything for her.  She will struggle, and I will have to witness it.

My fight is about getting her to the point where she could go to this very DIY store, or any other place that she struggles.  Or getting them to adapt for her.

My fight is about ensuring my girl is included, be that in school, the wider community, or in a magazine.  It is through advocacy where our punches seem to hit the hardest.

My fight is accepting that our lives are different from the way I thought they would be.  Acceptance, not an act of violence: submission that is gentle and tough at the same time.  The hardest fight of all.

My fight might not be the same as another mother’s, but we still fight together, and our fight will always begin with awareness.

I smiled at the assistant.

“I’m buying the light for awareness.  My fight is for understanding and acceptance.”

I hope we’ll be the winners.  Our loved ones are our champions.


If you haven’t already, please read and comment on the letter from Jess (A Diary of a Mom) to President Obama, asking him to light up The White House on April 1st and 2nd.

Written by Spectrummy Mummy

March 24, 2011 at 7:39 am

Why we walk

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Tomorrow I’m going to join Panda Pals, a group headed by Pudding’s teachers, as they participate in the National Capital Walk Now for Autism Speaks.

We’re walking because every 20 minutes, another person is diagnosed with an autism spectrum disorder.  Another family, just like ours, will be changed forever.

We’re walking to support the community that has supported us in the year since Pudding’s diagnosis with Asperger’s Syndrome.

We’re walking to provide assistance to those living with a lifetime of communication and sensory processing challenges.

We’re walking to fund research that will help to detect autism earlier, to help toddlers like Cubby to receive vital help for their development.

We’re walking for the parents of children who are newly diagnosed, and don’t know where to turn to.  Who need to learn a new way of communicating with their children.

We’re walking to show the world how proud we are of our special children.

We’re walking because every step leads us closer to understanding and acceptance.

We’re walking for them, because others have walked for us.

Please support our efforts by clicking here.

Thank you,

Spectrummy Mummy.

Written by Spectrummy Mummy

November 5, 2010 at 6:52 am