Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘autism awareness

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.

 

 

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Written by Spectrummy Mummy

April 2, 2014 at 6:15 pm

Wordless Wednesday 01 Apr 14

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Written by Spectrummy Mummy

April 1, 2014 at 4:43 pm

On Safari

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We went on a safari.  Yesterday we woke up even earlier than the kids to drive out to Pilanesburg, which is a game reserve about 2 and a half hours from where we live.  I wasn’t holding out much hope of success.  We’ve done a few self-drives before, and the kids just got bored in the car.  Now with driving for hours on top of driving for hours…I didn’t see that they’d be in the best of moods.

I wondered if we were ready.

Cubby likes giraffes, and along with zebras, we seem to have had lots of opportunities to see them.  I wondered if he was even bothered any more.

As for Pudding, well- it isn’t like you see Hello Kitty on safari.  She hasn’t shown much interest in animals at all.

It was a hot day, so we smeared on the sunscreen to the disgust of both kids- but tactile defensiveness doesn’t defeat African sun.

I’d hoped to set up my tripod on the seat next to me, but Pudding soon let me know that she was sitting next to me and nowhere else.

Was it going to be worth it?  

Then we started moving.  Maybe it was the bumping of the safari vehicle that appealed to her senses, maybe it was the warm African wind blowing in her face…perhaps both…but Pudding was happy. Not content.  Not just smiling.  Whole body fizzing in excitement.  Her feet were stamping, her arms were flapping, she was shaking with glee.  It was sheer joy- and as always when I get to witness such perfection- I was grateful that she feels in such a way that the whole world gets to share it with her.

Just movement and wind- we hadn’t seen an animal yet.

Just inside the game park, the ranger came to a halt.  I wonder how she’d react but she took it in her stride.  The ranger wanted to know what animals everybody wanted to see.  The kids at the front requested lions.  Cubby requested giraffes- I guess he still likes them.

I asked Pudding which animals she wanted to see.  Silence.

I still sometimes take that silence as a lack of response.  I should know better.  After a few seconds, she knew what she wanted: an animal that we hadn’t seen yet on any of our self-drives.

Hippo.

And what do you know?  Right after some impala, we got to see some hippos.  Most were submerged in the water, cooling off from the hot day.  But there was a baby hippo just standing by the shore.

hippo

Meant to be- just like someone else I know.  We lasted out three hours and took in elephants, lions, zebras and lots more.  Yes, we were ready, and yes, it was worth it.

I’m supposed to be writing a post about autism awareness today, and I have nothing.  This girl hasn’t changed who she is.  This world hasn’t changed for her.  But she is taking on more and more of it, and I feel along with her every fizzy, frothy sensation of glee just for being here.

Watch out world- aware or not- here we come!

 

Written by Spectrummy Mummy

April 2, 2013 at 6:26 pm

Lighting It Up Blue, South African Edition

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Last year we put a blue bulb in our porch light in a suburb in Virginia.  Even though we were just one townhome in a large community, we were the sole blue light.  Next year will be bigger, I thought….

This year was the first time South Africa joined in the Light It Up Blue campaign, and my friends at Autism South Africa went all out.  They persuaded some high-profile businesses throughout the nation to take part.

More importantly (and visibly), they secured funding to light up Table Mountain.  If ever there was an iconic landmark in the country- even the continent- a blue Table Mountain would get people talking.

Lighting our home blue hit a few hitches.  Unlike the US, this isn’t a porch country.  Our home is behind security walls and gates.  Not even our closest neighbours would have seen a blue light.  Then again, we have our own ways of raising autism awareness in our immediate community.

I asked Spectrummy Daddy if he would ask about lighting up the consulate.  Our diplomatic community has proven incredibly supportive to our family, and this was no exception.  I learned that not only would “our” consulate go blue, but after an impassioned plea by my persuasive husband, the Embassy in Pretoria would be joining in too!  I’m in awe.

I still have no camera, so my friend gamely agreed to take me on a blue drive as we took photographs of the consulate and the nearby Sandton City shopping mall which had joined in too.

Now, everything to do with the government works on a budget, and there was no budget for blue bulbs or filters.  Ever resourceful, the consulate staff came up with the idea of using blue cellophane over the existing security lights.  For me, being under-resourced just made the whole experience more authentic.  Anyone who has struggle to pay for autism therapies knows how to get by on a budget!

It is testimony to the photographic talents of my friend that we got this shot of a blue consulate.

While we were out, we couldn’t resist taking photos of Sandton City, which look incredible in its new blue hue.

Over in Cape Town, there was an electricity failure for part of the lights shining on Table Mountain.

Those of us who live in this amazing country are all too familiar with power outages.  For me, it just made the whole experience even more South African!

The impact wasn’t quite as dazzling as we might have hoped, but that will be rectified for tonight and the rest of the week.  I wish my friend and I could have gone to photograph Table Mountain too.

One thing I’m going to make a habit of- taking the Blue Trip to photograph the shining examples of autism awareness.  You don’t have to be the sole blue light with efforts this global.

I think it safe to say that this year was bigger.  Next year, I’m hoping for even bluer.

Written by Spectrummy Mummy

April 3, 2012 at 5:12 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

Historic

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I woke up today to the news: Osama Bin Laden is dead.

The latest in a series of historic events bringing change all around the world.  I swear I can feel the ground shifting beneath my feet.  I don’t know what the outcome will be of the push for change in the middle east, or what this event will signify for global terrorism, but I can’t help but hope, as always, for a better, safer world.  Perhaps my family will one day be safer because of these events.

In the meantime, we hold on until the plates stop shifting, and maintain vigilance.

April is over.

Autism Awareness continues in my house, and everywhere, every day of every year.  We’ve seen a month of historic change both at the political and personal levels.  Our fight carries on, but so do our triumphs.

We feel the aftershocks, and we keep holding on until the plates stop shifting.

So I begin today like anything other: hopeful and determined.  Celebrating victories, and preparing for the force of the impact.  Change happens, often when we least expect it.

Today both kids wished me a Happy Birthday at their father’s prompting, and gave me a card and gift.  But then after he had left for work, I saw Pudding had found a pen and looked over to see what she was drawing.

She handed me this (empty) envelope, with the words “Happy Birthday Mummy”, and a smile right between the eyes.

This year is going to be a good one

That is historic.

Written by Spectrummy Mummy

May 2, 2011 at 7:41 am

Sensory Integration and the Autism Spectrum: One Woman’s Experience

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Regular readers know that I tend to stick to telling stories about my kids, and my experience raising them.  Our situation differs greatly to those of other families touched by autism, though of course, there are some strong similarities too.  One thing I’m always conscious of is that these are my own words, and not Pudding’s.  She may interpret this whole experience quite differently as she grows.  And sweet little kids with autism spectrum disorders grow up to be adults with autism spectrum disorders.  It is the lifelong part that we sometimes forget in our rush for early intervention.  I don’t want this month of Autism Awareness to pass without acknowledging that fact.

I can’t predict how she’ll be as an adult, but I do know that I’m incredibly fortunate in knowing some remarkable women on the spectrum, like Lisa and Laura.  When Pudding can’t tell me how strange and uncomfortable the world seems to her, I have the benefit of listening to their voices.  It is a gift.  One I’d like to share with you today as I invite Laura to take the stage to talk about sensory integration.  It is an honour to have her here today.  Please give her a warm welcome.
4 Aspies, 1 house, that's...Life in the house that Asperger built

Sensory Integration and the Autism Spectrum: One Woman’s Experience

:walks up to the lectern…shuffles papers…taps microphone:

“Is this thing on?  Oh it is! Ok…ahem… Hello, my name is Laura, and I have Asperger Syndrome.”

:audience responds:

“Hi, Laura.”

“There are a lot of things I could tell you about what it’s like to be an Aspie, the difficulty navigating social interactions, the communication struggles, and the intense focus on special interests.  Today, however, I’m going to talk about the problems with sensory integration.  Scientists are just now coming to understand, and measure the extent to which people with Autism Spectrum Disorders have difficulty properly processing sensory information.  We complain about things that most others don’t even notice.  For many, these things will just be bothersome, or uncomfortable.  For others, however, they can even be painful.  Each of us is affected differently by this.  My problem areas are primarily sound and touch.

I am extremely sensitive to the way things feel on my skin.  I don’t like the feel of flannel for example.  Believe it or not, it feels rough and gritty.  I can sleep on flannel sheets, but only in long sleeved pajamas with pants (made of either cotton jersey or fleece), and the pillow case has to be regular cotton.  I cannot put my face on a flannel pillow case.   Not only is it rough, but it’s too hot.  Also, regardless of the time of year, I must have a heavy blanket or comforter.  I need the pressure in order to get to sleep.  Otherwise, the sheets feel wispy and light.  They brush lightly on my skin, and that gives me the willies.

Light touch on my skin, generates in me the same reaction others have to hearing nails on a chalkboard.  And while we’re discussing chalkboards, I really can’t stand the feel of chalk.  It makes all of the hair on my body stand straight on end, just thinking about it.  My list of tactilely disturbing things is actually somewhat long.  In addition to what I’ve already mentioned there is:

  • The feel of someone softly stroking my hair, arms or back
  • Anything, except for shoes and the ground, touching the soles of my feet
  • Crisp, tight cotton blouses, specifically the sleeves
  • Limp handshakes
  • Someone resting their hand or arm on my shoulder
  • A light breeze against my skin.  On this one, I will actually put on a sweater even if it’s a hot, light breeze just because I don’t like the feel of the air moving across my skin.

There’s more but I think you get the idea.  Essentially, I’m super sensitive to light touch, and things that are tight or rough.

Sound is another area of sensitivity for me, but it is harder to quantify.  I definitely have a problem with things that are too loud, except sometimes “too loud” varies.  I’m always upset by sudden loud noises, and for some reason all of my sound sensitivities are magnified 10 times or more when I’m inside a car.  I can sometimes be affected by pitches that are too high, but I am more frequently disturbed by pitches that are too low.  Some men speak in very baritone, gravelly voices, and it just sends me through the roof!  Just like with touch, my reaction to these is just like that “nails on the chalkboard” feeling.  But that’s not really so bad, is it?  It’s just a momentary flash of the willies, after all, right?  No.  The real problems start after that.

All of my sensitivities, once triggered, lead directly to incredible feelings of physical discomfort, and increased stress and anxiety.  In some cases, this can be resolved as easily as taking off the offending article of clothing, or leaving the room.  Other times, however, it begins a cycle that can be difficult to stop.  Once my anxiety starts to rise, I become more sensitive.  That leads to more reactions, which is followed by more stress and anxiety.  As this continues, I get increasingly cranky, which then leads to increased difficulties in some of those areas I’m not talking about today, navigating social interactions, and communication struggles.  It’s this spiral, caused by my hypersensitivities, that causes me the most trouble.

Not all sensory integration problems involve hypersensitivity, however.  Some involve being less sensitive than average.  In my case, I’m hyposensitive to taste.  It’s not that I can’t taste, it’s just that I don’t taste as well as everyone else.  For example, it’s been determined that I can’t taste bitter at all.  This actually proved to be a good thing for my mother who had her hands full with everything else going on with me.  Unlike, many on the Spectrum, my lack of tasting ability meant that I wasn’t ever a picky eater.  My mom put the food in front of me, and I ate it.  Not all hyposensitivities however, work toward the greater good.  There are some, like my daughter, who don’t feel pain as acutely as they should.  This can lead to dangerous consequences that require an incredible level of diligence on the part of caregivers and loved ones to prevent.

Issues like these are dealt with daily by people on the Spectrum, and those who love and care for them.  It is my sincerest hope that sharing this with you here today might help someone better understand a loved one, or feel less isolated in their own experience.  Thank you.”

:takes papers…leaves stage:

Written by Spectrummy Mummy

April 14, 2011 at 6:55 am