Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for April 2012

N is for Nearlytypical

with 7 comments

N is also for neurotypical, normal, and non-autistic.

I’m the mother of two children.  They are both verbal, affectionate, sensitive, intelligent, funny, devious, and have occasional problems interacting with others.  My daughter is diagnosed with an ASD (and ADHD), and my son isn’t.

When he was a baby, and Pudding had recently been diagnosed with Asperger’s, I enrolled Cubby in a sibling study.  From the first session (at 10 months old) they found some small concerns about his development, but he never met the criteria for autism.  He was found, at various times, to have difficulties with joint attention, anxiety, fine and gross motor delays, sensory issues, and low muscle tone.

In the last few weeks, we’ve seen some additional behavioral problems thrown into the mix.  He is becoming more aggressive, both at school and at home.  He isn’t responding well to discipline, and is explosively emotional.  In many ways, he is more challenging than his sister was at this age, and 3 was a tough year for her too.

Interestingly, some of the techniques we used on Pudding, work well on Cubby, and others he rebels against entirely.  He loves a social story, and enjoys routine, as well as being “talked through” what is going to happen.  We’ve had no success whatsoever in trying to modify his behaviour through positive reinforcement.

Whenever I see a study comparing a group of autistic individuals against a control group of neurotypicals, I question if it is as simple as that.  Of course, autism is a spectrum, a diagnostic grouping of symptoms that describe a vast range of individuals.  I only have to collect Pudding from her preschool to witness how vast that range can be, and how severe some of those challenges can present.

But the similarities between these siblings seem to be more evident than their differences.  Cubby is a far more effective at communicating than his sister, both verbally and non-verbally, but she is more socially-motivated than he is.  While he isn’t autistic, it isn’t as simple as describing him as non-autistic, or neurotypical, or even (God forbid) normal.

I’m going to stick with nearlytypical for now.

All this was going over my mind as I couldn’t get to sleep last night.  The sheets were too scratchy, it was too hot for the heavy quilt, but there wasn’t enough weight with just a sheet and light blanket. It was too loud outside, and too light inside.  Maybe one day there’ll be a sensory spectrum.  Until then I might call myself nearlytypical too….though Spectrummy Mummy fits me just fine.

This post is a continuation of my A-Z series.  You can read the rest by clicking >here<.

Advertisements

Written by Spectrummy Mummy

April 12, 2012 at 2:32 pm

Wordless Wednesday 11 Apr 12

with 3 comments

I’m slightly cheating with this one.  Click below for Pudding and Cubby’s (almost) Wordless Wednesday.

Written by Spectrummy Mummy

April 11, 2012 at 5:54 pm

Something Blue

with 13 comments

It happened on this night.  After I was done crying, and Spectrummy Daddy had talked about ways we could make things easier on me, I went upstairs to bed.  Sitting on my bed was a small jewelry box, the kind that usually contains rings or earrings.

My first thought was that he’d had my wedding and engagement rings fixed after I’d had them cut off.  Which was odd, because my ring finger still bore a groove where the rings had become stuck.  It will actually take a few more weeks until they’re fully back to normal, though they aren’t as swollen as they were back then.

That meant it had to be a gift.  Very frequently, I’m aware that I don’t feel what I’m supposed to.  Perhaps something else I have in common with my girl.  I didn’t feel happy or grateful.  I was actually a little annoyed that he would think I could be bought from my sombre mood by a trinket.  I was also thinking of the many things we need over and above jewelry for me.  I thought about telling him to return it, we just couldn’t afford it.

For a while it sat there, unopened.  Then I let out a few more breaths, and decided not to turn a nice gesture into something that would hurt us both.  I opened the box.  Inside was a beautiful blue-violet tanzanite ring.  Now I knew we couldn’t afford it.  I tried it on the ring finger of my right hand, and it fit perfectly, like it was meant to be there.  Now there was no question of returning it- I didn’t even want to take it back off!

Spectrummy Daddy came upstairs and filled me in on the story.  While I’d been inside the jewelry shop having my rings cut off, he’d been trying to keep the children occupied outside.  Pudding had picked out this one, and Cubby concurred.  I have to say- those kids have got great taste!

It was supposed to be for my birthday and Mother’s Day, but Spectrummy Daddy told me he felt that I needed to see right then how much I meant to all of them.  I haven’t stopped wearing it since, though I remove it a few times a day for some of the grubbier tasks that come my way.

Rings, while expensive, can be replaced, or fixed, or new ones can be bought.  I’m the thing our family can’t afford to be without.  I’m just as precious to my family as they are to me, and right now I need to treat myself as something fragile and valuable.  Now I have something blue to remind me of that always.

Written by Spectrummy Mummy

April 6, 2012 at 2:17 pm

Wordless Wednesday 04 Apr 12

with 3 comments

Blowing out candles is harder than you think with low muscle tone.

Good job he only had three this year!

Written by Spectrummy Mummy

April 4, 2012 at 12:20 pm

Lighting It Up Blue, South African Edition

with 6 comments

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

with 12 comments

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