Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Asperger syndrome

Draw Something

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‘Cat,’ by Pudding_Girl in acrylics and tears.

On Saturday, we went to an indoor playground, with staff that watches your kids while you have a coffee in peace.  That is the theory anyway, what usually happens is that my kids see me having a coffee and decide they would like to order everything on the menu, particularly if it happens to be both unhealthy and expensive.

This particular place also had an art room, and following our success last week, I thought Pudding would be happy to give it a try.

I was right.

The staff member pointed out all the things that Pudding could paint for free, and all of the things we’d have to pay for.  Pudding sees a canvas, and determines that is her medium of choice.  I see the price tag, and vehemently disagree.  Then I see a cat in the free section.  I’m thinking cat…Hello Kitty…painting: this will be right up her street.

I was wrong.

Pudding immediately starts sobbing that she doesn’t want to paint the cat, she wants the canvas.  I hold firm, and she begins to paint, but cries through the whole experience.  Talk about moody artist.

Upon reflection though, I can see her point, whereas she wasn’t able at this time to see mine at that moment.  Her point is that she wants to paint something.  She wants to express herself on canvas with paint, not simply colour in something that already exists.  Really, I was denying her the right of self-expression, which must be the ultimate in frustration for a child on the autism spectrum who already struggles to express herself in typical ways.

Pudding’s ability to draw has also come on leaps and bounds lately.  She has always loved drawing, but the end result was very repetitive (perhaps intentionally so).  She has always enjoyed drawing people she is close to, now she is adding more detail: hair is long, short, or curly.  Clothes have pictures on them.  And she is moving on to drawing other things: houses with garages and cars, trees, and of course, showers.

A few weeks ago, at least a month after everyone who is anyone, I started playing the Draw Something app.  I adore playing in real time while on the other side of the world to the boy I sat with in school when we were Pudding’s age, even if my artistic talents haven’t developed since that point.

It is very interesting playing with other mothers of children on the autism spectrum.  To be good at Draw Something, you don’t necessarily have to draw well (though that helps, obviously) as long as you are good at expressing yourself in a way that your teammate/opponent will understand.  We mothers get to be pretty good at that.

It comes as no surprise to me that Fi of Wonderfully Wired and I have played so many successful turns that it stuck at 99.  Nor that Alysia of Try Defying Gravity finds a way to use positive reinforcement when my efforts are particularly successful.  Solo Dialogue and myself were both hyperlexic, and we are both far better as expressing ourselves through words!

But for me, the real draw (forgive the pun) of this app is the way I get to play with my daughter.  Games are so, so challenging for Pudding.  Or at least the games we’ve tried haven’t been right for Pudding.  Following rules that she doesn’t appreciate is tough, taking turns is also hard, and actually being interested enough to play to win?  Just not her.

But we play our own version of Draw Something that plays to her strengths.  Pudding can read a few words, perhaps twenty, but nothing like the number she’d need to read to play independently.  So with Daddy’s help, she is taught the word, and then draws it for me.  When it is my turn, she guesses my picture, then Daddy helps her pick out the letters to solve it.

I’d love to see a version where the word could be read out for the non-readers who play.  But for a social game, it definitely manages to avoid several of the things that generally frustrate us both playing more traditional games.

Sometimes she’ll freestyle and draw her own thing before she can be persuaded to draw the pick, but it just adds to the game for me- trying to work out what her drawing is, and whether or not it is relevant for my game.

As for her game, all that is important is that she gets to draw something.  One time her turn was “cat”.  She can both read the word, and draw the image, so she got to play independently.  Then again, whenever she is given her own blank ‘canvas’ she can express herself independently, and that is a thousand times better than just painting a cat.  Lesson learned.

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Written by Spectrummy Mummy

May 15, 2012 at 12:21 pm

Spectrummy Mummy to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012

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Dear “I wish I didn’t have Asperger’s”,

As I’m sitting here wondering what to write to you, I can’t help but smile at the contrast with my own Aspie.  Pudding is just five, and she is twirling in front of a mirror saying, “two Puddings.”  In her mind, the only thing better than Pudding, is there being more than one of her.  How right she is.

I wonder if things will change, if she will change.  If she views the many ways she is unique as a burden, rather than a blessing.  If there will ever be a time she types, “I wish I didn’t have Aspergers” into a search engine, just like you did.  If she does, I’ll feel like I lost.

I’ll feel like I lost my chance to show her all the many ways the world is a better place because she is who she is.

I’m not diagnosed with Asperger’s.  I’ve never experienced the many ways your life is profoundly more difficult than mine.  But others have.  They’ve experienced a lifetime of misunderstanding, ridicule, humiliation, and even abuse, and have taken it upon themselves to change things.  Because they know they don’t need to change, but the world does.

There have been some victories- efforts that have resulted in greater understanding, support and inclusion.  But there is a way to go.  Advocates and their allies are pressing on for greater awareness of alternative communication methods, sensory processing differences, the need for improved housing, education and support for autistic individuals throughout the lifespan.

You have to know that you are worth these efforts.  You have to know that the world is changing because of an incredible community that you are part of, because you have Asperger’s.  You are not alone.

The next time someone googles “I wish I didn’t have Asperger’s”, they’re going to find a whole community of support waiting for them.  Because of you.

The only thing better than you, is more than one of you.  Just ask my girl.

____________


For the last day of Autism Awareness Month, I’m taking part in the Autism Positivity Day Flash Blog event.  This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue.  You can find out more by clicking >here<.  

Please like, retweet, email, and generally share this amazing effort to raise awareness about the supportive and encouraging side of our community.

N is for Nearlytypical

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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<.

Written by Spectrummy Mummy

April 12, 2012 at 2:32 pm

Wordless Wednesday 11 Apr 12

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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

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

Including Pudding

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It had been a long day after another long night.  So long, in fact, that I’m writing about this day in the past historic tense, even though it was today.  Yes, today was that long.

My last task of the day (not really, but my last driving task of the day) was taking Pudding to her swimming lesson.  We go twice a week, and normally I don’t mind taking her.  Seeing her so happy in the water makes up for the inconvenience of going there.  And there is inconvenience.

Sometimes it comes in the form of Cubby, who always feels like he wants to come with us, until we get there and he remembers that sitting on a bench and keeping quiet is the opposite of what he wants to do.  Most times I’ll cave in and take him, but occasionally he chooses to stay with Ms. Leia until Daddy gets home.  Today, thankfully was one of those days, because with a nasty croupy cough, things could have been much, much worse.

Most of the time, the inconvenience comes in the form of driving the mean streets of Johannesburg.  There are all kinds of hazards to deal with, to the point that most days I’m convinced I’ve been sucked into a virtual reality game.  If I’m not avoiding kombi buses as they swerve across the lanes while continuously beeping their horns, I’m trying to avoid the erratic truck in front with about 15 men and building equipment piled into the back, or it could be a mother distracted by her toddler IN THE FRONT SEAT, NO CHILD SEAT OR SEAT BELT!!!

Worst of all, though, are the windscreen washers at the lights in this particular route.  That sounds nice, doesn’t it?  Someone offering to clean your windshield as you wait for the lights to change?  No.  It is an act of aggression.  No matter how you shake your head and say no, one of these guys will pull your wipers up, then soapy water will be sprayed on your clean windscreen.  And then if you don’t pay (because security has advised you to NEVER open your window, or in any way encourage this kind of activity), they will threaten you, try to pull off your wipers so you can do nothing about the fact that you can’t see, the lights are about to change, and the aforementioned erratic drivers are honking at you to move.

But I do it twice a week because Pudding loves it, and I’ve written here and here and here about what swimming means to her, and me by extension.

But today, the longest day after the longest night, the 15 minute journey took 50 minutes.  It had been raining all day, and traffic was even worse than usual.  Even though it was still raining, the windscreen washers were still out.  I managed to avoid an incident this time, but my heckles were up.

Pudding’s lesson is only twenty minutes long, with two boys also on the autism spectrum.  There are other lessons immediately before and afterwards, and it is a tightly run ship.  Even though we’d left the house earlier than usual, we arrived just at the end of the alloted time.  I predicted that Pudding wouldn’t be able to swim, but thought I’d try our luck anyway.

Her teacher graciously allowed Pudding to join the next class.  I wasn’t sure how well she would do.  This class had two other girls and two boys, and they were all neurotypical.  I watched her closely to see what would happen.

“New friends, ” she announced, and didn’t try to touch anyone, even though one girl was wearing a Hello Kitty swimsuit.  So, yes, her attention did wander a couple of times, but perhaps not even as much as usual.

And get this: when the teacher constructed a foam diving board, and had the kids walk and jump off it she…didn’t do the same.  She got down on her bottom and scooched along.  A pretty good method for someone whose balance is challenged and can only jump on the spot, not off something.  I wasn’t the only one who thought so, because Girl in Hello Kitty did likewise.

But then, get this: she did it!  She watched the other kids and imitated them perfectly.  She pushed herself to do something that she has never done before, and I’m pretty sure that was because of her peers in the group.

Now, lately, I’ve been mulling over the idea of inclusion.  Pudding has so far exclusively been educated in autism-specific environments.  There are pros and cons to inclusion, and I’m not certain that it would be The Right Thing for Pudding.  But when I see her step up and take a leap like that, it makes me think I should be ready to do the same.  I’ll write more about why this will be such a battle, but for now, just consider that including Pudding made this long, long day turn out to be not so bad after all.  Still, I’m ready for it to finally be tomorrow.

Written by Spectrummy Mummy

March 15, 2012 at 8:58 pm

L is for Love

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I told you she loved me- I just had to wait!

I know a lot of parents worry that an autism spectrum disorder diagnosis might mean their child will never know love.  All those challenges our children experience seem to thwart love and romance.  The communication challenges, both spoken and non-verbal.  The sensory challenge of being caressed.  Gazing adoringly into a loved one’s eyes.  They are barriers, for sure.

But I know my kid, and I know how she likes to hurdle her barriers, in her own way, at her own pace.

And I know love.  Love likes nothing more than overcoming the seemingly insurmountable.  Just ask the quirky English woman who met the odd American mere weeks before he left the country.  We had our problems of distance and communication challenges.  Rather than breaking us, it helped us to learn a different way of communicating, of being open and honest and prioritizing each other no matter how far apart we had to be.  Whatever directed us together, be it fate or pheromones, Love knew we’d find those lessons useful.

I don’t doubt Pudding loves me.  I know it though I’ve only had one spontaneous kiss on my cheek in five years.  I know it though she has voiced those words only a handful of times.  I know it when she makes me a Valentine’s Day Card, but I’m not allowed to touch it.  I know it when she’d can’t stand to be touched, and when being held isn’t close enough for her.  I feel her love.  I know her love.  Just like I knew the moment I saw her that no distance could ever break that bond.

When she was diagnosed, I learned that there would be challenges, but love won’t be an obstacle for her.  It will find her, if she wants it to.  All it will take is for somebody to see the magic of my girl, and if they are the luckiest human on the planet, she’ll see the magic in them too.  Love won’t weaken in the face of those challenges, it will teach her lessons she can’t learn any other way.  Just like it did for her parents.  I’m sure of it.

You know how I’m so sure?

When she showed me the Valentine’s Card that I may not touch, we were at her school, and her crush walked by.  I mentioned that she could have made a card for him.  Before Pudding even responded, Jimmy* spun around and agreed with me!

Somebody already sees the magic in Pudding, though he is going to have to wait a couple of decades to get past her daddy.  She’ll have plenty to learn about love during that time.  Like whether the barrier is Asperger’s or the Atlantic, she can overcome anything that comes her way, and Love will be with her always.

This is the long overdue L installment of my A-Z series.  If you think I’m a little hypocritical for writing a love post on Valentine’s Day, just remember that my only constancy is how fickle I am, but I really do love you every day of the year!

Written by Spectrummy Mummy

February 14, 2012 at 5:28 pm