Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for the ‘autism’ Category

The Autism Dream

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Last Day of KindergartenWork.  Work is busy.  Work is…American.  This is the American Dream.  You puts in hard efforts, and you gets big rewards.  We all buy that, right?

I remember when we first got Pudding’s autism diagnosis (actually, Asperger’s diagnosis, but I’ll come to that) how I thought that we could extend the American Dream to apply to this situation.  The Autism Dream.  I was a new immigrant to this unfamiliar land, you’ll forgive me.

If I worked hard enough, if we did enough therapies.  If we tried this therapy, or bought this app.  If we just put in enough efforts, we’d get the rewards we deserved.

And what would those results be?  TIme has changed my answer to that, like it has so many values I took as sacrosanct.  But back then, I hoped for results and improvements, measurable values that we can find in the world of work, but impossible to apply to my daughter.

Still, I had ambition, and I was prepared to graft.

Then yesterday came the results of our reevaluation, which were at once completely expected, and a shock that has left me reeling.  We need to do frequent reevaluations to apply to international schools and set up our therapeutic programs.  That whole free and appropriate education provided by law just doesn’t apply to us overseas.

And so now we find that the Asperger diagnosis, doesn’t apply to Pudding, and should never have been given to her.

“Her language skills did not continue to develop as expected.”

Rather, she meets the criteria for the new DSM-V Autism Spectrum Disorder, with the following additions:

– Language Disorder, Not Otherwise Specified

-Disorder of Written Expression

-Learning Disorder, Not Otherwise Specified

and maintaing her Motor Coordination Disorder and ADHD diagnoses.  Just words in stark black and white.

According to the American Dream, we would work hard and overcome these obstacles, not face more and more challenges as time goes on.  As happens every time I read one of these reports, I’m heartbroken at the difference between the way we view the same child.

Am I not working hard enough to make things better for her?

Hours after reading this report, I placed my girl on the bus for her last day of Kindergarten, and I saw the contrast I needed from the cold and clinical report.  She made an incredible achievement this year.  She has learned to read and write, advocate for herself, make consistent progress, and graduate from kindergarten.

She has gained the affections and support of her peers and teachers.  She has faced the challenge of a new environment, and excelled there.  She has earned her spot in a school, and a place in the community.  She has made me proud every single day.

And that is The Autism Dream for us.  It isn’t that we can work away her challenges, it is that she can grow and develop and match them.  On paper, she doesn’t look good.  In person, she is incredible.

I’d be lying if I said this was easy.  I’m crying as I type.  But I know there isn’t a report that could be written which could ever capture how amazing this child is.  I know, because I’ve written about her for years now, and I’ve barely scratched the surface of everything I could say about her.

The Autism Dream has never been about changing her to fit in, but revealing this world and our societal standards for the imperfections that they are.  She shows me truth, joy, and love.  She shows me what is truly importantl, and I never want to wake up from that dream.

 

Written by Spectrummy Mummy

May 31, 2013 at 3:50 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

First Aid

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Last week, I went along with the Consul General and the Community Grants Coordinator for a ceremony to mark the handing out of the very first Autism South Africa First Aid Kits.  I got to introduce my boss to the dedicated team that brought this idea to fruition.  We also toured an inner-city school for children on the spectrum.  I was immediately recognized by a member of staff as Pudding’s mother- she is such a superstar!

These First Aid kits are packages that Autism South Africa will send out to communities and schools in need to support their autistic learners.  It isn’t an autism unit in every school.  It isn’t specially trained teachers and therapists such as the wealthier amongst us can afford.  This is the most basic toolkit for those with nothing else, for true communities in need: rural, isolated, impoverished.

We got to meet some of the recipients of these kits, and I don’t know how I managed not to shed a tear as they talked about how tools as simple as a laminator and velcro were going to change the lives of children there.  Each kit contains strategies and tools, with a guide to producing developmental toys with limited resources and no impact to the environment.

The US Mission to South Africa provides the Self-Help grant that funds 80 of these kits, but the impact of these strategies is beyond measure.

Beyond measure…just like the potential of those given the right support.  This first aid may not be saving lives, but it is definitely changing them…for the better.

Written by Spectrummy Mummy

November 20, 2012 at 5:25 pm

Her Way

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We had our first parent-teacher feedback session since Pudding started Kindergarten.  When we’d first sat down, educators and parents at a large conference table, this was the time we’d earmarked to evaluate our experiment.  Because even though inclusion is commonplace in the US, what we are doing with Pudding is something different here.

So when we’d originally hashed out our plan, this was to have been the day we’d decide if it was working or not.  And if not, it would have meant removing Pudding from this school, and placing her back in a more restrictive environment.

But we knew it was working.  We knew without even seeing her work showing her progress.  We knew from her enthusiasm for school.  We knew from the care and dedication of her teachers that she was in the right place.

Pudding’s teacher told us (as we know) that there are days when she is bright, sharp, and switched on.  And also (as we know) that there are days when she can’t focus at all.  It is hard for a teacher to evaluate- is that progress?

Progress is hard to define in kids like mine.  Tests and measurements rarely show her potential, just her level of interest in being tested at that time.

Pudding started the school year by opting herself out of class most of the time.  She would start a group activity, then go to work one-on-one with the learning support teacher.  She was saying when she’d had enough.  She was advocating for herself by saying, in her own way, that she was overwhelmed.  And then as the weeks have gone on, she is choosing more often to be part of the group activities.  Inclusion, but her way.  I couldn’t be more proud.

And then there are the tangible ways that inclusion is helping.  Her teacher told me that, working in a group of three, Pudding had paid close attention to what her two friends were doing.  She’d coloured and cut out shapes just like her friends.  Not because she was told to.  Not because doing things the same way is right or rewarded.  Because she wanted to.  Inclusion, but on her way.

There were anecdotes galore about the ways Pudding interacted with her school friends, educators and environment that were just so her.  I could write a post for each of them, and maybe I will when I carve out some time.

But for now, I just want to show you this:

This is how we know she is making progress.  We know that where she is happy and comfortable, she will learn.    We know that once she was turned away, and now she is a poster child for inclusion.  The possibility of her leaving wasn’t even mentioned.  We know that she is where she is meant to be.  Now, that is progress.

Pudding’s teacher thinks so too, here is an email she kindly allowed me to share (possibly because I bribed her with french goodies)…

Dear Spectrummy Mummy and Daddy,

As I had a cup of tea and a macaroon, (thank you so much, they were delicious!) I reflected on my day of conferences.  It occurred to me that my conference with you felt a little different from the others.  Was it because I had seen 11 sets of parents before you and felt a little weary or was it because I felt more like a mini celebration?  I think it’s the latter.  Our last meeting together was when we put all our plans in place last school year.  I think we were all a little unsure of how this year would turn out for Pudding and it had a slightly sombre tone.

Today, 3 months down, I felt such a sense of relief when you walked in and looked happy.  I have felt intuitively that  Pudding was doing well and making progress.  It is so hard to do all the formal assessments with her that I do with other children and that hard data is so easy to report to parents.  Often the way I teach Pudding has to come more from a gut feel than from a book or program and as soon as I think I have her figured out and think something will work, she does the exact opposite.

All I know is that Pudding is learning, that she is happy and that she is loved at school.

Yes, she is.  And all because she did it her way.

 

Written by Spectrummy Mummy

November 13, 2012 at 4:57 pm

Freedom of Speech

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Sometimes my life seems to have very separate compartments, and you can divide them up quite neatly.  There is my life in the foreign service: as an employee of the State Department, and the wife of a diplomat.  Then there is my home life: as a wife to my husband, and mother to my children.  Then I suppose there is the side where I write and advocate.  Most often I wrote about my children.  Sometimes I write about autism and special needs.  Other times life in the foreign service.  But this is wrong, because I’m always writing about all of those things at the same time.  If they are my experiences, they are a unique blend of my past and my present, personal history and present geography.  In moments of clarity, I understand that the world isn’t black and white, but several shades of grey (not fifty though- get your minds out of the gutter)!

On R&R in England, foreign service life seemed far away.  We visited Durham Cathedral on September 11th, and I showed the kids how we light a candle for those who can’t be with us.  Our children are too young to understand much, but I told them that when things are dark, we have to light the way.

That same day, four of our colleagues were murdered in Libya.  Over the next few days there were violent protests directed at other US embassies and consulates.  It was a strange disconnect, being away from our foreign service community at that time, but seeing images, and reading friends’ status updates on Facebook as the action took place around them.

My brain wants things to be black and white.  It makes things easier to understand  if there are sides and good guys and bad guys.  This is how Cubby likes things to be.  He needs to know who is good and bad, who is right and wrong.  But it is more complicated than that.  It is wrong to make provocative movies, deliberately dubbed to offend religions and communities, to destroy the peaceful efforts and relationship-building that Ambassador Stevens and others lived for; then died for.  And yet without freedom of speech, what do we have?  Every time I post a blog, I exercise a right that many in this world don’t have, may never have.

So too, do those who are hurt or offended have a right to protest.  It isn’t wrong to protest- it is a democratic right.  Another kind of freedom of speech.  But violence against innocents is wrong, even if done in protest against abuses.  When protests came last week to our consulate, I thought more about the fear and potential threat- the dark- than the light of living in a society that permits and encourages the right to protest.

Freedom of speech is an interesting concept to me.  Words come easily to me, and I’m safe to express them.  What then, about my daughter, whose speech does not flow so freely?  How do I protect her rights?  One way, is respecting her expressions of protest.  Pudding can refuse, or dissent, or stay quiet, or walk away.  I’ve explained to her therapists before that her needs should always be respected, rather than corrected.  At times she can articulate those needs quite clearly, when she is overloaded, she cannot.

I’m mindful that this right I have is actually a privilege.  A power not extended to all.  And so, if I abuse that power, intentionally or not, others have a right to protest.  The grey area gets murkier, because words, particularly from those in power, can have unforeseen consequences.  Every time I write about Pudding, her autism, and our lives, I’m mindful of the fact that I’m balancing my freedom of speech with hers.  We’re all Ambassadors, all the time.  When things get dark, we have to light the way.

Written by Spectrummy Mummy

October 2, 2012 at 4:55 pm

Fan

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Back when we first started planning our trip to England, I wasn’t working.  By the time the trip came around, I was employed, and things were busy.  Not only was I new to the job, but the last couple of months are the busiest time of year, and then because of certain organizational changes, and certain people visiting, things were even busier.  There wasn’t time to think in those last few days, let alone pack, prepare the kids, and prepare the office.  Which means it was perfect timing for things to go horribly wrong.

In the week leading up to our departure, Cubby was ill, followed by myself and Spectrummy Daddy in quick succession.  We all recovered, and were feeling well by Friday, the day of departure.  I hadn’t been in the office for long when the call came from Pudding’s school that she was ill.  I raced out to get her, and out to the doctor.  She was feverish, and looked miserable, which was just how I felt.

Pudding was much more defensive than she usually is with the GP- a sure sign that she was ill.  With much patience and coaxing, the doctor managed to assess her, and promptly diagnosed Tonsilitis and a chest infection.  I must have looked how I felt, because the doctor told me she’d give Pudding some medicine, and she’d be fine to travel.  Really?  Yes, because I was her patient too, and she knows how much I needed to get away.  Pudding could be treated, and would soon be back to full health.

I asked our Regional Medical Officer for a second opinion, and he concurred.  The trip was still on, we just had to get the medication inside her.

That was easier written than done.

Pudding refused all medications, both tablet and syrup forms.  We tried mixing it into drinks, we tried bribing her, she refused.  She was not going to take that medicine!  And I wasn’t, I mean I just wasn’t going to put her through that flight without medication.  I couldn’t.  I didn’t voice it out loud, but I mentally prepared myself for not boarding.  Time ticked on, and we were sent to the gate, still without Pudding taking her medicine.

And then I saw it….a Hello Kitty fan!

Now, Hello Kitty is the tops for Pudding in terms of special interests.  But fans are the most stimtastic things for Pudding.  She learned at just a few weeks old that if she screamed if the fan was turned off, we’d turn it back on for her.  I remember Pudding not engaging in most of the assessments during her evaluation because there was a fan in the room, and she just had to keep telling us about it, and staring at it, and spinning like it.  Fans?  Fans are big.  Hello Kitty fans?  Colossal.  I instructed Spectrummy Daddy to furtively buy one.

And moments before boarding, I showed it to her.  She could have it, but she had to take the medicine.  And this time, no fuss, no fight.  She took it all.  Her temperature started to drop immediately.  And for the first time that long day, she was all smiles.

As we passed through the entrance to board the plane, one of the ground staff asked Pudding if it was her magic wand.  And of course, Pudding corrected her that it was a Hello Kitty fan.  She was right, but it was my magic wand.  And to England we did go by the grace of that Hello Kitty fan.  We ended up losing it a week or so later in some motorway services in the north of England with some other Kitty paraphernalia.

I like to think that some magic rubbed off to whoever was lucky enough to hold it next.  Because in spite of that truly turbulent start, the rest of the flight was smooth…and Pudding recovered quickly, and well, I’ll tell you some of the rest of our magical adventures another time.

 

Written by Spectrummy Mummy

September 26, 2012 at 5:19 pm

Artistic

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Pudding loves art, so it was high time we gave her the chance to indulge in an activity that focused on her talents.  This weekend I discovered a place nearby that was just perfect for us- an art studio where you buy a canvas, and all paints and materials are free to use to make your work of art.

Both kids enjoy the process of painting, they don’t usually care too much about the end result, but going to an art studio was different, and special.

I hadn’t counted on how busy such a venue might be on a Sunday afternoon.  It was crowded with lots of people, noise, bright lights and colours.  Coming down with a cold, my senses were under assault, and I could feel myself getting overwhelmed.  Cubby became more restless too, but interestingly, Pudding seemed to channel her focus into what she was doing.  Generally, rather than become more absorbed in an activity, she tends to withdraw and disengage in the face of potential overload.  Not this time.

Pudding still struggled with motor-planning.  She wanted to paint a heart in her picture, and asked for my help.  Frequently when Pudding draws at home, she gets frustrated that the image doesn’t match her expectations.  Here she didn’t get frustrated: she just kept painting until she was done.

This was a place where Pudding could express herself without the challenge of words.  A space where getting absorbed in her activity and tuning out the rest of the world was an asset.  A place where she could be herself: as an artist and an autist.

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Written by Spectrummy Mummy

May 8, 2012 at 10:46 am