Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Autism spectrum

The Autism Dream

with 6 comments

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.

 

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Written by Spectrummy Mummy

May 31, 2013 at 3:50 pm

Mother Like Me

with 7 comments

After yesterday’s post, I had some people question why I didn’t react more to what happened during our flight.  It is a valid question, and one that had whirled around my own head ever since Saturday.  You see, my instinct was to protect my children.  Adrenaline was coursing through my system, and my body felt like it needed action.  My brain even pictured the various actions which would have satisfied it- all were physical, and all of them would have landed me in trouble with aviation security.  But I wasn’t thinking about that.

I was thinking about what the children would do if I raised my voice, or had a physical altercation, or even moved to argue face to face with the man in front.  Pudding had already had a meltdown over the change of seats.  A meltdown during which she became violent, briefly clawing at my face with her fingers.  Pudding is not usually an aggressive child, but she already felt threatened, and was lashing out. And this was with me being calm.

If I get worked up, if I raise my voice, if I give in to strong emotions, it is absorbed and reflected back at me by two people who need me to stay in control.  That isn’t to say that I never get angry, or I’m always in control of my emotions, but I do know that when I explode, so does everyone around me.  And I really didn’t need that.  Nor did the rest of the passengers crammed on to that painfully full flight.

Well, all apart from one, that is.

Before I actually confronted him, calmly, I’d spent several hours with Pudding and Cubby sleeping on me, peacefully oblivious to the barely-contained rage I was feeling.  Any parent who knows this forced calm- and I’m certain there are a few of us with children on the autism spectrum- know that this inertia is a hundred times more difficult than acting on our feelings.

We do it, because we can.  They can’t.

We can take a deep breath, calm ourselves down, refuse to let things escalate.  My kids don’t know how to do that yet.  They are learning, and like with many of life’s lessons, they need them modeled time and time again.  Even when there are jerks within hitting distance who totally deserve it.

Now, maybe you have children who don’t follow your every move, hear every word you say (even if they conveniently don’t pay attention at times), or detect every change in your pitch.  That way you don’t risk the same consequences.  Maybe you haven’t had years of learning to show Zen when you feel anything but.  I’m glad for you, and I’m jealous of you.  You don’t have to hold it all in until you find a suitable outlet.

Believe me, it gets hard, when you mother like me.  Certain situations are just harder.  But at least when the gory fantasies (I’m always like Buffy the Vampire Slayer in my daydreams) I had of what I could do when the plane touched down and the kids were handed off to the husband didn’t get to come true, I can always write about it here.

Because some how, some way, this stuff has to come out, if you are going to mother like me.

Written by Spectrummy Mummy

January 8, 2013 at 6:01 pm

No Distance

with 3 comments

For the last week or so, our family has been on vacation.  So when the tragedy in Newtown, CT took place, I followed the aftermath through my phone on Facebook, and occasional news headlines that made it through to South Africa.  I wasn’t able to blog, and refrained from a brief statues update when that couldn’t possibly convey the range of emotions I was experiencing- both upon hearing the news, and then observing the media reactions.

When you live a life like ours, this feeling of distance is always present.  I’ve been a US citizen for five years now, which is often deemed not American enough by some to comment on news or politics- even when, as a federal employee, it affects me more directly than most.  And then again, if I mention something happening in my native UK, I’m dismissed as someone who hasn’t lived there for years.  If I try to explore what is happening in South Africa, the country where I now live, I’m told I can’t possibly understand.

I don’t belong anywhere.  I feel for everywhere.

Like so many on hearing of the shooting at Sandy Hook, I thought of my own children.  Pudding is also in kindergarten.  It could have been her.

We don’t know why Adam Lanza killed the children and staff of Sandy Hook, but this hasn’t stopped intense speculation.  The media suggested that the shooter had Asperger’s Syndrome, and within days this association of violence, murder, and ASD was disseminated through news networks and across social media.  It didn’t matter of there was a formal diagnosis or not, here was a cause that people were willing to accept.  Blog posts have sprung up with family members outing their autistic relatives as potential mass murderers, and before long we have something like witch trials.  Facebook pages full of hate speech, designed to intimidate autistic individuals and those who love them.

Adam Lanza may have had Asperger’s Syndrome.  We don’t know.  But violence is not a criteria for that diagnosis.  Autism was not the cause.

I read many interesting rebuttals during the last week, but they still didn’t always sit well with me.  Many wrote that this didn’t happen because of autism, but rather mental illness.  Long before I became the mother of a child with Asperger’s Syndrome, I worked as a carer for adults with various physical disabilities and mental health problems.  I can honestly say that spending as much time as I did with people with such diagnoses as schizophrenia or bi-polar disorder, I felt no fear.  As is the case with autistic individuals, those with psychiatric disorders are much more likely to be the victims of violent crime than the ones carrying them out.  What’s more, both are far more likely to be the victims of violent crime than are neurotypicals.

On social media, I saw many parents who said they now feared to send their children to school, and were calling for armed guards.  I live in a ‘critical crime threat’ country, where my children do go to schools protected by armed guards.  Believe me, it doesn’t make me worry any less.

We do know that two of the child victims at Sandy Hook were diagnosed on the autism spectrum.  I can only imagine their parents’ heartache trying to come to peace with their devastation as innocent individuals are demonized for their autism diagnosis.  I’ve read several account of friends with autistic children fearing to send them to school- not because of the risk of gun crime, but the very real threat of bullying as a fall out from all of this.  There is potential for so many more victims here if we aren’t careful.

While I don’t want to get into a gun control debate, I have lived in a country where they were banned following a similar incident, and one where shootings are commonplace.  I know where I feel safer.

Perhaps having a more global perspective changes the way you view things.  One thing is certain though- I’m completely unable to distance myself from what happened last week.  I don’t know why this happened, but I know that unless we are careful with where we lay the blame, there is vast potential for many more innocent victims.

Sometimes you can only dispel myths with truth, hate with love, and the ugly with natural beauty.  Some friends created the Autism Shines Facebook Page as a way to challenge these misconceptions of autism.  I urge everyone to check it out, and perhaps contribute as an autism advocate or ally.

Written by Spectrummy Mummy

December 22, 2012 at 1:05 pm

Dancing Teapots

with 3 comments

I decided to take the kids out for an early dinner.  Today is one of those perfect Jozi spring days.  The Jacarandas are blossoming, but they’re not quite at their vibrant peak yet.  On a Friday afternoon sitting outdoors at a cafe in Sandton, you could be in Europe, only with better weather.  This is an unexpected treat for us all.  I was supposed to be having dental treatment, but the water was out- sometimes water and power outages are the only sign that this is still a developing country.  Developing being the right word, for all its economic slump, there is a lot of construction going on here, and sometimes the wrong pipe gets hit.

I sipped at my capuccino with cream, and enjoyed the moment of perfection, knowing it couldn’t last for long.

Pudding was content.  She’d had the Halloween Parade at school, which she’d loved.  She ordered herself a bacon and avocado sandwich and apple juice by herself.  Yes, it is the same thing she always ordered, but I’m pretty sure it is exactly what she feels like eating.  She isn’t just doing okay, she is doing really, really well lately.  She seems more comfortable in her own skin than I’ve ever seen.  The wind picked up and she turned her face to it, enjoying the caress to her skin.

Cubby was out of sorts.  I knew he hadn’t napped, and was too hungry and too tired to know what was wrong.  Normally very expressive, he was down to grunts and shouts.  He couldn’t decide what to eat, even if he wanted to eat.  A siren in the distance hurt his ears.  He was in and out of his chair.  Putting his hands in his drink and smearing it over the table.  Then he began playing with his spit when the drink was confiscated.  Finally he turned to tormenting his sister for entertainment.  The wind picked up, and he shrieked in pain as it whipped at his skin.

Watching the two of them was a study in contrasts.  Pudding, at peace; Cubby intent on disturbing it.  This was her two or three years ago.  This disorder and chaos.  Feeling something was wrong, and not knowing how to put it right.  How far she has come.

Then I let my mind wander further back.  I remember holding infant Pudding.  Apart from when she was nursing, (which I naturally did a LOT) she was screaming.  Arching her back, red-faced, furious at me for not fixing what was wrong.  And I’d go through everything I thought I knew about babies, wondering what I must have missed to make her thrash around like this.  She pulled at my hair in her rage.  The screaming made my head throb, and I wanted to run away from this tiny creature who put all her trust in me.  And though I wanted to shout and scream, I pulled her in closer, and kissed her downy head, and held her until we breathed together, just rocking and kissing, until the screaming was done.

I picked up Cubby and cradled him.  He resisted at first- pushed away, then caved in.  His floppy body curled into mine and I kissed his face.  “I’m a baby.”  He said, like he does so often.  I didn’t correct him this time.  I kissed his fingers and his arms.  He twirled his hands through my hair, just like his sister always had.  I kiss the soft nape, and when I close my eyes, I forget where I am, or when I am.  It doesn’t matter- I am mothering instinctively.

Three year-olds can only be held for so long, so I release him, and he dances for a while- trying to catch the eye of the waiting staff.  I turn back to Pudding, with her wry, contented smile.  I see what’s catching her eye: some paper teapots attached to the ceiling are fluttering in the breeze.  “Dancing teapots”, I say out loud.  “Dancing teapots”, she echoes.  We watch them together, and her hand creeps up into my hair, but in comfort, not in rage.

In that moment of calm, I feel all the many joys she has brought me.  All the dancing tea cups that I would otherwise have missed.  I know, if I have to, I can do it all over again.  Even if I still feel more rookie than veteran.  We’ll grow, and develop, and get there together.

I’m NOT Batman

with 6 comments

Far removed from the terrible tragedy in Colorado, and insensitive media speculation that managed to both diagnose an individual without having met him, and demonize those on the autism spectrum, Batman means something else in our home.

Cubby, like his daddy, has taken a shine to Batman.  He likes other superheroes too, and knows all the real names and those of the villains.  Spectrummy Daddy even made up a superhero story for Cubby, and his alter-ego, The Neme-Sis (get it?).

A few weeks ago Grandma sent him some Batman nightwear (complete with cape) and a Batman action figure.  Spectrummy Daddy couldn’t fit in the pajamas, so Cubby was allowed to keep those.  I’m perhaps married to the only diplomat with a Batman toy on his desk.  Then again, Spectrummy Daddy showed up to the consulate yesterday in his Batman shoes, so I shouldn’t be surprised.  Don’t worry, he doesn’t wear them to his meetings- he has his Batman cufflinks for those.

Because I’m nothing if not an enabler, I taught Cubby to say, “I’m Batman” in the trademark growl.  It is obscenely cute.  It doesn’t matter if he is decked up like the caped crusader- my blond-haired, blue-eyed little bundle of mischief doesn’t make for the most convincing Batman.

Yesterday morning was a hard one for Cubby.  He opened up his bottle of whine before 5am.  Finally Spectrummy Daddy had had enough, and deemed Cubby not fit to wear the pajamas he so covets.

“Batman doesn’t whine,” he told Cubby.

So our very own Bruce Wayne lifted off his pajama top, and patting his belly growled at his Daddy:

I’m NOT Batman.”

That was the first time I actually believed he could be The Dark Knight.

Today he told Daddy that he could his Robin.  I’m not sure where Pudding and I fit into his scenario, but at least I know that when life in our own version of Gotham City gets a bit too much for us, we can always escape to Wayne Manor with a certain billionaire philanthropist.  Hey, my boys aren’t the only ones who can fantasize!

Written by Spectrummy Mummy

July 28, 2012 at 1:01 pm

O is for Onwards

with 9 comments

Onwards.  Moving on.  That sounds easy, doesn’t it?  The truth is, moving on gets easier the more you move on.  There will always be bumps in the road, hitches along the way, but once you start the momentum, it gets easier.  Somehow, bouncing back gets easier the more bounce you have.

A little over a year ago, I wrote this post lamenting that a school wouldn’t accept Pudding.  It was the first time she’d been rejected because of her autism, and I was crushed.

We are about two and a half years from the time Pudding was first diagnosed with an autism spectrum disorder.  In the early days, I wouldn’t have been able to move on from such a rejection.  I’d have taken one person’s opinion as proof that the world will always be an unwelcoming place for my girl.

Even last year, I took that initial rejection as a defeat.  Now…it is a negotiation.  If a school can’t accept my child, they need to say why.  We can find a way to provide support, if they can provide acceptance.  If a school can’t, or if fear of Autism is the only reason for exclusion, it isn’t a place that looks at a child as an individual.  It probably isn’t a good place for any child.  Certainly not for mine.

I’ve been thinking about this as I talked to a friend about how I was beginning to feel uncomfortable in the direction an online support group had turned.  I appreciate that, like the autism community as a whole, this support group is divided.  I don’t expect everyone to hold the same opinion as I do, but I find it increasingly hard to read about autism depicted as a disease.  Or to hear about expensive and untested treatments as the epitome of being a “warrior mama.”

I’m not a warrior.  I don’t need to fight a battle.  We are diplomats, finding a way to negotiate the obstacles that we face.

We can’t expect schools, and society as a whole to include and accept our children, if we as parents aren’t ready to do that as well.  Like many other parents, in the early stages I found my daughter’s diagnosis was overwhelming.  I grieved for the loss of a life I expected to live, and struggled to accept the changes that would come our way.  I was stuck.

But all along, right in front of me, was a child who was always developing, just in a different way to what we expected.  Once I realized that she was moving on- I could do that too.  I didn’t need to hold on to grief.  I didn’t need to find radical ways to eliminate autism from my child.  She isn’t broken, or diseased.  She is human, whole, happy.  She is loved.

Pudding has taught me a lifetime of lessons in her 5 years on this planet, but most of all, she teaches me to keep going.  To let nothing stop us- to always find another way.  Now the very doors of a school that were once locked to us, are wide open in welcome.

There is another way, and we’ll find it together.  We just have to keep moving onwards until we get there.

This post is part of my A-Z series.  You can find the rest of the entries by clicking >here<.

Written by Spectrummy Mummy

May 29, 2012 at 2:37 pm

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

with 11 comments


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.