talking about racism

There is a debate on racism in Australia this week, and for good reason.

I have often been stunned by the Australian way to discard and excuse racially motivated remarks as “larrikinism” or “Aussie humour”. So I wasn’t surprised by the incidents and am glad there is a debate that now actually involves historic context and the voices of those concerned and victim by racism. Every single day in their life.

I am careful about the amount of “news” I let into my son’s life – and in his brain. He isn’t particularly drawn to television, preferring all types of electronic games and books, but we watch the news in our house and sometimes this collides with dinnertime.

I try to avoid this : Nemo gets sucked into the shocking images we see – on all channels – when something horrible happens in the world.  Or does anyone remember how we all laughed about ‘narrowly avoiding’ the END OF THE WORLD last year due to a misinterpretation of the Maya calendar ?  Except that it was not funny for my son who has difficulty picking up humour and irony – and wasn’t expecting it in what he had understood to be news shows. We had to do A LOT of explaining to help with the anxiety that ensued.

I was watching ABCNews in the kitchen this week and the reports on the racial slur against Adam Goodes came on (the FIRST racial slur of the week for him, the one by the 13yo in the stadium).

Nemo walked in on that and I thought it’s a good occasion to talk to him about racism.
Now, I am quite protective of Nemo’s online identity vs in real life, but lets just say that he has a part of mixed ethnicity and there might be a day where actually someone might pick up on his very “black eyes”. As a reminder, he is 7, has Asperger’s syndrome and we live in a middleclass dominantly white suburb of SE Queensland (Australia). We talk.

I asked him : “ Do you know what RACISM is ?”

He said : “Yes. It’s when people are mean to someone because of the colour of their skin. So if one is light skin and the other is dark skin. Mostly it’s against people with dark skin actually.”

Very right.  (Nemo says ‘light skin’ and ‘dark skin’ because in his mind, and quite factually, people do not come in either the colour WHITE or BLACK)

white-golliwog_l

things are not always black and white…

I asked him what he thinks WHY racism is mostly turned towards people with dark skin and not the other way around. Here is his answer :

“I think there is MORE RACISM AGAINST DARK SKINNED PEOPLE because there are MORE LIGHT SKINNED PEOPLE on Earth. “

Wait..What ?!

I was a bit surprised. I started telling him in my usual factual approach with my fact-loving kid how the population of our planet is composed of big batches of people who may not be all equally DARK skinned (we had to discuss the colour of Asians and Indians, i mad the mistake to mention ‘redskins’ too..). But they are all constantly the target of racial discrimination while they are most certainly NOT a minority on our planet when compared to the light skinned (as in Caucasian/western European ancestry). I really need to get some data on this..

But then I thought – He is not so wrong! One of the big problems with racism from white to black, as opposed to the other direction (which totally exists in both comedy and as a dangerous mindset) is that the prevalence of white racism is so strong and the voice of their victims has been powerless for SO LONG that you might really get the impression that they are actually a minority Worldwide.

Well, they are not and they definitively hear it all. People of ALL colours are listening, watching and hurting when yet another idiot makes a racist joke and then he, or others for him, finds all kinds of excuses. When this happens in Australia towards the indigenous population which has indeed been reduced to a minority – by the hands of the white settlers – and has clearly not recovered from the invasion of their country.. this doesn’t only make waves here. The world is listening too.

This is not about punishing this or another behaviour of a teen in a stadium or a public figure on the radio. It’s about taking REAL ACTION in the key sectors of our lives – schools, sports, media, culture – to change this attitude and make very clear to everyone, that casual racism is simply NOT OK.

I am hoping that my son will grow up seeing Australia change these things. Because a society that turns real issues into a joke and minorities into a laughing stock has a serious problem.

daily autism : SLEEP 2/3 – the toddler years Or the sleepy train is pretty late tonight. oh well..

This is a 3 part series about SLEEP in our house. Today – as a toddler.

Before Nemo was one year old, our ‘precarious domestic situation’  (sic), ended and we went into a phase of tremendous changes, adventures even: There were reasons for me to be rather unsettled and worried.  We went on extended overseas travels due to severe family illness and for immigration, we moved house a few times. Finally, we fully settled in Australia and ‘we got married to Awesome’.

Looking back, I believe I managed to do one thing : For Nemo, these were years of safety, activity and presence. He finally slept his nights through. We spend our days outside, on playgrounds, in parks, exploring cities, meeting children, people, animals. Wherever we lived, we played, read and crafted together. Every day. He was a very happy toddler in a happy toddler world.

And bedtime ? The ‘sleepy train’ I had been waiting for in vain for so long now came in the form of clear, understandable signals! So easy : standing one hand holding his head meant “uh, getting tired”; holding his head with two hands meant “ready for my bed !”. And it looked pretty cute too.

Now I remember clearly my parents’ “You’re tired. Time for bed” – always when little me was ready to party with the grownups! (Or so I thought). Not so with Nemo. With or without regular naps in the day, most nights, Nemo was happy to be put in his (travel) cot, and after some bedtime routine, it was ok for me to leave the room. Did he fall asleep ? No.

he would stand for hours in his cot and play with his hair, as if he just needed a bit of ‘a moment’ to think about the day.

My son has never ever fallen asleep while I was reading to him. He would occasionally fall asleep with a song – or the repetition of the same song for a good 20 min – on a very tired day. But most days, he would just stay awake – forever. Peacefully, he would sit or even stand in his cot and play with his hair, like he just needed a bit of ‘a moment’ to think about the day. And that moment lasted an hour or two…I would check stealthily, passing by his half-open door – and he would look right at me, like a little ghost!
the_thinker-600x450

PHOTO: FLICKR VIA KEVINLAW

But actually, I wasn’t worried about it. Ever seen the horror scenes of kids in “supernanny” not going to bed? Exactly. He got lots of sleep with the naps in the day.. Certainly, this would somehow arrange itself ?

Next part : sleep today.. shortly here.
Read here about Nemo, “Like a baby. Sleep.. pretty PLEASE!

Daily Autism : sleep 1/3 – LIKE a baby.. PRETTY PLEASE ?

This is a 3 part series about SLEEP in our house. Today – as a baby. train-cartoon-flat

When Nemo was a newborn, I was fully expecting some sleep deprivation and he did not disappoint: He slept long periods during the day, relatively peaceful when with me, but then got into a fury at what is considered “bedtime”. He had very sketchy sleep patterns all through the night.

Now there were a couple of reasons I wasn’t really thinking this was abnormal. There was the breastfeeding – I thought I would manage to regulate it somehow. I had read that human babies kind of need a 3-month adaptation phase to “life outside mum” – that still makes a bit of sense to me today.

Waking up to nurse him (often..) was no big deal, I went back to sleep quick enough but it did worry me when I could not figure how to “catch the sleepy train” that my clever parenting book was talking about. Oh, he’d catch that train in the day alright, but between 5 – 11 pm, even past midnight..Not a chance. My child was quite a nocturnal creature.

We were also living in what I will just call a ‘domestically precarious’ situation at the time, and it’s true, some days I there was simply too much going on for him to settle down. It was bad.

Autism was not at all at my horizon, but today I think that at least some of it makes more sense. A homeopath ended up deducing that my son was reliving his birth every night! Nemo’s birth hadn’t exactly been a smooth affair for the two of us, and the hours seemed about right, but I wasn’t exactly convinced.

I ended up taking all kinds of measures – that’s what we do when things really need to get better, right? Which one(s) actually helped is less clear in consequence… So was it those homeopathic pearls dissolved in his water? Or the loud white noise from the radio (and it had to stay ON)? What about the swaddle blanket – that I was so ashamed of I did not even photograph him in it once! He smiled once he was firmly tucked up in it. Total bliss!

flannelblue-300x300Today I am more thinking sensory overload with life on earth than inner birth clock on repeat. And I still think any baby might feel like this in the first month, but for my baby Nemo, it was SO DAMN INTENSE. And so it was quite intense for me too.

Oh, so that’s my job now – My child’s “advocate” ?

advocats

Last week I heard it 3 times.

You are the best advocate for your child.

Am I ?

I wasn’t actually familiar with the expression until I heard it from a teacher last year. The same teacher who had just let Nemo live his first 3 weeks in grade1 rolling on the floor and hiding under tables – without telling me about it!
When I told her that I will now find a solution with the principal, she told me the advocate thing, so encouraging! Obviously seeing no fault in her behaviour  (she had told me she had ‘special needs training’ before – for what it’s worth..)

So over the last year what I found is that people say that a lot to me, and it seems to mean  “Yeah, you’ll actually have to figure this out yourself” .

Now, my closest friends know that I have been a lioness for my son in the past, literally removing him from a hostile pack in my savannah and leaving for very unknown territory. All by my own.
Brave –  because I had to be, to protect him.

But this advocate thing? Not sure.

Of course, I will love him, support him and supply for anything in the limits of our possibilities. But I find it frustrating and complicated to find out what it is that we have access to, what can be supplied and by whom. By law, or privately, locally, or nationwide.

Why is that so damn hard ?

Yes, I have been handed brochures, am reading relevant websites, and am now in touch with professionals in school, a paediatrician, a psy…

Still it seems that all impulses are coming from me, and from me alone. There is no one who sits down with a parent of a child newly diagnosed with autism and says : “First you do this, then you call there, and you also have rights to this, or try this..

It’s all over the place and people are not working together. You miss out and lose time. A lot.
Yes, I do want to be an advocate for my child.
But if I go to court for something serious, I will also not hire my bestie hoping that she will somehow pick up the complete legal system ‘as we go’ and get me through it.

I mean, maybe I am ungrateful. I was heard in school, got the diagnosis quick, some financial aide and have access to therapies. Sometimes, I feel I am very lucky with all that, here in Australia, in my corner of Queensland. It could be way worse.

But what if my English wasn’t so good, or – without being pretentious – I simply wasn’t smart or perseverant enough to deal with administration? What if I wasn’t a reader of blogs, for inspiration and relief, what if I was not able to put my foot down (a little) when necessary ?

Being your child’s advocate is serious business!
If you read this, you are probably in it as well. And all without any special training. Yay us.
 

***

Here is a more composed and equally as truthful post about advocacy for children with dyslexia. Just replace with the special need of your choice or in your life. 

Our daily Autism – Echolalia or “YES, You already said that!”

“Sometimes the young and beautiful nymph Echo would distract and amuse Zeus’ wife, Hera, with long and entertaining stories while Zeus took advantage of the moment to ravish the other mountain nymphs. When Hera discovered the trickery, she was so annoyed she punished the talkative Echo by taking away her voice, except in foolish repetition of another’s shouted words. Thus, all Echo could do was repeat the voice of another.”   {source}

aic-greek-roman-woman

Today for the first time, I looked up the origin of the word Echo. To say the least, this is only the beginning of troubles for young Miss Echo, but the curse of having to communicate with someone else’s words certainly is not a new concept in our house. Echolalia, anyone ?

For those unfamiliar with the term Echolalia, here is a good article explaining it. 

Echolalia comes in many forms but one obvious and honestly annoying expression of it is Nemo’s reaction to watching tv commercials with us.

If the ad has been on before and has spurred any sort of comment from me or my husband (well, sometimes you can’t help yourself : ads are so stupid/funny/sexist.. !) – we will hear it again. Echolalia never fails.

Of course, the ad will still be stupid/funny/sexist on tv the 2nd, 3rd or even 20th time, but the comment becomes somewhat redundant. Yes, we laughed, moaned or condemned it in the first place. And the ad hasn’t changed. But you don’t have to say it, right, again and again. It’s done.

Not for Nemo though and explaining this to him has absolutely no effect. Comment will be repeated, every time! The same comment, exactly.

Now some could say, just don’t comment on the ads if it bothers us so much to hear it repeated. But we like commenting on tv, it makes us laugh, talk and discuss things as they come up. So it will probably not change.

TV Echolalia is here to stay.

***

I just found another post about it, at “Just stimming”, she too looked into the greek mythology of Echo. Well is it a curse..?

Quote :  “Echolalia is metalanguage. (..)
Echolalia is what you use when language is too much. It’s just also what you use when it’s not enough.”  {http://juststimming.wordpress.com}

autism warrior mum : how I was right on the internet.

images (10)I have been around on the internets a little and I know better than to engage in flame wars on public blogs or forums. I really can’t be bothered fighting it out with a stranger. I don’t even mean mindless trolls, just people who are wrong. Chances are, they have more time and energy to go on forever, they will get rude and personal and are not interested in actual arguments.

But there are some topics that are close to my heart and I will make a statement or a comment. Domestic violence is one of them. Environmental issues. And autism.

Yesterday I watched this video from Greenpeace on youtube. Read the description. I think it is awesome.
Then I read the comments.

A mistake, of course, because you should NEVER read the comments on Youtube. Commenting on Youtube has become, for some reason, a sort of training ground for upcoming trolls. They are present in every thread under any video with their silly, obscene comments and personal attacks. (Any parent needs to be aware of that when they think
“oh, kiddo’s only watching funny videos” but that’s another topic.)

In the comments, while some people were shocked and others were actually discussing recycling schemes, some young guns were upset about the eco attack to their drink of choice (oh i drink the stuff too! but still..) or they were just being stupid, and someone posted something like this :

“ d’uh! video makers totally retarded, message not  clear.
are you autistic ?? “

This put me off a little to say the least.

So I replied to the comment. It’s true, I was patronizing. I asked the person if he was only little or a senior or maybe mentally disabled himself not to get it and why use the R word and autistic in this unrelated context and as insults?! Stop Coca-Cola trashing Australia - YouTube - Google Chrome 8052013 95911 PM.bmp

It went a bit back and forth. He wasn’t happy, accused me of insulting him and using disability and age in derogatory terms. I had not. Did I even have a point or was I a troll – did I just want any reaction?
I told him I didn’t care what he thought about the clip really (even if it was awesome). But I repeated my point about the derogatory use of the Rword and autistic in a public discussion. That was my point.

In the end I actually got this :

Sorry, maybe I should not have used the word “autistic” as an insult. That was going a bit too far.

Wow. People, seriously, this made my day.

I have seen many blogposts – here is a fresh one from autismum – about language and it’s mostly exasperated, angry posts. I was angry too. But for this brief moment, I am holding on to the thought that sometimes you can really make a difference and make someone see the light if you try.

Have you been RIGHT on the internet lately ?

probably a milestone in autism (self) acceptance here

piratebrainZ

Ol’ pirate brain is taking over..

I picked up Nemo the other day from school after “a good day” (according to him and the teacher). After some wild play with others in the bushland close to where we park the cars, we chatted in the car. VERY good day indeed.

We were already home in the garage when he told me that there actually was one “incident”. He told me :

“There was this boy and he was asking me if he could play with the frisbee with us, but it’s not my frisbee so he has to ask K. He kept asking ME so I yelled at him and he said he will tell on me for that.

So I explained to him about my Asperger’s.

I said my brain cannot do just a little exited or angry, it always goes big and loud, I cannot control it! It’s a problem in my brain, it’s my Asperger’s. Then he did not tell on me. It was ok.”

This means A LOT. I told Nemo I was SO PROUD of him. Not only had he actually managed to control himself after getting upset. But he also (am quite aware mostly so not to get into trouble, but still) EXPLAINED, in his words to the child why it happened ! I asked him if he said sorry at all and he said no. Fair enough. Nothing really happened, right. But this still is so BIG!!
(Awesome’s comment to this was also that it would have been a bit wuzzy from the boy to go tell for a yelling, but never mind.. )

One major problem lately has been that Nemo, well aware of his difference, was rejecting the long awaited help in class from the special needs teachers. He also had a few episodes of (minor) physical aggression with kids and was altogether not very receptive to the term Asperger’s. This could also be because one of our friend’s kid (his age) is on the spectrum but is very different and Nemo can’t really handle him as a friend (or only for a limited time). He refused to share the descriptive – “I am NOT like Noel!”

What happened there in school, the explaining of his condition (he told me he did this 2 other times before!)  is a MASSIVE step towards  finding a healthy, accepting attitude to his own condition and I am very VERY thankful he has shown the maturity – at 7 yo – to get there.

This was a very good day and it ended with a very good evening too – he even fell asleep much better than before. One little incident, big consequences.