Category Archives: Australia

The label “autism” ? Yes, please.

In my son’s school, ‘anti-bullying policies are broadly advertised and in his class; Nemo sits close to a wall full of coloured-in versions of the “do the HIGH FIVE” hand.

hifive

Now after their first ‘bullying awareness’ lessons at in prep, I have spent a lot of time explaining to Nemo that not every grimace, every funny voice, every joke made by the boys is meant to tease him. Nemo often pushed children away that were trying to make friends, in a silly kid kind of way.

But this has now changed. In the last 2 weeks, some boys in his class have taken to “test and trigger” his sensitivities – on purpose. The result is that my son, usually inclined to yell and flee from stress has now repeatedly tried to smack them to stop it, including to the head – and he was suspended for a day this week (no one was hurt, they were still laughing).

Now there are a couple of reasons why the dynamics in his class has changed (teacher changes, new students, a long term)  and I understand it is beyond the control of the school. I accept the disciplinary action, sort of.. (I have not grown up in Australia – suspension for a 7 yo?! ) Until recently, I was quite happy with the support by teachers and special ed’ dept. We had great results.  Nemo was less anxious about school, confident and stable in class.

But the school’s response to this acute problem, let’s call it “budding bullying”, is flawed by the fact that they have a policy that does not allow them to “single out the children with special needs” – to avoid bullying. It is obvious, Nemo is different, he has some special arrangements in class, gets one-on-one time and so forth.. Still, they believe saying ‘this child has autism’ will lead to more bullying. I have come to think that I totally disagree.

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I believe children, especially young ones, have a natural need to be ‘like the others’ and belong. But they also have a much greater flexibility to accept differences, when they get help to understand them.

My son doesn’t look different. But his social behaviour is a wild mix of toddleresque outbreaks of love or anger (this can change fast!), and an odd übercool teenage attitude that is a lack of understanding of polite, friendly gestures or clumsy copying of others in the wrong social context. He has autism.

I am not spruiking his autism to my son as a special gift but he knows it’s nothing to be ashamed of either. It’s not “a label”. It’s our reality.

By teaching only generally about “everyone’s different weaknesses and strengths”  – “yay, we are all different!” – the school is maybe respecting the wish of other parents, but certainly not mine. My son’s “difference” obviously does not appeal greatly to the kids (he has no real friends) but also, they do not understand him at all. They are not educated about autism. If they were, of course, some kids – the present and future bullies –  will still tease him. But the OTHER children, those that say nothing, those that I still think could be his friends, would they not be able to support, even defend him better ?

I do not care about the bullies. They will come and go. I am certainly not naive, this is just the start. But I do care about education. Acceptance ALWAYS comes via education. We instinctively fear what we do not know or understand. Ableism is just a form of Xenophobia if you will.  We fear what is strange.

I am still pondering how to tackle this, but something needs to happen. I want to work WITH the school, not go full frontal. But I think that long-term, the outcome of an initiative with information about autism is in the interest of all the children. It’s the same with the continuous calls for “autism awareness” vs actual integration and acceptance. Most of us are quite aware of autism. For real acceptance though, society has to learn about it too.

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Perspectives. we are NOT one big “autism family”. Still…

Two days ago, I blogged about Isabelle Stapleton.

Incidentally, there were elections in Australia with the (expected) outcome of a new government that, to be honest, has me worry A LOT about the future where health, education and the general welfare of my family are concerned. While following the events of election day, I also followed the reaction of “the autism community” (parents with autistic children, autistic adults, advocates) to the attempted murder-suicide in the Stapleton family. The ‘community’ is “reeling”. It is also divided.

In brief, some focus on the act committed by the mother (as I did in my post) others have sympathy with her and blame “the system”, ie lack of support. And now the different blocks leash out at each other.

I am writing this as a reminder for myself of what I have already previously observed : we are all different. There is no such thing as ‘the autism community’. Let’s stop pretending there is.

With the stats being what they are (let’s say 1:100 to have an international, not gender specific value), there is no way I have much in common with ALL of the autism parents out there. Other than being a parent to a child with autism, that is.
You don’t know me. We are not “in it together”.

And although I honestly appreciate the insightful blogs of adult autistics, they are not only extremely different than me, but also most probably are very different than my autistic son will ever be when he is their age.

We are all different. We see things different.
We have been through different things in our very different lives. One may feel the pressure of raising a special needs kid getting to them, others might have known the mother from the blog or IRL, so they might think “This could be me one day” (in this case GET HELP). But the other side might feel the grip of fear that eugenics is still a spectre on the horizon and the understanding that parents worldwide kill their own children with special needs is unsupportable for them – because they could be the  victims themselves.

Now as it happened, I too felt some sort of lose connection to it, and the need to comment, to reflect on it, to appeal to parents to stop seek justification for what is an act of crazy non-explainable attempted murder. Psychosis is the only explanation and for anyone who has come close to this, it has nothing to do with the reasons, but all with psyche, trust me.
And I am now over it. I can’t help the Stapleton family. Of course not. I could not then, and I cannot now. Out of respect to Issy, this should not become a political case. Her life has been too public for too long already. Think of her and her family, or pray if you do, her life is still in danger from what i know.

So we are not one big “autism family”. And that’s ok.
Let’s stop judging each other for reactions to what has happened. Look out for those who are close to you, right there and now, and maybe just ask them, are you ok? Be attentive, truly listen, find out how others really feel. Also be honest about it yourself. It is ok to say “I can’t go on no more”. Please keep talking.

ruok-day

That the best we can all do.

I believe in science. And vaccination.

Yesterday, in Australia, people who are against government scheduled immunisation programs of children woke up to some news:

The Australian government announced that it will actively penalize parents who do not vaccinate their children by cutting the Family Tax Benefits . These are usually paid – if you qualify by income threshold – to families here, instead of direct tax reductions or classes (as done in other countries). This policy announced by the Australian Labour Party – whose re-election in September is currently less than certain – sends a strong message that, I believe, is meant to make people understand that it is indeed NOT an individual decision whether or not you vaccinate your children.  Also, according to the article, payment restrictions are already in place since last year, but left room for the so-called conscientious objectors.  Labour plans to only allow medical and religious reasons for non-immunisation.  Interesting.

Now, I have yet to blog about my personal experience with both, the Australian Vaccination Schedule (which is different of European ones and therefore registered my son in default at the age of 4) and payment cuts (of the Child Care benefit in my case) . All this indeed happened about a year before the first clear signs of autism showed in my son,  after he actually ended up having one more MMR vaccination packet than your regular Australian child.  And no, I was not comfortable with this.  I would have had to live under a rock – or at least without internet and other media – to not have ever heard about the forever discussed, but completely disproven “link between autism and MMR vaccinations”. So yes, I read a lot about it.

And when I say a lot, I mean A LOT. I focused on reports on what scientist have found in peer reviewed tests and studies, and I tried to leave the unscientific, the alarming and the anecdotal accounts and websites out of my process of judgement. That is not easy. I am a mother first, and instinctively, I listen to what other mothers have to say. And the internet, as we all know, is full of mothers giving their opinion on just about anything child related – and beyond. (The internet is also full of mothers telling other mothers that they are fed up with their unwanted advice and thoroughly over all the so called ‘mommy wars’. I certainly am.)

plague doctor

Luckily, we have seen immense progress in medicine.

In the end,  I have come to the conclusion to trust modern science over what we will just call ‘people on the internet’ with an obsession over governmental conspiracy, ‘Big Pharma’ and the belief that ‘all things natural’ are automatically good and wholesome for you. Now, bacteria, viruses – they are indeed natural occurrences. But even if overpopulation has become a serious problem on this planet, I have yet to see calls for the reintroduction of , say, the bubonic plague to somehow regulate the problem ‘naturally’.

I am as ‘bio’ as any odd person, I believe in healthy food and recycling, and I certainly don’t run for the medical cabinet at the least sign of a headache.
But if my son had a spiral fracture in his leg, I would not simply straighten it with a stick and hope for the best.  If he had a fever or an infection, I would not set leeches on his body to pull illness out if it. I am, indeed, thankful to live in this time and in a country, where we have access to modern medicine, anaesthetics, medication and surgery.  And free (!) immunisation programs.
Yes, there is an inherent risk of side-effects, allergic reactions or human failure on administration in modern medicine, but on the whole, we are SO MUCH better off than many on this planet and certainly better than our ancestors who battled with high child mortality rates and incurable illnesses throughout history.

For me, on vaccination, my personal research is long done : I have formed my opinion and will follow through (with the vaccination schedule that is).
But I still follow the discussion and events. Here is an excellent write-up on what’s going on in the US I read only this weekend.
Even if some have moved on from the ‘link to autism’ debate, there is now a whole and very vehement anti-vaccination movement, based on the rejection of ‘toxins’, a preference for immunisation through ‘natural antibodies’ and the before mentioned suspicion of ‘BigPharma’. And this movement is indeed also growing in Australia.

In this context, the planned policies deserve a bit of consideration.
I wonder is if  these people will even be concerned by the cut in government funding, when – other than complacency due to ignorance on the severity of these illnesses – the most fervent immunisation rejecters are often part of the upper middle-class to wealthier parts of the population ? If you do not get or need the Family Tax Benefit in question, you will not feel any cut at all.
I have also read in the past, that the perspective of future stricter laws to protect herd immunity in Australia has lead some “anti-vaxxers “, as they are also called, to already start some sort of pseudo-religious movement to be able to put forth the required religious reasons.  Homeschooling rates might increase further, but I could also imagine the set-up of ‘immunisation free’ child care centres. Members of the movement have shown to be fierce in the defence of what they consider their right to individual choice as it is, and I can already imagine how people who otherwise have had no objection to immunisation will now question the ‘real reasons’ of a government and sympathise with the movement just out of principle.

It’s a dilemma, because the immunisation rates according to the NCIRS , are still relatively high and are ensuring herd immunity in this country – on average. But there are pockets in certain areas with far lower coverage, and larger outbreaks of vaccine-preventable diseases  in other parts of the western world in similar settings (in several European countries) have been registered. Sadly, for some people, the new, stricter policy (if it comes into place) will just increase their suspicions, drive them onto the internet for ‘information’ and into the arms of what I believe is fear-mongering, 1st world problem creating propaganda (anti-vaccination sites are increasingly donning a more ‘news&science’ design, in look as much as in their articles).

But other than the never-ending mommy wars about breastfeeding, working, homeschooling or disciplining your child, this is actually a VERY serious problem and it does NOT only concern your own child : One sick non-vaccinated child can easily introduce infectious diseases into any group of vaccinated children who can still carry the infection home to their family. This has the potential to kill children. Babies, who are too young to be immune yet. Children with actual medical deficiencies that cannot be vaccinated.

“Chicken pox parties” or the celebration of measles in a book ?  I can’t see how any thoughtful human being would want to be part of that. Personal choices and decisions do ALWAYS end where they interfere with other peoples well-being.

And while it is true that one section of the movement has widened their argumentation beyond the false claims that vaccinations cause autism, I can’t help but feel that there is still a lot of time, energy and money spent that does nothing to help people and children with autism live better with the condition.  Rather, autism is still painted as the “ultimate evil” that can come into your life if you do not distrust, delay or refuse vaccination. Now while this is not only false in regards to what scientific research says on possible causes of autism (at the risk of sounding like a broken record: NOT vaccination), it furtherly contributes to the negative attitude the public will have towards autism and other people with visible or invisible disabilities, mental illnesses and generally anyone who is different, weak or disadvantaged in any other way.  I am not one of the parents that will tell you how ‘the gift of autism’ is what makes their child so unique, so beautiful or deep. But I am living with it on a daily basis and I am accepting it as part of who my child is.  Yes, he is a great kid, unique and beautiful.  But every unscientific blogpost, every media appearance of an anti-vaxxer merely on the basis of ‘balance’ when reporting about immunity issues, raising doubt and fears in parents, keeps feeding into the unscientific, dangerous debate about the ‘epidemic’ of autism and makes his life, along with that of all other autists in our society, that much harder.  And that has to stop. In the light of all this, as a parent and as a thinking person, the policy announcement is a step in the right direction.

Any actual thoughts on this are very welcome in comments. The usual Anti-vaccination propaganda is not. Comments are moderated.

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)

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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.

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. 

Aspergerer – Blackout in Queensland

I don’t like to sleep in a completely dark room, for several reasons, and neither does Nemo.

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There were times when I tried to help him feel secure with waking up in a dark room, but with the many other problems we have with even falling asleep, I have long given up on it. It’s no big deal really. We have gotten very low watt night lamps, for both him and me and no one stumbles or gets scared in the dark anymore.

On the day after the tornadoes whipped through regions North of us, we had strong winds here at the coast and on tv they were discussing flood levels. But our lights flickered.

Nemo was in bed, not asleep as usual, so I went to see him to make a blackout emergency plan. I did not want him to freak out and scream the house down. Waking up to his usual “night scares” is bad enough without actual darkness. For both, him and me.

Here is what we did and we will just leave it in place for the future.

On the headboard of his bed, we have a soft toy attached, a musical pullstring thingy we have since he was born. Onto this clown, I hung a strong little LED torch. I told  him to NOT PANIC, but reach for the torch and come and see me, in case I was asleep. We practiced with (not really) closed eyes and giggles.

Literally 5 min later the lights were off (and they would stay off for about 30 hours).

I had gone back to watch the news again, and it took only seconds after everything went out until Nemo shot out of his room and came running to us – clenching his torch.
My husband thought of a battery powered 25 light fairy light thing (they now retail for about $5) from christmas and put it in his room as a nightlight. They use so much less, now, with LED lamps, and will easily go all night, even more. All these gadget cheap torches we picked up left and right? Finally useful.

While darkness is usually an issue even to go to the toilet, we went through the whole blackout situation without any fears or anxiety crisis. I am SO glad this worked.

readerDo you have any measures in place for ‘emergencies’ that could be harder on your child with ASD than for other children?

I certainly will keep this up, and will change some of my own arrangements… Having mostly scented candles to illuminate the house is a bit heavy on the head and a radio without batteries is basically worthless. Happy to say, the blackout only cost me about $ 15 worth of sausages lost from the fridge and a bit of effort to entertain us all without electronic help.

(I know others were not and are not that lucky around us, all the best to them, obviously. )

5 things that will chase me off your blog…

This is my short contribution to the ‘blogosphere’ this week.
I have been doing a lot of READING lately, and haven’t been as communicative as I thought I would be, now that we have the actual diagnosis… and let’s just say this for now, other life stuff interfering with everything anyway.

Sometimes I come across or back to a blog, via twitter maybe, or  a forum or a google search. I am interested and I would like to CONNECT. I can actually RELATE to what you said, on your blog or elsewhere. So maybe I want to get to know you better.  I am at the moment mostly interested in other ‘parenting / autism’ blogs, but at times, I also like me some true-to-life mummy or just social commenter blogging. If the tone is right, I can get hooked on almost everything really.  Then I try to connect, leave a comment, and

– Bang! – CAPTCHA TRAP!

images (17) You all know what I mean – who on earth can read this stuff ?!

As it is, that’s only one of the things that make me stroll off again. I am moody, and it can be anything (colourscheme HURTS my eyes?! get out of here!)  but here are the 5 things that disturb me LOTS on a  blog and will make me move on.. even if  your content is PURE GOLD.  I am totally guilty of making the same mistakes, I will try to repair this on my own blog, and maybe everybody wins.

So here, in no particular order –
5 things that will chase me off your blog.

1. Your captcha just puts me off.  “gdaarepht” ?!

I mean, please! if you get hundreds of comments, I will probably NOT add my 3 cents anyway, because the likelyhood to connect is basically zero. So unless your blog gets totally clogged by spam, maybe chose a solution like ‘only registered users’ with google/twitter/disqus/intenseDebate etc ? Some allow your commenters to link back to their own blogposts, and that’s an incentive many like to pick up on.

2. I don’t see where about you are from. Timbuktu?

As I have a ‘special needs’ interest, it’s increasingly important for me to see if information or experiences shared on a blog are relevant in the country I live in. I blog sort of anonymously too, but when I say “SE Qld, Australia”, I don’t feel my privacy is too compromised as it is a fairly large area still. Now don’t get me wrong : I LOVE to read blogs that are else where, and am (cough cough) actually also reading French and German blogs, websites etc. But blogs written in English can basically be from any corner of the world and all I want is to be able to know where about you are from.

3. You don’t put your entire article up in my reader. “Read full article HERE”

Now I know this is an option and a choice, to put a snippet with a ‘read more on my blog’ type of link in the RSS reader, and the idea is probably to get people back on the blog like this.. BUT consider that if I do follow you via a reader, i am trying to NOT having to click through and read blogs on their actual site, this is the convenience of a RSS reader, and I like that. It is very likely that I will pass on to other, readable items that have fully loaded (especially when reading on my phone) and not much follow your blog.

4.Your blog posts are all just too long… “tl;dr!”

“too long; did not read” is an old way to comment on forum posts, on ANY forum posts by simply saying that the article/post submitted by someone is just TOO LONG for this type of discussion and therefore, even if the content might be great and important, will be skipped by many readers. This is what I will do with your super-lengthy blog post, partly because i have, like most of us, internet-ADHD and need to click on after a given time, but also because when I read blogs, I want to read posts, not editorials, or articles that feel like the chapters of a book. This may sound shallow, but if you look closely, blogs with really long blogposts have usually very few followers. They simply do not invite to exchange as much as short and snappy, maybe illustrated posts. An occasional rant can run down 1000 words, but in general, it overwhelms me and I will move on.

5. Too many personal photos

Like the lengthy post, sometimes photos-only posts are ok. And if you opt for showing your entire family, with or without their consent, on your public, but personal blog, that’s entirely your choice. (I am subtly implying that I think it’s a mistake, but that’s another subject all together) It can be amusing and makes blogger friends more real when you know their faces and their family. But if I get onto your blog and I have more photos than content, more smiles than stories, well, then I will probably not be back so soon. There are so many other ways to share photos with friends – and I love that! – but again, I am trying to relate and connect to you, via a special interest or just a comment or a blog where we ‘met’.. your photos, as communicative they may seem, actually can be a barrier for people who aren’t as ready to share their face with the whole world webs.