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.

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.

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.

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.)

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.

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!

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.

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!

Today 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.

probably a milestone in autism (self) acceptance here

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.

understanding asd and adhd : HYPERFOCUS vs perseveration

Most parents with children on the spectrum have exhausting experiences with their children’s latest ‘special interest’ aka ‘the obsession’.

I have lately come across the term hyperfocus on some of the more ‘young adult’ forums and was surprised that, contrary to the neutral definition (wiki) it’s described as a kind of controllable ‘tool’ for example when studying or in research. Say what?

The prefix “hyper-“, is normally used to describe something that is over the top, excessive… and not in a good way (that would be ‘super-‘).

So I think studying, or last-minute-tasks require simple ‘focus’ or concentration, maybe ‘flow’ if you like, but the confusion of the term inspired me to these :

WHAT IS HYPERFOCUS ?

1. A handy studying tool ?

2. The incapacity stop doing what you’re doing when you should really be doing something else ?

And while your ASD child’s hyperfocus might one day lead to the brilliant discovery of a formula worth the Nobel price, most times, it would pretty much be in the way of sensible social interactions and look more like this  :

3. Hyperfocus in our lives…

(Yes, our Mariomania is still ON. And while some NT parents would think it’s a rather common obsession for a 7 yo boy, he is indeed taking this to a totally new levels..)