Tag Archives: ASD

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.

BT9jQKgCIAEFDe_

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.

About fairness, ENTITLEMENT AND EQUITY

There are elections around the corner here in Australia, and one popular (somewhat populist) term we frequently hear is that ‘everybody should have a fair go’. When you are the parent of a child with special needs in a mainstream school, chances are you often wonder about what is fair when it comes to the conditions and outcomes of the education of your child.

In the beginning, I felt often somewhat guilty for my disruptive, distressed child and his autism amongst all the other ‘neurotypical’ kids. I wondered if their parents who said “oh you’re Nemo’s mum? Yeah, Clara talks about him..” were maybe secretly wishing he was not in their kid’s class, bringing disturbance to their own child’s learning progress.
Admittedly, in the beginning of Year 1, Nemo’s presence in school was chaotic, loud and confusing. Even for me.

So I wondered if it was fair on the other kids having to “put up” with my son who got an over-proportionate share of the attention of their teacher and got allowances for behaviour due to his autism that would have brought on disciplining for them. And while my personal premise was ‘as little intervention as possible’, he still had regular assistance from the SEP team, in class and in one-on-one sessions.

A friend of mine, also with a child that has Asperger’s and part of the education system herself, then said to me “He has a right to all that. Integration is an entitlement, you know. “  – An entitlement? Ok… but if that is so, you as a parent are still quite challenged to stay behind it all so that the help your child has a right to, does happen, when it’s needed and how it’s needed. “You are your child’s advocate! “ I learned.

Recently, in the context of studies in age care, I read a paragraph on equity : Equity, different to equality seeks to equal the outcome of a process, rather than the simply giving the same amount of service to everybody. Equity takes into account the actual needs of the individual, and the outcome provides a fairer, more equal outcome for all.

liberte-egalite-fraternite

“Equality for All” was a virtuous demand at the times of, say, the French revolution, we accept today that actually, we are not all equal. While it’s still a work in progress, we have come a long way with the support of people who are disadvantaged for by ethnicity, gender and disability. Disadvantaged not always because of their actual capacities, but because they are not getting ‘their fair go’ to actually show what they can do.

Like the first cavemen that decided to provide food for a limping former hunter whose idle play with some rocks might then have led to the discovery of flint stones, our society – in theory – recognises the value and potential of those who at first view seemed simply ‘weak’ or incapable.
My son, although he may not be destined to bring the world a similarly ground-breaking discovery as fire, now needs support to cope with the environment in class, certain learning processes, handwriting. He gets more and different help than the others but he is, I am happy to say, now socially and academically stabilized. In return, the children in his class may have learned about difference and acceptance. Integration, I believe, is a two-sided process.

So from guilt over entitlement, from advocacy to equity, I have learnt to see that the outcome is all that matters. Our learning never ends, and I know there is more challenges ahead for both him and me as a parent, but my son will get his “fair go”.  I’ll  make sure of that.

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.

DAILY AUTISM – sleep 3/3 : compay segundo or sleep today

This is a 3 part series about SLEEP in our house. Today – Sleep as a schoolkid.
Part 2 – The sleepy train is LATE today.(toddler)
Part 1 – Sleeping like a baby. Not. (baby)

Jeff Overturf Nemo 30001 (1)

Sleep still doesn’t come easy in our house. From the toddler who’s ‘sleepy train’ would arrive but only depart to actual sleep after a lengthy periods of calm after a day full of adventures, by the time Nemo started kindy, things got more complicated.

At about 4, we saw pretty impressive night terrors at random times in the middle of the night. His screams had me bolt to his rescue, find him upright in his bed – to wake him, he basically needed shaking. It was so scary.

Bedtime was getting more complicated too. Mostly alone due to my husbands nightwork, I now faced no more a peaceful downtime but a lot of anxiety and questions – so many questions! – at night.

Autism was still not on my radar, but it was clear that he struggled to ‘digest’ every day’s events and interactions – all these things became more complex now and harder to understand.

Sometimes, not questions but moves were the solution. Nemo would frantically race through the house, banging into walls, jump on the bed, or on the spot. In his room, I could hear him hum, talk, and rumble. He would come out again and again to “check on me”, complain if the house was too quiet, but also if it was too loud. We discussed many imaginary and real pains/itchiness/anxieties.

All this after reading to him, after singing, after cuddles, after dimming the lights, all that jazz. He just could not sleep! I experimented with different physical sleep arrangements, light variations and A LOT of singing, and honestly, more than once I nodded off myself, it was so exhausting.

One day, I installed an old mp3 player with a speaker at his bedside. It had a broad mix of music and we started playing the more calmer albums to see how it would go… What happened was that he would listen to the music until he knew a song and then get up and inform me about it! Not exactly what I wanted.

And then he found HIS SONG.

It was “Chan Chan” by Compay Segundo. The album was on the player. He asked me to repeat it after he heard it once. And again. I put it on repeat and left the room.  When I checked on him later, he was still awake, but calm. Finally, he fell asleep. The (wonderful) Cuban music on repeat had somehow occupied his brain just enough to settle him, but not too much to stir him further. At least that’s what I think. He does not speak Spanish, so I believe the song was like a soothing white noise and it helped him get closer to actually sleep.

We staid about 8 months on that song. It didn’t bother me hearing it waft through our house for many, many nights. Compay Segundo brought peace to my boy and peace to me.

A diagnosis of Asperger’s / ASD and 2 1/2 years of rather troublesome school experiences later, we  have a cuddles&talk or reading routine for bedtime. Now Nemo likes to read for a while by himself, mostly fact books.

“Bedtime” still easily takes about 2-3 hours. Music still plays an important role.

We have a broad collection of music. Nemo sometimes choses himself, sometimes I decide. It works with classical music, but also slow rock and ballads, Nemo likes Sade, Al Green and Elvis (for the last weeks, we are stuck on “Now and then (there’s a fool such as I)”  yep. didn’t even know that song really). Modern music, 80sRock etc, much appreciated during the day, are not working for sleep time at all.  One song, on repeat, until sleep. On days with ‘incidents’, I actually leave the music on, at low volume, in case he wakes up at night. But he hardly ever does.

For us, this works. Although he falls only asleep between 9 –10pm, so still a late bedtime in the eyes of many, my son sleeps most nights ‘like a baby’ (well..) or “like log” as we say, as he can be moved around and nothing wakes him up. He rarely wakes up before 7, so he gets 9 – 10 hours of sleep.

I know how lucky I am compared to many parents of sleepless children, autism or not. I have discussed and discarded the idea of medication for Nemo. I know that for others that is the only solution, at least temporary, and I do not judge them. I believe though, especially for children, that it is important to do this in a medically supervised way, never with ‘over the counter’ products. Children are so fragile and sleep is a precious part in their development, I fear too much medication at a young age will not allow for their own brain to develop pathways to sleep..

I cannot know if one day, music will just not do anymore. For now, I am just thankful to Compay, Elvis and all the others…

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.

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 ?