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 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)

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…

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)

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!

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.

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

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. 

L’expert – c’est moi! You know best for your child.. but you don’t know everything.

When I first had thoughts that Nemo was on the autism spectrum, I turned to the internet for answers and support. I would google thoughts, questions or fragments of possible facts about different aspects of autism and then pick and read articles on blogs, forums, science health and psychology websites.. then links would lead me deeper into what I would call the jungle of autism information on the internet.

Because it’s a jungle and it has terrible predators.

I am not going to write (now) about the obvious dangers that are out there for parents who are desperately seeking for a ‘cure’, a method or simply answers in this confusing and sometimes heartbreaking journey that they have been ‘shanghaied’ onto through the birth of a child with autism.

It is no different from the quack people in our time and age will do with, for or to a cancer patient when all scientific and medical solutions have run out (sadly, sometimes even before that).
But today, two years after my first suspicions, one year after the AS diagnosis and with A LOT of internet reading, consulting, mingling and discarding on my back, there is something else that bothers me almost as much : The internal hick-hack of the autism (support) community.

First I noticed that there were parents that would post (vague) questions about this or that behaviour of their child on ASD pages on facebook or other forums. Some parent would reply by giving an insight in their own experiences, maybe some advice. Others would first ask for more detail. But the amount of people who would dish out judgement or give extreme directives to the parent in need is rather shocking. THEN there is the backlash of OTHER parents commenting back, sometimes adult autists with their own input. And back and forth.. Had I ever seeked advice on a page like this, I am certain I would have come out of it even more confused..

Now I have seen a couple of great blogs of parents that are true autism veterans and some will put lists of “things to say/not to say to an autism parent” or “10 things to know about a child with autism” and the like. These lists are the result of their long parcours of daily confrontations and frustrations and much of it is true, helpful and sometimes funny too. It would be great if the broad public moved towards a better understanding of how it is to live with autism and treat parents and children with more respect. Parents testimonies are important and must be heard.

But. Lately I have broadened my view and have started reading blogs from autistic adults. It’s been quite an eye opener. It’s true I have early discarded divers Aspie et all forums on the internet as to juvenile and ephemeral for my own taste. But some of the blogs I have come across are mind-blowingly intelligent, insightful and intense.
“Of course they are!” I hear you say. Well, take the time to really read the blogs. They are HARD to read and it’s also some very hard truths for us as parents.
It pains me when I read how many feel insulted by the way parents will impose their understanding of autism on people who have a first hand experience. From explaining to them what terms to use (autistic children vs children w autism debate) over tactless questions about pooping problems to simply telling them their sometimes combative attitude is just not helping the awareness movement. How can parents be so rude and ignorant?

Yes, times have changed and our children will most hopefully grow up more supported than those autistic children that are now adults and blogging. But we as parents need to learn how to communicate with each other to actually get support out of the exchange now possible via the internet. And we must also include those that are old enough to already have a voice.

These voices must be heard! They have much to say and we have still so much to learn.

The information and support we can access today online is a blessing. Everyone eventually finds their own balance between following the latest in science, day to day help, simple chat with other mums & dads and the some deeper exploration of certain aspects of the spectrum (or just parenting). I don’t say everyone needs to ‘study autism’ full time and yes, you alone are the first expert and advocate for your own child.
Your child that is different to any other child, spectrum or not.

Louis XIV 

So listen to others. Ask questions that are relevant, comment always with respect and advise only with caution.

Sometimes being combatant, provocative and assertive can drive a movement forward. But there is a fine line between to being an obnoxious know-it-all who sucks the enthusiasm and willingness to share and support out of others who are pushed to the sidelines. Let’s ask ourselves daily if we are not crossing this line.
We are trying to improve the social skills of our children, we are demanding outsiders to adjust their view of autism.
I am hoping that with this common goal in mind we are not becoming a divided movement of too many camps, because it would be such a waste of energy and of an opportunity to really achieve some change for our kids.

Have you made negative experiences online with other parents or communities that you initially felt drawn to for support and information ?

Thankful Thursday / Letting go of parental envy

A post at AboutABugg made me think today.

Milestones of childhood development. Naplan.. Should a child with Asperger’s participate for the sake of inclusion, fairness or even to have an objective(?) assessment of your child’s academic level through these school tests?

I still haven’t made up my mind about it. We have a year to go before I have to, I guess..
But it made me think about my own competitiveness as a parent.

As a baby, Nemo started sitting at a normal age (is it 6 months?) and went on to crawling. For a quite a while. It always bugged me a little when parents boasted about their kids walking at 8 months and insistently asking me : “does he walk yet ? does he?!” I thought ‘geez, give it time, he certainly will. He’ll be a talker.’

When he was finally walking at 16 months, I still was relieved. Coincidently, he had delayed teeth and was chubby enough to pass as a giant baby (I am only 5’3). Strangers now complimented me on his early steps. Whatever!

Fast forward 6 years and my son is diagnosed Asperger’s, and I know there are certain things he will learn only with difficulty, later than others or never. It does hurt a little. Mostly for him.

But I have to work on myself not to be envious our ungracious with parents that praise their NT kids achievements, or worse, take them for granted. And I thought of my mum..

My mother was a complex creature to say the least, and there were things in her life that she longed for and things she missed out on that she regretted. But these things were always attainable goals or objects that she could have afforded, had she taken the right decisions, or had life not turned another way.
I have never seen or heard my mother envious of a professional position, personal possessions or a relations that were completely out of her reach.
Mum would throw her hands up and – not naively, but sincerely – admire the beautiful villas people had at the waterfront when we were taking a walk through the rich suburbs of my hometown. I would probably mutter something like ‘they got it easy’ or ‘.. should share their wealth!’ as the socially critical and righteous teen I was. And I would not enjoy the view at all.

But the lesson I take from it today, is that I want to be able to enjoy watching other children progress and thrive in ways my son will never do, without comparing him or me to these families, because acceptance is the first step to being able to reach your own goals, your own milestones. At least some of them.

My son deserves this focus. And he will have his very own milestones and his own achievements. And we will praise him for it with all our heart.

I am thankful today to Renee to make me think about that and to my mother for her healthy attitude on other people’s riches.

So I am actually linking this as a Thankful Thursday, even if it’s just after midnight already…

Aspergerer – The search for the causes of Autism

I understand that people wonder and want to know.

After being a ‘rockstar’ toddler on the playground, my son – who used to get along with ANYONE – suddenly got into trouble through social awkwardness. He was ‘not fitting in’. He struggled to make any friends and it got complicated, to say the least. Of course I wondered if my parenting was to blame, my own difference as a foreigner. I am not exactly a people person, abuse ‘survivor’ and all.. So I do have a bit of baggage – was I passing it on ?

We moved on to prep when he was 5 and things got worse. I now wondered if the the fact that he had no real siblings closer to his age ( teenage step brother and sister were living with their mum) could have made my son too egocentric to function well with his peers. And maybe my own, sketchy set of rules at home had badly prepared him for the discipline in school?

When we encountered aggression and even more difficulties to mingle, I finally wondered if there was a possibility that he had purely and simply inherited the A..hole gene that could be present from the side of his birthfather’s (aka ‘the Mistake’)..
Yeah, even I know A..holes are complex beings and oh, they often have reasons (blahblah) but being not exposed to that type of behaviour, I had hoped, should have protected my child from becoming like that himself.. but, you know.. you STILL wonder! And genes work in mysterious ways..
But I have long completely discarded this possibility.

When I started looking more into behaviours of children on the spectrum, I felt, even before his official diagnosis, that things were making more sense. I was almost glad.

At this point, it is easy to get VERY distracted by reading/researching all these things on the internet that are – as science stands per today – NOT proven and completely irrelevant for dealing with the problems in your child’s daily life.

I have easily read 100 different theories about what *I* could have done to caus the autism of my child. Some I might actually have done with or without knowing. Environmental factors, food, drink, the vaccines.. well, you know the range is pretty wide.
Some of the causes are so obviously stupid and based on quacks and self-declared specialists, still, if you look, there will be a portion of people on the internet that follow this or that theory.

So instead of dealing with the NOW and the FUTURE of THEIR child, they get lost in the cause of XY and contribute to the cacophony of disinformation.
This is what makes it so difficult for anybody today to understand what we actually know about Autism FOR SURE, how we can help children and grownups with ASD and what research would actually be most beneficial in the fight not AGAINST Autism but for those of us who have a life WITH Autism.

Oh, I still wonder from time to time. I am back to thinking genetics play a big role (my father and my brother both qualify for what people usually call ‘autistic traits’ ) but I also have the advanced age birthfather, the temporary lack of oxygen at birth… So I still don’t know.

What I do know now, though, is that I don’t have to know.
Even without knowing exactly where his autism comes from, there is still an incredible volume of information out there and so many methods how to make our life with Autism work and allow my child to be happy. Finetuning what and how much should be done at home, at school and elsewhere, now and in the future, looks like a big enough task.

The causes of autism.. ? I’ll leave it to science to figure that out.