Tag Archives: Aspergers

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.

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

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

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

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

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

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

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

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

PHOTO: FLICKR VIA KEVINLAW

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

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

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

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

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

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

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

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

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

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

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

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

advocats

Last week I heard it 3 times.

You are the best advocate for your child.

Am I ?

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

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

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

But this advocate thing? Not sure.

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

Why is that so damn hard ?

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

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

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

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

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

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

***

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

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

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

aic-greek-roman-woman

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

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

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

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

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

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

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

TV Echolalia is here to stay.

***

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

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

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

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

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

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

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

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

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

This put me off a little to say the least.

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

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

In the end I actually got this :

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

Wow. People, seriously, this made my day.

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

Have you been RIGHT on the internet lately ?