Thursday, December 30, 2010

a week of quiet

A surprising result of our family being forced to stay at home thanks to a drained bank account (Christmas in general expenses and ridiculous holiday care fees) is that we have all had a week of the calm and quiet that each one of us needed.

The melt-downs have just about receded as Erin has had run of the house, choosing when to play intensely, eating when hungry and playing in the pool with his step-brother when the moment calls.

This is not to say that there have not been any moments where negotiation and reminders of 'green thoughts' have been needed - in fact I can hear in the next room that this is exactly what is happening as Erin turned on the TV in his room and found a different dvd playing than the one that he had expected. All minor though.

For me, this quiet, gentle time has resulted in spontaneous thoughts about the writing of my thesis and an insight into just how much of my thinking-time was devoted to running this family this previous year and the difficulty in staying focused on my studies.

Next year will be much the same, only I will be that little bit older, slightly wrinklier, and hopefully a little better at organizing our lives so as not to get constantly sick, run-down and pulling-my-hair-out stressed as was the year almost past. With a little bit of luck, Oliver will feel more secure living in this family and Erin will get the support that he so much needs from his new school; I am really hoping that the school's motto 'love one another' manifests in the ways that the children relate to each other in the playground.

Although there is no magic in the turning of the calendar's last page, I still hope that this year will bring with it renewed energy, a completed and submitted thesis and most of all two content and healthy boys. For now I will revel in the last day of quiet reflection and celebrate making it through the first year of Erin's diagnosis intact.

I wish you all a wonderful year.

Saturday, December 11, 2010

two lies and a blow-out

There was screaming and yelling and hiding in a tree along with confused stares by other parents as well as one mum, me, who pretended that this was the most normal thing in the world.

The back story to this outburst begins the night before and reminds me how Erin holds on to incidents where he feels, is, hard done by and then without regard for the (un)suitability of the context lets loose on those who have wronged him.

His step brother was the target of this out-burst. "You lied, Oliver. You said that (insert step-dad) said that I would be banned from telly if I got on to your bed again! And Mum said that he didn't say that. You lied and (insert jumbled angry words)"

"I didn't say that", said a walking away, cool as a cucumber, Oliver - who lated admitted that he did.

An assembly of parents missed this part but saw, a second later, Erin growling, holding his fists tight, pacing, climbing into the root system of a near-by small tree, climbing back out and growling some more. They looked at me, wondering, I'm sure, what this mother will do to 'handle' this child whom they wouldn't have seen act this way before.

Like the eye of a storm I stayed calm, still and made very little movement. I guided Erin towards me with my hand and remind him to breathe. "Take a deep breath", I said near his ear, being careful not to send my words directly down his ear cannel thus causing more distress at the yucky feeling of someone's breath hitting and wiggling into ear.

The next day, at pick up, I saw one of the more interested observers waiting for her son, she saw me and I watched as her eyes lit up as she asked, 'How is Erin going?' An innocent enough question I'm (not)sure and it's not as if this person isn't a genuinely nice enough person albeit one whom I have started each of the half a dozen conversations we have had over the last two years.

The twenty-twenty that hit me on the drive home told me that I should have used this as an opportunity to educate and advocate. I should have explained that Erin has trouble understanding why his brother would lie (so as not to get into trouble) and that for Erin - who can be painfully honest - this was a gross injustice. Further, and more importantly, that Erin isn't aware of the social rules, i.e. you shouldn't express such anger in front of other people, and an injustice is an injustice no-matter the audience.

Instead I did my best chicken impersonation and answered as though I completed missed the sub-context. "Yeah, he's pretty good. How's your boy? Is he looking forward to the holidays?" Total deflection, denial and more than a little chickeny.

What did I learn from this? How did this situation help me understand myself, my son and my step-son?

  1. The boys need their own rooms as soon as possible. Okay maybe I missed the point with this one....
  2. Staying calm, being gentle and activating my parent-judgement-deflector helps to calm the situation quicker than if I were to be blinded by the judgement that I perceive. 
  3. The other parents may not have been judging me, it was probably just concern.
  4. While it is good to advocate and educate when you have the chance, there are many chances in a week to do this and maybe it's okay to look after myself, after all what harm can a little lie do? Oh yeah, that's right.

Saturday, October 16, 2010


We had a sleepover for Erin's 7th birthday on Saturday. Four kids in total (and my partner's kids). Two on the spectrum, one possibly and one little person with an amazing imagination (like the other three) and a very cool 'tude.

I had a few requests during the week from the mums re: food, medication, sleeping arrangements and suggestions. It also helped that all of the mums are friends of mine and all of the boys had been to the house a couple of times before.

I had the evening fairly well planned out and the evening (and the boys) were happy to follow it. Erin was highly excited; counting down the minutes to the first arrival. Not surprisingly, he become overwhelmed a couple of times during the afternoon and evening. The first issue was that we were trying to keep them outside for the first couple of hours: we have had a very cold and wet winter here and Saturday was one of the first lovely spring days that we had had. In typical Erin hyperbole fashion he had a mini meltdown when his request to play inside was denied. "This is the worst day of my life", with his little friend, i'll call him Liam, by his side saying "I want to do what ever Erin wants to do". It was both heart-breaking and sweet at the same time. Once a blanket was laid out and plans to open presents followed by pass-the-parcel were announced Erin was content again.

Of course after they had had dinner inside and the sun had started setting they all wanted to run around in the twilight, being ninjas. Erin's only other mini-meltdown was when it came time to choose what dvd they would watch in bed. It had earlier been expressed to me that the one I borrowed from the dvd store - Alvin and the Chipmonks the sequal - would not do (you have to love the directness ;-)) I went through the ones that we had until I got a 'yes' from everyone.  explained the rules prior. Amazingly there was a dvd that they all wanted to watch - The Bee movie - but here is where I made the biggest mistake of the evening. I, for no conceivable good reason, decided to put that one aside in the possible pile and then keep reading out the titles incase there was one that they wanted to watch even more. I should have recognized the blessing as it was!

When I got to Jumangi, Erin gave a whopping 'yes' while the others cried with a resounding 'no!'. I ran out of dvd titles shortly after that and declared that the dvd that they would be watching was 'The Bee Movie'. At this Erin ran out of the bedroom with Liam at his tail. I found him in The Kid's Room covering himself with the cushions from the couch and looking very unhappy with furrowed brow.

Overall, however, the evening was a success. They were all asleep (after playing musical beds, sleeping toys and teddies) by 10:30. Erin was the last to drop off.

The week following was  particularly hard as Erin slowly returned to his routine. But now, a week later, he is happy and content again.

Friday, September 24, 2010


It is beautiful up here. Not only for the roos, the chooks, the hills and the fresh air, but the comfort afforded from being surrounded by close family who 'get you'. I can hear my mum, my son and my step-son outside negotiating how they are going to transport this load of pine-needles to the labyrinth  while making sure there is enough room for both boys to have a wheel-borrow ride at the same time. "all-aboard".

I'm unsure if it is because this home is one of Erin's most favorite places in the whole wide world - ah his lovely hyperbole - but this trip has inspired in him many sensitivities. He is hurt by almost anything his step brother (3 years older) says. There have been tears, meltdowns, hiding under tables and behind beds, threats to run away and one very interesting talk while walking around the labyrinth this morning.

"It is like we are one family who has met this other family and I don't like it". Ah, two years of living together and the reality is starting to take form in Erin's head - and he doesn't like what he sees. Cue the 'blended family talk'.

"Do you know what a blended family is?"
 "well, do you know what it means when one thing is blended with another thing to make something else?"
"Like when you mix one colour with another colour and you get a different colour?"
"Yes! exactly" gotta love the opening here, "what are two colours that you like that make another colour?"
"Red and Blue make Purple"
"Great, so if you think of Tim (step-dad), Eva (step-sister) and Oliver (step-brother) as the colour blue and you and I are red, well now that the two families are blended, together we are Purple".
Ten minutes later and my Mum and Oliver have joined us. Coincidentally my mum was asking the rest of us what our favorite colours were and when it go to Erin's turn, he said 'Red and Blue' a fact I had forgotten. Then Mum said (without knowing the previous conversation) "Red and Blue make Purple"


Tuesday, September 21, 2010

finding out, falling over and one of the lessons learnt along the way

At home, on the evening that Erin was finally given the diagnosis of Asperger's syndrome, I fell off the back step, hurting my knee (resulting in a week-long limp/reminder) and a smashed glass of Red. The combination of a step (no matter how small) and a head full of distraction is a dangerous thing.

Despite knowing for months that the diagnosis was a likely occurrence (time in which I spent distracted from my PhD and reading instead about Autism/HFA/Asperger's) the actual diagnosis come as a shock. And then it was a shock that it was a shock.

Mostly I spent those first couple of months alternating between grieving those characteristics that I thought were all Erin, but which now were apparently shared characteristics of the diagnosis, and knowing that Erin was Erin no matter the diagnosis. That he brought his own slant to Asperger's. It was Asperger's Erin style.

Trying to educate the family has been less than easy and it was intellectually interesting viewing how Erin's dad (we have been apart for many years) went through the same stages of panic, grief, acceptance, panic, grief as I did but on a different time-line. Negotiating other's understandings of Autism/Asperger's has also been difficult. It is a topic that is highly sensitive, even with friends/family who don't have kids on the spectrum. I understand this as everyone has a multiple of experiences and access to different 'truths'. There is comfort in 'knowing the truth', and this serve people well. Unfortunately if the truths held by different people aren't compatible then feelings are hurt.

As an example, while I am not completely sure now, for a while there (in my making-sense-of-this time) I was more of the opinion that Asperger's was genetic and that a lot of money had been spent researching the possibility that Autism resulted from immunisation shots, without the results to back it up. Further, I was (still am) dubious about the assertion that because of the public health campaigns undertaken and the money spent on immunisation, meant that governments were/are motivated to keep any causal link under-raps. During the time in which I was, quite feverishly, trying to understand how this happened and what portion of blame was mine  - why didn't I realise that kids shouldn't scream when extended family (i.e. my son's grandmother) come over, to the degree that the child must be taken from the room and slowly, slowly re-introduced?!; amongst many other self-deprecating ideas. I had the conversation detailed above with family who, with a baby of their own (NT), were trying to understand their own world and their own decisions (and fears). They had chosen not to immunise their child and was convinced (as were friends of theirs with a child with autism, allegedly) that immunisation was to blame.

What I heard in their argument, was that it was my fault (although I'm sure they would be mortified to know that their words affect me in that way), that once again, I was to blame (don't you love mother guilt). Though come to think of it, they could have read my assertion (genetics) as blame on the parents, also.

Now for the job of wrapping this disparate post up into something resembling cohesion....

In conclusion ;-), before the official diagnosis I felt that it held the golden key, that we would open the door to the rest of our lives, this new knowledge was only light baggage which could be easily carried over the shoulder. Instead it was a shock (one that I waited 8 months for!?). New complexities arose, telling people, sharing this with my son's Dad, with my partner and his kids in a way that they could accept Erin for who he is (not there yet with the kids but working on it). Trying to see where others are coming from, within their own contexts, when they tell me their 'truth' of Asperger's, or who Erin is (there is many more in this category than the conversation mentioned), has been one of the biggest hurdles.

I feel safe now in the knowledge that my truth is mine. Even in its fluidity, it holds a comfort to know that I do not need to swap someone's else's truth for my own. But neither do I need to convince them that they are wrong.

Oh, and my knee healed nicely, thanks ;-)

Monday, September 13, 2010

dear john

Words have been agonised over, meanings dissected. We are moving our boy to another school in the hope that they will be able to see him as the wonderful, bright and interesting young man that he is rather than as a problem to 'be handled'. The 'Dear John' email has been written to the current school, but not yet sent. The decision to move schools has been long-coming and excruciating. It is such a cliche to say that liberal ideals are all well and good when the child is not your own, but 'things are different when it is your own child' in consideration.

So far, we have had a more-than-could-be-expected warm welcome to the new school. They are organising a transition program for Erin into the school. He will even get a bit of funding through this system. The days have a strong routine and rhythm. They seem up to date and understanding of kids on the spectrum. All good things. We just need to let the other school down gently, it truly is like breaking-up.

Friday, September 10, 2010

'the rock sinks to the bottom'

‘Save yourself, save yourself’, my 6-year-old boy hollows from where he is perched on the side of the shell-shaped sandpit. Sitting not too far away I wonder to myself if this is what living with Aspergers is going to be like. Erin has always quoted movies and it is becoming more and more obvious to me. Though I’m not sure if it is because he is getting older and it loses its cute-factor or if reading that some Asperger people quote movies verbatim has heightened my observation.  Only two days ago, while standing in the kitchen Erin blurted out ‘When I am an adult I will say different things because I will watch adult movies, now I watch kids movies and so I say kids things’. His sporadic displays of utter self-awareness often shock me. After all it has only been a few short weeks since I read that the practice of quoting movies and books (a lot) was an Asperger’s trait rather than just a Erin trait. Apart from his display of self awareness it was the thought that this avid quoting could not only continue into adulthood but that Erin had appeared to absorb it into his communication style.

‘He often interrupts and says things out of context’, his teacher wrote in a letter to the pediatrician. This conjured up a sorrowful image of my beautiful boy interrupting to say something like ‘the brachiosaurus eats leaves off tall plants and tress’ while the 28-strong class diverts their attention from the teacher to this boy who says things off the top of his head.   When he was two he would often, for no apparent reason (of course there may have been one for him) say over and over ‘the rock sinks to the bottom’. Every time he said this it would be with the exact intonation and emphasis on the same parts of words as the time before and the time before that. It took another watching of the movie Ice Age to realize that this is something that Sid says once in a not very memorable scene.