first five weeks of new school

Week five of the new school year and I am starting to relax into the thought that Erin is going to be okay at his new school. The first week was horrific. For his dad and I, his step-dad, his teacher and most all Erin.

During that first week and a bit, Erin's home-style autistic traits had translated to school. We had walking around singing while other kid's were doing their work, hiding (for large amounts of time) under the teacher's desk, in the cupboard and in the toilets, going walk-a-bout during Physical Education - leaving the PE teacher scratching her head and asking for an aide during PE.

His anxiety levels were sky -rocketing at home, and as those of you who have experienced this in your own child would know, it manifested in words that no parent ever - and I mean ever, want to hear their child say, "can I have a sharp knife please? I want to stab myself".

His dad and I were understandably freaking out, we were thinking about anti-anxiety medication, it was causing friction at home, his step-brother was agitating him in the mornings which would lead to a bad start to a bad day for Erin, and even though this terrible time only lasted a week or two, every day seemed drawn out, the behaviours and the anxiety seemed like they were here to stay and I felt incredibly worried for my son's future.

I suffered from intense anxiety as a child - though it was never recognised as such and explained away as over-sensitivity. It impacted my ability to learn and to function in the classroom, resulted in a few years of primary school where I didn't have one friend and had convinced myself and those around me that I was stupid. So you can imagine the feeling when Erin tells me that he is less than human, no more than an animal, that he is stupid and that he hates looking in the mirror because he is so ugly - all of which he is far from of course.

The most apparent reading of this behaviour is that it must have been modelled - that it must have come from somewhere, that I have projected this onto him because of my own childhood. But what if it hasn't? What if it is genetic? What if it is because his - and my - brains are wired differently? With autism being such a huge spectrum, it makes me wonder if there aren't multiple neurological differences that are yet to be named and categorised.

All of these thoughts surfaced in that first week and a bit. The school was wonderful however, and it wasn't Erin's reaction to the school, but their reaction to him that has afforded me the comfort that I had made the right decision.  We have had a multi-team meeting, with more planned. His teacher tries new techniques with him that she has used in the past - without needing me to suggest them. It is a Catholic school and while we are non-believers, it is a comfort for me that it is offering Erin comfort, after all he was only 3 when he went through his first existential crisis. He has always been worried about the finality of death and so it was wonderful to hear him say that 'no one dies because they all go to heaven', and to hear the relief in his voice (thankfully hell is largely left out of the pedagogy).

So where to from here? Appointments have been made with his psych and pead. Social skills classes have been looked into. The discussion of anti-aniexty medication if needed at a later date has been opened up between me and his dad and soon the psych and the pead.

In all this though I know that changing schools was the right decision and hopefully I will make more right ones as we keep on this journey.

effects of the unprofessional 'professional'

I have heard that some kids on the spectrum are particularly visual. Erin certainly falls into this category. He aced the block design section of the WISK IV;  understands better if routines and personal responsibilities are presented visually. He even 'reads' via the pictures rather than the text. 

This is not in and of itself a disability, this can be a real asset, but, unfortunately only later in life when those skills have social and economic value. Currently this does not help him with his reading and writing the way that it is taught through the current pedagogy. There are ways around it of course and it involves money and extra parent teaching at home. The problem with this of course, is that when you add in Aspergers and sensory issues you have a little boy who does not want to sit and mould clay into letters every day after school. 

Last year, Erin participated in a program for visual/spacial kids to help them progress their literacy through methods that help them to attached a correct picture to their letters and words. Erin, it seems, is able to manipulate 3D objects in his mind, in fact, he has trouble NOT manipulating them. This causes problems for identifing and producing those pesky letters which are meant to stay stuck firmly flat - and one way up! A tool that is used to highlight the difference between how kids learn up until those pesky letter and numbers is through holding up a watch and asking 'what is this?' 'It's a watch', everyone cries. Then the watched is turned on its side and the question repeated. Of course it's still a watch not matter the direction, if it's bent, twisted or contorted: not the same for letters - anyway I think you get my drift. 

The program to help Erin was mostly fine, though maybe he was a little young as we couldn't use the computer program that came with the price the entire time because he was having such trouble with his letters. This was not the same program which cost thousands and they work on the letters with kids for two whole weeks. This was akin, but different.

I was desperate at the time that I contacted them. It was just before the official diagnosis and Erin was struggling so much in school - I was desperate to use his strengths. Unfortunately the woman who was our consultant undermined my confidence every time we met with her. Once Erin starting seeing his psychologist for CBT and I came along so that I could learn the techniques, I noticed how much better she made me feel about my ability to parent a child with AS and that this empowered me. The differences between these two women were stark - one positioned herself as the expert of Erin and the other gave me the power while also giving me the benefit of her expertise: we were working together for Erin rather than I being some kind of block to his potential. This stark contrast gave me moment to pause and I realised, that like so many of us who are desperate for the best for our children, I grabbed on to the first thing that offered me hope.

While our team of wonderful people does involve people who do not have masters and PhDs in child psychology I am much more careful now to learn about the person, their qualifications and talk to other parents; to do my research. Because, unprofessionalism in people who position themselves as 'expert' of your child can do much more harm than good.

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.

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.

sleepover

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.

Purple

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?"
"No"
 "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"

GOLD!

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 ;-)